Harmful to point out the gravity of my wife's memory problems?

Posted by pcetng0202 @pcetng0202, Jan 15 11:51am

My first post. First, heart goes out to those with far graver concerns than mine. I have watched my wife's short-term memory disintegrate over the last six months. I am coping reasonably well but concerned that she dismisses the problem as "old age" (refusing to acknowledge that neurologist's verdict and brain scans show it's much more than that). It has interfered with my efforts at maintaining her schedules of medications, appointments, obligations, etc. but she views my gentle guidance as "control" and loss of autonomy. I do not want to hurt her or to incite conflict or to have her think that my love for her has been diminished. Any guidance from those ore experienced than I will be appreciated.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@windyshores

@pcetng0202 I totally get where you are and have been there though with my mother not a spouse.

One nurse told me things would get easier once the dementia gets worse, which might sound shocking, but she meant that the control and autonomy issues ease up a bit.

In my mother's case, she never knew she had dementia and I would not tell her, ever. We maintained that it was just age. One time she had all her winter clothes for me to take to storage and it was November. I did tell her it was November and we laughed, thank heavens. Humor helped.

Putting whatever you can online for autopay is good. Are you using a medication organizer? Does your spouse insist on setting it up? There are some med organizers with alarms I believe.

For medical appointments, I would send a message beforehand to the doctor (or hand them a note when my mother wasn't looking). You can also make and track appointments on the portal. Assuming you are the primary proxy you can use the portal. If your messages are legal, the MD can write back, but otherwise they won't. You can still write the MD. Sometimes we had phone appointments and my mother would just say hello and then I would go to another room. My mother had to be present legally.

I did a lot of white lies over time. My mother wanted gin and I always took her to a store that did not sell it!!! I also would say "Let's do that tomorrow" and she would forget.

Money and checkbook were the biggest hassles in terms of control. It sounds like your wife may not be there yet for a fake checkbook. I let my mother fiddle with her checks and check register but I actually did everything.

I suggest checking for an in-person support group. In my state the local councils on aging run them. Some therapists are trained to advise us on this situation too. This is a big loss for you along with the subtleties of dealing with control and autonomy issues.

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With my father, I would write out the checks and then have him sign them. He still felt in control. I got a check book with "carbon" copies, so if he did write out a check I would know where it went and how much, in a NEWLY created checking account. I had to let the other old checking account stay open for 6 months, to see what might come through, he would write checks and not record them in the check register....

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My wife was diagnosed with aMCI about a year ago and is on Donezipril which seems to help. Her long term migraines have completely ceased with this medication but I do know the same concerns you mention. She now has smaller headaches occasionally but when these occur her condition worsens noticeably. Months ago we agreed to add a "parental control" app on her cellphone so I could monitor when she may try to download inappropriate apps (which she had done). Yesterday she forgot we agreed to this and accused me of trying to control her life. I had to calmly explain to her the situation and told her the app name on her phone was insenstive; i.e. I'm not her parent and she's not my child. She seemed to accept this.. for the time being.

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@1995victoria

With my father, I would write out the checks and then have him sign them. He still felt in control. I got a check book with "carbon" copies, so if he did write out a check I would know where it went and how much, in a NEWLY created checking account. I had to let the other old checking account stay open for 6 months, to see what might come through, he would write checks and not record them in the check register....

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This is the same course that I had to take with my mother. As her memory loss worsened, she would then phone in her payments on her bills on the day they were due, but often were very late. She finally agreed that it was best that I act as her "bookkeeper" and take care of the bills. It has worked out OK for us.

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An excellent source of information is" Teepa Snow's Positive Approach to Care - YouTube." I wish you the very best.

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@ekelly

An excellent source of information is" Teepa Snow's Positive Approach to Care - YouTube." I wish you the very best.

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Overwhelmed by serious setbacks for my wife and myself, I thank you for this reference and I thank as well all those who have made helpful comments on my query. I read--and appreciated all, though lacking the time to reply individually. Three emergency room visits for my wife have underscored her courage while intensifying our bond. Even "virtual" support is resolve-strengthening. We shall overcome.

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@IndianaScott

Hi, @pcetng0202 I was my wife's primary caregiver for her 14+ year war with brain cancer, which gave her many dementia-like symptoms, as well as significant physical complications.

