I invite you to log onto the home page - www.thealzheimerspouse.com, and read today's blog. After all my months of suffering through the Alzheimer rages, Dr. Richard Taylor (who has AD) wrote a letter explaining his Alzheimer anger. I think it is excellent. Read it and tell me what you think.
It was very interesting reading, he is an amazing man! I can understand how the anger and rages could be from fear in the beginning. Who wouldn't be afraid? But, it doesn't explain Lynn's violent rages that came later. Well after he was aware he had Alzheimer’s, long after his short term memory was totally gone. Lynn wasn't aware of his anger then, he truly had no control over it. The best answer I was given for the later stage anger and aggression goes back to AD being a disease of total brain destruction. Tragic....
Joan, thanks for this excerpt; it is valuable indeed. Dr Taylor says:
<<The anger was, and to a much lesser extent still is fueled by my fears: Fears of today and tomorrow. Fears of losing control. Fears of losing myself. Fears of being a burden to others I love. >>
I have said something very similar on one of these boards recently: I am convinced that the anger is fed by fear at the deepest level. "Fears of losing myself." In Dutch literature on AD i have often come across the term "the threatened self" to describe the sufferer's unconscious state of mind in the first stages of the disease. I have looked for a similar term in the US articles but so far have not found it. When I first read about this it clarified for me much of what I was seeing in my DH: he was feeling threatened in his very being and was therefore lashing out in his helplessness to do anything about it.
Last year my husband (along with another friend with eoad) was part of a panel discussion for a continueing education course for those in the nursing home industry. The topic of the conference was "Person Centered Dementia Care". Richard Taylor was the guest speaker and it was very interested to hear his veiwpoint on how he though those with dementia should be treated.
My husband read Richard's book "Alzheimer's from the inside Out" and did not like it. He felt that Richard was self absorbed, angry and bitter. On the other hand I enjoy Richard's newsletters. I do not agree with half of what he says it helps me see things from the other side.
To someone who has not followed Richard's writings, the excerpt I printed today is a good insight into the anger and fear. I have followed his writings from when his book was published right up until the present, which is why the current letter surprised me. Up until that letter, I thought (but I can only speak from my own perspective - from one who does not have AD) that he just was not willing to understand or accept that people could NOT relate to him as they used to. He knew AD had changed him, but he was very angry that people related to him differently. He wanted them to relate to and love the new Richard, no matter how different and difficult he was. He couldn't see how his behavior changed all relationships.With that letter, I think he showed an understanding he did not have before.
In any case, I think the letter is good advice to someone with AD who is still able to understand it, and as you say, a good view from the other side.
I've only dealt with major violence once, but this morning there was a bit of yelling which doesn't happen often. My husband is losing his language. He knows what he wants to say, but can no longer say it. And if I don't guess correctly from the context of the time and what else is going around he gets frustrated and angry.
If I was dealing with rage he would be on one of the meds that deal with rage. At this point it is just very occasional frustration and nasty language. But it is so rare that it got to me that he can't tell me I need to turn on the bathroom fan, but he can call me a nasty name.
Joan--Two points--When I used to ask my husband about his anger, and why it was directed at me, he would reply that he wasn't angry with me, he was angry with himself. I think that was his way of expressing his frustration with, and possibly fear of, the disease. So I think Richard hit it right on that point.
Second, it's interesting that Richard said his anger came from expecting people to treat him the way he would treat them if they had AD. This has been, and still is, a point I struggle with. When you are disappointed with someone's reaction to your LO's illness, it is so difficult (for me) not to think about how I would act if the shoe were on the other foot. It does make you angry if you feel people aren't empathetic or offering help, it takes a lot of willpower not to be judgmental. (I'm still working on that part!) So it was interesting to hear that someone with the disease has struggled with the same issue.
Trish--Steve and I met Richard at an event put on by Johns Hopkins and were in a "brainstorming" session with him. It is truly amazing to see him in action, not just giving a talk, but actually contributing valuable input at a meeting. He may be self-absorbed, angry and bitter to a degree (and is entitled to be), but we need people like him out there, shaking things up and spreading the word about EOAD.
My quiet, reserved, well mannered husband changed to being angry, rages, etc. with the advent of AD. It lasted for about two years. It was so hurtful to me and I am sure for him too. He was very proud of the fact that now he was now "outspoken" and that he would say what was on his mind. He made the rounds of our grown children and told them all the things he ever wanted to say. With his AD - he didn't get stories right, would say something to one child about another child that had never happened. He couldn't understand afterwards why "WE" stopped getting calls and they didn't want to visit anymore.
He has recovered from the anger and the rages and become his old sweet self - with the help of medicaion. It was very hard for the children to hear that he had AD, but harder for them to experience what looked like vengeful anger and not elderly "forgetfulness" that they thought AD was about. They have come around to understand the situation better, but still cautious - as I am. AD is just not fun.
I don't think that this part is easy to understand unless you have experienced it. I have been told a numder of times by well meaning folks, that this was his personality all along, but I just didn't see it. Not so.
Our three children still carry the baggage of past hurts. A great deal of undeserved venom was hurled at them. The issues will remain unresolved as husband is too far gone for any meaningful conversation. The rages often came out of nowhere and almost destroyed us. Time has not healed us. We might forgive-but not forget.
heart feels sad for those who have dealth with the rages and out of control spouses. the hurt never heals itself. or the innocents that were in the path. divvi
JeanetteB In Dutch literature on AD i have often come across the term "the threatened self" to describe the sufferer's unconscious state of mind in the first stages of the disease.
