One year before Dennis passed away, I knew we wanted to donate his brain for research. Much of what was happening did not make sense. There were too many unanswered questions. So while I was sitting by his side during the nine weeks of hospitalization, a good friend researched possible brain donor foundations.
What she found was there was no program in Texas and very few in United States who were even interested in taking the donation. There were of course medical schools interested in the cadaver but nothing was found providing research and possible answers. This was more than a little frustrating but for the time, I just let it 'rest'.
Then in the spring of 2011, I had the opportunity to interview for the Alzheimer Ambassador Program in Houston. During the interview, I was met by the Public Relations officer for the Houston Chapter. I found out I would have personal contact with targeted members of Congress building relationships with decision-makers and their staff and holding them accountable to their commitments to fighting Alzheimer's. He detailed the responsibilities and commitment involved.
The interview went well and I was accepted into the program. But before leaving that interview, the PR officer and I discussed personal experiences and concerns I had with trying to find a place for brain donation. To my amazement, he was excited to give me contact information for the Sports Legacy Institute.
[ SLI in Boston, Mass. was founded by Chris Nowinski and Dr. Robert Cantu in reaction to new medical research indicating that brain trauma in sports had become a public health crisis. Post-mortem analysis of the brain tissue of former contact sports athletes revealed that repeated brain injuries could lead to neurodegenerative disease known as Chronic Traumatic Encephalopathy.]
Mr. Nowinski had recently been in Houston and spoke to the Texas based delegation soliciting brain donations. In particular they were looking for individuals who were athletes with Alzheimer's/dementia. It was just a matter of making contact with the donor office and within less than a week, all the necessary documents were completed.
This is what I call one of those "God moments". It was such a huge relief to know that something good could come from all this. As an educator, I knew something might be gained by taking part in the research. Certainly Dennis had no head trauma that I was aware of but the Institute was excited to get their first "swimmer" donation. This all happened just 6 weeks before Dennis passed. Timing was everything! By the grace of God our family and others would benefit from what might be found.
So it was the morning of Denny's passing, the Cottage made all the necessary contacts to the funeral home and to the Sports Legacy Institute. Dennis was transferred first to the funeral home where his body was picked up by the Pathology lab assigned to this case. His brain was harvested and body returned in less than 12 hours so all normal arrangements for the family could be scheduled.
After the donation was received, Dr. Robert Stern (neurologist) with the research team contacted me for an interview. He explained the research process and sent critical release forms for all of Denny's medical records. After he received all the medical documents, he held an 90+ minute conference interview with me. We discussed detailed background questions, experiences, behaviors and all other information gleaned necessary to provide valid feedback.
It was explained that the research Dr. Ann McKee would be the leading pathologist dissecting and investigating our brain donation. She would take the donation "in the blind" not knowing anything about the person (only a number assigned to the specimen). Dr. Stern's role was to collect all the information available regarding medical treatment, behaviors and life experiences. When all necessary data was completed by these two researchers, they would meet to put together a report of their findings; how it connected both with the physical specimen and the medical background.
This total process took over eight months. Then I received a notice that a conference call with the research team was being scheduled. Our family (myself, Scott, Sondra, Steve 'Denny's brother') and Denny's best friend Bruce were all connected into the conference call. While waiting for the call that day, I was trying to stay calm but couldn't contain my anxiety. My biggest concern was for our children and grandchildren. There was NO known Alzheimer's in Dennis family history so where had this come from.
The phone rang. The conference started. Each of us had received a highly scientific three page autopsy report of findings. The goal was to go over the report and answer all questions. Much of what was shared in the beginning was lost to me with no scientific understanding of the terms. But then it came!!! This I did understand. Dennis did NOT have familial alzheimer's. He had trauma induced dementia.
Much discussion followed in answer to questions. What Dr. McKee shared was that she was sorry that they didn't have more answers. She said Denny's brain pathology brought up more questions than answers. She said his donation was critical to further investigation. They were extremely appreciative of our sacrifice -- but to me -- we were the one's who were appreciative. Dennis had always stayed in denial of the Alzheimer's diagnosis. He definitely had dementia though and what we found out was regardless the cause, his dementia would have been treated basically the same.
Our personal neurologist read the pathology findings and was not surprised. During the ten years of treatment, he was always concerned with the diagnosis (but obviously had to treat the dementia). He said they are learning so much more about CTE injuries and for Dennis it may have very well happened in Viet Nam. [Dr. McKee had mentioned that they have findings of CTE with military service in Iraq and Afghanistan]. But regardless of where it happened or how it happened -- I thank the good Lord my children do not need to be overly concerned with the genetics of Alzheimer's. It was a cloud they would have lived under forever had we not made the donation.
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On a personal note: I left the Ambassador interview knowing it was not the program I wanted to serve at that time. Being Ambassador is more of a legislative awareness and communication with legislators for further development of research. For me, I see my service to those fighting this battle as a spokesperson to bring awareness to family needs, hospital care, emergency response and community support.
Sunday, January 6, 2013
Friday, January 4, 2013
Hospice/Hospital
A clinical explanation of hospice most likely would look something like this:
Hospice is a special way of caring for people who are terminally ill — and for providing support to their family. Rather than providing treatment, the primary purpose of hospice care is to manage pain and other symptoms during the last six months of life.
Hospice care is provided by a team of specially trained providers, including doctors, nurses, home health aides, social workers, counselors, clergy and volunteers. Family is often very involved in the care.
Even though I had been told hospice care would be helpful with the care of Alzheimer's, I never quite understood the connection. And as I said in a previous post, I thought bringing these people into the care would me I gave up my 'control' and/or decisions for imminent care that was needed.
Hospice is a special way of caring for people who are terminally ill — and for providing support to their family. Rather than providing treatment, the primary purpose of hospice care is to manage pain and other symptoms during the last six months of life.
Hospice care is provided by a team of specially trained providers, including doctors, nurses, home health aides, social workers, counselors, clergy and volunteers. Family is often very involved in the care.
It took great patience on the part of the Cottage director and resident manager to convince me that the hospice team had to be part of our plan if Dennis would continue in their care. I felt bullied by their presentation and their intent. It was the social worker who bonded with me as she listened attentively to my concerns. One by one those concerns were answered. And even though I was not totally convinced -- I agreed to the additional help. After all, Dennis was definitely a challenge and it gave the staffers the extra help they needed.
I made it perfectly clear from the very beginning that I had to be contacted before any doctor visited Dennis and before any procedures and/or drug changes were made. I wanted to know the who, what, when and why of anything that was happening. That seemed reasonable because I was in the facility daily and I was available by phone 24 hrs a day. They honored that request and on the occasionally oversight of that requirement -- the situation or individual was addressed immediately. In fact, there was a time when a hospice doctor came to the Cottage and saw Dennis during a routine visit of residents. I was not aware of this visit but saw the billing. Because of our agreement, I brought it to their attention and the bill was reversed.
During the last 6-7 months of Denny's life, the hospice team was an incredible support for the staffers at the Cottage in monitoring and attending to Dennis' care. And an equally important part of their role was the relationship they made with me. I was not the easiest person for them to deal with but they provided an incredible social worker who walked me through the most difficult of times and helped me understand what was happening and why.
One of my greatest disappointments was that in the Cottage (after hospice was assigned), Dennis could no longer be sent to the Institute for Living but instead had to be taken to a new (and closer) Geriatric Psych Unit at the nearest hospital when his behavior could not be managed. This was the most poorly designed facility imagineable for a person with late stage dementia. First of all, with each visit he had to be admitted through the emergency room. Here they were told he had late stage dementia and of his combative behavior. He caused all kinds of "hell" in the ER and it took the stronger men to contain him in a patient 'cubbie' with high powered shots as we waited endless hours for a bed in the unit. Actually on his last visit, it was so bad they lowered the head of his guerney and raised the feet because even after the nurses had administered these shots (that would supposedly take down an elephant) he continued to kick and hit and try to get out of the bed.
Once on the floor, Visitors (family) could only come twice a week for a 2-hour period during the week and on Sundays. Dennis was with seniors who had varying psychiatric needs, therefore, he was forced into an institutional program that required all patients to attend group counseling sessions and other activities that were not suited for his condition. During each of those visits Dennis became even more combative as the staff changed daily and individuals were poorly trained to address his specific challenges. On top of that, the unit was constantly short of care attendants so Dennis was left in pajamas and wet or soiled briefs. On the days I visited, I personally fed him in a group dining area because if he didn't feed himself, he didn't eat. Obviously, Dennis frightened that hospital staff and quite honestly they frightened him. There comment to me was always that he was fine because it was a locked unit and he couldn't get out. That was their answer when I arrived and could not find him in his assigned room or community area. I begged the staff to visit regularly to see what was happening during his stays. They agreed with me that Dennis had to come back to the Cottage as soon as possible.
The frequency which Dennis was returned to that unit increased during the last few weeks of his life. My patience were absolutely dissolved by the insanity and insensitivity to the care provided. On one occasion, I was called to see if I would come to help with Dennis. No one could get him to bathe. And he would not let them put on the giant 'wrap-around' paper diapers. I responded immediately taking the briefs he was use to and feeling good that they had finally listened and would let me help. When I was 'buzzed in' to the locked unit, I went immediately to Denny's room. He was walking out of the shower. He was so excited to see me. "Oh there you are." Just as I was dressing him in his sleep pants a nurse came in to ask why I was there and I would have to leave. Well, as you might imagine, I lost it! I explained I did not break into the unit and that I had received a phone call to come. She demanded I leave citing the rules and I insisted I was going nowhere. She went off in a huff.
