JOAN’S BLOG – THURSDAY, DECEMBER 11, 2008 – LIVING WITH EARLY STAGE ALZHEIMER’S DISEASE – “HELP ME FOCUS ON WHAT I AM STILL ABLE TO DO!”

This particular blog is geared toward those in the earlier stages of Alzheimer’s Disease, but as always, I hope those of you who have gone through this stage with your spouses will weigh in with your ideas and opinions.

It occurred to me recently, in the midst of all the negativity present in my house over my husband’s anger at being “a prisoner” because he is no longer allowed to drive, that we (spouses, social workers, support groups, doctors) may be guilty of emphasizing what our AD spouses CAN NO LONGER DO, rather than focus on, and try to find activities that they CAN DO.

“It is not safe for you to drive; you cannot work at your former profession because it is too confusing for you; you cannot use the lawn equipment; you cannot handle the finances because you can’t organize or remember; you cannot make the medical or insurance phone calls, because you can’t listen, remember, and write at the same time. You can’t do this; you can’t do that. You can’t.

This “you can’t” attitude is fueling my own husband’s anger and depression. In turn, his anger and depression feeds his “I don’t want to”  attitude concerning whatever activity I suggest that I know he is capable of doing. To make the circle complete, his refusal to participate in anything I suggest leads to boredom and…………..anger and depression. Round and round we go.

Everyone’s spouse’s abilities and interests are different, but everyone, including those with early stage Alzheimer’s Disease, needs to feel useful and productive. The trick is to find WHAT they are capable of still doing, and what they will agree to do. In my husband’s case, he was always a workaholic, and he is a social animal. He thrives on being busy and interacting with other people. Whether it is Alzheimer’s Disease or the depression that has damaged the “self-start” button in his brain, the fact is that if I don’t plan and organize activities for him, nothing happens. That seems to be the case with all of his Alzheimer buddies.

Okay, I’ll organize and plan, but WHAT? That is our dilemma. He needs his own space, his own friends, and his own activities. He does not need to be dragged around with me. Actually, I don’t go anywhere to drag him. I am home working at my various web enterprises most of the time.

I guess I will start with our social workers, and ask if they have any ideas. He is in no way ready for Day Care. He functions far above that level. There has to be something he can do and somewhere he can go to feel useful that will utilize the skills he still possesses, rather than require those he has lost.

For those of you who are interested, you can read more about what early stage Alzheimer patients want for themselves, and how they wish to be treated, by clicking here. This is the report based on the Alzheimer’s Association’s local town hall discussions among men and women in early stages of Alzheimer’s Disease, held in communities around the country between July 2007 and May 2008. The overwhelming theme reiterated by these people was that they wanted “to be heard and fight to remain engaged as contributing members of their community. They wish to be included in everyday activities and remain social. They hope to have the opportunity to take advantage of the abilities they retain to make a difference by raising awareness among the public and advocating for change…..In their hearts, people with early-stage Alzheimer’s want to enjoy life and they demand that those without the disease assist them in achieving their pursuit of happiness to the fullest extent possible.”

©Copyright 2008 Joan Gershman 

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