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Dear fellow caregivers, my mother is under care of hospice and could pass any day now. I have tried planning steps to take but I am totally unprepared. I am widowed living on SS that is under 2000.00 a month. I will not be able to pay the rent after she has passed. I have 0 assets and barely enough to bury her. Moreover I have 5 rooms of furniture but cannot afford housing in my area. I have researched several senior living facilities and many of you already know there's a long waiting list and most independent senior units have already been rented out. My only options are living with my son (sleeping on his couch) or living with another relative who already has several people living in his home. I am lost trying to think of ways to solve my circumstances. I have enough to deal with daily just caring for my mother and making her comfortable. Any common sense advice is welcome. God bless you all caring for loved ones.

Have you contacted Catholic Charities of Eastern Virginia? They are located in Virginia Beach and may be able to assist you.

https://www.cceva.org

Their website says: "If you are experiencing a housing crisis, please call the regional housing crisis hotline at 757-587-4202, or Toll Free at 866-750-4431. The Housing Crisis Hotline is the region’s starting point for anyone who is experiencing a housing crisis and in need of shelter, case management, and related services."
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Reply to PeeWee57
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I see your mom as my fellow caregiver, not you.
Your story says that you've been financially irresponsible for most of your adult life...that's a darn shame. Any common sense advice given to you has been ignored by you.
The options you have are the options you've provided for yourself. You're not the victim in this story, you're the author.
It really is time to grow up.
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Penelope123 Jan 16, 2021
bolers1 you don't know what her life has been like. Some of us get hit with our spouses dying early, our children being ill etc and it can take a huge toll. Don't judge someone unless you know all of the story...
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Artist69, how does one feel prepared for the end of life of a parent? You cannot fully. Hospice should be supportive of this time now.

Cremation or medical donation are options for burial. You have honored her life by caring for her.

On your personal circumstances, it may be a time of this pandemic that buys you time since evictions are held at bay. Hire out the downsizing of belongings as it will be burdensome to do this alone. Rent out a room or space as storage if you have to temporarily. If your son can accommodate you, I suggest you both set up an agreement that it is for a set period of time. Hopefully, he can be supportive of your grieving. I suggest you build your savings of your SS during this time. Sign up immediately for your local senior housing waitlist as well as other areas.
Let us know how it goes..
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Reply to Pasa18
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Artist69 - if you are renting and there's no money or assets (think house), then there should not be anything you would have to pay back to Medicaid. I think AlvaDeer was referring to that, but there IS an exception for adult children who live in the home for 2 or more years providing the care.

If she's in a NH and is denied (why would they?), you can appeal. If she passes before the approval and gets approved, they *should* cover it. If the deny, hopefully you didn't sign anything saying you'd be responsible.

If she's living with you, then Medicaid shouldn't be looking for anything, esp if they haven't approved anything yet.

I hear you on the inability to cover life's necessities with so little SS. Unfortunately it is based on your working years and income. Thankfully my mother and father had saved money and I was able to preserve it to pay for MC. The SAD part is when I have to report how I used her SS funds, I report it ALL went to housing and food, which it did. It covered less than 15% of the cost. Pension was also applied fully. The balance and any necessities were covered by the assets I could preserve. Her SS was pretty minimal - no way would it ever cover rent AND food.

Twice now I have received a letter back from SS asking for explanation why her funds were only used for housing and food. Last year I wrote quite a bit, including the response that her SS funds would NOT have been enough to pay rent anywhere, much less food, gallivanting, buying lots of new items AND going on vacation! I also mentioned that mom was 96 at the time, almost deaf, in a wheelchair, with dementia - where did they think she was going, New Zealand?

Of course they sent the same stupid letter this year. My response is going to be even more strident, as she just passed and I really don't need their platitudes or stupid forms. I had already done the 2020 report, so they can wait.

Oh, by the way, for any/all who aren't aware, you won't get the final month's SS. It is paid a month after, like working a week and getting paid the next week, For example, if someone passes mid-Jan, they won't get a Feb payment (if it comes through, DON'T spend it, they WILL take it back!!!), even though that Feb payment is for Jan.

I knew this was coming, and the same thing happened with mom's pension, but it still sucks they do this, because the person will still have expenses for that month! They should pro-rate the payment, rather than denying it. We get no partial refund of mom's rent, which the pension and SS cover about 1/2 of. I find this reprehensible. My last job was initially monthly pay. Can you imagine working for 2 weeks, then passing, and having the company say 'Gee, your LO didn't finish working all month, so we're not going to pay'? In the case of the elderly, we all have enough on our plate, and perhaps extra bills for them, and they pull the rug out from under you at the worst possible time.