So of course in a few minutes, a security officer and a professional looking lady appeared at the door. I looked up and said, "I think I know why you are here." She introduced herself as the managing director over the hospital. I didn't give her time to speak further but interupted to explain all that had happened and why I was there. I explained the difficulties they were having and why it was so important for me to be there and help. She acknowledged my concerns and the situation and suggested only that in the future I call for a supervisor or administrator to express my concerns. As I look back now, I am sure it wasn't as smooth as that just sounded but I got my point across and stayed with Dennis for a few hours until he napped. When Dennis left that facility one last time, I vowed I would not rest until I had taken an educational stand in trying to help units like this make meaningful changes to the care of dementia patients. [Up to this date, I have had no success but I haven't forgotten ... as you can tell.]
This description of hospice care is foreign to what most of us would think of in a general sense. In this facility, it was an extra team of individuals dedicated to management of pain and other symptoms during the last six months of life. I choose to think that even though this was not the perfect experience with hospice ... Denny was not their normal patient care situation. He was a strong, active and otherwise healthy man who challenged anyone caring for him. I can honestly say I had to come to a point of trust! I had to trust no one was going to drug or dope Dennis to control him but there were safety concerns that could not be ignored. Just as my family could no longer stand by and watch the danger in home health care for me (and for Dennis), the Cottage and Hospice team had to take a stand in their decisions to keep everyone safe.
As difficult as this is to write about, it is in direct contradiction to the person Dennis was all his life (before dementia/Alzheimer's). I had met him when I was 15 and found him to be the kindest, most spirit-filled and stable person I had ever met. Just as I said in a previous post (when he beat my brother that Thanksgiving weekend) ... "if I am going to hurt the ones I love, then I should be dead." He was devastated by what was happening and the world was frightening to him.
I will close this post by saying that a few weeks after returning to the Cottage, early one morning at shift change, Dennis was found on the floor face down with knees drawn under him. No one knew how long he had been in that position but he was near death. His face was swollen and his was unable to help them move him. An ambulance was called and he was rushed to the hospital. During that short stay, our doctor determined that Dennis had rhabdomyolysis. As defined in Wikipedia, this is a condition in which damaged skeletal muscle tissue breaks down rapidly. Breakdown products of damaged muscle cells are released into the bloodstream; some of these, such as the protein myoglobin, are harmful to the kidneys and may lead to kidney failure. The severity of the symptoms, which may include muscle pains, vomiting and confusion, depends on the extent of muscle damage and whether kidney failure develops. The muscle damage may be caused by physical factors (e.g. crush injury, strenuous exercise), medications, drug abuse, and infections.
Over the past two years Dennis had suffered many of the causes for rhabdomyolysis. His muscular system took its first big hit when he wandered that long distance for 3 days. Next he had numerous hospital visits due to kidney failure, blood clots and infections that were addressed with IV therapies 21 days at a time. But with each setback, his system was breaking down to the point of no return.
We were advised Dennis would live no more than 7-10 days and we were at a point for no more treatment. It was going to be comfort care for his final days. Scott, Sondra and I waited patiently as Dennis was transported back to the Cottage. I made a quick call to Denny's best friend and he came immediately. The kids and I said our final words for the day and Dennis was listening but not speaking much. Then Bruce walked in the room.
When Bruce walked in the room, he walked to Dennis and reached out with a handshake and his old familiar greeting .. "Hey what's up partner?" Dennis came to life with a lunge towards his friend as they shared a barrage of expletives about who could beat who in the water. The kids and I watched in amazement as these two best friends shared what would be their final words. Within a short period time (just minutes), Dennis leaned back into the bed to rest. He was quiet. Bruce turned to us with a puzzled face and said, "I think I just wore him out with that arm wrestling exchange we just had. I wasn't sure if he was happy or mad at me." Of course we were accustomed to his familiar sense of humor with Dennis. It wasn't long thereafter that the hospice staffers were arriving to take over care of Dennis.
Later after everyone had left, Dennis was given his morphine and he was resting peacefully, I asked him if he still wanted to go see his mother and he responded without hesitation, "yes". I told him I thought it was a great idea and we were busy making arrangements for that to happen. He smiled. Thinking I would have 7-10 more days to say my goodbye, I could say no more. I remember lying awake that night crying softly and praying for mercy. I prayed for mercy for Dennis and myself. I could not begin to imagine watching this dying process for the next 7-10 days. As it worked out, we were called back to his bedside in the early hours of the morning. Before we even got there -- he had passed. He lived only 8 hours on hospice. As difficult as it was to accept, God had answered my prayers. His timing was merciful for Dennis and myself and our family.
Thursday, January 3, 2013
The Cottage ...Dementia Care Facility
On numerous occasions and with every doctor visit ... whether it was the medical doctor or a neurologist, I was advised to place Dennis in a care facility for about 3 years before I ever gave it serious consideration. I was fortunate that for those three years, my brother Doug was able to live with us and help surpervise Denny's care. But as time progressed, the agitation, aggression, and constant wondering was making it difficult for any one person to manage.
There were occasions when Dennis was re-admitted to the Institute for Living (dementia care specialized) to monitor the physical progression of the disease and determine what prescribed medicines would make his behaviors more manageable. Then even his beloved psychiatrist at the Institute recommended to me that it was time for placement in highly specialized care.
Up to this point it took a 'village' of family: Sondra (daughter), Ian (grandson) and Doug (my brother) to keep Dennis engaged with those who loved him dearly. But even the family outings that Sondra's family took that included her dad became increasingly difficult to manage.
Then during a visit in that October, Scott (son) pleaded with me to place his father in a care facility. His words were something like this: "It is bad enough we are losing Dad and we can't do a thing to stop it. But my concern now is that I don't want to lose you as well. I see the toll this is taking on you!" He went further to express his concern that I do this for the family and how the grandkids needed their grandmother. It was a sincere and emotional conversation that I was not expecting. Because quite honestly, I really hadn't given much thought to anything but taking care of Dennis. He was my focus!
In similar conversations with Sondra, we made plans for a placement. The psychiatrist had Dennis at the Institute and suggested it be best if we tell Dennis he was leaving the hospital for a care facility until he was better. She felt he would be more accepting of those words and that suggestion. Pine Tree Cottage was identified to be appropriate and convenient to family so all arrangements were made. All necessary arrangements were made with the Long Term Care Insurance so after 90 days, the monthly payments would be covered in full.
Before transfering Dennis, we then moved personal items to his new 'home'. I spared no expense at making his part of the room 'homey' and familiar. I had preferred he be alone (more on that later) but the director insisted he have a roommate for the initial enrollment period. In the middle of all this I came to the sad realization -- Dennis was never coming back to our home again. There are no words to describe what that felt like. During the night time hours, I waffled on the plan .... 'yes, no, maybe, not now, no never'! I had numerous conversations with our children and my siblings. I thought if I could get just one person to agree with me, I would not make this change. Much to my surprise (and for the first time), my sister became a strong voice for our extended family. She explained I would not like what she would say but there was no way she would agree with me regarding prolonging the placement. She said, "I am going to be your voice of reason. It is past time...way past time! You have taken such good care of Dennis long after anyone thought you should and we have all been quiet. But with the continued damage to his brain, the danger for your well being and that of others.. it is time." She hoped this would not make me angry because she definitely was my last hope for reasoning a delay for this move.
So with a heavy heart... Scott, Sondra and I took Dennis to the Cottage. He was greeted in a friendly environment that engaged him with staff and residents. He was confused but went along with my explanation that he would be staying there until he got 'better'. Of course his obvious question was "how long?"
We had been advised that when we left, we should not return for at least 7 days because he needed to relate to them. He needed to trust in their care which until this time was totally with me. So when it was time to leave, he wanted to go with us. The staff did a great job of distracting him with music and dancing while we were hurried out of the building. All I remember was how I was crying and was filled with remorse and sorrow almost a feeling of betrayal of Denny's trust and love.
It didn't take seven days before the staff was calling me to come for a visit. Dennis was struggling with the placement and was increasingly agitated when trying to escape. We spoke on the phone and I assured him I would come visit soon. When I did finally see him, I wanted nothing more than to pack him up and take him home. None of it made sense. He should be with me 'til death do us part'. The staff and my family were encouraging and gave me constant reassurance that this was the right thing to do.
For Dennis privacy was not expendable. The fact that strange women were walking him into a shower room and assisting him with bathing was not something he adjusted to quickly. On more than one occasion, I was there to witness him chasing the care attendant out of the shower. But with time, his trust of their care made that hygiene concern a non-issue. And of course that lead to wearing briefs (diapers for adults). Dennis did not fight the introduction to the briefs as I would have expected. He was actually comfortable with the non-invasive care the attendents would use to keep him 'clean'.
The months came and went: Thanksgiving, Christmas, New Years Even, his birthday, our anniversary, Valentine's day, St Patricks day, Easter and the rest. Most residents of the Cottage were 'prisoners' to their disease and this facility. I made it perfectly clear (under great objection) that I would be taking Dennis out of the Cottage almost daily for various activities. I took him to get hair cut, beard trim, manicure, pedicure, movies, dinner and visits with family/friends. He never wanted to go back but would do so when I explained that Doug had to go home and I was working --- so I needed him to stay their so they could care for him and I could work. He hated it (I am sure) but I believe he did it for me! He always wanted to do the right thing for me. Unfortunately, with Sondra it wasn't quite as simple. When she would return him back to the Cottage...he would beg her not to take him back. That was emotionally hard on her (as would be expected) but she continued to include him in as many outside activities as she possible.
