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

[Anonymous]

I think this is probably the right forum to post this- We ended up moving a disabled relative into our home about a year ago. at the time we thought they had 6mos- 2 years to live. I expected the next couple of months/ year to be really hard- with steady decline etc. Well... living with us the relative's health has improved significantly- really primarily due to the care we are able to give. So now this situation could last indefinitely. But they are still basically totally disabled and unable to care for themselves (e.g. success is bathing and dressing themselves, all cooking, cleaning, etc we provide)- I spend all my 'free' time picking up prescriptions, running up and down the stairs, bringing meals to their room, doing an excessive amount of laundry, hauling an excessive amount of trash, etc. If we want to go away for a vacation, we have to find someone to come stay in our house and care for the relative. I have multiple busy children, a full time job that i enjoy (and need financially), and some volunteer work that is really important to me and I enjoy doing very much. Oh-disabled family member is also impoverished- so there is no money to hire extra help.
I do have good friends, they vaguely know that this is a tough situation- but they don't generally no 'how' tough it is. Disabled relative has also become somewhat narcissistic- I think b/c they are used to having things 'revolve around them,' and so tend to think of their own wants/ needs well before what might work for the rest of the family- which is just really frustrating and grating.
I am reaching a breaking point- and don't know what to do- I could cut out my volunteer work- but I really don't want to- I do find it fulfilling, and it actually wouldn't help a ton b/c generally I have my kids with me when I am volunteering, and so I would still need to be caring for them. I could require the kids to do less activities- this is probably the solution SO would prefer- but I hate to do this to the kids, they already have to sacrifice a lot b/c we have disabled relative with us. I guess I'm just venting- I was mentally prepared for this situation to last a year or two- now I think it could last a decade.
The excessive trash is probably a good example of the problem- disabled relative is house bound, so loves to order things that come with an excessive amount of packaging. We live in a community that tries to get people to change their trash behavior by limiting the amount of trash that can be put out for pickup, and if we have excess trash we are required to go purchase 'extra trash' tags, bag it separately, and put it out tagged. Well, we have excessive trash every week b/c of the insane amount of packaging etc that family member accrues- and their inability to successfully separate the recycling. So- basically I have to either add another errand of buying bag tags, and paying for the excessive trash fee- or sort through their trash and attempt to separate it- which is a particularly gross activity b/c relative has a medical condition that makes some of their trash particularly disgusting. I actually agree with the 'excess trash fee' as a way to try and get people to change their habits- but despite repeated pleas- disabled relative is not going to change their ways- and it comes down on me.
I'm just whining- I should probably just delete this.

[Anonymous]

You need to move your relative out of your home. They clearly have income and likely qualify for Medicaid and other disability payments. Perhaps your community has a social worker you can contact to find out more.

[Anonymous]

I think it is time for a massive re-think now that it’s clear the situation will continue long term. Whether that’s hiring someone else (with SSI/Medicaid or your own $), or moving them to another relative, or to a care facility, or something. But this isn’t sustainable- so don’t pretend it is!

[Anonymous]

I’m sorry. This sounds hard for everyone involved.

[Anonymous]

You should whine and vent. Frankly that sounds awful and I'm sorry for you. It's okay to feel frustrated and wish things were different. What the heck are they ordering and how do they have ANY money to be ordering things with?

I would look at medicaid housing. Are they on medicaid?

[Anonymous]

Move relative out. You have gone above and beyond.

[Anonymous]

Is there any other family that can help? You should definitely ask for help or start looking for assisted living or something along those lines. Any chance you or relative are catholic? Often there are good homes run by your archdiosis.

[Anonymous]

I think you should move your relative out of your house. Obviously they will not like this and will try to guilt you and the whole thing will be horrible. Getting them out will be truly, truly awful and difficult, especially as you are currently depleted.

But once the relative is out of your house, you will feel this enormous sense of relief and you will feel like you have your life back. And you will have more emotional resources to give to your relative rather than just being their resentful caregiver.

I would get support, like your own therapist, specifically to support you in getting your relative out of the house. You will likely get a lot of judgment from people who have never had your experience and who don’t know what this is doing to you. Ignore those people. Focus on yourself and your children. You only have one life. Is this how you want to spend it?

[Anonymous]

For the packaging, you can return to sender the items. Tell your relative a reasonable limit, like three things per week or whatever, and the rest just RTS.

[Anonymous]

Anonymous wrote:You should whine and vent. Frankly that sounds awful and I'm sorry for you. It's okay to feel frustrated and wish things were different. What the heck are they ordering and how do they have ANY money to be ordering things with?

I would look at medicaid housing. Are they on medicaid?

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.

We did a fair amount of looking for other housing options before we moved relative in with us- there really were no options. Part of the problem is that relative is not elderly- so is not age eligible for most assisted living. In terms of group homes for disabled young adults- those tend to be focused on low mental functioning, but they expect a high degree of physical functioning. Even with someone coming into the home, relative cannot live alone. They need every meal provided, anything dropped on the floor picked up, daily housekeeping etc.

We do get a degree of family support- but mostly from the unrelated in-law side of the family- e.g. our relatives that are the most supportive are not related at all to the disabled relative- they just love us and want to help us.

Prior to moving relative in with us- we did try to get more support from the hospital social workers etc- there were a couple of times we refused to pick up relative from the hospital hoping that would trigger more resources- it didn't, all it got us was relative getting put in a cab to us with a voucher.

[Anonymous]

You need to work on setting boundaries, OP. You cannot function when you're on-call 24/7. Set some boundaries on the packaging, set some boundaries on the housekeeping, and on your availability for non-urgent tasks.

How is your relative's cognitive functioning?

Can you look into an adult day program to alleviate the feeling of being house-bound, and get you some breathing room?

[Anonymous]

Most caregivers hate caregiving most of the time. Its a really tough job and it doesn't matter if you are doing it as a responsibility or to make a living.

As long as you can do your basic duties and aren't cruel, its fine. However, do try to find kindness inside you and think of yourself in shoes of the person who is dependent on you.

Always know that you are doing noble work and your child self or your elderly self is looking at you with admiration. There is nothing more heroic than caring for another human, other than doing it when you don't feel like it.

Also, you need to let go of perfection and make time for yourself and also for sometimes just holding hand of the person you are caring for, they need your compassion the most.

Never worry about judgement of others on how well you are doing it, if they were compassionate enough they will offer help not judgement.

[Anonymous]

I'm guessing this person is related to your spouse. If that's the case, they need to pitch in more or make extra money to hire a helper.

If its your relative then you still can request your spouse to help out so you can function without getting overwhelmed. If they aren't willing, cut on expenses and find a helper.

If none of that is possible, explore community, governmental and charitable resources to lessen your burden or move them to senior housing and use your free time to do overtime to pay for it.

[Anonymous]

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!

[Anonymous]

Let your children get more involved in care, it would teach them good life skills. If they are interested in healthcare professions, they can learn a lot and even use this in their application essays, interviews and volunteer hours. Colleges love students with unique stories where they stepped up in hour of their family's need.

Obviously, don't make it completely their responsibility, it should remain a family project.