Sometimes/ most of the time- I really hate being a caregiver

[Anonymous]

I think it's time for some very real talk with the relative's side of the family. Either people contribute to the costs of this (hiring a helper etc) or they take on the responsibility of finding a suitable place to live. Provide a typical month's expenses to the famliy and insist that they contribute. And they must each come and caregive for a weekend so that you can have a break/go out of town.

It's time for you to draw some very hard lines with your SO, extended family, and with your relative, about what you are willing to do. You have to be ready to let the chips fall. Nobody will take you seriously if you just talk and don't follow through. Figure out what balls you can drop and do it. Expect tantrums and pushback, but keep your reaction to a minimum and stay the course.

Why are you dealing with the trash annoyance, for example, and not your SO? Time to notify them both and stop doing it. Let this play out.

[Anonymous]

I'm very sorry op. That's tough. I'm just trying to think outside of the box a bit - I'm wondering if your local schools require kids to do volunteer work, could they get credit for helping with the trash part or providing some household help for a few hours on a Saturday, that sort of thing.

Sorry you are dealing with this.

[Anonymous]

If they are really getting so much SSDI that they don't qualify for Medicaid (and you should definitely talk to a lawyer about this because some states have Medicaid buy-ins) they should have enough money to pay for at least a few hours a week of home health care so you get a break. They will also be eligible for Medicare and that might provide some resources depending on if it's straight Medicare, an advantage program, etc. But it's reasonable for them to spend money to help with their expenses and get better care.

[Anonymous]

OP - Is the relative a sibling of your husband who likely gets SSDI based on the adult child benefit of the parent? Have your in-laws dropped out of caring for their child for whatever reasons? If this is the case, your DH should put the pressure on them to at least contribute financially to the sibling’s support. It sounds as if as well intentioned as you are in trying to help, that this person is confined to an upstairs bedroom in your family home for the rest of their life? Please explain why???

— What is the official diagnosis of the young adult?
- Does the adult have a condition like Cerebral Palsy or others degenerative physical conditions with limited mobility?
- Is the adult cognitively impaired? I’s the adult able to make decisions on their care?
- Does the adult use a Walker or a wheel chair? What would be needed to get the person to the main level of your home?

You are well intentioned, but from the description you have shared, you are describing a bedridden young adult in an upstairs room not even joining the family in the home for a meal. It seems uncanny that there is no effort to get this adult to the main level and connected to local services. Perhaps you do not know where to look for help???


- You and DH need to get the adult a Case Manager at the local Developmental agency to help you sort out programs and options for the relative. In Virginia it is the local Community Services Bosrd.

- The Case Manager could get the person evaluated for any possible services under Medicaid such as in-home personal care support, community day program and there are some serving those with severe physical disabilities. Also, the in-Home person could do activities there with the adult is transportation out is so difficult. There can also be so many hours a year for respite so your family can get away.

- The Arc in your area would be another source to know about services and may have a day program option. AND or know if providers to help you out

- The Easter Seal group in Sikver Spring MD would be another resource about services to the physically disabled.

- You need to start to develop a budget now for the young adult starting with 30% going for rent and utilities and other basic expenses ad food, health related supplies, clothes etc. The idea is to see what comes in monthly on SSDI stays under $2,000 in total in the persons name to have the person qualify for Medicaid as well as the Medicare one May have. It is Medicaid that will pay for 24/7 housing options if you. An’t do it and skilled nursing as needed.

- Then you could use what you receive to possibly rent a stair lift to see if the individual could at least get to the main floor of your home.

- The young adult needs to qualify for Medicaid for present and long term support needs because with increasing physical needs, he/she may well benefit from skilled nursing. THe ARC is one place that might tell you about some housing options.

[Anonymous]

I was getting mad just reading this post, OP. It’s unconscionable that the relative’s family has allowed you to take on the burden of caring for this person exclusively. It’s time for a talk with the relative’s family about their new prognosis and a new plan of action since the one you had when relative moved in wtih you is no longer applicable.

Relative and relative’s family members must chip in to help with expenses and caregivers to take care of relative. You will no longer be available to do this. Your DH needs to step things up, too. Why has he allowed his wife to take on the brunt of this caregiving? If he has to pitch in more frequently, I’ll bet he’ll be more active in trying to find a different home for the relative.

In fact, maybe another relative has a house better suited for this individual, like a first floor bedroom or in-law suite. The circumstances you took the relative in under have changed, but that doesn’t mean that you have to continue providing the same level of care as when they were on death’s door.

And definitely call around again to see what might be available in terms of group homes or subsidized housing with caregiver support. Can they use a wheelchair?

It’s unbelievable how women are expected to wait hand and foot on people, even when it’s not their own family members.

[Anonymous]

OP, you sound overextended and need to set hard boundaries about trash, giving notice for this relative to leave, etc. They are a guest, you have helped them a ton, and now they have worn out their welcome. Is this adult mentally disabled as well? Why are they not figuring out the logistics for themselves?

[Anonymous]

Can they go back to the living situation they had before coming to your place?