[Funny story: Just a few weeks before Christmas, the Cottage accepted a new resident. She was a spry little thing who spoke like a sailor. Much to my surprise, it didn't take her long to latch on to 'her man'. During a routine visit, I walked up behind Dennis (sitting at a table) and leaned over to touch his shoulder and give him a hug. He was excited to see me and got up to give me a hug. All of a sudden I hear this loud and aggressive voice say, "Get your hands off my man." It took me by surprise so I just ignored the words thinking she wasn't speaking to me. As I reached for Denny's had to walk to a sitting room, she started to charge forward cursing and threatening that he was her husband and I better get my hands off him. WOW. I encouraged Dennis to join me at the Gazebo in the back courtyard. As we moved quickly out the locked door, I could hear her banging on the door and continuing her tirade. After taking some deep breaths, I said to Dennis, "That little lady thinks you are her husband." He smiled and shrugged his shoulders saying, " I know. She asked me to be her husband. I didn't ask her. I told her I don't have any money." This of course brought a smile to my face as his innocence showed in that comment. This attention for Dennis became so constant that the staff had to distract the lady when I came to visit. It always saddened me a bit when I would arrive to find him sitting with her (or her with him) and they would be visiting and smiling. It took time for me to get past my own sorrow and not having my husband home to realize if this 'friendship' made their days a little brighter, I would just accept that as God's will. When the little lady died a few weeks later.... I can honestly say I was a bit sad.]
It didn't take long for the staff, our family and myself to realize Dennis needed the continuous care and management of his disease. His aggression reared its 'ugly head' on many occasions with staffers, residents and even an occasional guest. This incidents placed him in the hospital for more frequent visits. Meds were adjusted, readjusted and adjusted again. He grew to love some of his care givers because the one thing he could always sense was if people genuinely cared for him. It was a particular incident when he head butt his Cottage manager almost knocking her out that cause management and myself great concern. This person was his strongest advocate and could always manage his mood swings up to that time. His aggression was more like a seizure-state of mind... explosive, short and then finished. Whether it was tossing furniture, throwing shoes at his roommate, throwing water in the face of another resident or refusal to take medicines; it all seemed to pass quickly.
Four months into Dennis' residency, management came to me requesting we put Dennis under hospice care. I was not in agreement out of my ignorance. I didn't know what a tremendous team approach this would provide as monitoring the dementia was becoming increasingly difficult. My biggest concern was that under hospice, I would lose all control over Denny's care. I was assured that would not be the case. With hospice, we had a nurse, social worker, doctor and extra care attendants as needed. In these final months, infections would cause an array of problems. His blood clots in the calves were never dissolved and that was increasingly a concern with the discoloration and swelling in his feet.
[I want to take this time to share my challenges when picking a care facility. In the beginning, I wanted to spare no expense in putting Dennis in the best possible environment. I was a bit hung up on appearances. I liked the formal dining rooms, private rooms, fancy dishes and the ability to set up like a little two bedroom 'apartment'. But what I learned very quickly was that these more elite facilities had strict rules about behavior. And I heard horror stories about residents being evicted if aggression was demonstrated. I knew going into this process, aggression and explosive potentially dangerous behavior was indeed the problem. So at that point I had to set my priorities on a facility that I could openly explain the challenges that would be observed....without concern that I would get a call to 'come get him'.
Through a friend, I found a facility that was an older cottage with semi private rooms only. Nothing was fancy but the director assured me that Dennis would be well taken care of and that they could address whatever happened. As director we had many discussions. I had his personal phone number. Regardless of what went wrong (and many things did), we were always able to talk and the issues were addressed. In one very heated discussion I remember equating our partnership as a marriage of sorts. I explained that we could 'divorce' and go our separate ways but I wanted to stay there and work things out. The director later shared with me what a tremendous learning experience it was for their facility since Dennis was one of their youngest and most physically active residents. Never before had they had family take a resident out of the facility on a regular basis. He explained that when most residents were placed it was because the family could do nothing with them. And for us -- he went on to explain they had great difficulty managing Dennis but that I could help them and it was all manageable. Dennis spent the last nine months of his life at the Cottage ...never to return to our home again. Rarely a night went by when I didn't lie awake wanting to go get Dennis and bring him home. The internal battle and conflicting conversations within my head were more than I could bear. All I can say is that faith in God and love of family helped me stay on this path.]
There were occasions when Dennis was re-admitted to the Institute for Living (dementia care specialized) to monitor the physical progression of the disease and determine what prescribed medicines would make his behaviors more manageable. Then even his beloved psychiatrist at the Institute recommended to me that it was time for placement in highly specialized care.
Up to this point it took a 'village' of family: Sondra (daughter), Ian (grandson) and Doug (my brother) to keep Dennis engaged with those who loved him dearly. But even the family outings that Sondra's family took that included her dad became increasingly difficult to manage.
Then during a visit in that October, Scott (son) pleaded with me to place his father in a care facility. His words were something like this: "It is bad enough we are losing Dad and we can't do a thing to stop it. But my concern now is that I don't want to lose you as well. I see the toll this is taking on you!" He went further to express his concern that I do this for the family and how the grandkids needed their grandmother. It was a sincere and emotional conversation that I was not expecting. Because quite honestly, I really hadn't given much thought to anything but taking care of Dennis. He was my focus!
In similar conversations with Sondra, we made plans for a placement. The psychiatrist had Dennis at the Institute and suggested it be best if we tell Dennis he was leaving the hospital for a care facility until he was better. She felt he would be more accepting of those words and that suggestion. Pine Tree Cottage was identified to be appropriate and convenient to family so all arrangements were made. All necessary arrangements were made with the Long Term Care Insurance so after 90 days, the monthly payments would be covered in full.
Before transfering Dennis, we then moved personal items to his new 'home'. I spared no expense at making his part of the room 'homey' and familiar. I had preferred he be alone (more on that later) but the director insisted he have a roommate for the initial enrollment period. In the middle of all this I came to the sad realization -- Dennis was never coming back to our home again. There are no words to describe what that felt like. During the night time hours, I waffled on the plan .... 'yes, no, maybe, not now, no never'! I had numerous conversations with our children and my siblings. I thought if I could get just one person to agree with me, I would not make this change. Much to my surprise (and for the first time), my sister became a strong voice for our extended family. She explained I would not like what she would say but there was no way she would agree with me regarding prolonging the placement. She said, "I am going to be your voice of reason. It is past time...way past time! You have taken such good care of Dennis long after anyone thought you should and we have all been quiet. But with the continued damage to his brain, the danger for your well being and that of others.. it is time." She hoped this would not make me angry because she definitely was my last hope for reasoning a delay for this move.
So with a heavy heart... Scott, Sondra and I took Dennis to the Cottage. He was greeted in a friendly environment that engaged him with staff and residents. He was confused but went along with my explanation that he would be staying there until he got 'better'. Of course his obvious question was "how long?"
We had been advised that when we left, we should not return for at least 7 days because he needed to relate to them. He needed to trust in their care which until this time was totally with me. So when it was time to leave, he wanted to go with us. The staff did a great job of distracting him with music and dancing while we were hurried out of the building. All I remember was how I was crying and was filled with remorse and sorrow almost a feeling of betrayal of Denny's trust and love.
It didn't take seven days before the staff was calling me to come for a visit. Dennis was struggling with the placement and was increasingly agitated when trying to escape. We spoke on the phone and I assured him I would come visit soon. When I did finally see him, I wanted nothing more than to pack him up and take him home. None of it made sense. He should be with me 'til death do us part'. The staff and my family were encouraging and gave me constant reassurance that this was the right thing to do.
For Dennis privacy was not expendable. The fact that strange women were walking him into a shower room and assisting him with bathing was not something he adjusted to quickly. On more than one occasion, I was there to witness him chasing the care attendant out of the shower. But with time, his trust of their care made that hygiene concern a non-issue. And of course that lead to wearing briefs (diapers for adults). Dennis did not fight the introduction to the briefs as I would have expected. He was actually comfortable with the non-invasive care the attendents would use to keep him 'clean'.
The months came and went: Thanksgiving, Christmas, New Years Even, his birthday, our anniversary, Valentine's day, St Patricks day, Easter and the rest. Most residents of the Cottage were 'prisoners' to their disease and this facility. I made it perfectly clear (under great objection) that I would be taking Dennis out of the Cottage almost daily for various activities. I took him to get hair cut, beard trim, manicure, pedicure, movies, dinner and visits with family/friends. He never wanted to go back but would do so when I explained that Doug had to go home and I was working --- so I needed him to stay their so they could care for him and I could work. He hated it (I am sure) but I believe he did it for me! He always wanted to do the right thing for me. Unfortunately, with Sondra it wasn't quite as simple. When she would return him back to the Cottage...he would beg her not to take him back. That was emotionally hard on her (as would be expected) but she continued to include him in as many outside activities as she possible.
