I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. As promised, it does not deal with my grief journey - I am working on getting that up as a separate topic. Today's blog deals with the effects of denial by the well spouse that their husband/wife has Alzheimer's Disease.
My apologies for being quite blunt about waking people up to denial and trying to get them out of it, but I have seen so much of it lately, that I felt I had to speak up.
As I mentioned in the blog, the final straw for me was listening to a woman in her 80's in my grief group insist that, although her husband had Alzheimer's Disease for 14 years, he never changed, and she had no idea that he was going to die!
When DH was first diagnosed, I read every book about this that I could find. (There is a lending library at the Alzheimer's Association office in the nearby metro area, and it has a lot of books. I think I read every one of them.) It was tough going, but it was the only way I knew to prepare for what was to come. It helped to kill a lot of denial to see so many things in black and white.
However, I still wrestle with denial. I think: Yes, we're to this point--but surely (fill in the blank) will never happen. Or: DH will never (fill in the blank). And the real biggie--even though I've already made funeral arrangements, I still can't quite believe that I'm actually going to lose him. Walking in every morning and seeing him in his hospital bed is slowly eroding away that area of denial. Sometimes I think the little tiny areas of denial are what enable me to get out of bed and face another day.
But not to have any knowledge at all about this disease? What a terrible thought. That means that you are blindsided by each new thing that happens, and every single thing comes as a complete shock to you. And there are a lot of "new things" to live through when you are dealing with dementia. This disease is hard enough if you have some idea of what could happen, and have already given some thought to various challenges that might occur. And that doesn't even consider all the vital legal and financial things caregivers need to ensure get taken care of while there is still time. And it doesn't address how to keep someone safe if you don't even know that you need to keep them safe. Not learning about this disease is like taking out a loan with low initial payments, with a giant balloon payment at the end--and not even knowing that the balloon payment is coming. Of course, it's many times worse than that. Denial can exact a terrible price for both the caregiver and the person they are caring for.
Joan, like jan after his diagnosis I spent 3 years basically educating myself about the disease. I spent a ton of time reading and preparing myself for the worst. I knew he would die but as I reflect back now I see there was denial here and there thinking that if I did this or that that he would improve or that it would slow the disease which of course was not true. Although I had a lot of head knowledge about the disease, I was ignorant and in denial when it came to what the emotional and financial cost would be. I thought in my head I could just do such and such like contacting Medicaid and they would be totally understanding of my needs and all would go smoothly. Well that was not the case either. It was torture having to pay a lawyer and watching what little money we had evaporate. I was in denial regarding the emotional cost and the shear impact that my feelings had on my ability o function--going from constant tears to being happy to being sad and depressed and worst of all feeling totally hopeless and that my life was totally out of control. Oftentimes these feelings would all happen over the course of one day! It is true most of us really have little control in our lives but having gone through this I believe this is one reason I want to stick close to home now. At least at home I have familiarity and a routine which helps from again feeling that my life is unmanageable. I do see a lot of denial in people in my support groups although most do realize they will die. But at the same time they want to hold on to them and because of that will tend to give themselves false hope that maybe it will not be that bad. There is still one gentleman who is totally out of touch with his feelings. His wife has been placed for over a year and when he comes to the group everything is totally fine. I just shake my head. Thank you for bringing up this topic as it helped me to look at myself and see how I contributed to denial during the progression of the disease. Hopefully my experience can help others.
bobbie, Sometimes computers do not automatically update the website home page, so they show an older version of it. Go to the home page and click on the icon at the top that looks like a circle with an arrow. (It's next to the icon that looks like a magnifying glass.) That should refresh the page.
I have no idea what I did, but I got it. I live in a small town, no alz group here. Wouldn't you need to meet in a separate part of a building? Our caregivers group meets at the senior center. There are probable 4 couples that would be involved. Maybe the other wives and I could come up with something that would be fun.
I would have some form of denial when he would be completely demented one day and then clear and sweet another and functional the next. I couldn't sell his instruments (he was a professional musician) because the diagnosis might be wrong and he would need them, and a lot else. I went back and forth for a couple of years that somehow they had it wrong. He'd had a blow to the head cutting a thorn tree limb and the thorn stuck into his forehead and was infected for a couple of months with two courses of antibiotics, and a few months later a piece of it came out. (He had seen two doctors). This was the year prior to everything getting strange, two years before the Alzheimer diagnosis. I kept telling myself it wasn't really Alzheimer's. (And now I look back and even though we got a second opinion at a Memory Impairment center at a University hospital that eliminated all curable causes and narrowed it down to that diagnosis, still I wondered if the diagnosis was correct -now I look back and a lot of his behavior and even the progression and what he still remembers that he shouldn't sometimes seem more to fit FTD (yes, I know there can be mixed dementias). All it takes is a glimmer of his old self coming through - the lucky days the brain cells or stars align and a clear thought that is the person I so love comes thru, and I fool myself for a little bit, that somehow this will reverse. Sometimes I awake, and we have been together all night doing the things we always loved to do together in my dreams, and thats disorienting as heck. And then there is the hope for a cure- another reason I can't get rid of his stuff, or a house he designed we were heading to that sits empty and I can't maintain. Some part of me knows better, and some small part still thinks he might need it. He has early onset, is going to be 70, has had it at least 10 years and even though aphasic, can come up with speech sometimes that lets me know he still remembers so much that he shouldn't according to everything I read about ALZ. That too feeds denial. I only have little episodes of it now. Thats the form my denial has taken.
I to struggled with the "he seems so good today, then bad day". My DH is in the beginning of the end stage. I thought reading everything, knowing what's coming, I was prepared. Nope, fooling myself. I don't know if that was denial or just really seeing where he is. Well, guess that's denial. I have said it for months. But the doctor looking at me saying emphatically, "yes he is in late stage". I think my problem is, family has been in denial at every turn. Now they are sucking me in with them. They keep trying to find excuses for the change in him. Is it because you placed him, because you changed medicines, because he had to go to behavior hospital, maybe he had a stroke, uggghhh. No! It is the disease. Then I have such guilt from them. I even told them when they say these things how much more guilt I feel. Anyway, that is for another post. DH is in a hospital 1 1/2 hour away in Atlanta traffic. Very strict visiting hours. So have to take his mom with me to visit. She has 3 daughters, but again, I am being a caregiver now to an 87 year old. Conversation with them is coming today! Sorry venting too.
I finally realize I must be in denial as I keep bringing him home and watching for him to just be his old self. Not going to happen. Now there will be no more visits home. Maybe I will let go of the denial. You think?? Jackiem29 my family won't talk to me about Dad. Don't want to hear. Joan you are doing great. I didn't think I was in denial but, eyes open after reading your blog. Thanks.