I've been trying to get respite care from a home care agency but it has not been going well. I came here back in March and discovered she wasn't eating because she forgot how to cook, she hadn't taken a bath in I don't know how many months because she has an old clawfoot tub and it's too difficult for her to get in it by herself and I don't know how long since she had changed clothes. She was sleeping fully clothed in a chair because her only heat source was a floor furnace and the chair was closer to the furnace. There is no heat or AC in the bedrooms.
She refused to go to any kind of nursing home and fought is something fierce. She said it was her home, she wasn't leaving it and she had the right to die in her own home. Months after I moved in with her, she got sick and since then has had great difficulty walking. Physical Therapy said she had muscle strength but after taking several falls, she doesn't have the confidence to walk by herself. She needs 24 hour care because she won't get out of her chair by herself unless somebody helps her.
I leave her alone with the caregiver and she pisses herself because she doesn't want to ask for help to get to the bathroom. I tried having them come around meal time and left the house, when I returned they told me she refused anything to eat. She hates it when they want to give her a bath, they came to help because it's so hard for one person to get her in her tub and she ordered them to leave her house. She's telling me not to let them in if they come back next week.
She qualifies for a bathroom remodel through the Agency on Aging but they are now delaying it because her furnace is out and the HVAC guys will need to come in next week to replace it. They think with her Alzheimer's / Dementia it will be too much for her at one time. I not only need to get the HVAC guys in to do their thing but I need a caregiver to watch my mom for about 6 hours while I take care of some business out of town.
So far I've only had the agency come here for a few hours one day a week. I stay with my mom the rest of the time.
It's stressful because it's like my life is over. I've had to turn down job offers and other opportunities just because I couldn't get a caregiver to cover the hours I needed them. If I do get a full-time job they would expect me 40 hours a week plus there is drive time to and from work providing I always go straight to work and straight back home then I would have to pay anything over 31 hours out of my own pocket at the agency's private pay rate of $30/hr. Plus they charge extra if they have to work nights, holidays and weekends. My mom can't afford the new furnace so I wrote the check on my own account for the down payment.
As it stands now, I've been approved to get paid from her medicaid waiver at a rate of $14/hr which is now my only income. I have to split her 31 hours with the agency, so I only get paid for what they don't work, so if they are here for 3 hours, I can only bill for 28 hours even though I'm here 24/7/365.
I was looking at a job where I would have to work Thursday, Friday and Saturday every week but the agency said right now they could only cover a few hours on Tuesday. What I don't like is let's say the agency is able to cover more hours, they might only be able to cover 11 am to 4 pm Monday through Friday, I would be required to leave the house during that time but then they can't cover Saturday when I really need them.
It doesn't help that the Agency on Aging calls every month and wants to talk to my mom. She told them last month she didn't want the home care agency coming into her home and she almost got the authorization cancelled. I had to do some quick thinking and fancy talking to keep that from happening. I wanted to use whatever time they could provide so my mom could get used to having somebody else here, but it hasn't been working so well.
I would like to have them come for 16 hours per week this summer, so I can be outside doing yard work but instead of 2 eight hour days, I might get 6 two hour days because that's when they are available, however, they can't promise that many hours.
I'm not married and I don't have any brothers or sisters who can help, in fact, nobody has been here since I came in March with the exception of her next door neighbor, my former manager and the people sent by the home care agency.
How are you surviving in a home with no heat in the winter, in Nebraska? I'm glad someone is coming next week to fix the HVAC. And it's definitely time to have mom wear some Depends, as that will make your life much easier if she doesn't make it to the bathroom in time, or doesn't want to ask the aide for help. You have your hands full for sure, but it sounds like you have a good plan to get things done around her home to make mom's life a little easier for her.(and you) It probably wouldn't hurt either to get a plan in place just in case the day comes that mom can't stay in her home anymore. Please just make sure that during all this you are taking care of you. Wishing you the best.
Are you going to remain with her? If not who is going to care for her when you return home?
She will need 24/7/365 care.
She will continue to decline and need more help.
You could try leaving her alone for longer periods of time so that she HAS to depend on a caregiver to help her. The caregiver should be taking her to the bathroom the caregiver should be encouraging her to eat. (she can not be forced though....if she misses a meal while you are gone she will be hungry when you return but she will not starve.)
She depends on you, you are her "safe person" she needs to build another 'safe person" relationship with a caregiver.
Is the agency sending the same one each time? If not that may be because it it just a few hours. Have the same one come in and remain for a full day. During that time THEY care for mom. She will get used to it.
She has rights to be cared for, food provided, bathing etc but does NOT have the right that this is solely provided by YOU. (As told to my Father re my Mother's refusal for respite care).
Your Mother can still choose to refuse to eat, bathe etc or not with an aide same as with you... but you will will not be leaving a vulnerable elder unsupervised. Book it.
If she refuses to eat, don't worry about it, she will not starve in a day.