Reality

Cate2024 · August 23

Just wanted to share my reality. My DH is a very physically fit 72 year old who was diagnosed with AD 3.5 years ago. One year ago today, August 23, 2024, he looked at me and said "who are you and where is my wife" Known as Capgras Syndrome, he knows most people, especially old friends, thinks I look like something like his wife and has accepted me as his caregiver. He believes his wife left him (for several men, on a fishing boat, she watched as several men drugged him and tried to kill him, and on and on) He rarely mentions her anymore, which is a blessing. I had any mail or packages coming to me changed to my "caregiver" name as mail to her was upsetting him. His chronological age is 4. I was ripping out an exterior stairway yesterday that was rotten. He wanted to help so I showed how to pull the nails out of the boards as I removed them. At one point I turned around to find he was taking the nails and pounding them back into the rotten lumber. You can't say no or scold him or he gets belligerent. I thought I could handle this for the long haul, but some days I just don't know anymore. Thanks for listening.

cdgbdr · August 23

Sounds a lot like my life, except sometimes he knows we're married. He has lots of wild stories. He is 73 now. I'm going to place him and it's killing me.

Biggles · August 23

This is such a long slow sad illness. Sometimes at home my DH to me appears ‘normal’ but of course he’s not. It’s me compensating, predicting and doing everything for him and wishing he was normal. Clothes on the right way round, shoes on the correct feet and matching, finding his glasses, his tracker watch, that he’s been to the toilet etc. He has Aphasia so we now do most of this in silence, just a few words or with my iPhone in a back pocket playing soft music. He also knows most people, he has lost me a few times, the first time it was tears and heart break, but so far after gentle talking he has come back to me. He asked me yesterday did he have a mother then it was more gentle talk. When we go out now his walking is so slow, he’s slow around the house too. Can’t follow simple directions or Instructions and is having trouble feeding himself. We shower together every morning and I have perfected the art of shaving him. It’s exhausting like living on your own with a needy shadow but he’s so sweet and I love him so. 77 years old married for 54 wonderful years, very lucky and now so sad.

Timmyd · August 23

The part about the stairs and the nails hits home with me. I am always looking for ways to keep DW involved in the upkeep of the house and feeling sadness and disappointment as I identify new things she cannot do anymore. I count myself as fortunate in that she rarely insists on "helping". It is mostly just me trying find things for her to feel useful.

tonyac2 · August 23

I get that Timmyd. I want my DH to feel useful as well. A stroke last year left his left arm plastered to his belly like it’s in a cast. He used to teach music and it kills that he can no longer hold instruments and play them. Many of the things I’d like him to be busy with require two hands and he lacks the capacity to make it work with only one. Thankfully he’s right handed so he does busy himself with dot to dot books, adult coloring books, activity books etc. But yes, so, so sad.

trottingalong · August 23

I’m thankful in the sense my husband has COPD in addition to his dementia. He’s far less mobile. He’s not on oxygen, thank goodness. I’ve learned not to ask for his help ever. Recently I couldn’t remember how to use the device to pump fuel from a drum to the tank. What a cluster f… that was. I finally convinced him I made a mistake and we still had plenty of fuel in our tank. Then a few days later while he was napping I did the transfer. It’s old habits that are hard to break. We were rock climbers, mountain bikers, ocean fishing in our boat and fly fishing. He’s a shell of that man today and I miss the great outdoors. Thank goodness for my dog and our walks on the beach and in the redwoods.

Chance Rider · August 23

Cate, and all, I can’t imagine the day to day challenges of this ever changing disease as it progresses. My husband, I guess like many with cognitive impairment, has good days and not so good days. Just now in the kitchen I had to again show him how to start the coffee maker, it’s just 2 buttons but the thought process wasn’t engaged. He dislikes asking for help as it demonstrates his confusion. Going to try using a labler to make a 1 and a 2 to label the buttons. Maybe it’ll allow him a tad bit more independence. I’m lucky I guess that for the most part he’s happy just watching tv and leaving the house and property to me.

Vitruvius · August 23

Somewhere in her mid stage, I stopped my DW from doing the laundry. She put dirty clothes in the dryer and was about to pour in a good dollop of liquid laundry soap. That would have made a mess, even though she probably wouldn’t have figured out how to actually start the dryer.

At the time my DW did not recognize me as her husband, but thought of me as one of several of her husband’s brothers, all of which had the same name as her husband. Of course, as you can guess, I have no brothers.

SDianeL · August 24

we all know what you’re going through. Saying no or scolding does no good because he can no longer reason or understand why you are saying that. It triggers anxiety and agitation. As we say here… his reasoner is broken. So sorry. 💜

Goodlife2025 · August 24

We are all in this together; never felt more true. MY DW also still very much wants to be involved, help, and participate but it causes more work, clean up, or exasperation than I can sometimes handle. Earlier this summer we were trying to build a new clothes line. I ended up with 7 holes dug as each time I turned my back she started a new hole or refilled the holes I did want dug. I finally had to stop the project making up an excuse and get some outside help a few days later.

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