Partner works remotely full time (he is 81) and so do I (85), and we are paying an aide for 4 hrs per day 3 days per week. He has colostomy, Foley catheter, and is non-ambulatory without walker. Totally incontinent. Washer/dryer goes day and night.
He has no assets, but his salary and SS barely covers aide’s 16 hrs per week in NYC and 2 visits from cleaning team for a clean home in general. I work full time out of our home, but prepare 3 meals per day 7 days a week, plus laundry, order Medicare supplies. Non-covered paper goods, etc., plus I pay all house expenses food and rent.
We need help. Family refuses to get involved. Any thoughts?
Your partner, if he needs caregivers should be paying for them.
(You are not married so his financial burdens should not be yours. I do hope you keep your finances separate. This may be very important if he has to apply for Medicaid) And keep ALL receipts of purchases for him.
You can not "force" anyone to help out if they don't want to. So put that thought out of your head, it will just frustrate you.
You begin to look for ways that will help you cover the care that he needs.
If he is a Veteran you contact the local Veterans Assistance Commission or your States Department of Veterans Affairs or the Closest VA and see if he qualifies for any help.
You contact the local Senior Service Center and see if there are programs that could help
You contact the local Area Agency on Aging and see if there are programs that might provide help.
You can also check with your States Department of Human Services and see if he qualifies for Medicaid.
I do not understand why your washer and dryer would be going night and day. If he is incontinent of bowel he should be wearing disposable incontinent underwear. (Unless he is using washable/reusable incontinent underwear)
Incontinence products can get expensive but local thrift stores gets these items donated quite often. They're around $4-$5 per pkg. You can't go wrong. If you get the opportunity buy as much as you can.
The effects of providing supportive care is cummulative At any age. So, no doubt, you are beyond tired. I’m sorry.
Your partner sounds as if he is doing his best to participate in his care and thankfully you have some support coming in.
Do contact social services to determine what if any additional services are available. The fact that you are both working perhaps places you out of the impoverished status that normally qualifies for help but at least you will learn what that threshold is and if any help is available from the resources you research.
That your partners family doesn’t choose to participate in his care is not unusual on this site where many report similar circumstances.
Do come here to vent and seek support and see what others are doing to sustain themself. We have several in your age group, who like you are fully living their best life possible regardless of their age.
Expecting someone else to provide help from their own pocket is a vexation to the spirit. Let that go. You don’t need the extra baggage and probably does your partner no good to be reminded that his family doesn’t see him as needing their help.
Welcome to the forum.
And of course since it sounds like money is an issue, your loved one will have to apply for Medicaid.
Your partner is NOT his families responsibility. Period, end of sentence.
But the fact of the matter is they're all entitled to spend their money as THEY see fit, which is none of your business. You can't make a person care about their family member, even if you feel they "should". Children and siblings should never be considered an elders "care plan" for his old age.
Not for nuthin, but if DH is still working at 81 and you are working at 85, how is it you have "no assets" or retirement income at all??? To have worked 20 years beyond the standard retirement age, and still have nothing at all to show for it is a very sad statement. I'm sorry for you and your husband's struggles. Have you checked with an elder care attorney to see if you qualify for Medicaid? You should.
Best of luck to you.
I think that you should call Local Council on Aging and see what you can come up with in terms of help. I am so sorry you're struggling. You need to reach out to the community to try to come up with something. Next step would be placement on Medicaid but if this gentleman is still WORKING that is still an active mind despite the breakdown in all bodily functions. I am very sorry.
I find it hard to believe that full time work and SS barely covers the aids. At 25.00 an hour for 16 hours a week, per month is only 1,720.00 a month. (16x25x4.3)
His adult, married daughters are not obligated to step up in any way, shame on him and you for thinking they are his old age plan. His brother and his money, quite frankly, are none of your business. None of them are obligated to prop him or you up. Sorry.
Follow the good advice given about finding resources and leave his family out of it.
Also, check with Medicare for any assistance that may be available as well.
My first inclination is that he is working full time with a host of comorbidities that would likely be SNF level if he can't help himself. You don't mention ADLs - but I'm not sure where he would fall given that he needs daily assistance with personal care and house cleaning in addition to the care that you provide.
From what I can see home health aides in NYC will run around $30 an hour. I am assuming that a qualified home health aide would be able to manage a colostomy and catheter care but I could be wrong. I do know that skilled nursing care can run much higher than $30 - and maybe he needs specialized care?
You are paying all of the bills - you depend on his salary and SS to cover his aides 16 hours a week.
Not to put too fine of a point on it but would he be better off NOT working and drawing social security only and considering SNF placement with Medicaid? He is working to provide caregivers - when that's just not necessary.
As far as his family - as others have stated - this should be removed from consideration. It doesn't matter that he has a millionaire brother. It doesn't matter that he has two "married daughters" ( though I'm not even sure why the distinction - are you suggesting that because they are married they may have disposable income to contribute because of their spouse?)
His children and his brother are not responsible for his care. Frankly you aren't even responsible for his care - unless you are his POA. And even then you don't have responsibility to provide hands on nor fund his care - simply to ensure that he has it.
His brother - regardless of how much money he has - has NO responsibility to fund his brother's care. His adult children have no responsibility to fund his care. Nor do they have a responsibility to provide care.
What you don't mention is the type of relationship that your DH has with his brother, with his adult daughters. There may be a very good reason - even one you are not aware of - that keeps them from wanting to be involved.
You also don't mention how long he has been your partner. How familiar are you with his family history? How often has he been in the lives of his daughters? Has he only ever spent time with his brother if needed money? (and honestly - someone qualifies as a millionaire by having at least a million dollars in assets - in this day and age and how long people are living - frankly by the time I retire a million dollars will barely take care of me much less leave anything for my girls to inherit.)
And unless he has taken the step to make you his POA - as his partner and not his legal spouse you can only help him do the things he needs you to do - but you can't make choices for him if he can't. This is something that if it is not already done - should be remediated soon.
My suggestion would be to consider SNF placement if he needs more care than 16 hours of aides and your time can provide for.
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