How do you deal with the anxiety of paying for care?

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I keep running into roadblocks with trying to find options for paying for Mom’s care.... and the anxiety is setting in. I have posted some of this before, but…

The goal is to keep Mom in her home. Since about February, Mom's evening care has been paid for out of her savings account at about $5,000 per month, and we are going to be out of money soon.

Last week, I applied for a home equity loan in her name and she was pre-approved (good news). But, a few days later, I found out that the POA I had set up did not include loans. That was my fault because when I did the POA last year, I didn’t include loans as an option. All I wanted to do was be able to pay bills since she couldn’t add me to her checking account because she didn’t have a valid ID. So, I did the POA. Never having been through this before, I had no idea at that time that we would even have to hire caregivers. So, the HELOC is now on hold, until/unless I get guardianship of person for financial.... to the tune of several thousand dollars.... Or a redo of the financial POA with a physician certifying her incompetent (she can no longer sign her name…). We will probably be out of money by the time that goes through the court system…

Today, I talked to an elder law attorney, and made an appointment for 2 weeks from now... more $$....

Over the phone, I inquired about the Medicaid waiver in order for Mom to stay in her home once her assets are paid down. I was told by several people that there was an 8-year wait list. Well, as it turns out, the State of Maryland put a hold on in-home Medicaid waivers two years ago because the list was too long. The lawyer told me that the only way around it is to go into a nursing home until Medicaid kicks in and then go back home. Then the waiver would kick in.

The lawyer also gave me the name and number of a Case Manager. So, I called her. She seemed very knowledgeable. When I heard her fee, I told her we couldn't afford it....

I feel like it is all on my shoulders, with my siblings letting me do whatever I feel needs to be done. I am the only one who sees the problems and tries to resolve them by making phone calls while I am sitting with Mom... (I am making one of my brother go with me to the appointment with the attorney, though.)

My stomach has been in knots all day after getting all this news, thinking of all the money that has to be put out just to make sure things are right… Worrying about Mom running out of money... And trying to face the fact that Mom may have to go into a nursing home -- not because I cannot take care of her -- but because she has no money...

I really thought by now, she would be bedridden -- after all, a PT told me almost two months ago that Mom probably won’t be walking in 3-4 weeks…Wrong. Even after her last fall 4 weeks ago (and 5 stitches later…), she has been doing surprisingly well.

With Mom being 94, how can anyone even guess how long you need the money to last??

This has been a real learning experience – and one I do not want to go through again…

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rsonju, thank you for your reply. Mom is receiving palliative care through the hospice program. She has the bed, wheelchair, etc. They don't provided Depends or pads, though. But, that's okay. The aide comes 3 times per week for an hour. Two of the days work for getting Mom out of bed in the morning and bathed. The other days, I have to do it.

Today, I am going to contract with another agency to provide some help getting Mom in bed 6 days per week. That will allow me to go home earlier. But, paying for 12 hours per week is better than paying for 5, 12-hour shifts per week. And, if the V.A. comes through, that will help, too.

I have applied for Aid an Attendance. I requested that they expedite the claim based on her age (recommended by the V.A. -- so that was good to know). The date for them to make a decision is August 26. I have to send them more information, though, which I am in the process of doing. It is good to know payments will be retroactive.

And, to add to the stress... Mom has a water leak somewhere between the water meter and her house.... One estimate was $3600... Today, I will get a second.... It is a good thing I stopped the night-time care...
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Reply to Mapotter
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Have you considered Palliative Care? This is part of Medicare's hospice benefit program but it is for long term care. If you qualify, the program provides a hospital be, hoyer lift, special wheelchair and oxygen equipment for free. In addition, it provides incontinence supplies and any extra medicine that is deemed necessary. It also provides an aide to do bathing, a nurse that comes around once a week and a social worker to check up on the patient occasionally. It is like a nursing home but the patient is at home. You have to provide a caregiver or be one yourself but it eases your financial burden.

This program saved me when my wife became bedridden and I could not afford to place her in a nursing home. Everyone needs to check this program out because, unfortunately, it is not well known.

