My husband has been under the care of hospice 11 months and shows no sign of slowing down, which is fine with me, but I struggle over the best way to care for him. After 2 years of nightmare experiences with in home caregivers a few days a week for my respite, I decided to try a memory care facility day care program 2 days a week. I love that it has activities, brain boosters, etc., although my husband sleeps most of the time and, although he seems content while he's there, he really doesn't like to go and grumbles all the way there. I feel the activity is actually improving him. If he really is dying, and who knows, do I keep trying to improve his quality of life or let him Rest In Peace? How does one know what's best? He has Parkinson's and dementia.

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In my experience, I have not had good experiences with in home caregivers. I have been having caregivers in increasing hours for my parents over the last year.

I have caregivers at night and during the day. In the best case they get to work on time, barely do what is required of them., keep my parents from leaving or burning the place down....

The night caregivers have been caught literally making themselves a bed on my parents couch complete with putting their bare feet on the couch (ewww). Both of my parents have dementia and could wake up confused and possible leave the apartment. .. since the caregiver just slept through her shift.

As for the day caregiver.. what I wanted is someone who can do some very basic cooking and who can provide companionship and get them out.. take them out to walk, let them sit out in the main areas in the apartment complex..etc. What I got.... people who cannot even cook the most basic meals, who sit and text and who look over them like prison guards and barely have conversation with them.

My parents have dementia but are mobile and don't require incontinence care .. but do need some overseeing. I don't know if it is just their specific situation that they aren't good at handling...

Whatever the case.. I am so over the caregivers.. texting me all the time.. asking for time off , can they leave early, my dad said this or my mom said that .. etc etc.

On top of all that .. they can get extremely expensive.. even with me taking one shift every day. Even with the caregivers, I am still very involved, can't even take one day off or away. I am currently looking at memory cares for my parents .. I need to have some rest.
Helpful Answer (16)

Jazzy2, I can so relate to your anguish! "do I keep trying to improve his quality of life or let him Rest In Peace?"

My husband had Lewy Body Dementia, which is extremely similar to Parkinson's with Dementia. He also went to a day care 2 to 3 days a week. He too wasn't keen on going, but he did like several aspects of it. I did it frankly for respite for me. And at the quarterly care conferences when the social worker asked why he was coming he said, "So Jeanne can have some time to do her things." We also talked periodically about care centers. I never promised him he would never be in one, but instead promised I would never abandon him. I would always be his advocate and his loving wife. I wanted the best care for him and that might mean going to a care center.

When he got too weak to go to daycare, we had a personal care attendant 32 hours a week. I guess we hit the jackpot! I was home while she was there, working from home. It was awesome to have her help Coy get dressed, shave, etc. and then come to my office door to greet me good morning! She fixed him breakfast and lunch. She sometimes took him out for walks. She did jigsaw puzzles with him. She took him through the exercises the PT recommended. He did them more willingly for her than for me. ("She's not bossy.") She looked through our family albums with him. She helped me take him to the county fair. She absolutely contributed to the quality of his life ... and mine!

When Coy went on hospice care, he slept for long periods of time. She was very helpful when he was awake, but bored while he slept. She wanted things to do. I gave her tasks like organizing my messy linen closet. I told her that this was not in her job description and she certainly didn't have to do these tasks, but she wanted to keep busy. Of course she stopped as soon as Coy was awake.

Did I get the only gem in the home-care pool? Or was it because I was in the house while she was there?

It took a while into the dementia journey, but I came up with clear understanding of my caregiving purpose. I would maintain the best quality of life possible for him as the disease progressed. I measured decisions about medical issues and other things by that standard: will this contribute to the best quality of life he can have now?

I rearranged our bedroom when Coy went on hospice. I hung one of the puzzles he helped put together. I bought CDs of music from his youth and played them when he was awake. I offered food but didn't push it, and if he wanted some I made his favorites that were easy to eat. He lit up when I brought him a Popsicle. Even for the five weeks he was on hospice I did what I could for his quality of life.

I am sorry this is so long, Jazzy. I just got carried away by the similarities in our situation. I wish you the very best in this situation. If moving him to a care center of some kind would improve your situation and at least not be a detriment to his quality of life, then don't hesitate to do that. And above all -- No Guilt. You are doing your best in a very challenging situation. No Guilt.
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Not at all Didgens. I've had credit cards stolen, lazy people on their cell and don't even look up when he walks in the room, his incontinence goes unnoticed and, the last straw, the last one just walked out and left him alone. I have cameras in the home so I pretty much know what goes on.
Helpful Answer (11)

You need the break and it sounds like he is enjoying it. My aunt has Parkinsons and her daughter takes her regularly to a gym to box. It really helps her.
Like you said this could go on a long time. Pace yourself.
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I found two wonderful women who take turns caregiving each day with my Mom. I have them cover 5-7 hours per day. I do the rest.

