Tuesday, February 15, 2011

You Gotta Laugh

When you deal with a loved one who has dementia, you really need to maintain your sense of humor. I do not find Alzheimer's Disease or any type of dementia to be funny, but I do find that when faced with the challenges of dealing with Billy's odd behaviors, I can either laugh, or I can cry. I do have days (not many of them, but a few) that the tears sit ready to overflow. But most days, I just try to find the humor in the things he says or does.

I've mentioned that Billy thinks he works at the Cottage which is the adult daycare where he stays. No matter what time I get there to pick him up, he's ready to go and usually pacing the floor. One of the caretakers teases him everyday, and when I walk in, she acts totally surprised that I am there to pick him up. It seems that he often says he hopes I don't forget him. As if that were possible. Shelley picks him for me sometimes, and when she asks him what he did for the day, he talks about teaching all day and how tired he is from it.

This morning, as we were taking our medicine and getting ready to leave, he told me he was having to take a test today. I asked him what the test was about, and he said he couldn't remember...he would have to check his book. I have no idea what book or subject, but he was certain he had a test. He speaks often of tests and important papers he has misplaced. I've learned to just go with it. Telling him they don't exist only frustrates him more. If I go along with him, and discuss what could have happened to the papers, he deals with it better.

Sleep has been a real issue lately. It is rare that he sleeps all night, and when he wakes up, he thinks it's time for both of us to get up. It may be 2:00, 3:00, or if I'm lucky 4:00 in the morning. He tries to get me up, and when I won't, he takes his shower and gets dressed - even at 3:30a.m. I find it really difficult to work all day with the fatigue I feel after having my sleep interrupted. So, I asked his doctor to prescribe something to help him sleep. I gave him 10 mg of Ambien at 9:30 tonight, and he is finally settling in at 10:45. I thought he would conk out at 9:45, but he seemed to do the opposite. He took a shower, shaved, and straightened his side of the bed for about 10 minutes. It's an OCD type behavior at bedtime....he straightens his covers over and over. He comes to my side of the bed and straightens my covers - while I'm in the bed. He fluffs his pillows about 20 times, and he finally gets into bed. He has spent as long as 30 minutes doing this straightening ritual. Sometimes I get a bit frustrated and try to get him into bed. It usually does not work, and tonight was no exception. I find that my sense of humor wanes after about 9:00pm.

I've been reading the blog of another wife whose husband was diagnosed with early onset Alzheimer's Disease (EOAD) at the age of 36 when their children were 7 and 9. Her husband is in the end stages of the disease, and she has kept him at home for the 10 years since he was diagnosed. I am inspired and amazed by her, and knowing what she is going through has made me realize the blessings we have.

I need to remind myself of those blessings...
I am so thankful that Billy can still groom himself (albeit slowly), he can feed himself, take care of his toileting needs, respond to questions, speak in complete sentences for the most part, express his emotions (which run the gamut many days), and he can still hug me. I take so many things for granted, and then I notice that certain things are no longer givens. Yesterday was one of those days I took for granted for many years. Even last year, he was a month early, but he bought me a dozen roses for my birthday/Valentine's Day/Mothers Day. That's a funny story for another post, but even as Valentine's Day was mentioned on the radio and tv this week, and hearts were abounding, it didn't register to him that it was a special day. Not that we ever made a huge deal of Valentine's Day...it all depended on what was happening at the time, but we did exchange cards, and he sent me flowers on occasion. I have to admit that I missed that yesterday. It was a similar experience on my birthday. It does make me sad that he won't randomly bring home flowers to me anymore.

I really appreciate that my brother in law was sensitive to that, and he wished me a Happy V Day. He also cooked a wonderful steak dinner for all of us, gave Billy and I a sweet Valentine, and he put chocolates on our bed. God has provided such a strong support system for us, and I will do my best not to take it for granted. I know how fortunate we are to be able to live with my sister and her family, and it is a blessing to be grateful for. I am.


  1. As I sit and read your blog I have tears streaming down my face. I admire you and Shelley so much for the way that you care for and love BJ. I know that he loves you both very much and if he knew how much you were doing to help keep his world as upright as possible he would be eternally grateful. AD is a horrible disease...I sat and watched my Nanny struggle with it and it was heartbreaking. I can only imagine that it is many times worse, watching someone so young struggle with it. I pray that one day soon they have a cure! You are all so special to me and I think and pray for you every day. I am so happy that you have your sister and brother in law to help you. What a blessing that is.
    I love you all

  2. Oh, Ashlee...I don't want to make you cry. Thank you for your sweet words. Billy still lets us know he loves us, and that's a redeeming factor right now. He seems to think Shelley is still in high school. He asked her the other day if she had any classes with her boyfriend. I thought it was cute, and she did not. :) You are right about us being so blessed. I really love that I get to spend time with Connor and Claire every day.