[Anonymous]

Anonymous wrote:

thanks so much- I do appreciate the kind words and the support. The money issue sort of reminds me of a teenager who has a part time job but no expenses- e.g. we basically pay all the bills so relative no longer pays rent/ utilities/ food etc- so the only thing they need to pay for is prescriptions and medical bills. They figured out long ago that the doctors will still treat them if they don't pay medical bills so all they pay is prescriptions. The prescription cost is high, but it does not consume all of the income. Their source of income is SSDI. Oddly to me, they get enough in SSDI that they are not eligible for medicaid. So what are they ordering? Mostly large quantities of snacks and drinks - which come with tons of packaging. They also tend to order the 'mini snack' type things which is even more packaging. Some hobby related stuff.

Starting today, you need to charge this person rent, a portion of utilities, and for food. Cut back on their amount of money available for the junk in the first place. This person has NOT listened to you or considered your very reasonable request. You have every right to charge rent. Charge enough so they have maybe $50/ month at most to spend on crapola.

[Anonymous]

If you're not comfortable with rent, at least insist that some of their funds go into a savings account until they have saved the maximum they can save without losing benefits. Look into an ABLE account.

[Anonymous]

OP, who cares for the disabled person during the day?

As someone who has been unwillingly trapped in the caregiver role, I feel for you. Sadly there really aren't many solutions. If someone needs full time care, they either need to be able to pay for it, or they need to get it from willing relatives or friends, or they do need to go into a nursing home (skilled nursing facility?). They can spend down their monthly SSDI to pay for one that takes Medicaid, I think, but any ones you can find are probably going to be pretty crappy and horrible for an adult with intact mental capacity who is just bedridden. Assisted living isn't the right place for someone who can't much get out of bed.

It really sucks. But at some point you are going to have to think about yourself and your own kids. If this person isn't even doing the minimum to make themselves agreeable to live with, they are going to have to move out and into a crappy place.

[Anonymous]

Anonymous wrote:Move relative out. You have gone above and beyond.

This. I feel for you. It’s everyone’s worst nightmare. Next time they go to the hospital tell the hospital that you cannot care for them at home. They will find them a Medicaid bed.

[Anonymous]

Anonymous wrote:Have you talked with an elder law attorney (even if the person isn't elderly they will know about Medicaid and SSI in your state)? There may be home and community based services to get some respite or assistance or funding for the care you provide. there may be wait lists but might as well get on them!

Schedule an appointment for next week and go and find out what all the options are.

If they have money to buy crap, they have money to pay a private caregiver..
The person doesn’t have to live with you or be homeless.
If your DH complains, then tell him he will have to do the caregiving and you will stop doing it. And then stop.

[Anonymous]

Do they have MS? My best friend has it and is getting worse every day. I worry about his future.

[Anonymous]

They need a nursing home through long term care medicaid. It has different qualifications than regular medicaid.

[Anonymous]

thankyou all- I appreciate the support and suggestions- some of which we had not considered, and some of which we have implemented with varying degrees of success.
People have made a lot of guesses and assumptions about several things- several of which are completely accurate, and a few of which are off base. I would rather not give out the relatives specific medical condition b/c I am concerned that I have already said enough to pretty easily identify myself, and giving the condition would absolutely identify us. Suffice it to say that it is a fairly rare syndrome which causes multiple medical conditions and attacks various organs of the body. Different people experience it in different ways, and the way my relative has experienced it has changed over the years- they have not always been completely disabled, they were at one point able to work and care for themselves, albeit with some accommodations.
They are not bedridden, they can get out of bed without assistance. They are largely housebound in that they cannot walk more than about 20 feet, and need a walker/ wheelchair/ other assistance. The goal is for the relative to be at the table for family meals. The problem with this is twofold- 1) due to the medical conditions the relative often does not feel up to sitting at the table (and yes, as suspected this is partly a matter of stairs) and 2) the relative is severely immunocompromised so anytime anyone in the household has any sort of communicable disease symptoms we have to isolate relative in their room. Unfortunately this winter has been the winter of colds and flu symptoms... In general my SO is a full participant in the caregiving. SO has been sick for the last few days and has been unable either to help with relative or to help with kids so I have been feeling particularly run down and sorry for myself.
When relative is having a longer term episode but everyone in the family is healthy we have set up a folding table on the same level of the house that the relatives room is on and we carry dinner to that floor and all eat together- but this is fairly burdensome as well.
Returning to their previous living situation is not an option- they were about to be evicted from it for a few different reasons, and while they are doing much better than they were when they moved in with us, they need to be somewhere where they get daily care- all meals provided, daily housekeeping, all laundry etc. They do have visiting nurses and other therapists who come to provide various services.
I also appreciate the person who said I needed to have more compassion- your right, the relative does not want to be in this situation- they would much rather be a healthy functioning adult living independently.
They don't need round the clock nursing care- I can bring breakfast and lunch to them before I go to work, and then fix dinner when I get home- laundry and trash etc will be waiting for me. They can be left alone for periods of time, just not long enough for us to go on vacation. Its just all rather exhausting.