Another thing to check out, if your father was in the military, is the Aid and Attendance program provided by the VA. This program, if you qualify, provides a monthly stipend of around $1,000 to $2,000 (tax-free) for veterans and their spouses. You can go to "A Place For Mom/veteran's affairs" for more information. Again, this is a program that very few people know about.

There is a problem of doing the paperwork and the long time to get approved. However, once you apply, the VA credits your stipend to a account for each month it takes to get approved. For example, if your stipend was to be $1,200 a month and it took 6 months to get approved, you will get a lump sum of $7,200 once you get approved and will then continue to get your monthly stipend.

I hope this helps!
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We hired an Aging Care Specialist and yes, it is pricey, but I think we saved both time and money in both organizing help and paying for it. The rules for getting aid are absolutely Byzantine. It would take me a year to learn them all. Our Aging Care Specialist is worth every cent we pay her. Maybe give it a try with a limited number of hours?
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Reply to Marcia7321
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Yes, you are doing the very best you can for your Mother. You are a loving daughter & you will be @ peace knowing your Mother was happy. My Mother died in February surrounded by her loving family, in her own bedroom. She was 93.
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CaringRN, Thank you. I know, in my heart, I am doing the best that I can. I know Mom is happier in her home. That is where she wants to be.
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((HUGS Mapotter)) I KNOW the anxiety. My Mother's house was paid off, so my husband & I got a HELOC on her house to facilitate her wish to be taken care of in her home. Seeing the money quickly dwindling down to pay for her care( she had 2 Caregivers that were a God sent), I was concerned she may out live her money. Over time, my husband & I came to terms that, if that were to happen, we had done everything possible to fulfill her wishes & sometimes you run out of options. The house would sold & the money from the sale would be used to care for her.
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Thank you, Frances. My Mom's doctor does not have a social worker on staff. The hospice social worker doesn't seem to be able to provide that information. I think because she only handles palliative care and hospice issues. I did find a good resource at the department of social services. I found out from her that we did not need guardianship in order to put Mom in a nursing home. There is a surrogate law that would apply. All my siblings just have to agree. Good idea about legal aid.

I am back to hoping we don't have to do the nursing home route. If my brother passes before her, that would be a different story....
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Thanks Frances! It's my turn now to try and place my mom....
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Reply to mally1
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Some ideas based on my own recent experiences with elderly parents:
Does your Dr have a social worker on staff? They might be some help in directing you to services.
Ohio has a senior service called Passport that will help connect you with service providers both private and public, like rides, meals, etc. by County.
Local Senior Services in Ohio put me in touch with with pro bono (free) legal advice, you get a 30 minute consultation plus follow up calls. This alone saved us hundreds of dollars in legal fees.
Catholic Family Services was a HUGE help in providing information on local services, how to sign up for Medicaid, etc.
Call the supplemental insurance company, Medigold was able to give me some info and direction.
Get the forms and sign up for Medicaid. Don’t worry about the waitlist, this is a lengthy process and anything you can do to be ready is an advantage. Rules change all the time.
Talk to as many people and orgs that you can, compare and verify advice because aging and care is a very complicated business. I got lots of conflicting info and had to keep asking questions. Be patient and polite, apologize and plead ignorance but there are a lot of people who can be helpful if you are persistent.
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Reply to Frances73
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Nicenurse, one brother lives out-of-state (only 1.5 hours away), but he won't help. He only tells us what we need to do.... The other brother who lives close enough, helps some (mainly all day Saturday), but will not stay overnight anymore (says he can't handle it). My sister has MS and cannot help. So, that leaves me and the brother who lives with her -- but he has pulmonary fibrosis, leukemia, and now anemia.

I/we did decide to stop the evening shift. We did that initially because Mom would get up at all hours of the night and fall. My brother couldn't handle it anymore. But, now Mom seems to be sleeping most of the night. She also doesn't seem to be able to get out of bed with the rails up. If she does fall, we have a fall mat. I still think we can keep her as safe if not safer than a nursing home would. Why send $5000 per month to have someone watch Mom sleep. So, I feel a little bit better about that. If she does fall out of bed, we have a fall mat. I still think we can keep her as safe if not safer than a nursing home would. We may have to hire someone to help get her ready for bed so that my brother doesn't have to do that (she can be uncooperative sometimes). And, that way I don't have to stay so late every day.

Thanks everyone!
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