Nov 19, 2011

Alzheimer's Disease and One of the Secrets to Success

At the end of day you do the best you can. And therein lies one of the secrets to success.

By Bob DeMarco
Alzheimer's Reading Room

I received this email from a new reader in reference to the article -- Alzheimer's Disease The Emotional Roller Coaster Ride.

My response is included below.

Our reader wrote:

I so identified with the emotional roller coaster you described and was glad actually to hear that you still struggle. I say that only because you seem to have embraced this new role of caregiver so well and I can’t seem to do it.

I am very new to the full time responsibility and to be honest my Bob still has some good days. I rationally know the bizarre behavior is not him; but the disease but can’t help me from feeling angry and frustrated with him for it.

I used to “preach” when I was teaching and kids misbehaved, that it was so important for the kids to know that I did not like the behavior but I still liked them, that same separate thing. The difference was I didn’t’ live with those kids 24 hours a day!

Sometimes when I think I have years of this in front of me and that it will most probably will get worse, I wonder how on earth I will manage.

Your time and commitment to writing and sharing thoughts about this journey amaze me. I, of course, will continue to try to find some joy and some balance. I have friends, and am considering getting some outside help for 2 days a week. I can’t quite make that call to start that but know I must.

I took Bob to our Healthtrax to investigate getting him into an exercise program, he is very resistant. I thought of you and Dotty and the pool. I will try to persevere and give it a try.

Subscribe to the Alzheimer's Reading Room

My Response:

I read your email a few times and came to an immediate conclusion -- you are on the right track and I bet you are doing much better than you might realize.

Keep in mind, I have been at this for a long time and because of the blog I think about Alzheimer's all the time. I am always trying to figure out how I can improve our situation and how to deal with new problems and old problems that are reoccurring.

It took me years to develop the "right" mind set. I developed all kinds of mental images and thoughts to help remind me how to deal with all the situations that occur over and over.

I viewed myself as a Hamster. I viewed myself banging my head against the wall over and over, and finally I started envisioning the way I wanted things to be. Once I focused on the vision I was able to focus on the task at hand.

Your husband will get worse. Of this there can be no doubt. However, your situation may or may not get worse. What you are doing now and what you continue to do might make the difference on how you view your own situation in the years ahead. Your behavior and your actions will have a big effect on Bob's behavior. You set the stage as you go, this is my belief.

Behavior and quality of life are the keys. The memory is going to go. So focusing on quality of life is the key.

Overall, Dotty's behavior is much better now than it was in the first two years. Because her behavior is better it is easier for me to deal with situations that come along that are incredibly stressful and heart aching.

If you think you need some help -- go get the help now. It will only get harder to do in the future. You are really thinking in the right direction in my opinion.

As far as exercise goes. I continue to believe this is the single most important thing you can do.

You probably have not read this. I took Dotty into a gym for the first time in her life when she was 87. At first, I put her in a class for seniors (Silver Sneakers). These classes are very good. Exercise plus socialization. Establishing a pattern of getting out of the house is a good thing. Its important. This is why I chose the gym. I also wanted to get Dotty around as many people as possible. The gym helped accomplish several goals.

After a few months, I decided to start working Dotty out like I was her personal trainer. I worked her out "hard" within the constraints of her age. I made sure I got her heart rate up to the 102-107 range every time I put her on the treadmill. We did stop and start a bit. She walked 22 minutes each time. Sometimes it took 26 minutes to walk 22 minutes.

I also put her on the weight machines. Shoulder press, chest pull, leg machine etc. She did better than I could have ever imagined. Ever imagined if we had not tried it. Here is an odd one for you. She hated the treadmill and loved the weight machines.

Let me tell you. Dotty went to the gym kicking and screaming almost every time. She told me all the way there that she was not getting out of the car. On the way out. Dotty was a completely different person. A new and better person -- every time.

I believe that exercise changed our lives. This is where I started to observe and then understand that Dotty was capable of doing more. This encouraged me to do more things with her and lead me to a simple conclusion -- we would start living our life as we always had.

This is a good example of how you grow encouragement. Everything that was happening encouraged me. Over time I began to see obstacles as temporary. Temporary walls that we needed to climb over. Slowly but surely we moved ahead.

Here is my last and most important piece of advice for right now. Don't do anything for Bob that he can do for himself.

Let him DO IT.

Don't let anyone deter you. You'll know what Bob can and can't do. You are the ONE. So you decide and don't let anyone "crap" on your parade.

Don't let Bob deter you either. Like most Alzheimer's patients he will try and deter you. Ask yourself this simple question over and over -- if Bob didn't have Alzheimer's would he be resisting? The answer should fill you with the energy and determination you need to carry on.

At the end of day you do the best you can. And therein lies one of the secrets to success.

Related content.