Sunday, June 3, 2012

Things Lost

I've debated with myself this week. How much reality do I want to share in this public forum? I've shared openly about many things, and I've kept some of the details private because they seem too personal. When I started this blog, I wanted to keep friends and family updated on Billy's condition, and I wanted to raise the awareness of Early Onset Alzheimer's Disease. The current term is Young Onset, and I think that is because some people confuse Early Onset with Early Stages, and the two are completely different. I know that I have raised the awareness of this disease for some, and in that in that vein, I share. 

So much is lost with Alzheimer's. At the beginning of this disease, memory loss was the most noticeable of the AD symptoms. As it progressed, Billy lost his confidence. He questioned his ability, but he also denied the severity of the issues he faced. Denial was one of his coping mechanisms. Along the way, he lost his career, his freedom to drive, and he lost his usually calm laid back nature. Although he did not lose friends, he lost the ability to maintain relationships. One of the hardest things to watch is your loved one lose his dignity. Those of us who love Billy (and we are many), overlook these things, but it's still a loss of dignity for him. The only thing that makes it bearable is that I don't think he realizes the extent of it all. When Billy entered the nursing home in late January, Billy could feed himself and he was continent. The nurses and aides assumed he was not, so they started having him wear pull-ups, but they quickly learned he didn't need them. 

It's been a little over four months since he moved in, and his anxiety is much better. He still begins getting somewhat agitated and uneasy between noon and 1:00pm, but the nurse gives him Ativan, he calms down considerably. Once in a while, he remains uneasy for the remainder of the day, but it's rare. While his emotional state has improve, his cognitive abilities have declined rapidly in that time. His speech is noticeably different. He still talks, but his conversations are limited. When I ask him what all he's done that day, he usually says, "Everything." He is able to feed himself, but he needs prompting and help with the utensils. Sometimes, we feed him, and he's fine with that, but I want him to do it for as long as he can. When he stays in the unit to eat, they feed him, and sometimes he won't eat well. When I take him to the dining room, Shelley or I will put the food on his fork or spoon, lay it on the plate, he eats it. We are usually the last ones to leave the dining room because this process takes a long time. I understand why the staff feeds him during the day. They don't have time to go through the process we do. If the food is put in front of him, and he's left to eat on his own, he gets up and leaves the table or he plays with his food and doesn't eat it. Eating is an important activity with AD, and the staff makes it a priority. Fortunately Billy has some extra pounds to keep him going, but he can't continue to lose weight at the rate he's been going. 

A few weeks ago, I noticed an odor that I thought was coming from Billy, but honestly, it's hard to tell when so many of the residents are incontinent. I am blessed/cursed with an incredible sense of smell, and I quickly learned that Billy was the culprit. He had no idea. I hoped it was just a random occurrence, but over the next week, he had several "accidents," and it was time for pull ups. Changing him is what I imagine wrestling an alligator would be without the danger. He gets confused about what is happening, and he doesn't understand simple commands. It is less than dignified for him. For the nursing home staff, it's no big deal, and it's part of the progression of the disease. The majority of the residents in the unit are incontinent. But for us, it's one more loss. It also poses a dilemma for taking him out. He does pretty well going to church with us on Saturday evening and then to eat with family or friends. Up until a few weeks ago, he could go to the restroom by himself, but he really cannot do that now. My friend, Karen, went through this with her husband. He needed assistance for a good while before placement in assisted living, and she grew to appreciate places that had family restrooms. I'm learning they are not plentiful, and when I asked about one at church, I found that they don't have one either. I guess I'll cross that old threshold or restroom door when I'm faced with it. 

I've also had to let go of doing his laundry. I've done his laundry each weekend because I'm particular about how it's done. I also know how mixed up the clothing gets even though all his items are labeled. I often come in to find him in someone's sweat pants that don't belong to him. Even when he has clean labeled clothing in his closet, someone dresses him in those. I like for Billy to look nice; that was always important to him, and doing is laundry ensured that his things were cleaned and spots treated. I can only do it once a week, though, and he has accidents almost daily. The first week after this issue started, I brought home his clothes and was bowled over by the odor. This week was some better, but he ran out of clothes, so I've let that go. The nursing home has staff that does the laundry daily, and they pick up clothing twice daily. I know they can do the laundry as well as I can....I just hate to let one more thing be out of my control.

This disease changes everything about the person who has it, and the people who love and care for them. I know people who pray God will take their loved one home when they've  been in the final stages for so long. I am not at that point yet, but I completely understand it. I am so thankful for what we do still have with Billy. He recognizes his family and close friends. He still laughs and often interacts - he may not make sense, but he does interact. He remains one of the nicest people around. He thanks everyone for anything they do for him, including changing him. In case I've not mentioned it in a while, I hate Alzheimer's Disease, but I will always love this man who is changed by it.

Peace and love to all of you.


  1. Yes, I hate it too!! It is like the great thief, it comes in and slowly steals away these wonderful men we married! I know it's hard Kathy, so hard to watch. Praying for you today!!!!

  2. So much of this is what I am going through with my Dad, but I understand that in reality I can't understand what you are going through because my Dad is 85. I can't imagine finding out my husband had the same disease my dad has. My husband is 50. He's my everything. But I do understand the complexities of the disease as I take care of Dad. It sounds like they are at very similar stages. Saying a prayer for you.

  3. Love you Mom. We'll get through it. He's still got his smile and he's still head over heels for you.

  4. Keeping you in my thoughts and prayers. Alzheimer's is a steals so much of our loved ones..... I hate it too!!