Writing hasn’t been a priority lately. You may have noticed. Well, you probably didn’t notice and that’s okay/ If you’ve ever read my blog it was ,most likely because someone you love has Alzheimer’s disease or dementia and will understand. I haven’t written because there really wasn’t much to say. Not much has changed.
While I wasn’t writing, I have continued to grieve over the loss of my Dad. No, he hasn’t died but he is every bit as gone as if that were true. Dad has lost a lot of ground. His communication is random and mostly a garbled mix of sounds that once were parts of words. He still smiles if you act like you told him something funny and on a really good day, you can tell him who you are and he will say something like “that[‘s nice”.
I have become obsessed with Daddy’s hands. I think of his hands often and remember the gentleness of his touch. Sometimes late at night I flash back to better days when his strong grip on my shoulder was as close to a hug as he could muster at the time. Mostly I remember him walking up behind my mother and scratching her back tenderly. It was how he said “I love you” to her without words.
My Dad wore two rings; one on each hand. He never took them off. One, his wedding band and the other a ruby Masonic ring that was passed down through the family when he became a Mason. Dad lost the ruby ring about a year ago and he has lost so much weight that we took his wedding band home before it too was lost. Even without the rings, I am still obsessed with Daddy’s hands. The hands are all that physically resemble this man who has held my heart in those hands for almost 60 years and oh how I miss him.
It’s funny how something as simple as the sight of those hands can trigger a lifetime of memories. And I find myself wondering if Alzheimer’s will one day steal those too.
It’s -11 degrees outside this morning. That’s too cold for any living creature to be outside in the elements.
As I sit here in my warm little home sipping a steaming hot cup of coffee, there is an elderly man lost. He has Alzheimer’s and has wandered from his home. All the local media outlets are airing his photo and asking the public to be on the lookout for him but the chances of him surviving are slim. My heart aches for his family and I pray that someone, somewhere, saw him and took him in. I pray he is safe and warm because this could so easily have been my Dad – before we got smart.
If you have a loved one with dementia or Alzheimer’s, please contact your local law enforcement. Ask if they are enrolled with Project Lifesaver. And if they are, get your loved one registered with them. To learn more, click the link below. If the gentleman mentioned above had been registered, he would be safely back with his family. It could have saved his life.
Christmas came and went and so has the first month of this new year. Dad continues to lose ground slowly. His hearing has faded and his vision has gotten worse. He sleeps more and paces less.Food no longer teases his taste buds and meals are just part of a routine. I wonder sometimes if it’s just the disease or the lack of stimulation. Dad now refuses to participate in group activity and prefers to just be left alone. His sense of humor is still intact and he loves to laugh with both the staff and his family. Laughter was prevalent in our family and even Alzheimer’s isn’t powerful enough to rob us of that.
There are days when I feel guilty. Sometimes the guilt is about not wanting to visit as often. Sometimes it’s about not taking care of him at home. I’ve learned to live with the guilt but it still hurts sometimes. My Dad didn’t deserve what Alzheimers has done to him but this disease simply does not discriminate.
When I started this blog, I hoped that in sharing the experience, others might be helped by knowing they weren’t the first to feel angry or sad or, afraid. After all this time I still feel all of those things from time to time. I cry easily over the smallest of things and am surprised when the big things don’t affect me at all. If I’ve learned anything at all it is that I have a lot more to learn and I am expecting 2015 to be full of hard lessons. We can’t hold this disease at bay much longer. That much is evident. The medications (Namenda and Aricept) gave us a bit more time with Dad and the Seroquel has helped to balance the fear and confusion that Dad must have felt as his senses lost their connection to rational thought. Now, it feels like we’re watching a light bulb burn out slowly. Every now and then there is a flicker of bright light and then it pales again. Each time leaves me wondering if it is the last and I am always surprised when I catch myself hoping so. The guilt comes in waves again,
If there is a bright light here it is that my Dad is content. He isn’t suffering. He doesn’t miss his family and friends but we sure miss him.
We’ve cancelled Thanksgiving. Well, that’s not entirely true. It’s more like e have postponed it. It seems that my brother’s family is passing around one of those early winter head colds and we don’t want to pass it to my Mom and Dad. So, if everything goes well, our Thanksgiving will be next weekend. We will also be celebrating Dad’s birthday at the same time.
I guess there is something positive to come out of Alzheimer’s. Since Dad has no concept of time anymore, we can make any day special. He will celebrate whatever we tell him we are celebrating and never doubt us.
For those of you reading this, I wish you a Thanksgiving of peace and the treasure of making one more memory. Be grateful, if even in some small way, because Alzheimer’s has shown my family that what you have today can be gone tomorrow. Blessings to you and yours!
I haven’t written in a while. Sometimes I just don’t want to deal with what Alzheimer[‘s has done to my Dad. Actually, it has changed our whole family and that makes me really angry sometimes. Today though, I just miss my Dad. Next week he will turn 86 years old. He won’t even know he had a birthday. I bought him gifts though but I ask myself why I did that. He;ll open them and declare how wonderful they are and then 86 seconds later he will be lost in that fog again.
Not much has changed since I last wrote. Dad has a bit more trouble eating and they have changed his diet a bit to prevent choking. He’s become more resistant to being groomed and he is pretty content to lay on a sofa in the day room and be left alone. My visits get shorter each week because he just isn’t interested in conversation.
It seems like we’ve been stuck in this time warp for a long time. It’s funny but I can’t even remember how long it’s been since we got the diagnosis. I think maybe seven or eight years. However long it’s been, it’s been too long. With all the recent news about Death With Dignity, I am certainly wondering why more states haven’t passed the legislation.
I’m a bit down today so I’ll keep it short. This doesn’t happen as often as it once did. We learn to cope, don’t we? I think it’s the birthday that has brought me here so it won’t last. It’s just that today I miss my Dad and I wish he knew it.
It hit me this week that Alzheimer’s is a disease that we will never fully understand. Sure, scientists in many parts of the world are studying the biochemistry and anatomy of the brain but there is one thing they will never be able to understand. No one, no matter how intelligent, will ever be able to climb inside the head of a person who has Alzheimer’s and know what they know. The person with Alzheimer’s will never be able to convey to us what it looks like or feels like inside their mind. But don’t you wish they could?
Watching my Dad slip a little farther into the world of Alzheimer’s this week left me asking myself what it must feel like to be him. He can’t tell me. No test will reveal the answers. I want to know if Dad is scared or if the fog has become “normal” to him. I don’t want him to be scared. It would break my heart.
Accepting that I cannot understand what Alzheimer’s feels like to my Dad is hard but my thoughts this week leave me feeling more strongly than ever that we have to find a cure. We must help fund the research in whatever small way we can. We have to make our elected officials aware of the impact this disease will have on our economy as our population ages and the incidence of Alzheimer’s or dementia increases. We must become advocates for those that have Alzheimer’s and for those who inner light will be extinguished in the future. We must!