I do plan to go back to my post about gov't plans to assist care-givers. I am VERY disappointed to see only 2 people followed my link to it. It would be NICE to get this out to ALL caregivers, so they can contact their Congressional reps/senators. In addition to contacting my reps about this, I plan to mention this taking of the final payment. Many people will NEED that to cover costs! There was enough to cover costs for my mother, but I feel for those like OP who have no other income and struggle to take care of her mother while having homelessness loom over her! Oh, let's not forget selling the home - it jacks up the income, so Medicare levies a penalty on you and you pay MORE that year they "review" (should be 2 years after the sale) for Medicare! Mom's share was not that much, but enough. The first stimulus got shorted too, because the 2019 taxes were electrons passing in the void when the payment came through, and they used that previous year, so she got less than half of it (we file for it this year, to recoup the rest.)

see post under this
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disgustedtoo Jan 15, 2021
EVERYONE, please pass this on and contact your reps. We DO need to let our "leaders" know what's needed!! The more who can write to them, the better! This describes a bit about the news link included AND provides links so you can look up your representatives and Senators. WE are a large group, WE can help make a difference!

https://www.agingcare.com/discussions/suggestion-to-become-active-in-promoting-caregiver-help-not-a-question-463299.htm?orderby=recent

Anyone know how to "promote" this, so it gets to more people? We need to get everyone to write to their reps. If you're busy or don't know what to say, find your reps/senators, copy the news article link in the above posting, post it into your comment to them and say YOU SUPPORT THIS INITIATIVE!

It may not help all of us, but those of us who've been on the journey should sympathize with others and want to find ways to help them. It might even come in time to help us if/when it's our turn...
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Seems Mom does not own her home. Even if getting Medicaid for any reason, she has no assets to pay it back. So you have nothing to worry about. Children are not responsible for parents debts.
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Reply to JoAnn29
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Alvadeer. Thank you for your kind suggestions. Did you mention in your message my mother would have to repay Medicaid? I'm trying to get her qualified but I think it's really too late for that to happen now that she's so close to passing. She has medicare but they only seem to cover medical services. I'm 70 years old and worked approx 16 years a go off and on due to circumstances. I may get on a wait list for senior housing once I've fulfilled my duties with my mother. Yes I feel desperate and often depressed but my faith has carried me through this journey. I just have to daily remind myself of the millions of others also doing this work. Prayer and daily biblical verses are very comforting as well. God bless you.
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MACinCT Jan 15, 2021
Your profile says you are renting. Medicaid only looks at ownership. Not furniture and not for a single car. Medicaid will take her social security payments except for $40 for personal expenses.
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Start by not wasting money on a burial. Cremate Mom or donate her body.
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Reply to ZippyZee
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Please don't use Craigslist for ANYTHING, but especially not to find a roommate. I've had every lunatic and loser in Colorado hassle me each time I've tried to sell anything on that site and as a woman alone, you do not want to invite trouble to your front door. If you want to sell a bunch of furniture and personal belongings, call an Estate Sale company in your area to hold a sale for you on the premises or on an online auction where the audience is larger and the proceeds will be greater.

See if you can find a roommate thru the local church or senior center or ask hospice for resources. Also ask friends and have your son put the word out as well.

Wishing you the best of luck with everything that's going on.
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Pasa18 Jan 16, 2021
I came to that conclusion as well about selling items. Already even neighbors and seemingly well-intentioned acquaintances seem to be scoping out mom's home.
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It’s really hard to plan or think when you are so focused on the present with your mom. In some states Medicaid provides burial assistance—it’s not much but it can help a little. In essence you are starting over and you may need to think of options you didn’t know about or hadn’t considered. If you google apartments in_____ wherever you live, you may be surprised at what’s out there. If your area is totally crazy expensive like California another option might be sharing a house. There may be someone your age looking for the same—look on Craigslist. Is there a community nearby that would be less expensive? If you think it would help maybe your son could go with you for a second opinion. When I had to downsize at age 65 I started contemplating what I wanted to take with me and what I was okay with to let go—sell, donate or giveaway. Then when it was time to move I was clearheaded and not mourning things that had surrounded me. What was most important to me? Senior housing isn’t the only option. Good luck!
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Reply to katepaints
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So sorry for your difficult journey. Funerals and burial services are both outrageously expensive. Here in Florida, I was able to get a Direct Cremation (no viewing or funeral service) for both my parents, one in 2018 and the other in 2020. It is the most economical option there is (other than whole body donation to medical science, then they pay for the cremation.) Each one was around $900, not including the county fee for the death certificates or the cost of an urn. They do give you the ashes back in a plain white box if you choose to scatter them.
It sounds like there is no home ownership if you are paying rent. Are there any other assets being left to you? The only thing I can think of is to look into HUD/low income housing where the rent is based on your income (in this case SS benefit.) I wish you luck and Fair Winds and Following Seas.
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Reply to NavyVet90
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Providing answers to AlvaDeer's questions will be helpful.