I like that thinking. It makes a lot of sense that deep inside there are still rages and anger at what is happening. It may be unconscious feelings, but I see no reason why they can't be there.
bluedaze: I encourage your children to forgive. Forgiveness is not for the person who hurt us, but for ourselves. When you have unforgiveness it is like a ball and chain dragging behind us. When we forgive, there is freedom. Your children need to forgive their dad because__________ ;they will have to define it. You don't forget, but the pain will go away.
I had to forgive my dad for all the cruel things he said and did to me - I could forgive because he was a dry alcoholic, bitter, old man. My mom I forgave for not being there for me. I had to accept that she did the best she could with where she was at and what she had at the time. I remember as my mom sat in a nursing home off somewhere in her dementia world I gave her a hug and told her I forgive her. It was healing for me - have no idea if she had any idea what I was saying. My dad, I wrote a letter to him telling him how I feel with all the anger and venom I had inside me, then burned it. Years later I went to his grave and told him goodbye.
When my hubby exhibits unexplained frustration, I tell him that I know that all this is really hard for him, that we will just have to deal with it, and that I will always be there with him. It really does seem to soothe him. And I hold him close when I say all this so he can feel as well as hear it.
Oh Linda Mc, you are so kind & loving. I am having such a difficult time with that. I still do love him, but I have such a hard time with the physical comforting. Ironically back in the day I was so fortunate to have a husband who was always openly affectionate. I loved that part of our marriage. Now he is still that way, but it has taken a strange twist for me because now he is like a needy child, not the man I married. He is constantly telling me that he loves me & that I am beautiful, but instead of making me feel all warm inside it actually grates on my nerves. Is that terrible?
No, ElaineH, that isn't terrible! The subject of your affections is not the same person he was BEFORE. Now he is that needy child, so your affection has changed. My DH is constantly telling me he loves me and I say it back to him. But it isn't the same kind of love. God help us all.
"God help us all" is right! This is one of the most difficult parts for me too...my DH is still affectionate, and I feel fortunate that he is, and I am able to say I love him too, but it is soooo different now. The angry stage of this illness was really hard for me to deal with and I didn't handle it correctly or lovingly...even tho I understood it was based on fear ( I only had to look in his eyes to see that); and although he was never physically violent towards me, I very often took it personally. He has changed so much...now he is so dependent on me, seems so afraid at times...I feel so badly for him...and so sad...
Oh bella, I could have written your post word for word. Who would have thought that our lives would have come to this, surely none of us here. I’m thankful for all of you who DO understand.
Gosh...Ditto to all the above It's the anger and frustration I find hard to deal with too...I know it's not DH, he was never like that. Just yesterday he had his Dr app. had the usual memory test..draw clock, remember three things, count back from 100 by 7..etc..and he failed the lot. So now the Dr has taken him off Aricept as it's not helping. He has to hand in his license, this will be the real test, and how do I handle that...that's the only thing he had left, all control will be gone for him...now he is so dependent on me. I see him declining a little each day. Last night he was packing a box of his stuff to take back home...where we lived 30+ years ago...would not have it that we lived here for the last 16 years! He is still affectionate, and tells me he loves me every night...Sometimes if it's been a difficult day I find it hard to say it back
Sorry if this is a bit off topic..just had to get it out.. Thank you.
have faith that although things are difficult both emotionally and some physical issues, there will come a time if they get to late stages where you will begin to feel the love and protection mode for them. they become so totally dependent and cant think for themselves or say anything ugly to you anymore. nor are they in disagreement as they are totally helpless. many of us in these last stages have said our love has changed in a different way but is still there. we feel protective of them and so sad for the way they have become. the hard and difficult feelings tend to dissapate and are replaced by compassion. divvi
I'm glad this thread was brought back. Lots of interesting and helpful points. Realizing it's their fear of what's happening to them that causes the rage is very eye-opening.
Divvi, we are to the late stages, but I never give up hope. After Lloyd having respiratory failure in April and needing to be resuscitated, I realize that any day could be his last. I don't want to do anything I will regret for the rest of my life after he is gone. So it it kindness and love to him and everlasting peace for me. He can still walk and can use the bathroom if I take him, but that is all. I feed him, shower him, dress him, take his teeth out, clean them, put them back in, brush the few he has left, wipe his butt, put his pills in his mouth, hold his cup. There are even days I have to pick up his feet to put them in the legs of his pants to dress him. I just take him in the shower with me. That is a battle because he doesn't like the water in his face. So I hold him and push my shoulder up under his chin and use the handheld to do his hair. Quite challenging!! Today I went to the pharmacy to pick up his first prescription of Marinol (dorabinol). He had his first pill tonite. The neurologist would not prescribe it so I went to our family doctor (who delivered my 41 yr. old daughter) and explained what I wanted and he wrote the prescription. When I got to the pharmacy, Our Part D would not cover it so I went to the parking lot and sat in my car and cried. Then I decided come hell or high water I would get that medicine for him. The cost is $400 a month, but with all the discounts the pharmacist could find, she got it down to about $270 per month. I just picked up 2 weeks worth and came home and called my father-in-law to tell him about everything. He said maybe the family could pull together to pay for the medicine if it proved to beneficial. I have really explored this drug. I have read that it inhibits the buildup of amyloid plaque in the brain and can be a help for migraines, restlessness, pacing, loss of appetite, weight loss, agitation, and aggression. Nikki's husband is taking it and she said it has improved his speech. What more could I ask for?