Wednesday, April 24, 2013

Alzheimer's Disease and the Five Stages of Grief

Alzheimer’s progresses slowly and subtly at first, and you don’t notice initially that anything is different. At one point, the ‘small voice’ of the subconscious occasionally comes out, but you tend to tune it out -- or I did anyway.


By Carol Blackwell
+Alzheimer's Reading Room 

Alzheimer's Disease the Five Stages of Grief

Looking back now with more knowledge about the disease than I had at the time, I should have seen some symptoms as early as 2004 (Bob was diagnosed in 2006), but I didn’t.

I truly had no idea anyone could have Alzheimer’s in their 60’s.

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Stages of a Caregiver
  1. Denial
  2. Emotions—anger
  3. Bargaining
  4. Depression
  5. Acceptance (Emotional and real)

Elizabeth Kubler- Ross wrote on death and dying and first mentioned the five stages: Denial, Anger (emotions), bargaining, depression and acceptance.

These stages also apply to other life events, particularly life’s changes. It applies to anyone diagnosed with any illness, and I think it absolutely applies to what those diagnosed with AD. It probably applies to the caregiver even more than the person afflicted with the disease.

I found it helpful to recognize my progression through the stages if only because it helped me understand that what I was going through was normal and I was not crazy. Of course, I could be crazy and am just rationalizing my feelings!

The stages are not linear —- we can cycle back to anger, or depression, for example, at a moment’s notice. Still I think we generally move to acceptance, although it takes quite a while.

1. Denial. I always thought the ‘denial’ stage meant that the caregiver knew the person probably had Alzheimer’s, but wouldn’t admit it to anyone.

That isn’t the way it worked with me.

I had no idea consciously anyway, that there was anything wrong. Other people told me later they noticed something wrong with Bob and thought I just didn’t want to mention it, but I didn't see it at all!

Alzheimer’s progresses slowly and subtly at first, and you don’t notice initially that anything is different. At one point, the ‘small voice’ of the subconscious occasionally comes out, but you tend to tune it out—or I did anyway. Looking back now with more knowledge about the disease than I had at the time, I should have seen some symptoms as early as 2004 (he was diagnosed in 2006), but I didn’t. I truly had no idea anyone could have Alzheimer’s in their 60’s.

I thought you had to be at least 75. I was very wrong!

Bob retired in 2005 and was given a medal for distinguished service. His extended family came from Atlanta for the ceremony. If anyone at that time had said, “Do you think he has Alzheimer’s,” I would have laughed. However, after the ceremony and his retirement speech, I remember thinking, “Thank goodness he did OK and made sense on his talk.” Then a sentence popped in my head. “Why on earth were you worried about that? He has been speaking in public
for 30 years.” Later the ‘little voices’ came more and more (“How strange that Bob forgot how to attach a word document or find an email” ) and I finally had to face that something was wrong.

2. Shock/ Anger. This stage caused the angst for me because the emotions I was feeling seemed to be ‘illogical’. But, then, when have emotions ever been logical? Calling Spock! I found myself ‘snapping’ at Bob and finally sat myself down and talked to myself about why I was acting that way. It occurred to me that I was actually angry at Bob for getting the disease. Of course, this makes no sense.

He dreaded the disease and did everything he could possibly do to prevent it. He had a job that was mentally demanding, he exercised, ate right, had low cholesterol, low BP, etc. Still, if I admitted it to myself, I thought he should have tried harder and, really, can’t he try and focus more, realize he is repeating himself, etc. etc. Talk about putting myself on a hamster’s wheel! Interestingly enough, the fact I acknowledged this anger toward him had a lot to do with helping to dissipate it.

Bob is trying as hard as he can. How can I get angry at that? It doesn’t help, just makes things worse!

Next, I got angry at God. I was angry at God for letting this disease exist and allowing Bob to get it. That isn’t logical either, but there you go. That stage passed also and I think God and I have come to an agreement. I don’t blame Him anymore and He helps us get through the day. I still have some hard questions to ask Him when the time comes, but I think we are working it out.

I do know that neither Bob nor I would be able to get through this disease without our belief system and the support of our church. A special thanks to the tenor section of the choir who keep Bob ‘on track’ during practice! That being said, I can’t say I appreciated the person who told me that “God gave Alzheimer’s to Bob so he could help others with the disease.” I don’t believe that at all---we could have gotten the message with a ‘burning bush’ or a simple email!
I will say I am still peeved at the doctor for the way she delivered the diagnosis, but, perhaps there is no perfect way to do this. I guess you want to ‘shoot the messenger’.

3. Bargaining. I had to think about what I might have been ‘bargaining” for and wonder if it is somewhat akin to ‘denial.” I really believed that a cure for AD was ‘around the corner’. I hoped the medicine would work—and it did wonders for a while. I thought that the clinical trial Bob was in would the THE ONE that would turn the tide and cure the disease. So, I thought, Bob would have the disease for while, the medicine and clinical trial would be a cure and then life would go back to normal. So far, bargaining hasn’t got me very far.

4. Depression. There isn’t too much to say about depression, although I will say that we all need to ‘grieve.’ I do know it is easy to fall into being depressed, but that is not helpful. To quote Ben Bissell, who wrote, “any change produces loss and all loss must be grieved.”

Alzheimer’s is a BIG loss and it isn’t even healthy not to grieve. It is so easy to push those emotions down because we are so busy getting through the day. But, if we do that, the emotions will come up in other ways, i.e. anger, etc. We will all have bad days.

The issue, according to Bissell, is ‘getting stuck’ in depression. If you get stuck there, you can’t move on to other stages and, really, you aren’t any help to yourself, your loved one with the disease or anyone else for that matter if you stay depressed. While it is necessary, even crucial, to grieve, if you get ‘stuck’ in depression, then the disease wins. Don’t let it win!

We need to live each day we can being realistic, but taking time to enjoy what we can. If you find yourself depressed too often, you might want to talk with your doctor. There is a study that showed that exercise helps to raise the mood of those who are depressed.

5. Intellectual Acceptance. At some point, you come to an intellectual acceptance of the disease. Both of us know that Bob has Alzheimer’s and we are committed to fighting it and to help others. We write about it, we speak about it, etc. They say you move from that to true acceptance. I can see that in cases of those with a terminal disease who cannot get better. Bob
and I don’t want to become too ‘resigned’ to the disease. I think we must believe that there will be a cure in our lifetime and I do believe there will.

I no longer feel a cure is ‘around the corner’, but I believe they are getting closer. I do know a large number of researchers are working on a variety of possibilities. I fear that ‘real acceptance’ means I won’t want to fight it anymore and both of us are committed to fighting it until it no longer exists, until there is a ‘world without Alzheimer’s. ‘

This journey through the stages took me close to 4 years. You may be better and faster at it than I was, but it isn’t a quick journey.

I would say ‘take it easy’ on yourself. It’s tough!

Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.


Original content Carol Blackwell, the Alzheimer's Reading Room