[Funny story: Just a few weeks before Christmas, the Cottage accepted a new resident. She was a spry little thing who spoke like a sailor. Much to my surprise, it didn't take her long to latch on to 'her man'. During a routine visit, I walked up behind Dennis (sitting at a table) and leaned over to touch his shoulder and give him a hug. He was excited to see me and got up to give me a hug. All of a sudden I hear this loud and aggressive voice say, "Get your hands off my man." It took me by surprise so I just ignored the words thinking she wasn't speaking to me. As I reached for Denny's had to walk to a sitting room, she started to charge forward cursing and threatening that he was her husband and I better get my hands off him. WOW. I encouraged Dennis to join me at the Gazebo in the back courtyard. As we moved quickly out the locked door, I could hear her banging on the door and continuing her tirade. After taking some deep breaths, I said to Dennis, "That little lady thinks you are her husband." He smiled and shrugged his shoulders saying, " I know. She asked me to be her husband. I didn't ask her. I told her I don't have any money." This of course brought a smile to my face as his innocence showed in that comment. This attention for Dennis became so constant that the staff had to distract the lady when I came to visit. It always saddened me a bit when I would arrive to find him sitting with her (or her with him) and they would be visiting and smiling. It took time for me to get past my own sorrow and not having my husband home to realize if this 'friendship' made their days a little brighter, I would just accept that as God's will. When the little lady died a few weeks later.... I can honestly say I was a bit sad.]
It didn't take long for the staff, our family and myself to realize Dennis needed the continuous care and management of his disease. His aggression reared its 'ugly head' on many occasions with staffers, residents and even an occasional guest. This incidents placed him in the hospital for more frequent visits. Meds were adjusted, readjusted and adjusted again. He grew to love some of his care givers because the one thing he could always sense was if people genuinely cared for him. It was a particular incident when he head butt his Cottage manager almost knocking her out that cause management and myself great concern. This person was his strongest advocate and could always manage his mood swings up to that time. His aggression was more like a seizure-state of mind... explosive, short and then finished. Whether it was tossing furniture, throwing shoes at his roommate, throwing water in the face of another resident or refusal to take medicines; it all seemed to pass quickly.
Four months into Dennis' residency, management came to me requesting we put Dennis under hospice care. I was not in agreement out of my ignorance. I didn't know what a tremendous team approach this would provide as monitoring the dementia was becoming increasingly difficult. My biggest concern was that under hospice, I would lose all control over Denny's care. I was assured that would not be the case. With hospice, we had a nurse, social worker, doctor and extra care attendants as needed. In these final months, infections would cause an array of problems. His blood clots in the calves were never dissolved and that was increasingly a concern with the discoloration and swelling in his feet.
[I want to take this time to share my challenges when picking a care facility. In the beginning, I wanted to spare no expense in putting Dennis in the best possible environment. I was a bit hung up on appearances. I liked the formal dining rooms, private rooms, fancy dishes and the ability to set up like a little two bedroom 'apartment'. But what I learned very quickly was that these more elite facilities had strict rules about behavior. And I heard horror stories about residents being evicted if aggression was demonstrated. I knew going into this process, aggression and explosive potentially dangerous behavior was indeed the problem. So at that point I had to set my priorities on a facility that I could openly explain the challenges that would be observed....without concern that I would get a call to 'come get him'.
Through a friend, I found a facility that was an older cottage with semi private rooms only. Nothing was fancy but the director assured me that Dennis would be well taken care of and that they could address whatever happened. As director we had many discussions. I had his personal phone number. Regardless of what went wrong (and many things did), we were always able to talk and the issues were addressed. In one very heated discussion I remember equating our partnership as a marriage of sorts. I explained that we could 'divorce' and go our separate ways but I wanted to stay there and work things out. The director later shared with me what a tremendous learning experience it was for their facility since Dennis was one of their youngest and most physically active residents. Never before had they had family take a resident out of the facility on a regular basis. He explained that when most residents were placed it was because the family could do nothing with them. And for us -- he went on to explain they had great difficulty managing Dennis but that I could help them and it was all manageable. Dennis spent the last nine months of his life at the Cottage ...never to return to our home again. Rarely a night went by when I didn't lie awake wanting to go get Dennis and bring him home. The internal battle and conflicting conversations within my head were more than I could bear. All I can say is that faith in God and love of family helped me stay on this path.]
Wednesday, January 2, 2013
Nine Weeks ...
It was early in June 2009 when I woke to find Dennis on the floor doubled-up in pain. He could not get up and was bent over. I knew I needed help moving him so I hurried to the phone to see if a neighbor could come. By the time our neighbor arrived, I knew I had to get Dennis to the hospital. This pain was beyond anything that I had seen him experience in the past.
When we got to the emergency room, the tests were ran and nothing was determined to be the problem. It was a puzzle so he was admitted for observation and further testing. He had to have a contrasting cat scan or ultra sound or both -- I can't remember which. When he was returned to the room, we sat quietly until the doctor could come in to talk with us. Within no more than 15 minutes after everyone left the room, Dennis went into respiratory arrest. I called for help immediately and everyone came rushing in.
I was escorted to the hallway while the nurses and staff worked feverishly to get Dennis back. When they were able to successfully get him back, he was moved quickly to Intensive Care. While in the ICU, Dennis was on a ventilator for three days. We weren't getting much information as to the cause and what all was happening. Our doctor did say he thought there had been a medication that had caused the original respiratory arrest. It was a medication that Dennis obviously could not tolerate (when combined with the others he was prescribed with Alzheimer's).
During those three days, our kids and friends kept vigil with me. I contacted our parish priest to see if he could come to visit the hospital. He was out of town but assured me he would see us when he returned. Those days were weary. The kids dealt with differently as would be expected -- and of course, I was in a deep fog. Things were said. Feelings were hurt. The kids weren't speaking to one another when the door opened and in came Father James. We were all by Denny's bedside with deep confusion, fright and sorrow. Father did an incredible job of bringing us together as a family. In prayer we were able to once again focus on Denny's health crisis. The church no longer calls it the "last rites" but instead calls this prayer visit the annointing of the sick. When Dennis came off the ventilator and was able to speak with us, he said he remembered nothing about what had happened. And so it was on the fourth day, Dennis came out of ICU and spent a few days in this acute care facility before being transferred to a long term care facility further south from Pasadena.
Once transferred to the long term care facility, our real challenges began. Dennis had developed extensive bloodclots in both calves that now caused concern. Doctor ordered an IVC filter in his right abdomen area. He was not a candidate for coumadin or other blood thinnners so the filter was an insurance that blood clots would not travel to the heart or brain.
Our doctor had determined that it was the movement of a blood clot to Denny's abdomen that had caused the orginal pain the morning I found him on the floor. Through IV therapy it was believed he would regain his strength and be able to return home. That treatment period was about 4.5 weeks. For an alzheimer's patient in the hospital, that is a caregiver's worst nightmare. The very day we transferred Dennis, I saw that he was being put in a room a good distance from the nurse's station. I got into a heated discussion with the admitting nurse stating this was not going to be a good situation because of Denny's wandering during the night. This was a new and strange environment so I anticipated his confusion to increase (especially since the doctor was not continuing all the Alzheimer's drugs for that period of time). Once the nurse saw I was not going to back down from the "battle", she took me aside and said, "Please let your doctor know that he should order a one-on-one care attendant for 24 hours a day." She explained she was not suppose to tell me that but she understood my concerns and after a brief time with Dennis -- she agreed.
Well even with the care attendant, I spent countless hours at the hospital. At night I tried to get some rest only to be called at 1:00, 2:00 and 3:00 in the morning by the charge nurse. It was a variety of concerns from him wandering into people's rooms, to being combative, to taking apart his bedding and so on. There was medication they could give him but it had not been on the orders so I would travel to the hospital with the medicines hidden in my purse. Once I would get Dennis settled, I would return home making sure I let the doctor know that those meds must be ordered (PRN as needed). The calls were always a plea for help- We can't do anything with him. He won't listen. He wants to go home. He is looking for you! Looking back I can only relate this experience to that of a child looking for the parent. Hospitalization was frightening for Dennis when I was not by his side.
Dennis responded well to the IV therapy and physical therapy such that after 4.5 wks, I was able to bring him home. It was such a relief and we were both excited to be back home together. Dennis was weak but was cognitively doing well and was in good spirits.
Three days later, the pain returned. Called the doctor and he said for me to take Dennis back to the hospital immediately. This time a big part of the pain was kidney failure. Once admitted, it was determined that his kidney's were working only at about 15% capacity. The uroligist gave me little hope that this would be reversed without dialysis but the treatment plan was started immediately. During those days, the nurses cautioned me that this may be the "beginning of the end". I started thinking of hospice and the decisions that would have to be made. I was in a whirlwind of emotion trying to take it all in and do the right thing for Dennis. When our regular doctor arrived that morning, he said his office was getting calls about hospice. He asked if I had given up? I explained the conversations with nurses and hospital staff. He assured me he thought Dennis could pull through and that he wouldn't give up if I didn't.
My heart filled with joy as once again, Dennis was transferred to the long term care hospital. The kidneys responded remarkably well to the treatment but we had infection in the lungs that needed IV therapy once again. It was another 4.5 weeks of treatment before we came home. We continued with the one-on-one care attendant but the issues continued with managing Dennis' alzheimer's in this setting that changed personnel daily and had very little experience with caregiving for dementia patients.
When we were finally able to go home, Dennis was extremely weak. My brother came to stay with us to help out. He and Den would take little walks at first and then they eventually worked up to walking the one-mile path around our community lake. He resumed his bowling once a week and was actively involved with Doug ... attending Gatherings (for individuals with dementia).
During this last stay in the hospital, there was one day when I came in to visit him and it was relatively quiet. I was sitting next to the windows (where we had placed 10-15 family pictures). Dennis was glancing past me to a picture when he said, "If you stay for just a little while, you will meet Linda. She is my wife and you will really like her." I was taken back until I looked at the picture and realized it was a younger picture of me. In that moment, I realized he didn't recognize me but did recognize the picture. I just took a deep breath and assured him I would stay and that I would love to meet her. Then we went on about our morning routine.
