Approach to bringing in a caregiver for wife

Posted by waltf @waltf, Feb 25 5:33pm

My wife is 5 ½ yrs from Alzheimer diagnosis. We are 84 & 85. She’s somewhat functional with hygiene, meal clean up, laundry. But it’s worsening quickly. How approach bringing in a caregiver after vetting a caregiver agency to find candidates? Interview candidates with my wife? Do it by myself (probably with a daughter)? Any ideas about the process appreciated.

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@cnutt

Thank you! I don’t even need help with him physically, I just need some time alone! So a companion. But I appreciate the idea to let him be part of the process. Not til April so I have time to slowly suggest it.

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Alone time is exactly what all us caregivers need no matter how much we love our loved one. There was a couple times I would just go to the beach and do my crossword puzzle...nothing fancy or special, but the relief I felt, knowing he was in good hands for a few hours is indescribable. And I found that with respite, it so very much enabled me to give myself self-care.
There has even been a couple times when I didn't leave the house and just let her take care of him so I could get much needed chores finished up without the interruptions (for a lack of a better word). I wish you all the best!!!

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@bayviewgal

Alone time is exactly what all us caregivers need no matter how much we love our loved one. There was a couple times I would just go to the beach and do my crossword puzzle...nothing fancy or special, but the relief I felt, knowing he was in good hands for a few hours is indescribable. And I found that with respite, it so very much enabled me to give myself self-care.
There has even been a couple times when I didn't leave the house and just let her take care of him so I could get much needed chores finished up without the interruptions (for a lack of a better word). I wish you all the best!!!

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Ty!

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I would find an agency that you trust and meet with a manager to explain your expectations and your wife's needs. There is no guarantee that any one person will work out but I have had success with several over the past year and the respite has been a life saver for me.

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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.

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@bclane

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.

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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.

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@bayviewgal

I had over time kept asking my husband if he would let a nurse do some of things I was doing for and to him...like when giving him a shower or helping him get dressed and he always said "yes". I'm not really sure if he meant it or not, cuz at one point during his decline he was usually agreeing or saying yes to alot of things, so i would just pray and cross my fingers that he WOULD let a caregiver take care of him. So after interviewing her, I introduced them, I just said " Tom. this is my friend Sue. Would you be ok if she were to come in and help take care of you like I do?" And he said 'sure". It was such a relief that he wasn't showing resistance. She was mainly here to give me some respite and I would stop pulling my hair out and losing patience and it worked out great. I felt it very important to both me and my hubby that i ASKED him if was ok, not just a this-is-what-is-going-to-happen thing. His dementia has progressed faster than I thought it would, but he still does have some lucid days left in him from time to time and I want him to be a part of this process and decisions the best way he knows how. I started out slow by her coming by 2 days a week for about 4 hours each time. It gave me the much needed break I needed and I didn't want to overwhelm him with a stranger. After a few weeks, she would come sit with him a little longer and it worked out really well.
I wish you the best in making your decision with a caregiver and how he'll react when you introduce them to each other. I would love to hear how it goes.
Peace, Strength and Hugs to you

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My husband has Parkinson’s and MCI, dementia. He insists we stay in the two- story house in the suburbs. I met with a senior services consultant (paid her $100) and she found us a CNA who works at a local hospital 3 - 12 hour shifts and is available to us on her off days. She works with my husband 1 day a week (3-5 hours) just for him to get used to the extra help. She charges $35/hour. She organizes his medications, does his laundry, cleans his sheets, cleans his bathroom, tidies up his “living area”, makes him lunch and just chats with him. He enjoys sharing all his old photo albums and memorabilia from his “glory days”. I try to schedule her when I have other things going on. This helps me so much. He likes her and appreciates the company and someone who listens to his stories! (I’ve heard them many times 😁) I pay her a minimum 5 hours a week and anticipate we’ll need her increasing more hours. Hope this helps someone reading this! God bless!

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@bclane

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.

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I could have written your post myself. Our situations have much in common. Deaf husband who wants to help but gets in the way. Old Chihuahua that doesn't like husband, who can't remember to Just Leave Him Alone. It's getting harder to be away from home for more than an hour or so, though he still drives to his favorite places. I read, read, read. Lots of mysteries and novels, some biography and history. I'd be lost without books, email, and this site. Upcoming first appointment with neurologist that husband doesn't understand the reason for. Steady decline in cognitive function. What does the future hold? I was recently diagnosed with an aortic aneurysm and should avoid stress, which means I shouldn't blow up at my husband. You know how hard that is, especially when he can't hear so I have to shout. I'm right there with you.

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@pamela78

I could have written your post myself. Our situations have much in common. Deaf husband who wants to help but gets in the way. Old Chihuahua that doesn't like husband, who can't remember to Just Leave Him Alone. It's getting harder to be away from home for more than an hour or so, though he still drives to his favorite places. I read, read, read. Lots of mysteries and novels, some biography and history. I'd be lost without books, email, and this site. Upcoming first appointment with neurologist that husband doesn't understand the reason for. Steady decline in cognitive function. What does the future hold? I was recently diagnosed with an aortic aneurysm and should avoid stress, which means I shouldn't blow up at my husband. You know how hard that is, especially when he can't hear so I have to shout. I'm right there with you.

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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.

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@pamela78

I could have written your post myself. Our situations have much in common. Deaf husband who wants to help but gets in the way. Old Chihuahua that doesn't like husband, who can't remember to Just Leave Him Alone. It's getting harder to be away from home for more than an hour or so, though he still drives to his favorite places. I read, read, read. Lots of mysteries and novels, some biography and history. I'd be lost without books, email, and this site. Upcoming first appointment with neurologist that husband doesn't understand the reason for. Steady decline in cognitive function. What does the future hold? I was recently diagnosed with an aortic aneurysm and should avoid stress, which means I shouldn't blow up at my husband. You know how hard that is, especially when he can't hear so I have to shout. I'm right there with you.

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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.

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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.

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