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.
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