A New Mindset for Love in the Time of Dementia

Hi there,
I am new to this group.
My husband has been diagnosed with moderate white matter disease. At this time, there are only small changes in him. He has errors with his medication management so I picked that up. He has become lost in restaurants. He gave up managing our portfolio.
I am wondering how you first discovered your husband had dementia. What were the early signs? Thanks so very much.

Welcome to this group. Glad you found us.

The first clue that something was wrong with George's mind was a difference in the way he looked at me. There was a disconnect, as though he was looking right through me. He seemed distant and vague. Blank.

Another clue was his forgetfulness: He made promises, but often broke them. I thought he was lying to me, but then I realized that it was possible that he just didn;t remember what he said. I suggested testing for dementia but he refused to cooperate. (His brother had dementia.)

A third clue was that he started asking me how to perform basic functions on his computer and cell phone. (Instead of admitting that he had forgotten how to do certain things, he would blame his computer and phone for not working properly.)

The most telling clue was that he was getting lost when he was driving. My husband loved maps and geography. He had a great sense of place and directions. Before his diagnosis, he did all of the driving. Over a period of several months, he started asking me for directions, and he argued with me every time I told him that he passed up the street where our house is located.

George also had a number of falls,. When he was not responding from physical therapy, which he was receiving after back surgery several years ago, I told his doctor that he needed to be tested to see whether he had neurological issues; and the doctor ordered an MRI. The test confirmed that he had vascular dementia, caused by a stroke. Further testing showed mixed dementia (Alzheimer and Lewy Body with Parkinsonian features).

Hope that helps.

I wish you and your husband good years ahead.

George's Wife

What a wonderful post. I just joined this group. I am on others that have helped me so much. It is not a partner I am seeing disappear. It is my mom. In fact, she has an appointment, today, with the psychiatrist to see if they can tweak her patch or anything. I am trying not to have any expectations. I know what this disease does as I have seen it before in my dad, grandmother and others. This, however, is my mom. I posted about it days ago and have received some wonderful comments, helpful comments. I also talk to my therapist about it. She has this habit, now, of hanging up on me if I challenge her in anyway. She needs to see the hepatologist and her GP and she keeps cancelling them. She will complain about symptoms of her diabetes, liver (skin stuff) and I will say, you need to go to the doctor. I inevitably get the response..."there is nothing they can do." This week, I made the comment (which I should not have) "Well, I am not sure why there are doctors that go to medical school, if there is nothing they can do." She got mad and hung up on me. Of course, she doesn't remember that. That is what I am learning. I also am trying to change the trajectory of the conversations to something funny. That works sometimes. I was told to get the book "36 hours a day." I plan on getting that for my brother and myself. He lives with her. Anyway, thanks to all of you. I check the Mayo site daily. The 3 groups I am in provide so much support.

@diverdown1

An additional consideration is that if your mother is too much for you to manage, consider petitioning for the appointment of a public guardian:

"To ensure the proper management of an individual's affairs, consider the following steps for the appointment of a public guardian:

Determine the need for a public guardian based on the individual's incapacity.
Gather necessary documentation, including medical evaluations and financial records.
File a petition with the appropriate court to request the appointment.
Attend the court hearing to present evidence and support the need for a guardian.
If approved, the court will issue an order appointing the public guardian.
Ensure ongoing communication with the public guardian to monitor the individual's well-being and needs."

@georgescraftjr

I mention the following to present yet another option:
I believe a "public" guardian should be a last resort and only if there is no family member to help the person in need. Hard as it is for a person with dementia to be "handled," there may be techniques the family can use to make the process easier. A legally appointed guardian may be appropriate for a person with no family, in my opinion, but family is usually a better choice, though not always in some extreme circumstances.

Yes, a public guardian should be the last resort. Appointing a private guardian assumes that their is a guardian willing to take on the responsibility, and that the family has funds to hire an attorney to handle the guardianship proceeding.

In my experience as a social worker, the legally appointed guardian usually does not know the person, and is often a busy attorney who may not have enough time to really be useful. A lot of dealing with dementia involves learning what works, what is necessary, and how to manage these things.

...and the requirements for guardinaship vary from state to state.

@georgescraftjr I don't really trust anyone else. I am her POA and she is still somewhat compitent, although for how long, I do not know. Tennessee has very limited resources, so much so, that I, myself, went without any health insurance for several years. Also, my mom's sisters are still alive and neither have dementia, so they are also able to help. I am going to call her doctor's office (her GP) and ask if she has any advice on getting her in. My mother is terrified of water and has been from a young age. Since she got dementia, she dreads the shower. It is psychological. My brother and I are not going to tell her about her next appointment, that way, she can't call and cancel. I may need to drive there and insist that she get ready, which will be a fight but I am learning to just not fight with her. She bathes like she did when she was a kid. Her father was a farmer and they had no running water or electricity until she was in junior highschool. She bathes with a washcloth and soap and washes her hair in the sink. This is so difficult. Taking it one day at a time and trying very hard to keep myself in the present moment is helpful although as you know, not easy. I appreciate your suggestion and if I get to the point that I am too physically ill to do this, I now have an alternative. Thank you for the reply.

@tsch I am a semester away from getting my MSW. I will say that my education has provided absolutely nothing regarding someone with dementia. Also, I have Long COVID, which I believe I got due to complex trauma over the years. I believe my immune system was compromised due to being in fight/flight for so many years. I am trying so hard to manage my sobriety, life, school and also her finances and be there for her emotionally. I have found ways to redirect her and a find that humor helps. She does hang up on me a lot though and usually if I question anything. This is difficult and I do not want some stranger with her. My brother does live there with her, cooks, cleans, grocery shops, drives her to appointments (when she goes) however he gets so angry. She was always very controlling and our family has quite the dysfunction so although she has this, she still can be shaming and mean. With my 8 years of being sober and learning ways to detach and redirect, I do worry about her and my brother. I am grateful that he is living with her. I am not sure I could do that, but one never knows what can be done until faced with it. I say that you are a social worker. I would love to ask your opinion and some questions as I will graduate in August.