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.
Like you said this could go on a long time. Pace yourself.
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.
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.
These caregivers came from a licensed well known Agency which was bonded and insured. They treated their caregivers quite well. If one was unable to do her shift due to illness, the Agency found a good fill-in, even the Admin Staff would fill in if need be.
A few weeks we needed overnight care, and the caregivers were those who only did "overnight" thus were required to stay awake the whole night. It was ok with me if they watched TV or used their iPhone, just as long as they were alert to the sounds of my Dad getting out of bed as he usually needed help as he was a fall risk.
The two regular caregivers also would drive my Dad over to visit my Mom who was in long-term-care as Mom needed skilled care. They set the time to be there at noon so the caregiver could help feed my Mom. It was ironic, this caregiver was the one who my Mom shooed out of the house as Mom didn't want strangers in the house.
One late evening caregiver had a feeling that my Dad needed to visit my Mom that evening, even though he had already visited her at noon, Dad didn't want to go, kept saying no but eventually he gave in. He was so grateful he did as my Mom [98] had passed on in the wee hours of the next morning.
The caregivers were expensive. In my area it runs $30/hour with higher cost for the weekend shifts. As I look back, it was worth every penny.
Jazzy, it is always so hard to know what to do in certain situation, as every case is different. For me, I wanted my Dad to be happy with his decisions, and he was.
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!
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.
The best homes were those that gave a list of regular chores, with a daily schedule of each of a different house need - posted on the refrigerator. So, one day of the week, was change sheets, another was empty all trash, do laundry, clean bathroom... It was helpful to post the list, for that kept the house care work divided between different people, with one chore allotted each day - it helps to supervise and decide what would be helpful, and when assigning, consider a particular aide's strengths - don't assume they are all the same on the same job but some cook better, some know how to socialize, some don't do anything without directions. And when you meet with the agency, ask input of aides first, so their voices go into the plans.
I totally agree with you. There should be a posted list of what is expected and fully discussed with individuals so that most of the misunderstanding are handled before and not after the fact.
The last care giver I hired told my dad and the "live on property" care giver that she had had a brain tumor with chemo and radiation. IDK if the things she did were because of this. She did NOT tell me of her brain issues. But, she started bringing food that she had received from her MIL. Huge tubs of pasta....after I told her dad didn't like pasta. She brought her own food and kept it in dad's fridge (she also was cooking meals for her family but I let her since dad was supposed to be getting this food too for his dinner.) But she used all 18 eggs the other caregiver bought and when "L" came over the next morning...no eggs for breakfast. She had made a quiche for her family but dad didn't get any. She volunteered to wash the drapes in the dining room and living room. Then she re-hung them incorrectly and lost 2 panels and a tie back. How on Earth do you Lose them??? But the final straw was dad asking me to let her go. She had asked to borrow some tools. She had her son (or 2 sons) at dad's house and they went into his shed and came out with 3 hammers that they borrowed. I texted her and told her to bring them back. I also said to her "don't borrow anything else". That next work day she brought back the hammers and them proceeded to tell my dad "I may need to borrow them again next weekend". Right after I told her "don't borrow". So, then it was Friday and she made her own schedule. I noticed that she was leaving 15 min early at breakfast and lunch but coming 1/2 hr early at dinner (to cook) so I was willing to let that slide BUT she took her daughter to a dr appt without telling me. Worked 4.5 hours that day but billed me for the usual 6. So I let her go. She was saddened and shocked. What had she done?? She didn't "get it" when I explained it.
I used 2 online agencies to hire these gals. I know my own daughter has posted to get employment on Care.com (nanny) and she is a very honest, sweet person. So, I don't think they all are bad. But from what I've read you may need to go through several before finding "the one". And I've hired older mature women (40's).
I contacted a nationwide home care org. and spoke with the owner. They will send out care givers and if that one needs to be gone they send replacements but I didn't use them because I don't want a lot of people coming to dad's. It makes him nervous. He doesn't even want me to hire anyone else. He likes "L" and just wants her. But I feel the need for a second person because "L" doesn't work Mon/Wed and she needs a break too.
Hope this helps.
She was upset at first, and still asks me every week if I would consider letting her live at my house again (she does not remember that she was here for almost 4 years and was miserable for most of it).
The best part is I know she is well cared for while I am at work, and I can go back to being her daughter instead of a stressed out caretaker. Two weeks ago the staff noticed that she was not quite right, called her doctor, who said to get her to the ER, they called me to ask which hospital (we have 4 to choose from) and it turns out she had low blood sodium, so some medications have been adjusted. If she had been home, we might have missed that sign, just thinking she was having an off day. That alone makes it worth the money spent. In my opinion, the price of the ALF is a much better return on investment.