The Mental Switch

The shift happened over time for me. My DH became very paranoid and accusatory - usually that I was unfaithful and had boyfriends. I was so hurt at first, even though I knew it was the disease. He is now in memory care, and that does make it easier. I visit for short periods of time each day, and he doesn't know if I am there for an hour or three hours. I couldn't walk away when he was with me because he would just follow me, ranting on about what a bad person I was. Medication changes have helped, and now I just quietly deny it, and if he keeps on the subject I leave. You may need to consider medication because she is likely very agitated and unsure. Good luck - and when you shift into caregiver mode it is sad, but definitely better for you.

((HUGS))

My mentality also shifted over time. I realized eventually that I had compartmentalized my feelings and set them aside so I could focus on caring for DW. Once I realized that questions like, "I haven't seen you in months. Where have you been?" were the disease talking, I was no longer offended or angry, just profoundly sad. It can be very weird to sit at the kitchen table, just a foot or two away, and have her say, "I haven't seen [my name] in ages. I wonder where he is. He left without saying a word, and that makes me sad." At least part of the time she lost the association between corporeal me and my name, yet she expressed gratitude that I was here and said, "I don't know what I'd do without you." I thought to myself, "I don't know what you'd do without me, either."

Tangent: I moved DW to memory care a week ago. I haven't yet visited, and the staff tell me she's asking for me. I worry that when I do visit, she'll ask when she can go home, and I'll need to have an answer.

Somehow, I managed to balance being both at the same time. I'm glad that I was because she's now in memory care, so the caregiver part is not nearly so large. It's not completely gone because I still need to fill in some gaps at times. Still, I put most of that part behind me, which leaves more for the loving spouse I still am.

this forum helped me so much. I was struggling caring for my DH and someone posted the sentence that said “You can’t reason with someone whose reasoner is broken” it was like a lightbulb turned on. I stopped trying to correct him and stopped arguing. I stopped telling him the truth and as this forum recommended, I started fibbing to him. I stopped feeling hurt by things he said. I saw him as my patient and me his nurse. I stopped thinking of him as my spouse, it did take lots of self talk and practice for a few weeks because I’m human. I just kept repeating the “reasoner is broken” phrase when I fell back into my old habits. Yes I was sad. I grieved for the loss. The loss of “us” … 💜

@CindyBum

Medication might be useful to help relieve some of the anxiety that your wife feels which might help her settle a bit which might offer you some breathing space.

Since a change in routine and location tends to impact PWD, I would cease the road tips asap. I suspect a lot of your difficulty in planning is actually a function of friends and family pulling away from a PWD/marriage impacted by dementia. Sadly, this is almost universal. Tell her you can't make it work right now. Rinse and repeat.

I don't know that there is a switch one can flip— some people seem to gravitate to this mindset while others don't. I don't think all people are wired in such a way that they see the essence of their LO until the very end while others feel Elvis has left the building well before that. IME, the quality of care provided doesn't seem dependent on whether you can relate to the PWD as your spouse or parent anymore.

HB

Like SDaniel, the comparison to ALZ brain being like a light bulb going out helped me change my mindset. Once I really understood that, I stopped arguing with DH about just about everything. The sad result is that we can no longer have conversations of any depth. Not only does he have memory problems but it appears that he is losing his reasoning abilities. Trying to convince him that something he read on Facebook isn't necessarily really true is just a waste of my breath and would end up making him feel inadequate, stupid or angry. What's the point? He is a good man and has been a good husband to me. He deserves all to keep his dignity and feelings of self-worth. I just pray that i can give him that as he progresses into the later stages. My desire to help him keep his dignity was part of helping me make the switch to a caretaker mode.

Yes, I've seen that advice before. DW is self-aware enough to ask, "What doctor?" "What am I being treated for?" And hardest, "Why didn't the doctor tell me, rather than you?" She's very sensitive to slights to her personhood. I did not place her in MC by telling her the doctor said she needed to go.

Lol and hugs. She sounds like my Dh,I never do anything quiet right.

For me, the mental switch was a gut punch at the neurologist office. I had been in the role of caregiver for several years for most things - yard work, finances, meal prep, driving - but like a frog in boiling water, failed to recognize that was what I had become. At this appointment, the nurse referred to me as his caregiver and it suddenly hit me for the first time - seems crazy, but I hadn't thought of myself as anything other than wife until that point. I was totally stunned at this new term - but realized it was so true. It took me weeks to get over the shock. Still seems odd to me that I didn't see it for so long - but ultimately it took the resentment of doing everything away, made his comments easier to bear and helped me to understand the life I was living.

It wasn't a switch for me, or anything I consciously thought of. I just gradually came to realize we aren't peers anymore. It went from knowing she was not going to bring me my extra car keys if I locked mine in the car, to knowing there was not going to be any dinner unless I provided it, to knowing she will pee on the floor if I don't show her the way to the bathroom in her own house. Somewhere along that road, I thought less and less of her as a woman and started thinking more and more of her as one of the people I take care of.

In the course of that progression, I gradually stopped caring much about any perceived inadequacies in the quality of care I provide. She isn't qualified to judge my work. Remembering that makes it easier to not be hurt by her complaints. If you told a child school is out in three weeks and the child said she wanted it to be out NOW, would you be hurt?

That doesn't mean we don't love them. It is just that every household needs at least one adult, and we drew the short straw.

P.S. It is not a bad idea to wait until near the day of the trip to tell her about it. It can save you three weeks of "Are we there yet?"

Thank you for saying that. It's like seeing my DH die right in front of my eyes. We have been married almost 54 years so it has been hard. I have written your last statement down and will read it daily.