"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17
Alzheimer's Disease is not eternal, but while we walk on this earth, it feels that way. No cure, no real treatment, and it's a trial and error method on what manages the behaviors. The promise that this is all temporary gives us wonderful hope. Billy will be Billy again someday - wholly. Until then, we survive, and we look for joy in whatever way we can see it.
Things have moved very quickly since my last post. Two people from the nursing home came to do an assessment one afternoon, and Billy was in quite a mood. I had picked him up early from the Cottage to take him to the doctor that day at 1:00, and from the time we left the doctor's office, Billy was anxious. His sundowning began about then, and when the ladies arrived to do the assessment, he was in no mood to answer questions. He did answer their questions finally, and he got a few of them correct. It was obvious early on that it is appropriate for him to be placed in their facility. I had thought I would move him at the end of January, but as things fell into place, I decided we might as well make the move sooner rather than later. Sometimes, it's best to just rip off the bandaid rather than pulling off a small amount at a time.
Monday, the 23rd was my birthday, and I will always remember my 54th birthday as the day I prepared to move Billy into a residential facility. The term facility sounds cold to me, but the dictionary defines it as a place built to serve a particular purpose. Billy now resides in the Lexington Place, but I prefer to think that he's at Alzheimer's Camp. Getting his things ready for the Lexington Place was like preparing him for camp. I labeled all of his clothes, gathered his toiletries, and packed up his medications. I enlisted the help of my brother-in-law to move a familiar chest of drawers into his room along with an extra television. A friend made a special quilt for his bed, and I hung familiar pictures on the walls around his bed. I told Billy none of this. I didn't know how to prepare him. He understands the words I'm saying, but he is unable to reason. It's similar to telling a child that something very unpleasant is for his own good. They don't care that it's for their own good....they just know they don't want the unpleasant something.
The next day after my birthday, Billy, Shelley, and I went to have breakfast together. I don't know why I thought we needed to have breakfast together. Did I think a big carb meal would make us all feel better? It did not. When Billy senses the end of an activity (like a meal), he wants to know what we are doing next. His default is to ask what time we go to church. As he approached the last few bites of his waffle, he asked me what time church service started. I told him we were not going to church, but Shelley and I were going to take him to a new place. Where? he wanted to know. I proceeded to explain that he would no longer be going to the Cottage, but he was going to a new place where he would have his own room. The lightbulb came on for him, and he said, I know what you're doing! And I'm not going. From there, it went downhill. He was angry, hurt, and he really didn't want to hear the reasons it would be best for him and for me.
As we drove to the place (I've replaced "the Cottage" with "the place"), he kept telling me he had been there before and knew he didn't like it. When we pulled into the parking lot, he asked where we were, and he reiterated that he didn't want to do this. Then he changed to "please don't make me do this." That was really difficult to take, and I cried most of the time we were there initially. We met with the director of nursing first to go over all of his meds. She's a nice person, and she tried to help, but she is not a warm and fuzzy person. After I signed the ream of papers she put before me, she said, "Let's go look at the unit." Unit is not an endearing term to describe where a person is going to live unless it's an apartment, so I will refer to it as the area. I left Shelley to help Billy settle in a bit while I went to fill out paperwork. A while later, after I had filled out paper work and returned to the area, lunch was being served. We worked to get Billy to eat, and we decided to leave him there while we went to run a few errands for items he needed. We were gone for a few hours, and when we returned we entered through the door that is only a few feet away from the door of the Alzheimer's area. We heard knocking on one of the windows of the double doors, and of course, it was Billy. I asked one of the nurse's at the nearby station how long he had done this, and she said, "Since you left." The nurse inside the area told us he had been pacing, knocking, and asking when I would return since we had left. He ate no lunch at all.