What I learned from all this hospitalization time was that the family must speak loudly to maintain proper care for their loved ones. Stay with them as much as possible and when that's not possible make sure proper supervision is in place. In Denny's case, I had to give a voice for his needs and be an advocate to educate all those who worked with him regarding his family, his interests and various ways to engage him in conversation. I made a booklet that provided all care attendants and visitors with a background of experiences that would help them connect with Dennis. I was amazed how many people commented on how much they learned from that booklet.
Beyond the physical and emotional challenges faced during these hospital stays, I became alarmingly aware of how poorly staffed hospitals are when caring for dementia patients. I vowed to never forget the experiences we had and to somehow do what I could to draw awareness to the needs for the hospital and the families in this situation.
When we got to the emergency room, the tests were ran and nothing was determined to be the problem. It was a puzzle so he was admitted for observation and further testing. He had to have a contrasting cat scan or ultra sound or both -- I can't remember which. When he was returned to the room, we sat quietly until the doctor could come in to talk with us. Within no more than 15 minutes after everyone left the room, Dennis went into respiratory arrest. I called for help immediately and everyone came rushing in.
I was escorted to the hallway while the nurses and staff worked feverishly to get Dennis back. When they were able to successfully get him back, he was moved quickly to Intensive Care. While in the ICU, Dennis was on a ventilator for three days. We weren't getting much information as to the cause and what all was happening. Our doctor did say he thought there had been a medication that had caused the original respiratory arrest. It was a medication that Dennis obviously could not tolerate (when combined with the others he was prescribed with Alzheimer's).
During those three days, our kids and friends kept vigil with me. I contacted our parish priest to see if he could come to visit the hospital. He was out of town but assured me he would see us when he returned. Those days were weary. The kids dealt with differently as would be expected -- and of course, I was in a deep fog. Things were said. Feelings were hurt. The kids weren't speaking to one another when the door opened and in came Father James. We were all by Denny's bedside with deep confusion, fright and sorrow. Father did an incredible job of bringing us together as a family. In prayer we were able to once again focus on Denny's health crisis. The church no longer calls it the "last rites" but instead calls this prayer visit the annointing of the sick. When Dennis came off the ventilator and was able to speak with us, he said he remembered nothing about what had happened. And so it was on the fourth day, Dennis came out of ICU and spent a few days in this acute care facility before being transferred to a long term care facility further south from Pasadena.
Once transferred to the long term care facility, our real challenges began. Dennis had developed extensive bloodclots in both calves that now caused concern. Doctor ordered an IVC filter in his right abdomen area. He was not a candidate for coumadin or other blood thinnners so the filter was an insurance that blood clots would not travel to the heart or brain.
Our doctor had determined that it was the movement of a blood clot to Denny's abdomen that had caused the orginal pain the morning I found him on the floor. Through IV therapy it was believed he would regain his strength and be able to return home. That treatment period was about 4.5 weeks. For an alzheimer's patient in the hospital, that is a caregiver's worst nightmare. The very day we transferred Dennis, I saw that he was being put in a room a good distance from the nurse's station. I got into a heated discussion with the admitting nurse stating this was not going to be a good situation because of Denny's wandering during the night. This was a new and strange environment so I anticipated his confusion to increase (especially since the doctor was not continuing all the Alzheimer's drugs for that period of time). Once the nurse saw I was not going to back down from the "battle", she took me aside and said, "Please let your doctor know that he should order a one-on-one care attendant for 24 hours a day." She explained she was not suppose to tell me that but she understood my concerns and after a brief time with Dennis -- she agreed.
Well even with the care attendant, I spent countless hours at the hospital. At night I tried to get some rest only to be called at 1:00, 2:00 and 3:00 in the morning by the charge nurse. It was a variety of concerns from him wandering into people's rooms, to being combative, to taking apart his bedding and so on. There was medication they could give him but it had not been on the orders so I would travel to the hospital with the medicines hidden in my purse. Once I would get Dennis settled, I would return home making sure I let the doctor know that those meds must be ordered (PRN as needed). The calls were always a plea for help- We can't do anything with him. He won't listen. He wants to go home. He is looking for you! Looking back I can only relate this experience to that of a child looking for the parent. Hospitalization was frightening for Dennis when I was not by his side.
Dennis responded well to the IV therapy and physical therapy such that after 4.5 wks, I was able to bring him home. It was such a relief and we were both excited to be back home together. Dennis was weak but was cognitively doing well and was in good spirits.
Three days later, the pain returned. Called the doctor and he said for me to take Dennis back to the hospital immediately. This time a big part of the pain was kidney failure. Once admitted, it was determined that his kidney's were working only at about 15% capacity. The uroligist gave me little hope that this would be reversed without dialysis but the treatment plan was started immediately. During those days, the nurses cautioned me that this may be the "beginning of the end". I started thinking of hospice and the decisions that would have to be made. I was in a whirlwind of emotion trying to take it all in and do the right thing for Dennis. When our regular doctor arrived that morning, he said his office was getting calls about hospice. He asked if I had given up? I explained the conversations with nurses and hospital staff. He assured me he thought Dennis could pull through and that he wouldn't give up if I didn't.
My heart filled with joy as once again, Dennis was transferred to the long term care hospital. The kidneys responded remarkably well to the treatment but we had infection in the lungs that needed IV therapy once again. It was another 4.5 weeks of treatment before we came home. We continued with the one-on-one care attendant but the issues continued with managing Dennis' alzheimer's in this setting that changed personnel daily and had very little experience with caregiving for dementia patients.
When we were finally able to go home, Dennis was extremely weak. My brother came to stay with us to help out. He and Den would take little walks at first and then they eventually worked up to walking the one-mile path around our community lake. He resumed his bowling once a week and was actively involved with Doug ... attending Gatherings (for individuals with dementia).
During this last stay in the hospital, there was one day when I came in to visit him and it was relatively quiet. I was sitting next to the windows (where we had placed 10-15 family pictures). Dennis was glancing past me to a picture when he said, "If you stay for just a little while, you will meet Linda. She is my wife and you will really like her." I was taken back until I looked at the picture and realized it was a younger picture of me. In that moment, I realized he didn't recognize me but did recognize the picture. I just took a deep breath and assured him I would stay and that I would love to meet her. Then we went on about our morning routine.
What I learned from all this hospitalization time was that the family must speak loudly to maintain proper care for their loved ones. Stay with them as much as possible and when that's not possible make sure proper supervision is in place. In Denny's case, I had to give a voice for his needs and be an advocate to educate all those who worked with him regarding his family, his interests and various ways to engage him in conversation. I made a booklet that provided all care attendants and visitors with a background of experiences that would help them connect with Dennis. I was amazed how many people commented on how much they learned from that booklet.
Beyond the physical and emotional challenges faced during these hospital stays, I became alarmingly aware of how poorly staffed hospitals are when caring for dementia patients. I vowed to never forget the experiences we had and to somehow do what I could to draw awareness to the needs for the hospital and the families in this situation.
Tuesday, January 1, 2013
New Years Day 2013
Just want to start back blogging today for all the right reasons. On a personal level, writing is therapeutic. On a social level, I may have something to share that could help others through some of life's challenges.
The last time I wrote was December 3rd. My younger brother (age 53) passed away that day. He had prayed to God to take him HOME for more than a week. He was tired and his body was ravished with pain from the colon cancer. I flew to Iowa from Texas to be with Milt and his family but I had no idea how close we were to ending his struggle with disease.
Before I flew to Iowa, I anticipated the challenges of being with my brother and not letting it cause me emotional setbacks as I continued my grief recovery. So what I did was give "birth" to this blog. For me writing is therapeutic. I had a close friend help me set up the blog so that on a daily basis, I could keep on track with my recovery and start writing .. when I wasn't caring for or spending time with Milt.
I was blessed to not be working so I could respond quickly to a call for help. So on October 31st, I put myself in the direct path of imminent death once again. I was in Davenport only 3 days when Milt was taken to the hospital as a result of falling. He was hospitalized for a few days when it was determined he had lost the battle and would go home for hospice care.
Keeping in mind that I would never willingly walk towards being the primary hospice caregiver (during several days a week) -- it was all a bit frightening to me in the beginning. Milt's wife had to work 4 - 10 hr days a week to keep health insurance so I stepped out of my comfort zone to provide what care I could with the assistance of an incredible hospice team. So while I was needed, I got up at 6:00 am and was relieved at about 6:00 pm.
God has a plan. Sometimes we would run from or choose not to follow His plan if we have a choice. But I can tell you these weeks with Milt were nothing short of a "gift". The emotional connection that he and I shared during those four weeks were beyond anything I could have expected. You see, Milt and I had never been that close. I am eleven years older than him and since moving away, we never had much more than the normal family conversations and exchanges. He had always demonstrated a tough exterior that almost seemed cold and aloof. He demonstrated many of the same characteristics as our father and his father.
But what I experienced was seeing this rock solid exterior... with a heart of gold and a love for family ...that honored family values and faith. When it was just the two of us, we had fun remembering events of our childhood. He told me stories of family gatherings that I had missed. And above all, he made me promise to have a family reunion once a year where the guys could fish, the dogs could run, the children could run and play and the women could produce there best recipes to share. I had to laugh since I live in Texas. I told Milt, " I have a hard time just getting my kids and grandkids together". But I assured him I would do my best.
