Which is better, care provided in a facility or in-home care?

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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.
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.
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.
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.
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!

I have used numerous agencies and no matter how good a reputation, they are all the same. It's pretty hit or miss. I've also tried hiring on my own but references are very hard to check. My experience is about the same as Katie Kay.
Whatever works and what you can afford.

My mom's AL is about $3,600 per month--and excellent, they do her laundry, hair, nails... She loves it. . Expensive but she can just about afford it. I reckon that in-home care would come close to $6,000/mo. for 12 hours each day. So, a bargain I am happy to pay for.

My mom could not be left alone and I could not handle the tedium of her daily care, dressing her, etc. I have a sick husband (83 ) so am dealing with that.

All in all, I thank God every day that my mom is in AL. Life before that had become hellish.
My mother took to the facility right away! Shocked my tearful sister and me.... The facility can provide active socialization......something I couldn't provide around the clock and caregivers were doing just that...giving care to give me help. Placing mother was one of hte best things we did for her with Alzheimers. She has been able to age in place, meaning she will never have to adjust to new surroundings. Her earlier years in the Blair Unit prepared her for the expectations and routines. She no longer knows me, but I know she is well cared for and has stimulations around her. It was a win win situation. Of course, finding the right home was a chore....but this one has been wonderful for Mother and the other residents (30-36).
I was the personnel director at a NYS licensed home health care agency. The policy was for applicants to obtain a police background check from their local police dept which was very general in terms of verifying criminal activity. The agency just wanted a body in the home in order to collect commissions. Most people hired were not qualified to work without supervision. I would urge anyone considering home care to look into an AL or SNF. Agencies are rated by the county they're located in. I left this job after 6 months.
My mother and I are both home caregivers. It is so hard to find people that are trustworthy and really do their job. Mom works with people who are just like you describe and the patient's daughter won't fire them because she can't find anyone else in our area to stay with her Dad. Sad. As for your husband, I am really glad you are being proactive and taking care of yourself. Full -time caregiving is very stressful. With the dementia, in time you may find that he will be more determined not to go anywhere even though he enjoys it once he gets there. Dementia patients like routine and the same surroundings. I suppose it gives them as sense of stability and comfort while losing all they have known. Eventually the best setup would be to keep interviewing and find one or two caregivers to take shifts and work on activities with him. There are loving, dedicated caregivers out there. Don't give up, and I am so glad to hear you have the cameras! Good luck with your husband!

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