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

Hi, pcetng0202. Among my friends of my age (89) are a number with similar challenges from their spouses and partners. Their practice comes from a shared strategy that tries to avoid managing or controlling needs, necessities, or wishes of a partner who is descending into dementia. And it's not simple:

Use good and polite questions rather than complaints, directions, or accountability tricks; and do so with an understanding tone that life for senior citizens has become much more complicated for a lot of reasons, perhaps mostly because of digital tools and data bases that are now being employed at every level of conscious human observation, interaction, achievement, and celebration, but also because of thought pollution caused by artificial intelligence and almost daily new findings from scientific research that past practices and recipes are obsolete -- even hazardous -- and must be replaced now. Under the circumstances, continuous education is essential to us all to keep up with changes that must be made, and that also commends to us the importance of sharing information and ideas with as any friends as time allows, giving us the benefits of group insights and efforts to understand and share answers to newly vital challenges. Martin

@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.

Hello @pcetng0202 welcome to connect. Everybody has had so much good supportive ideas. I only have one little one to add. I remind my husband of the ways he helps me, and that these are the ways I help him. Reminding him that we have been in it together all of these years.
I do try to give him as much autonomy as is safe. I use a med organizer like others here, and I quietly put it in his place at the table when it is time, then I just keep an eye to make sure he is taking the right ones at the right time.

Your mother raised a wonderful daughter.

I’m sure it’s different for a spouse, but I’ve had plenty of experience with first my cousin and now my dad. I learned a lot from others and I still learn something new everyday. My cousin had Vascular dementia mixed with Alz and my dad has Alz.

I learned that convincing the person that they have memory issues is not really necessary. Sometimes, they just aren’t capable of processing the reality of their condition. Their brain just isn’t able….it’s not them being stubborn. And, even if they did momentarily accept their condition, they’ll forget soon after or the next day, so it’s not helpful to them. Imagine having to learn some terrible news about your health everyday. It’s actual kinder to gently insist on being in charge without a lot of details, imo.

I learned that some people with dementia don’t read notes and follow directions very well. I adjusted my expectations.

I learned to accept that some people with dementia are not able to be happy and content, regardless of where they are. Even with meds for depression and anxiety, the person with dementia may still have a lot of angst and erratic behavior.

The book The 36 Hour Day is a good resource for most everything you might want to know about dementia care. Of course, everyone is unique in how it affects them, Some progress fast and some slower. It can be quite unpredictable.

Thanks to you and all who who replied, from varied perspectives, with insights I found valuable. My mood is already a bit lighter today and I am determined as a result of the counsel to interact in a low-key manner, to emphasize that my guidance is to ease the complexities of life inflicted by our mutual ageing and societal change, and to remind mt wife that we have a loving devotion to each other.
I cannot engage in a personal support group because my wife becomes anxious when I leave home and I worry as well. So my absences are few, brief, and necessary. We have supportive visits and communications from time to time, but deaths and distances have diminished the number. Yet Mayo Connect (and the Mayo book Day to Day Living with Dementia)
may fill the bill. I'll also search for The #6 Hour Day. Bless you all.

@pcetng0202 many people in my in-person support group had difficulties leaving their spouse or loved one. Our group leader warned us that we might be caregiving for many years and needed to also save ourselves. I ended up spending 8 years when I expected less. I was grateful for the advice.

Your local senior center, council on aging, elder services organization may be able to provide advice on how to have someone come to give you a chance to leave. I actually had a job years ago with a 93 year old woman, mainly to take her out to lunch. Some organizations provide volunteers (the "Village" movement here in MA). I continued tai chi and art class and I believe it saved my life. And an in-person support group with a leader who advised me for all those years.

Our local council on aging provides dementia training and a "dementia friends" program locally. Hospice volunteer programs also hold courses on how best to handle dementia. We also have "Memory cafe's where both caregiver and cared for person attend. I participated in that.

There are a lot of resources, including books! Art and music are also really helpful to the person with dementia. You could take classes together! Getting out of the house is a hard priority to have as a caregiver, but I was told often the stress and isolation mean the caregiver dies first.

My mother qualified for hospice based on dementia alone, which provided free aides 5 days a week , a volunteer to spell me, a social worker, nurse and chaplain. We used hospice for 3 years. You are not there yet, not at all, but I mention that as a resource that is underused due to the connotation of the word "hospice."

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

Do you mind saying how your mom qualified for hospice based on dementia? Trying to figure out if my dad might qualify.

Dementia can be a qualifying diagnosis for hospice, under certain conditions. Our local hospice does an evaluation. They also offer palliative care (nurse visits but no aide) and "bridge to hospice." I did suspect that with the kind of complex but not imminently life-threatening medical conditions that the very elderly have, dementia might be used as the simplest diagnosis for hospice Medicare when the picture is complex.

I volunteered briefly for our local hospice and all my patients were on for dementia.