Milt's oldest daughter from a previous marriage had been somewhat estranged. Milt's wife looked past any issues that might interrupt Milt's and his daughters time together. It was her efforts that brought great healing and great joy to Milt as she made numerous efforts to come visit, then to come stay and help the family -- more importantly spend time with her dad, her step-mother and little sister (age 11).
Ironically, Milt had the ability to make others laugh and draw them to him. He cracked jokes! He had great one-liners! And even though he couldn't eat solid food, he always wanted us to gather around and eat in front of him. He explained that he had NO interest in food -- he just did not like being in that bedroom alone. On more than one occasion, there were no less than 10 people gathered in his little bedroom to watch a movie! Movies were something he enjoyed but it was exponentially better when it was with family.
Visitors came and went during the day! He loved the visits. He asked me to contact others at the schools where he had most recently worked to let them know his days were numbered. I did so. Some came to visit while others found it best to let the children sign cards and even send pictures. But it was indeed evident that Milt was loved by many. He had touched lives in an everlasting way.
Milt's passion had been dirt track racing. He came by it naturally because our father had started that enthusiasm when we were kids. He had not raced in several years but those friendships from racing were solid. It was that group of men who comforted Milt during these final days. Over an over I heard what a great guy he was on and off the track. He was known as the guy who could keep his head straight in the heated competitions and always present a class act. And if you have ever been around dirt track racing that is not usually what you would expect.
The final week I spent with Milt was tough. The morphine levels had to be increased measurably to try and manage the pain. It was not working. He would talk about seeing Dad at the end of his bed and wonder where he had gone. He would tell our younger sister, "I am ready to go but I thought Mom and Dad were coming for me. I don't understand." Then one day I heard him speaking quietly in a conversation with God. He was asking to go HOME. He wanted to make sure God would take care of his loved ones. He prayed the usual words of a man who is ready.
Then I heard him speak of individual children. I recognized their names as those of his former students. Milt worked as a para-educator being assigned to some of the more challenged students. He was praying that God should watch over them and keep them safe. And I can tell you this was extra special! As a retired school administrator, I thought of parents who would give anything to have a teacher working with their child or children who on their dying bed would include them in his final prayers. It was so touching and once again spoke volumes of the character of my brother.
One particular conversation Milt and I had was when we were talking of death, faith and Heaven. I asked if he would please let Denny know that I am doing well. He said of course I will! "You can count on it. And when I see Mom and Dad, I am going to tell them what a great job you did of keeping this family together." I was taken back and responded only that it took all of us to keep the family together. He replied, "No it was you." Even though I cannot agree with his comment, his sentiment will be in my heart forever. Even though I did not feel he and I were particularly close -- somehow I had touched his life at a deep level. And to that I say, "Thank you Jesus!"
For the last week of his life, Milt kept begging us to help him die. He would ask our brother to give him extra pills thinking that would help. His pain and anguish was great. He asked the hospice nurse and caregivers to please give him more to help him pass. He would say, "If you can't do it -- then get someone here who can." Never before had I heard someone beg to die. He was ready! He had faith! But it was God's timing not his that would prevail.
When it was evident that death was near, my youngest sister took time off work to stay with Milt and I during the day. It was such a blessing to have her with us. I was emotionally and physically teetering on exhaustion. As with all the other weeks and days, family and friends would come by as comfort for Milt. Now I could relax with Anita taking over primary care. I had long been concerned about Milt's youngest daughter being home when he passed, having to call everyone, and being worried I would do the 'wrong' thing.
God's perfect timing never ceases to amaze me. When he took his last breath, his wife and his oldest daughter were by his side. His youngest daughter was at school where she wanted to be. Anita and I were in the living room giving them time together. Then in an instant -- his last breath. We rushed to the room. I felt such an incredible relief knowing Milt was ready.
And then it happened! I started sobbing. I could hardly stand. My body was shaking and I could hardly breathe. I tried calling my daughter (no answer) then I called our son but could barely speak. First chance I got, I went to lay on a bed trying to get my body to stop shaking and to take deep breaths. During that same time, others were going through their own reactions to the death (and from what I hear it wasn't pleasant).
The next morning, it came to me what had happened. After all, I hadn't cried that hard when my own husband died. I had held it together and been strong so I could take care of business. I held it together so my kids would be proud of me for being strong. Those uncontrollable tears started as relief for Milt's passing and the earnest grieving of my beloved husband. I had held onto those tears for so long that they just came gushing out at the most opportune time.
What I can tell you today is that those weeks with Milt (being able to talk with him about faith, hope, love and dying) were instrumental in my healing process. Giving in to those tears lifted my heart (previously filled with sorrow) to a new awareness of life and living. I have been blessed by the love of my husband, my brother, my family and friends who were there for me!! Praise God.
The last time I wrote was December 3rd. My younger brother (age 53) passed away that day. He had prayed to God to take him HOME for more than a week. He was tired and his body was ravished with pain from the colon cancer. I flew to Iowa from Texas to be with Milt and his family but I had no idea how close we were to ending his struggle with disease.
Before I flew to Iowa, I anticipated the challenges of being with my brother and not letting it cause me emotional setbacks as I continued my grief recovery. So what I did was give "birth" to this blog. For me writing is therapeutic. I had a close friend help me set up the blog so that on a daily basis, I could keep on track with my recovery and start writing .. when I wasn't caring for or spending time with Milt.
I was blessed to not be working so I could respond quickly to a call for help. So on October 31st, I put myself in the direct path of imminent death once again. I was in Davenport only 3 days when Milt was taken to the hospital as a result of falling. He was hospitalized for a few days when it was determined he had lost the battle and would go home for hospice care.
Keeping in mind that I would never willingly walk towards being the primary hospice caregiver (during several days a week) -- it was all a bit frightening to me in the beginning. Milt's wife had to work 4 - 10 hr days a week to keep health insurance so I stepped out of my comfort zone to provide what care I could with the assistance of an incredible hospice team. So while I was needed, I got up at 6:00 am and was relieved at about 6:00 pm.
God has a plan. Sometimes we would run from or choose not to follow His plan if we have a choice. But I can tell you these weeks with Milt were nothing short of a "gift". The emotional connection that he and I shared during those four weeks were beyond anything I could have expected. You see, Milt and I had never been that close. I am eleven years older than him and since moving away, we never had much more than the normal family conversations and exchanges. He had always demonstrated a tough exterior that almost seemed cold and aloof. He demonstrated many of the same characteristics as our father and his father.
But what I experienced was seeing this rock solid exterior... with a heart of gold and a love for family ...that honored family values and faith. When it was just the two of us, we had fun remembering events of our childhood. He told me stories of family gatherings that I had missed. And above all, he made me promise to have a family reunion once a year where the guys could fish, the dogs could run, the children could run and play and the women could produce there best recipes to share. I had to laugh since I live in Texas. I told Milt, " I have a hard time just getting my kids and grandkids together". But I assured him I would do my best.
Milt's oldest daughter from a previous marriage had been somewhat estranged. Milt's wife looked past any issues that might interrupt Milt's and his daughters time together. It was her efforts that brought great healing and great joy to Milt as she made numerous efforts to come visit, then to come stay and help the family -- more importantly spend time with her dad, her step-mother and little sister (age 11).
Ironically, Milt had the ability to make others laugh and draw them to him. He cracked jokes! He had great one-liners! And even though he couldn't eat solid food, he always wanted us to gather around and eat in front of him. He explained that he had NO interest in food -- he just did not like being in that bedroom alone. On more than one occasion, there were no less than 10 people gathered in his little bedroom to watch a movie! Movies were something he enjoyed but it was exponentially better when it was with family.
Visitors came and went during the day! He loved the visits. He asked me to contact others at the schools where he had most recently worked to let them know his days were numbered. I did so. Some came to visit while others found it best to let the children sign cards and even send pictures. But it was indeed evident that Milt was loved by many. He had touched lives in an everlasting way.
Milt's passion had been dirt track racing. He came by it naturally because our father had started that enthusiasm when we were kids. He had not raced in several years but those friendships from racing were solid. It was that group of men who comforted Milt during these final days. Over an over I heard what a great guy he was on and off the track. He was known as the guy who could keep his head straight in the heated competitions and always present a class act. And if you have ever been around dirt track racing that is not usually what you would expect.
The final week I spent with Milt was tough. The morphine levels had to be increased measurably to try and manage the pain. It was not working. He would talk about seeing Dad at the end of his bed and wonder where he had gone. He would tell our younger sister, "I am ready to go but I thought Mom and Dad were coming for me. I don't understand." Then one day I heard him speaking quietly in a conversation with God. He was asking to go HOME. He wanted to make sure God would take care of his loved ones. He prayed the usual words of a man who is ready.
Then I heard him speak of individual children. I recognized their names as those of his former students. Milt worked as a para-educator being assigned to some of the more challenged students. He was praying that God should watch over them and keep them safe. And I can tell you this was extra special! As a retired school administrator, I thought of parents who would give anything to have a teacher working with their child or children who on their dying bed would include them in his final prayers. It was so touching and once again spoke volumes of the character of my brother.
One particular conversation Milt and I had was when we were talking of death, faith and Heaven. I asked if he would please let Denny know that I am doing well. He said of course I will! "You can count on it. And when I see Mom and Dad, I am going to tell them what a great job you did of keeping this family together." I was taken back and responded only that it took all of us to keep the family together. He replied, "No it was you." Even though I cannot agree with his comment, his sentiment will be in my heart forever. Even though I did not feel he and I were particularly close -- somehow I had touched his life at a deep level. And to that I say, "Thank you Jesus!"