I found them. Then I told the agency...these are the people I will use...if you don't hire them on..some other agency will...and I will go to that agency. I told the agency they had to pay them $15 per hour. I did not want someone who isn't paid well enough to care about their job.

Now, at first the agency didn't want to do any of that....but it was that or lose my business. I wasn't going to allow underpaid, complete strangers in to care for Mom.

It has worked great! But, the few times I used a straight agency gal to fill in.....I was not happy with them. Mom herself even fire one!
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I am agonizing over this decision right now. My mom has lived with me for 4 years already. Mild dementia, but I was able to work and she was very independent within the home. I do all cooking/cleaning/laundry, but she could fix herself breakfast and lunch.

Well, she got sick (UTI) and was in hospital. After that stay, she went to rehab. She has declined cognitively. She now can't remember the simplest steps to accomplish a task like getting dressed, going to the bathroom (almost completely incontinent now), or even eating meals. So I am currently her full-time caregiver.

I need to be working, but husband doesn't want strangers in our home when we aren't here. (Legitimate reasons relating to his business.) He also thinks it's too much for me to take care of her. I do have to change her every 2 hours, get her up standing or pushing the walker every hour or so to prevent too much pressure from sitting, etc. This is only week two. I see the benefit to never looking further ahead than the next hour.

My problem with putting her in somewhere (SNF or memory care) is guilt. She cried and wanted out of the rehab/nursing facility every day she was there, even though it was basically a decent place. I'm concerned with the eventual medicaid lookback (5 years) since she probably only has funds for 2 years of care if we can get her house cleaned out and sold.

I'm also angry that my siblings say sorry, let us know what we can do - while at the same time, not being willing to even take mom for a day or weekend during the past 4 years. They don't care if I put her in a nursing home. This doesn't affect them either way.

After reading all the responses here, I'm going to look into day care and/or in home care for a few hours a week so I can leave the house and get groceries and do errands.

My wish for everyone is a good night's sleep. That is what I crave the most!
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Our first caregiver pretty much ran out the door screaming ,, the new one the agency sent yesterday put on her gloves and started picking up poopy things right off the bat and didn't even hedge ,, I guess you need to make sure they know the real deal. My mistake was cleaning up the mess before the first "companion" got there ,, so the house didn't smell bad and look terrible. so I figured id not clean that week and let her have a go at it,, she didn't return. If you're able to get a good one they are golden .. never let go ,,,
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I thought about having someone come into my home for a couple of hours a week to give me respite but I really don't want someone I don't know coming into my home. As much as I hate to do it I'm leaning towards Mom moving into an AL facility. I believe it would benefit her. I want her to have a more rounded full day. And I need my life back. I hope that doesn't sound selfish but I've cared for Mom 2 years without any help. I gave up my job, social life and identity. I'm 67 and I would like to go visit my kids and travel some. I love her dearly but my mind is tired!
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I had my 80 yr old mom, with vascular dementia, living in my home for one year. We had caregivers daily, from 8am to 8pm. The caregivers were awesome. Very attentive and kept mom busy with singing puzzles, walking and PT exercises. Cost $7800/mo.
A beautiful new Memory Care facility opened up. I was getting tired from interrupted sleep every night and from having caregivers in my house everyday. We had just down-sized our home and we were trying to get used to the smaller place, when we had to take over mom's care. We moved her into the memory care unit. $4500/mo I supply briefs, pads & wipes, as well as her clothing, linens & hygiene supplies. I was amazed by the relief I felt and how my mother adapted so soon. I did have some issues with the caregivers, mostly because of her incontinence and anal redness. I had her PCP order Calmoseptine twice daily, instead of as needed. I found out that PRN/as needed meds are rarely given. I'm told that the CNA cannot make medical decisions, but the med techs don't assess (look at her butt). So a twice a day order has worked. They toilet her every 2 hrs, while awake. This is a $500/mo incontinence fee, included in the $4500 that I mentioned earlier. The caregivers are trained to allow the residents to do and say what they want. They go along with their crazy stories and redirect them if the are stressing over something. My mom asks where her husband is very often (he is deceased) and they say he is playing poker or at Walmart. She is fine with that. My sisters and I had a hard time in not correcting/arguing with her. We have learned a lot, since mom has been in the facility. Hope this helps. Your health and wellbeing is important. You can visit as often as you want & you can be free to enjoy your life. God Bless you all!
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Just an update. My husband is adjusting the the facility and seems to really be enjoying it. He is participating in the activities and seems much more alert and present he no longer complains when I take him and drop him off. On the days he is home, he sleeps all day. Resting up I guess! It's not always easy getting him in and out of the car but it's worth it. He even helped bake cookies today. He has NEVER set foot in a kitchen.
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