JOAN’S BLOG – FRIDAY, JANUARY 29, 2010 – MAINTAINING YOUR SPOUSES’ DIGNITY

In preparation for Tracy Mobley’s first guest blog on Monday, presenting the perspective of the person with dementia (PWD), I have been reading her book – Young Hope, The Broken Road. The theme that keeps jumping out at me most prominently is her desperate need to maintain her independence and dignity as a human being, in spite of an illness that robs her of her memory and judgment.

This is a very tricky balance for the caregiving spouse. WE know our spouses’ limitations, but the disease often does not allow THEM to recognize their deficiencies, thus setting up a power struggle.

Tracy, and most of our spouses (CERTAINLY mine) want the freedom to get into their car and drive themselves wherever they need to go. She, and most of our spouses, want to be included in life decisions that were always made by husband and wife together. We are forced into the role of policeman/woman. We become the “enforcers”, confining them to “house arrest”, waiting for us to drive them where they need to go. We become the “decision makers”, setting up a situation where they feel demeaned because they no longer have a say in family decisions.

Considering the cognitive functions they have lost that are involved in driving (memory, quick decision making, visual perception, processing speed) we certainly cannot allow them to get into a car and risk killing themselves and others. Considering the cognitive functions they have lost that are involved in decision making ( reasoning, judgment, executive function), we certainly cannot allow them to make financial, medical, and life altering decisions. This is OUR perspective.

Imagine the situation from THEIR perspective. How would you feel if every decision from how the money is being spent, to where you will live, to what you are going to do for the day, is taken from you? I am sure I would be angry and lash out at the enemy – my spouse – the one who took these decisions from me.

Is there a solution to the PWD’s desire for independence and inclusion in decision making? How does one balance that desire against the necessity for us to keep them, our finances, our living arrangements, and medical decisions, safe and secure without constant screaming matches and violent eruptions on both sides?

I am not going to discuss the driving issue again – those who are unfamiliar with our nightmare can check the previous blog section of the summer of 2008 for those gruesome details. I am going to concentrate on the decision making.

My husband cannot make a simple decision about when to have dinner, never mind something as important as a medical or financial issue. Below is an example of a typical dinner decision conversation:

J: What time do you want to eat dinner?
S: Whenever you want to eat.
J: Are you hungry now? When do YOU want to eat dinner?
S: I don’t know. I’ll eat when you eat.
J: GRRRR! We’ll eat at 6.

I have solved this problem by offering him a simple choice. Now I say, “Do you want dinner at 6 or 6:30?” After a long processing period, he makes his choice. I feel this gives him a little sense of control.

Of course, we have legal paperwork in place for financial and medical decisions, but he does feel, in his words, “Busted down to Private when I used to be Commander in Chief”, when I make decisions without mentioning them to him. He has enough problems without feeling demeaned at every turn.

I have solved this problem by letting him participate as much as he is able. He has every doctor he visited last year written in his appointment book. He wrote down the mileage from our house to each doctor’s office next to the appointment. Yesterday, he went through that book very carefully, and transferred the mileage to a separate sheet of paper for our accountant to include in our tax deductions. His next job will be to go through the box with all of the prescription receipts and put them in order by date. He is very capable of accomplishing these types of “filing” jobs. It makes him feel useful and included, yet he does not have to make any “decisions” requiring complex cognitive processes.

I use the “either/or” – “two choices only” method quite often now:

Do you want to go to the movies at 4PM or 6PM?
Do you want roast beef or turkey?
Would you like to go to the pool or sit on the patio?

This method serves three purposes. It makes him feel that he has some control over his decisions; it makes it easier for him to decide when only offered two choices; and it takes the stress off of me.

I have not discussed this with Tracy – I am not sure if this is appropriate from her perspective, but certainly will ask for her opinion.

Be sure to log on Monday for Tracy Mobley’s first guest blog from the perspective of the PWD – The Person with Dementia. Her topic will be – Her feelings about family denial.

Feedback to joan@thealzheimerspouse.com

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