For the last week of his life, Milt kept begging us to help him die. He would ask our brother to give him extra pills thinking that would help. His pain and anguish was great. He asked the hospice nurse and caregivers to please give him more to help him pass. He would say, "If you can't do it -- then get someone here who can." Never before had I heard someone beg to die. He was ready! He had faith! But it was God's timing not his that would prevail.
When it was evident that death was near, my youngest sister took time off work to stay with Milt and I during the day. It was such a blessing to have her with us. I was emotionally and physically teetering on exhaustion. As with all the other weeks and days, family and friends would come by as comfort for Milt. Now I could relax with Anita taking over primary care. I had long been concerned about Milt's youngest daughter being home when he passed, having to call everyone, and being worried I would do the 'wrong' thing.
God's perfect timing never ceases to amaze me. When he took his last breath, his wife and his oldest daughter were by his side. His youngest daughter was at school where she wanted to be. Anita and I were in the living room giving them time together. Then in an instant -- his last breath. We rushed to the room. I felt such an incredible relief knowing Milt was ready.
And then it happened! I started sobbing. I could hardly stand. My body was shaking and I could hardly breathe. I tried calling my daughter (no answer) then I called our son but could barely speak. First chance I got, I went to lay on a bed trying to get my body to stop shaking and to take deep breaths. During that same time, others were going through their own reactions to the death (and from what I hear it wasn't pleasant).
The next morning, it came to me what had happened. After all, I hadn't cried that hard when my own husband died. I had held it together and been strong so I could take care of business. I held it together so my kids would be proud of me for being strong. Those uncontrollable tears started as relief for Milt's passing and the earnest grieving of my beloved husband. I had held onto those tears for so long that they just came gushing out at the most opportune time.
What I can tell you today is that those weeks with Milt (being able to talk with him about faith, hope, love and dying) were instrumental in my healing process. Giving in to those tears lifted my heart (previously filled with sorrow) to a new awareness of life and living. I have been blessed by the love of my husband, my brother, my family and friends who were there for me!! Praise God.
Monday, December 3, 2012
VA- PTSD
So it was that Dennis applied for disability benefits from the VA based on the PTSD symptoms. The official documents were filed by Frank and we went on about our business -- thinking there was no chance of any benefits but at least we had put forth the facts.
It was about 5 months later that Dennis received a letter from the VA administration stating that his case was being reviewed. A short time later, he was scheduled for a psychiatric evaluation at Michael DeBakey Medical Facility in Houston. During that evaluation, Dennis had limited ability to give specifics about his experiences in Viet Nam. The interview did not last long. As we left that appointment, I was more than sure that his appeal would be declined. There was not enough information. The psychiatrist did however do a great job of evaluating what was happening with his current mental state and its connection to military.
Then six months later we received a letter. Dennis was awarded 50% disability and full medical benefits. In addition, he would start receiving a monthly allotment for disability. It was a total shock - surprise - unexpected! But at the time, it was timely as the medical needs were increasing for testing and monitoring the condition.
A series of initial appointments kept us traveling from one clinic to another in the huge medical complex. It was like working through a maze. Dennis was in unfamiliar settings with complete strangers as doctors. Looking back, it was stressful and disorienting for him. The pharmaceutical benefits were a huge help. Maintenance medications were prescribed and mailed to us at no cost. Extensive testing had not been updated for over 6 years so the new baseline was a help to doctors.
I remember going into a neurologist appointment. This cute little doctor came into the room. She was soft spoke and gentle in her introduction to Dennis. She took all the necessary information and then excused herself: "I will be back in just a few minutes. I need to go confer with our supervising neurologist regarding this case." So we waited - not so patiently for Dennis. Finally the door came open. The young doctor declared that she had someone with her that she thought I would know.
There he was..... Dr. K (This was the neurologist that I met on the plane traveling back from the Alzheimer's Action Summit in Washington, DC. Dr. K was returning from a neurologist hearing in the Senate. We struck a conversation discussing the terrible traffic getting to the airport. One thing led to another and we started discussing Alzheimer's and Dennis. He went into detail sharing his experiences and findings in the research. I came to find out that he was working with Dr. D at Baylor College of Medicine in her research program AND the neurology department at VA DeBakey. He had some suggestions for future treatment. I asked how I could get an appointment with him for Dennis. He was taking no patients at the time.)
Dr K shook Denny's hand. He told me he knew this case had to be me because of the story we shared on the plane. He said he was personally going to take over Denny's case. He changed a few meds adding some and taking away others. He gave me his personal cell phone number and assured me he would be available if needed.
There are no words to describe this encounter. God's plan was perfect!! As always... Meeting Dr. K on that plane was no accident. Him coming into that exam room was 'divine intervention'. Dennis now had one of the very best doctors available to monitor his progression into the more complicated and dangerous parts of the disease.
And so it was that we had the VA benefits for a few months before realizing that Dennis could no longer tolerate the medical maze of the VA. So when the next VA letter came ... there was no longer a concern for the facility benefits. Skimming the letter I saw the word ERROR. Goodness gracious what did this mean? I don't remember the exact wording but basically they were cancelling the benefits effective in like 60 days. At that point it was all a blur and my greatest fear was paying back any benefits he had already received.
I contacted the VA Liaison to report the new status. He assured me he would appeal at my request. I said I wasn't concerned of an appeal but wanted reassurance that I would not have pay back the previously awarded benefits. I did return the checks for the next two months but no further request was made by the VA ... the case was closed about six weeks before Denny's passing.
It was about 5 months later that Dennis received a letter from the VA administration stating that his case was being reviewed. A short time later, he was scheduled for a psychiatric evaluation at Michael DeBakey Medical Facility in Houston. During that evaluation, Dennis had limited ability to give specifics about his experiences in Viet Nam. The interview did not last long. As we left that appointment, I was more than sure that his appeal would be declined. There was not enough information. The psychiatrist did however do a great job of evaluating what was happening with his current mental state and its connection to military.
Then six months later we received a letter. Dennis was awarded 50% disability and full medical benefits. In addition, he would start receiving a monthly allotment for disability. It was a total shock - surprise - unexpected! But at the time, it was timely as the medical needs were increasing for testing and monitoring the condition.
A series of initial appointments kept us traveling from one clinic to another in the huge medical complex. It was like working through a maze. Dennis was in unfamiliar settings with complete strangers as doctors. Looking back, it was stressful and disorienting for him. The pharmaceutical benefits were a huge help. Maintenance medications were prescribed and mailed to us at no cost. Extensive testing had not been updated for over 6 years so the new baseline was a help to doctors.
I remember going into a neurologist appointment. This cute little doctor came into the room. She was soft spoke and gentle in her introduction to Dennis. She took all the necessary information and then excused herself: "I will be back in just a few minutes. I need to go confer with our supervising neurologist regarding this case." So we waited - not so patiently for Dennis. Finally the door came open. The young doctor declared that she had someone with her that she thought I would know.
There he was..... Dr. K (This was the neurologist that I met on the plane traveling back from the Alzheimer's Action Summit in Washington, DC. Dr. K was returning from a neurologist hearing in the Senate. We struck a conversation discussing the terrible traffic getting to the airport. One thing led to another and we started discussing Alzheimer's and Dennis. He went into detail sharing his experiences and findings in the research. I came to find out that he was working with Dr. D at Baylor College of Medicine in her research program AND the neurology department at VA DeBakey. He had some suggestions for future treatment. I asked how I could get an appointment with him for Dennis. He was taking no patients at the time.)
Dr K shook Denny's hand. He told me he knew this case had to be me because of the story we shared on the plane. He said he was personally going to take over Denny's case. He changed a few meds adding some and taking away others. He gave me his personal cell phone number and assured me he would be available if needed.
There are no words to describe this encounter. God's plan was perfect!! As always... Meeting Dr. K on that plane was no accident. Him coming into that exam room was 'divine intervention'. Dennis now had one of the very best doctors available to monitor his progression into the more complicated and dangerous parts of the disease.
And so it was that we had the VA benefits for a few months before realizing that Dennis could no longer tolerate the medical maze of the VA. So when the next VA letter came ... there was no longer a concern for the facility benefits. Skimming the letter I saw the word ERROR. Goodness gracious what did this mean? I don't remember the exact wording but basically they were cancelling the benefits effective in like 60 days. At that point it was all a blur and my greatest fear was paying back any benefits he had already received.
I contacted the VA Liaison to report the new status. He assured me he would appeal at my request. I said I wasn't concerned of an appeal but wanted reassurance that I would not have pay back the previously awarded benefits. I did return the checks for the next two months but no further request was made by the VA ... the case was closed about six weeks before Denny's passing.
Institute for Living
After the violent episode that Thanksgiving weekend, I started networking to find specialized help with management of the drugs being prescribed. At the time, I could find only one reputable program at the Mainland Medical Center, Texas City. It was not a geriatric psych unit but a well established dementia unit, Institute for Living, with a qualified team of professionals needed to assess and manage overall treatment and monitoring.
When I contacted the Institute, I was advised they would take Dennis if a spot was available AFTER all the legal action had been resolved. So after completing the judicial requirements with the case, I moved forward with our plans to have Dennis admitted to the Institute. I had been advised that the stay could take up to 21 days. Dennis was definitely not wanting to go to the hospital but I explained that after what happened with the police, we wanted to make sure his medicines were balanced properly.