Regarding burial, there may be charitable funds in your state that help with this expense. Do your belong to a church or faith organization? Please contact the admin with your needs.

Section 8 housing is available to those in financial needs: contact social services online for your county (Dept of Health and Human Services).

Contact your area's Agency on Aging for resources.

Start selling the furniture you don't need on craigslist.org or Nextdoor.com or FaceBook Marketplace. You can advertise selling all of it in bulk for a single price which would make the process easier. Please do some online research to make sure you are getting reasonable value out of the items.

I wish you success in bettering your situation and peace in your heart as you journey with your mother on hospice.
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worriedinCali Jan 14, 2021
There are long waitlists for section 8 unfortunately and the pandemic has made it even worse. It’s not something you apply for and get right away.
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Can you rent a room to suppliment your income? Choose someone you can trust. This will mean getting rid of some furniture and making space in the kitchen or you can share with cooking.
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Reply to MACinCT
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AlvaDeer Jan 14, 2021
Great idea~
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First, I am sorry for what you are going through and facing. It's a lot for sure. Can you not have your mom cremated, instead of burying her? Cremation is so much less expensive(I had my husband cremated 4 months ago for about $1100.) I would then get your name on the list for a government subsidized senior apartment in your area, and if there is a waiting period, hopefully living with your son or relative will be but a temporary situation. As far as your furniture, you will most likely have to put it in storage, until you get a place of your own.
Right now though, just try to enjoy whatever time you have left with your mom, as that is most important. Things will all work out, as they should. Please don't forget that God has everything under control. God bless you for taking care of your mom until the end.
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Artist69 Jan 15, 2021
Thank you all so much for the helpful ideas. I kn ow waiting for housing will take a while. I have been doing the caregiving solo except for help from my son. I don't think anyone should have to go alon e to make final decisions at a funeral home. I wanted to prepay it while she was still fairly healthy but had to stop due to expense monthly. This is I believe the best way to handle cremations or burials as everything is done already and there's very little thinking when the LO passes. This journey is painfully difficult. God bless all of you who are daily caring for your loved one amidst the storm of Covid.
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Dear Artist69 - I’m sorry that your Mom is failing and for the circumstance you find yourself in.

Try sharing your predicament with the social worker from hospice as she may have resources for you. I can only imagine that others have found themselves in similar circumstances.

If you belong to a church, try reaching out to the priest, pastor or minister as the church community may be able to help somehow.

In addition, I have heard that in some states and areas rent is being deferred due to the pandemic. I’m sorry that I don’t know the details, but maybe you would qualify.

Have you considered bringing in a roommate to contribute to the rent? Possibly one of the several people you mentioned that currently live in your relative’s home? Maybe one would like to move out of that congested living arrangement and move in with you?

Best wishes to you at this difficult time.
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Reply to PAH321
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Is this your Mom's home you are living in? Will your Mom be leaving this home to you? Has she been on Medicaid so she will have that to pay back at death? Does she have other assets she will be leaving you?
You will not have to leave the home at once. The funeral should be down to a cremation as that is likely what you can afford.
Did you leave a job to care for Mom and sell a home of your own? Often forum sees people who leave jobs and homes to care for elders end just here, jobless without a history of working and homeless.
I can't think of a way to help you other than to wait and see what assets you may have on Mom's passing if she owned her home; she may not have as you say you cannot pay the rent. You don't mention your age. I would suggest you call your area Agency on Aging. Look it up online. Tell them your circumstances, and your Mom's, and ask for any help or guidance they may be able to give you.
Ask Hospice for guidance on any Funeral Services that are very low cost in your area. Explain your circumstances to them. They have counsel, clergy, social workers, and I suggest you access any and all for help now, and guidance about what best to try in your own area.
I am so sorry. You must feel very desperate.
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