I especially took note of your comment regarding the difficulty of being absent. The overwhelming anxiety my wife would experience when I was absent, no matter for how long or who was there in my stead, made it hugely debilitating to her, and thus even harder on me. Plus, we live in a smaller city where the supports some speak of were not available. This was why I discovered Connect and quickly advocated for them to add Caregiving to their groups. I loved the ability to login at any time and find some support.

I wish you continued Strength, Courage, & Peace

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Many times I feel very tight, what is the reason for this

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@aaliyah42

Many times I feel very tight, what is the reason for this

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I'm so sorry for what you and your wife went through. My forty-year old niece has brain cancer and I'm worried sick about her. She has two young boys and I can't imagine the effect of this on her family. This site is great for advice, which is very helpful, but maybe it's greatest benefit is finding sympathy and understanding from others who know.

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@1995victoria

With my father, I would write out the checks and then have him sign them. He still felt in control. I got a check book with "carbon" copies, so if he did write out a check I would know where it went and how much, in a NEWLY created checking account. I had to let the other old checking account stay open for 6 months, to see what might come through, he would write checks and not record them in the check register....

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@1995victoria Sounds so like my father! Most places now won’t take cheques so my father has now given me a power of attorney to pay his bills out of his account by internet banking. He has a row of clear plastic tubs lined up on the family room table where he eats all his meals. They are all clearly marked with what’s in them. The end one closest to him has unpaid bills. He’s pretty good at putting his bills in there and I pick them up when I visit him (minimum 3 times a week) or another family member will photograph a bill and text it to me. I then bring back the invoice and a copy of the receipt and together we put it in his paid tub. We do need to go through the tubs regularly to make sure he hasn’t put something in the wrong tub and we also check next to his chair that he hasn’t kept something close by him! I take him to the bank so he can use his cheque to draw cash fortnightly for his personal spends. So far this system is working well. He still feels he is in control of his money and is across his finances.

He’s pretty good at accepting his limitations. We don’t make a big deal about them either. We want him to feel comfortable with where he’s at and not anxious.

He can’t drive any more (he would get lost very soon after leaving home) and his reactions are no longer what’s necessary. He was very good at choosing himself to stop driving after we’d been warming him up to the idea of taking life easy from the passenger seat some years ago. We are all his chauffeurs when he wants to go anywhere.

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@isadora2021

@1995victoria Sounds so like my father! Most places now won’t take cheques so my father has now given me a power of attorney to pay his bills out of his account by internet banking. He has a row of clear plastic tubs lined up on the family room table where he eats all his meals. They are all clearly marked with what’s in them. The end one closest to him has unpaid bills. He’s pretty good at putting his bills in there and I pick them up when I visit him (minimum 3 times a week) or another family member will photograph a bill and text it to me. I then bring back the invoice and a copy of the receipt and together we put it in his paid tub. We do need to go through the tubs regularly to make sure he hasn’t put something in the wrong tub and we also check next to his chair that he hasn’t kept something close by him! I take him to the bank so he can use his cheque to draw cash fortnightly for his personal spends. So far this system is working well. He still feels he is in control of his money and is across his finances.

He’s pretty good at accepting his limitations. We don’t make a big deal about them either. We want him to feel comfortable with where he’s at and not anxious.

He can’t drive any more (he would get lost very soon after leaving home) and his reactions are no longer what’s necessary. He was very good at choosing himself to stop driving after we’d been warming him up to the idea of taking life easy from the passenger seat some years ago. We are all his chauffeurs when he wants to go anywhere.

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You're fortunate your dad is so cooperative. Best wishes to you and your family.

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Welcome to the best forum for getting answers to this horrible disease. I’m in a similar boat (married of 55+ years to an independent woman) but over the years I’ve gotten to read her moods and actions pretty good. I make sure I tell her I love her at least once a day and if I see her confused, I ask her for a hug. That gets her to relax and lose the stress I could see building up. I’ve taken over her medications and when they are due, I ask her to do me a favor ( then she takes the meds) . I’ve taken over all cooking, planning for appointments and driving (she lost her license) . Her biggest issue is the lack of independence. However, when she starts focusing on her lack of independence, I ask her for a hug and reinforce the fact that I like being with her 24/7. I have to sleep with my arm over her in case she gets up at night to leave. The toughest thing for me is when she asks “where’s my husband?” . That gets to me😢
We try to go to tai chi once a week and the local museum has a dementia meeting one a month that we use to go to but my wife doesn’t want to go anymore because of “all the people with dementia “. It’s a tough journey for caregivers but just remember all the good times you and her have had over the years.

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