The way the program was set up, we had to admit through the emergency room. Our son Scott and my brother Doug went with Dennis and me. That process alone made the admissions difficult. Dennis never liked hospitals and an emergency room is a lot of hurry and wait and wait and wait. The longer we waited, the more agitated he became. The three of us did our best to keep him distracted and calm. But by the time we got to the unit -- his patience with the whole thing was gone. He wanted no part of the admission process or staying there. With his increased agressive tone, a code gray was called. About four men appeared standing close by and then it happened -- Dennis began screaming and saying he wasn't stayin and to get him out of that place. He moved towards me -- then the team of male attendants apprehended him in a struggle. Scott sheltered me.. quickly taking me by the arm through the nearest exit while I could hear Dennis screaming in the background. Once we were clear of the unit and in a secure area an explosion of sorrow came over me. Scott kept saying it would be okay .. Dad would be okay .. and reassured me this was the right thing to do. Within about 10 minutes a male nurse came to let me know Dennis had calmed and he was begging to speak to me. He promised them he would not become violent again. When I walked into his room, he looked like a lost frightened child. He was begging his "mother" to take him home. I kept telling him how much I love him and that he would be okay. But I explained that his medicines were all messed up and the doctors were going to help so he could go back home. With a sad look, a hug, a kiss and the words I love you, I had to turn and walk away.
The first 7 days of his admission, I could not visit him. I could only call and check on how things were going. I found out that for the first four days they had to call the code GRAY for him several times. It was so bad he was frightening the other patients so they moved him to a more distant a room. The head nurse, Mike, (with 30 years psych experience) shared that he saw more PTSD than Alzheimer's symptoms during those days. I explained that the Alzheimer's had taken him back to memories of Viet Nam. He had become obsessed reliving those days and would talk in dreams as if he were there. We had noticed that any time he saw someone with a military hat on, he would go to that person and salute them... saying welcome back. Of course the strangers were always kind and accomodating when we nodded and 'apology' and hurried on our way.
Soon the neurologist told me about a Liason with the Veterans Administration (an advocate) who would come to the hospital and help apply for VA benefits...possibly using the PTSD actions.. for some medical and financial assistance. Frank was a great gentleman who did come to the hospital with his little laptop and printer. He got all the information he needed and filled out the affidavit that was later filed on Dennis' behalf. Even though he did not think anything would be approved -- he wanted to make a good faith effort to apply. (More on this later)...
For the next 14 (of 21) days, I traveled to Texas City for visiting hours. At times I would find Dennis so sedated he could barely communicate. Other times he would be sitting on the side of his bed (with everything packed daily) waiting for me to pick him up. With each visit, I tried to personalize his 'bare' room with family pictures, magazines and personal items from the grandkids. With staff reports weekly to update his progress, I found allies in finding the right 'cocktail' of drugs to help this gentle and spiritual man continue living his life with the highest quality possible. I would come in at times to find Dennis in the nurse's station eating snacks for the holidays. I asked if he should be there and they all said ... "sure we have adopted him." He was settled with them and felt safe.
What I realized after it was all behind ---- that the program would heavily drug Dennis in the beginning then slowly, very slowly make adjustments that best fit his condition while maintaining quality life. With scans, it was determined Dennis had a good amount of damage to the frontal lobe where aggression is controlled. We got answers and a professional team who coached us and supported us for continued management in the home.
We celebrated our family Christmas that year without Dennis. He would return home shortly after that celebration. With adjustments to previously prescribed medicines -- there was an additional anxiety medication to help keep agitation and aggression at a bare minimum. I was given instructions to be proactive with this medicine. I could plan for those times when there would be more stimulation and activity in our daily lives -- by giving a preventitive dose of medicine.
[Making the decision to take Dennis to this highly specialized medical unit was purely mine (with support from our kids). In fact, when we were in the ER at Mainland Medical, our personal physician called to check on Dennis. I explained we were admitting for complete evaluation. He was more than a little upset with me. We had difficult words and he certainly let me know he did not approve of that decision. That was upsetting to me because I believed it would give us a different set of eyes and a more current evaluation of the physical and mental progression of the disease. When the conversation ended, Scott assured me under no uncertain terms that this was indeed our decision and not to be concerned with that call.]
Faith, hope and love was all that carried me through those 21 days of treatment. I had faith the Institute would be current and specialized to control any future aggression. I had hope that I would be able to continue keeping Dennis at home with me (our doctor had advised against that). And love Dennis and our family regarding safety helped me stay with a decision that was extremely difficult. Just letting go of the day-to-day care was a huge step for me. In the end, I had to rely on God's love and sheltering comfort to see us through just another step in this journey.
When I contacted the Institute, I was advised they would take Dennis if a spot was available AFTER all the legal action had been resolved. So after completing the judicial requirements with the case, I moved forward with our plans to have Dennis admitted to the Institute. I had been advised that the stay could take up to 21 days. Dennis was definitely not wanting to go to the hospital but I explained that after what happened with the police, we wanted to make sure his medicines were balanced properly.
The way the program was set up, we had to admit through the emergency room. Our son Scott and my brother Doug went with Dennis and me. That process alone made the admissions difficult. Dennis never liked hospitals and an emergency room is a lot of hurry and wait and wait and wait. The longer we waited, the more agitated he became. The three of us did our best to keep him distracted and calm. But by the time we got to the unit -- his patience with the whole thing was gone. He wanted no part of the admission process or staying there. With his increased agressive tone, a code gray was called. About four men appeared standing close by and then it happened -- Dennis began screaming and saying he wasn't stayin and to get him out of that place. He moved towards me -- then the team of male attendants apprehended him in a struggle. Scott sheltered me.. quickly taking me by the arm through the nearest exit while I could hear Dennis screaming in the background. Once we were clear of the unit and in a secure area an explosion of sorrow came over me. Scott kept saying it would be okay .. Dad would be okay .. and reassured me this was the right thing to do. Within about 10 minutes a male nurse came to let me know Dennis had calmed and he was begging to speak to me. He promised them he would not become violent again. When I walked into his room, he looked like a lost frightened child. He was begging his "mother" to take him home. I kept telling him how much I love him and that he would be okay. But I explained that his medicines were all messed up and the doctors were going to help so he could go back home. With a sad look, a hug, a kiss and the words I love you, I had to turn and walk away.
The first 7 days of his admission, I could not visit him. I could only call and check on how things were going. I found out that for the first four days they had to call the code GRAY for him several times. It was so bad he was frightening the other patients so they moved him to a more distant a room. The head nurse, Mike, (with 30 years psych experience) shared that he saw more PTSD than Alzheimer's symptoms during those days. I explained that the Alzheimer's had taken him back to memories of Viet Nam. He had become obsessed reliving those days and would talk in dreams as if he were there. We had noticed that any time he saw someone with a military hat on, he would go to that person and salute them... saying welcome back. Of course the strangers were always kind and accomodating when we nodded and 'apology' and hurried on our way.
Soon the neurologist told me about a Liason with the Veterans Administration (an advocate) who would come to the hospital and help apply for VA benefits...possibly using the PTSD actions.. for some medical and financial assistance. Frank was a great gentleman who did come to the hospital with his little laptop and printer. He got all the information he needed and filled out the affidavit that was later filed on Dennis' behalf. Even though he did not think anything would be approved -- he wanted to make a good faith effort to apply. (More on this later)...
For the next 14 (of 21) days, I traveled to Texas City for visiting hours. At times I would find Dennis so sedated he could barely communicate. Other times he would be sitting on the side of his bed (with everything packed daily) waiting for me to pick him up. With each visit, I tried to personalize his 'bare' room with family pictures, magazines and personal items from the grandkids. With staff reports weekly to update his progress, I found allies in finding the right 'cocktail' of drugs to help this gentle and spiritual man continue living his life with the highest quality possible. I would come in at times to find Dennis in the nurse's station eating snacks for the holidays. I asked if he should be there and they all said ... "sure we have adopted him." He was settled with them and felt safe.
What I realized after it was all behind ---- that the program would heavily drug Dennis in the beginning then slowly, very slowly make adjustments that best fit his condition while maintaining quality life. With scans, it was determined Dennis had a good amount of damage to the frontal lobe where aggression is controlled. We got answers and a professional team who coached us and supported us for continued management in the home.
We celebrated our family Christmas that year without Dennis. He would return home shortly after that celebration. With adjustments to previously prescribed medicines -- there was an additional anxiety medication to help keep agitation and aggression at a bare minimum. I was given instructions to be proactive with this medicine. I could plan for those times when there would be more stimulation and activity in our daily lives -- by giving a preventitive dose of medicine.
[Making the decision to take Dennis to this highly specialized medical unit was purely mine (with support from our kids). In fact, when we were in the ER at Mainland Medical, our personal physician called to check on Dennis. I explained we were admitting for complete evaluation. He was more than a little upset with me. We had difficult words and he certainly let me know he did not approve of that decision. That was upsetting to me because I believed it would give us a different set of eyes and a more current evaluation of the physical and mental progression of the disease. When the conversation ended, Scott assured me under no uncertain terms that this was indeed our decision and not to be concerned with that call.]
Faith, hope and love was all that carried me through those 21 days of treatment. I had faith the Institute would be current and specialized to control any future aggression. I had hope that I would be able to continue keeping Dennis at home with me (our doctor had advised against that). And love Dennis and our family regarding safety helped me stay with a decision that was extremely difficult. Just letting go of the day-to-day care was a huge step for me. In the end, I had to rely on God's love and sheltering comfort to see us through just another step in this journey.
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