Approach to bringing in a caregiver for wife

Talk about similarities! Wow! About the only differences I could see was that your husband still drives some and your dog is tiny and ours was big. I say "was" because he died early this morning. My husband has been much worse today, and it might be because of that. We'll miss our boy terribly, but I'm glad he's not suffering any more. One other difference—as far as I know I don't have an aortic aneurysm, but I do have chronic A-fib. So far, though, I don't have much problem with that.

I'm like you in that I'd be lost without fiction and the internet. I swear I don't know how people who don't like to read manage all the things life throws at us.

I'm in the same boat as you and @bclane. Hubby seems to remember everything about his childhood, which he talks about incessantly, but can't remember whether he just ate. He has trouble implementing anything involving planning, so appointments, bookkeeping, etc are all left up to me. I am 'directionally impaired' (get lost easily - thank goodness for Google Maps), and he used to have an uncanny sense of direction, but that is gone and he would get lost a mile from here. He used to be very handy, but now simple 'Honey-do' jobs go undone. I think his hearing is normal, but he 'misunderstands' what I've said, so sometimes he gets mad at me thinking I said something different. I too find myself raising my voice impatiently when he asks me to repeat what I just said. He wants to use his smart phone but it is frustrating trying to show him over and over how to operate it. I too read constantly - only using audiobooks, so I can 'read' even when walking or doing chores. They truly do take one's mind off the tedium of daily life.
We're not planning very well for the future - I guess we'll just have to handle what comes when it comes. Fortunately I have a wonderful son who will help us, even though he lives far away.

This WaltF who started this thread. I'm pasting below (rather long) messages I sent to our children (and a few friends) about my wife, their mother or step mother. I hope they may give useful ideas to others. Her name is removed. The first message (A) was sent two years ago. The second (B) is recent:
(A) Alzheimer’s Destruction of Nerves; Functional Losses.
Most of us know that Alzheimer's disease is found in many older people. But we don't know much about what happens to the brain to bring about the losses of memory, physical stability and basic functions.
I want to tell you a little bit about what happens to brain neurons (nerves cells) in Alzheimer’s. Knowing this helps me remember that the victim is not responsible for the severe changes caused by it. It helps me to try to remain understanding and compassionate.
(At the bottom here is a link to a pretty good, brief article with diagrams on the neurons)
(Also, a link to the stages of Alzheimer’s—there is a lot of variation from person to person)
Two of the major "actors" in Alzheimer's are called beta-amyloid (pronounced "bay-tuh-am-uh-loid") and Tau (sounds like the tow in towel). Little or no beta-amyloid is found in normal brains. With Alzheimer's it accumulates, lodging at the interacting parts (synapses) of two brain neurons. [The human brain contains 100 billion long neurons that transfer signals at 100 trillion synapses]. That accumulation of beta-amyloid blocks signal transmission at those synapses so that some function is lost. As it continues to accumulate those neurons die. Tau is a normal component of neurons. It acts to help keep a neuron elongated, or relatively straight, so that it touches other neurons throughout the brain and forms synapses with them. In Alzheimer's something disrupts this normal Tau function. It collapses into tangles causing the nerve to collapse, lose its synapses, and die.
This destruction of nerves continues for years. Along with their loss are constant losses of cognitive functions and of physical abilities. These include memories of recent experiences, of old memories, of normal body stability, of how to care for oneself, and eventually of the ability to swallow properly (often leading to death from aspiration pneumonia).
The enormity of this nerve death is seen in patients dying from Alzheimer’s--their brains are about 30% of normal size.
Love, Walt
Inside the Brain: A tour of how the mind works
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/brain_tour_part_2
The Seven Stages of Alzheimer’s
https://act.alz.org/site/DocServer/sevenstages.pdf?docID=16881
(B) Here’s an update on how your Mom is doing— from our physician, from me, and from a good friend.
From our new Gerontologist/PCP: He said she’s doing very well compared to most other Alzheimer’s patients with her length of time from initial diagnosis (5 1/2 years)
From Me: In general her memory continues to be worse— new memories often gone after 30 secs or so. Using gadgets correctly, such as the microwave, is almost impossible. Many of our discussions are labored. She is easily distracted, going from an unfinished task to a different one—totally unaware. She gets frustrated, helping me in the kitchen or with other tasks, when she cannot remember what the next step is or where the next needed thing is. We spend a lot of time looking for things around the house that are “lost“.
She sees many things with a kind of whimsical eye, things that are not real to me: a cloud formation is amazing, like nothing she’s ever seen; a row of five houses along a neighborhood street have all been freshly painted and she concludes that they were given paint by the city to do it (they were painted about 20 years ago).
She does continue to take care of herself —dressing, personal hygiene etc. She still cleans up after meals and does the laundry. But these are now often delayed or forgotten.
Comprehension, and retention, of information of a movie watched or a book read by her or to her by me is very poor. But we still do the NYT crossword (mostly Mondays) about three times a week. She gets about 30% of the words, some of them I would never get. She gets a bit frustrated, but we mostly enjoy it.
She still understands quite well the difficult changes that are happening in her. It is very frustrating for her. Despite my efforts to treat her to the contrary, she often feels that she’s a great burden to me and “you should put me away somewhere“. It is wrenching.
After using a 4-wheel walker for a few months she has become steadier on her feet. Now she walks 1-1.5 miles 3-4 times a week, alone with a walking stick and Buddie on a leash (I follow her progress on my phone from home).
Despite her difficulties, she continues to do well in social situations with family and friends.
Please know that much of our time together is pleasant and pleasurable.
From a Good Friend: She did well in her familiar environment of having company to dinner. She found a vase for flowers we brought, arranged them and went outside for greenery to add to the vase. She did this confidently and with ease.

