My mom is 81 years old and she has late stage Parkinson’s disease. Within the last three years she has had gout in her knee, multiple UTIs, shingles, and endometrial cancer, surgically cured.
I spent an entire year + setting up a care plan for her, including food delivery, house cleaning, filing a claim with her long-term insurance so she could have paid at home care. I researched her Medicare benefit and did all of the screening and hiring of health care agencies, etc.
She has gotten rid of every single bit of help that I have set up for her. She lives at home with her partner who is 80 years old and he is tired of taking care of her. He does the bare minimum for her and helps her to the bathroom and dresses her. But he cannot do that anymore. He is exhausted and elderly himself.
I’ve been going in circles with her for three years over her need to get help in her home. She’s incredibly resistant to having anyone in her home. She sometimes says she would be open to having someone come for one hour a week, which is simply not enough in my opinion. Also, her partner does not want a stranger in the home. I’m beginning to believe that they will never have a helper in her life quality is extremely low because she would not accept help.
She has made it very clear 100x’s over that she will never ever go into assisted-living or skilled nursing home for help.
What the heck am I supposed to do here? What would you do?
A lot of us have faced this issue. It's not something that YOU can do anything about Unfortunately, you need to wait until "the crisis" occurs-- mom takes a fall, partner dies or leaves, mom has a health emergency that lands her in the hospital.
The hospital can refuse to discharge her home without home care.
You'll need to inform the discharge planner that she has NO help at home (elders often lie about this).
Under no circumstances take her into your home to provide care yourself. "I can't possibly do that" is a phrase I learned to say often.
Good luck!
(((Hugs)))
So just let mom know that you'll be stepping away from trying to get her any care and that you yourself won't be doing anything going forward, as you're going to honor her wishes to do this all on her own.
And then just sit back and wait until she comes to her senses(if she has any left that is.)
Often children have to wait until an emergency or negative incident happens with their parents before they finally admit that they need help.
As long as they both want only you as their solution, the only way to drive home the point about accepting altenative care is for you to back completely away from any hands-on help. You tell the both of them that you will be stepping back permanently and that if they need anything in regards to cooking, cleaning, hygiene, mobility, etc. they will need to call someone else, like Care.com or other local agencies. Before you make this announcement make sure all their valuables are secured and that their sensitive information and documents are locked away.
But then you have to do exactly what you told them. When (not if) they call you just keep referring them to the agencies. Also tell them that if they don't do that you will report them to APS. Be patient, because this will cause one or both of them to give in. Don't go in there to rescue them until they have gone a full 2 weeks with allowing the aids in their home. I'm hoping they can afford it...?
At some point your Mom will be a candidate for LTC. In a facility, Medicaid will cover that (plus her SS income) when she qualifies. She can go in to a good, reputable facility on private pay and then when she is close to running out of money you help her apply for Medicaid. Make sure you do some homework now so that you aren't blindsided by their criteria and the 5-yr look back period. 24/7 in-home care will exceed the cost of many facilities -- especially if she needs any kind of medically skilled help.
She can be 100x clear about her stance, but so can you. Stop being their only solution and show them you mean it. I wish you peace in your heart as you help them see it.
I was a homecare worker for 25 years before going into the business. Please tell your mother what I have told countless care-resistant, stubborn seniors exactly like her over the years.
~Nothing gets a senior a one-way ticket to a nursing home faster than being stubborn.
Please show her this post. Make sure she knows that APS does in fact come and place people in care facilities against their will if they are unsafe at home and not receiving the care they need to remain safe at home.
Good luck.
There will come a time when its no longer what she wants but what she needs. Her Parkinsons will worsen. You may want to tell her the State could take over her care and she will have no say where she is placed. One of our members has a saying "the quickest way to a nursing home is to be stubborn".
I agree with others. Unless / until she is no longer capable of making decisions for herself, I think you have to admit there IS nothing more you can do but to wait for a crisis. From what I have read, late-stage Parkinson’s will hasten the time where it’s simply impossible for her to walk or get from bed to wheelchair without help. Again from what I have read, 50- 80% of people with Parkinson’s develop dementia also. If that is the case and you have DPOA, you can intervene without her agreement. You will know in your heart if and when that is the right thing. I know the uncertainty seems unbearable at times.
PS. Any way you could talk to her doctor? Would she listen to him? (My mom hates and fears all doctors).
That would actually be the best for all of you. Also make it clear that after the inevitable accident that will happen, she isn't coming into your home so you can be her care slave. You've done the best you could, and enough is enough. Tell her you'll visit her often in the facility and bring her cookies. Then go home and stop helping altogether. Maybe go on a trip so you can't run over to do her laundry.
Elder brats certainly do make things hard for their families - but you don't have to take it anymore. I hereby declare you free at last and at liberty to enjoy your life and the power of saying "NO!" from here on in.
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