The next few hours were filled with much anxiety and introductions. We met the morning nurse who is there until 2:00 p.m., the afternoon/evening nurse who is there until 10:00 p.m., the aides who assist in so many ways, and the other residents of that area. There are 18 total residents in that area - 14 women and 4 men. Billy is definitely the youngest man, but I'm not certain he's the youngest resident of that area. One woman in particular looks to be in her 40s. Two of the women are screamers, and at least one is a curser. About four of them rarely speak, and when they do, they do not make sense. One of them sounds exactly like Billy's mom sounded - pitch, intonation, and stream of words. One is fairly coherent in her speech and just lives for her next cigarette. I've not seen her without her coat, hat, and gloves...always ready for the next smoke in the courtyard.
Shelley and I stayed until Billy had his dinner. We were able to sit in the small sitting area with a television, and we convinced Billy to eat about three-fourths of a hamburger. Leaving him that night was one of the most difficult things I've ever done. But I did break away from him finally, and I cried the rest of the night. Apparently he slept for only two hours that night.
The next day, I had a phone call from the morning nurse that she needed my permission to add some meds, and I certainly gave her that. I went to see Billy that evening, and I was able to get him to eat most of his dinner. After I left I got a call that he would not allow any of them to shower him, and in that area they are not allowed to shower alone. I told them I would assist them the next evening, and that seemed to help some. He's embarrassed about someone else seeing him undress. Each day gets a bit easier with the shower, but I still have to be present for it. I also had a call at midnight that Billy would not go to bed and was agitated and somewhat aggressive. The nurse had received permission to give him another dose of his anti-anxiety meds, and he was finally laying in his bed. I'm still not certain why I was called and what the expectation was, but when I checked the next day, his clinic notes showed that he had gone to bed at 12:05.
God has answered so many prayers this week in such a positive way. Each day has been a bit easier with Billy. Thank you for your prayers...they are heard, and they are felt. Please continue to pray. I'll give more information in the next post. God bless the readers and sharers of this blog. My love to you all.
Dear Kathy,
ReplyDeleteI love you and a praying for all of you. I cannot imagine how difficult all of this is for everyone. I remember so vividly the afternoon I left my mom for the first time. It was so hard. Leaving my husband is beyond my comprehension. I know to the marrow of my being that the Lord is very near and will carry you through this transition. You are amazing.
Kathy,
ReplyDeleteI cannot even imagine what you are going through. As I read your post, it reminded me of the time I had to leave Mike in the Geriatric Psych ward for medication adjustment. It was the worst time of my life. I will pray for you to stay strong and for Billy that he adjust well to his new home. I'm sure things will work out.
Karen,
DeleteI left a comment on your blog tonight, and I can't imagine how hard this is for you. I remember you talking about leaving MIke for a few months for his meds and aggressive behavior. Each day is a struggle, but I know Billy is getting some much needed care in a loving environment. When he is finally qualified for Medicaid, we can re-evaluate his placement to determine what is best. God gives me the strength to get through it with peace of mind. My prayers are with you as you go with Mike through what seems to be his final journey to a place where he will be whole again.
Oh, I've cried as I read your story, it certainly hits home for me. I hope and pray for you and Billy that each day will get better.
ReplyDeleteI had to place my husband in a long term home on January 2nd. And, like you, it was the hardest and saddest thing I've ever done in my life.
My home is so empty without him, but I'm sleeping almost all night for the first time in a long time, and I feel confident in my difficult decision ......
David is adjusting to his new home and I'm so thankful for that........
Keeping you all in my prayers for peace and new adjustments.
Dear Kathy my heart breaks for you and the family I know this is hard, when we had to place Daddy it was so hard but I cannot imagine having to leave my husband I will continue to keep you in my prayers and ask God to give you and the family strength and peace and for Billy's caretakers to be compassionate and gentle and that God will calm his troubled spirit. I wish I could tell you it will get easier but that would not be true, just remember that if the roles were reversed and he could tell you what is best for him, he would encourage you in your decision and tell you to be at peace with it. God bless, Darla Gay
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