I found all these posts helpful—not for now, but likely for the near future. This has been a particularly tough week for me. My husband and I have one dog and two cats, and the old dog (around 15) is dying from heart failure. He's not eating and drinking very little and he's incontinent with diarrhea. He also can walk no more than a few steps and that's with a strap around his hind parts. We've always cared for our dogs at the end rather than euthanize them, but I would euthanize this sweetie (for his sake as well as ours) if we could even get him to the vet. But our dog weighs over 100 pounds (much of it retained fluid), so it's pretty impossible—and he's not likely to last much longer.

Anyway, with this extra stress, I have become very short and sharp with my husband. I know sometimes he's just trying to help, but he gets in the way and doesn't know what to do. Picture dealing with a young child who wants to help with something like this; it's very similar. Plus, he has trouble hearing which doesn't help matters. I know he loves the dog as much as I do, so this is hard for him, too.

The dog woke me (I was on the couch) panting heavily a little before 4 this morning. No more sleep, but I did do a lot of thinking and so far today I have been much nicer to my husband. So, he asks the same question five times in a row. Instead of getting irritated and telling him he just asked me that, I simply answered five times in a row. The lesson for me was that I felt a lot better doing that, instead of snapping at him. If he gets in the way of my cleaning up after the dog, I just ask him to move instead of snapping at him to move. And when he doesn't hear me, I just get louder but so far I've managed to keep my tone normal instead of sounding like a b!tch.

I seldom get away from home alone unless it's to a doctor's appt. and a neighbor stays with my husband. I'm afraid to have him sitting in the waiting room alone. My "alone" time is escaping into fiction. Reading a novel (preferably a mystery or thriller) is like a mini-vacation to me, and I would be in much worse shape without that escape. But my husband seems to be rapidly getting worse, and sometimes I just don't know what I'm going to do about it in the future, so reading about others hiring part-time caregivers and how to deal with it is helpful. Thank you! I needed this.

What phone app do you use to follow your wife's progress while walking? We have the Life360 app, which helps, but it's not very accurate, just general location. Maybe that's just our area.

The misunderstanding what you said—yes, I can relate to that! I give my husband simple directions to, say, get something from the kitchen or wherever, but he can't seem to focus or retain them. And that's when I know he's actually heard whatever I said. He tells me stories from his childhood (which I've heard many times), but then he'll tell me stories about things that happened since we've been together. That's when I ask if he knows who I am, and sure enough, he doesn't. Sometimes he knows my first name, but he doesn't know my relationship to him. When I tell him how long we've been married (over 30 years), he's surprised.

It wears on a person after a while, and then we feel guilty because we know they can't help it. We have helpful neighbors, but family is in another state (where we moved from). We have considered moving back there, and now that our old dog has passed, we can make frequent trips there (it's about a 3-hour drive one-way) to check things out. Yet I'm not sure being around family will make things any better. He already doesn't remember many of them—his kids usually, but not their spouses or the adult grandkids, all of whom he spent a lot of time with both before and after we moved.

I'm coming to the conclusion that the best way to plan what to do next is to imagine myself alone and then decide how and where I would want to live. My husband will be 90 in a little over a year, while I'm approaching 80, so I might be the last one standing. But if something happens to me first, I know his children will have to put him in assisted living or memory care. He could not live on his own, and they aren't young either.

