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.]
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