This WaltF who started this thread. I'm pasting below (rather long) messages I sent to our children (and a few friends) about my wife, their mother or step mother. I hope they may give useful ideas to others. Her name is removed. The first message (A) was sent two years ago. The second (B) is recent:
(A) Alzheimer’s Destruction of Nerves; Functional Losses.
Most of us know that Alzheimer's disease is found in many older people. But we don't know much about what happens to the brain to bring about the losses of memory, physical stability and basic functions.
I want to tell you a little bit about what happens to brain neurons (nerves cells) in Alzheimer’s. Knowing this helps me remember that the victim is not responsible for the severe changes caused by it. It helps me to try to remain understanding and compassionate.
(At the bottom here is a link to a pretty good, brief article with diagrams on the neurons)
(Also, a link to the stages of Alzheimer’s—there is a lot of variation from person to person)
Two of the major "actors" in Alzheimer's are called beta-amyloid (pronounced "bay-tuh-am-uh-loid") and Tau (sounds like the tow in towel). Little or no beta-amyloid is found in normal brains. With Alzheimer's it accumulates, lodging at the interacting parts (synapses) of two brain neurons. [The human brain contains 100 billion long neurons that transfer signals at 100 trillion synapses]. That accumulation of beta-amyloid blocks signal transmission at those synapses so that some function is lost. As it continues to accumulate those neurons die. Tau is a normal component of neurons. It acts to help keep a neuron elongated, or relatively straight, so that it touches other neurons throughout the brain and forms synapses with them. In Alzheimer's something disrupts this normal Tau function. It collapses into tangles causing the nerve to collapse, lose its synapses, and die.
This destruction of nerves continues for years. Along with their loss are constant losses of cognitive functions and of physical abilities. These include memories of recent experiences, of old memories, of normal body stability, of how to care for oneself, and eventually of the ability to swallow properly (often leading to death from aspiration pneumonia).
The enormity of this nerve death is seen in patients dying from Alzheimer’s--their brains are about 30% of normal size.
Love, Walt
Inside the Brain: A tour of how the mind works
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/brain_tour_part_2
The Seven Stages of Alzheimer’s
https://act.alz.org/site/DocServer/sevenstages.pdf?docID=16881
(B) Here’s an update on how your Mom is doing— from our physician, from me, and from a good friend.
From our new Gerontologist/PCP: He said she’s doing very well compared to most other Alzheimer’s patients with her length of time from initial diagnosis (5 1/2 years)
From Me: In general her memory continues to be worse— new memories often gone after 30 secs or so. Using gadgets correctly, such as the microwave, is almost impossible. Many of our discussions are labored. She is easily distracted, going from an unfinished task to a different one—totally unaware. She gets frustrated, helping me in the kitchen or with other tasks, when she cannot remember what the next step is or where the next needed thing is. We spend a lot of time looking for things around the house that are “lost“.
She sees many things with a kind of whimsical eye, things that are not real to me: a cloud formation is amazing, like nothing she’s ever seen; a row of five houses along a neighborhood street have all been freshly painted and she concludes that they were given paint by the city to do it (they were painted about 20 years ago).
She does continue to take care of herself —dressing, personal hygiene etc. She still cleans up after meals and does the laundry. But these are now often delayed or forgotten.
Comprehension, and retention, of information of a movie watched or a book read by her or to her by me is very poor. But we still do the NYT crossword (mostly Mondays) about three times a week. She gets about 30% of the words, some of them I would never get. She gets a bit frustrated, but we mostly enjoy it.
She still understands quite well the difficult changes that are happening in her. It is very frustrating for her. Despite my efforts to treat her to the contrary, she often feels that she’s a great burden to me and “you should put me away somewhere“. It is wrenching.
After using a 4-wheel walker for a few months she has become steadier on her feet. Now she walks 1-1.5 miles 3-4 times a week, alone with a walking stick and Buddie on a leash (I follow her progress on my phone from home).
Despite her difficulties, she continues to do well in social situations with family and friends.
Please know that much of our time together is pleasant and pleasurable.
From a Good Friend: She did well in her familiar environment of having company to dinner. She found a vase for flowers we brought, arranged them and went outside for greenery to add to the vase. She did this confidently and with ease.

I'm so sorry about your dog. I dread that day when our time comes, but I'm told that Chihuahuas live forever. My husband has a-fib. If you like mysteries and escapes, you might like Louise Penny. Have you read her?
I'm nervous about the visit to the neurologist. My husband doesn't understand why we're going and I don't know what to expect either. Our regular doctor has diagnosed dementia and tests have been run but no one has said the word Alzheimer's. I'd like to know what kind of dementia we're dealing with. Stay strong and keep reading.

I don’t think anyone is obligated to help out with family members who have dementia, but I must admit I’m a little disappointed and sad. Overwhelmed too. My mom is in the hospital and now it’s just me with my dad (88 with Alz). I’ve had his care 24/7 for the last 9 days, even though I had to work. (Did it remotely.) I got my niece to stay for a couple of hours once. The problem is I really need to work out. My knee acts up if I don’t. Yesterday, I took him with me to the gym. But, that’s not very feasible. No one has offered to help me even for 2 hours to just sit in the house. Those I did ask said no. So….I’m calling a private agency tomorrow. It’s just it’ll take awhile to get that set up. I’ve got several calls in to facilities for respite care. Haven’t heard back…..it’s unbelievable. With all the friends and family around and no real support. I guess everyone has their own stuff to deal with. I won’t judge them.