Finding a caregiver

r0527

Hello,

I am new to this discussion platform and I’m reaching out to see if anyone has any advice to my situation. I am a caregiver for my father who has had early onset for 8 years. He is reaching the point where he is unable to be by himself at all and has difficulty with some basic daily tasks. He was declined from home health due to his social security income being too high - is there any easy way to get around this? I simply cannot afford caregivers for as much as I need them and I plan to go back to school as I am 22 years old. Has anyone else found any solutions with this?

M1

Rylee, welcome to the forum. Who holds power of attorney for your dad? That is the person who needs to be making these decisions. There are ways to qualify him for Medicaid such that he can be eligible for home health or skilled nursing care. A certified elder law attorney can explain how to go about that. your local Council on Aging may know of other resources too.

Most of us here would tell you that at age 22 your focus needs to be on your own life and i am glad you have plans to go back to school. I hope there are other family members who can assume care for your dad and lift some of this burden from your shoulders.

harshedbuzz

@ryleeschumacher

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

This is indeed an unfortunate situation. I agree with M1 that your primary responsibility is your education and transition into true independence as an adult. Are you next-of-kin or are their others who might be more appropriate to assume his care? If you're it, do you hold POA or guardianship to act on his behalf?

If you bear this responsibility, in your shoes I would look into a CELA (nelf.org) to find a specialist in Medicaid qualification and look into placement. When you return to school will you be living at home and providing care when not in class or will you be on campus?

It can be very difficult to manage in-home caregivers at a distance-- what do you do if there's a no-show or cancellation? Placement in a facility might be the best option in terms of providing an appropriate level of care as his disease progresses while allowing you to attend to your own needs as he would want.

HB

r0527

https://alzconnected.org/discussion/comment/201193#Comment_201193

Thank you for responding, I appreciate it as I am just so lost in this situation. My mother (same as my dads wife) holds power of attorney. Honestly, she is in charge of pretty much everything but is not active in taking care of him at all. It is just me, as we life alone for the most part which is why I want home health caregivers. He is alone during the majority of the day while I work or go to my classes (part time for both) and he is fine being by himself but boredom is what gets him. Along with emotional breakdowns and doing things like overeating or wandering. I have debated trying to find an online program for school just so I can spend more time with him (he is completely fine as long as someone is in the house with him). My mother unfortunately disagrees with home health or any type of care facility as she says “he doesn’t need it yet”. . . But I know that time will come soon.

r0527

https://alzconnected.org/discussion/comment/201276#Comment_201276

I feel as if everywhere I try I hit a road block and by the time I figure everything out it might be too late! That sounds kinda bad I guess but it’s true.

r0527

https://alzconnected.org/discussion/comment/201212#Comment_201212

Thank you for your response. I will be living at home to help with him but classes go all day long and I’m worried about my time management with everything and honestly breaking down myself.

M1

Rylee, i have to wonder if your help with him, however lovingly intended, is enabling your mom to avoid making other necessary arrangements. Are you getting free room and board in exchange for your caregiving? It actually sounds quite stressful for you to try to live there and manage all of your responsibilities. Perhaps it's time to have a frank discussion with your mom about setting a date for your moving out. You should not be the primary person worrying about the logistics of his future care. As his loving daughter, i know you want to spend as much quality time with him while you still can, but that should be in your role as his daughter only.

He is very lucky to have you in his corner.

harshedbuzz

@ryleeschumacher

I agree with @M1

You may be enabling your mom by helping at the level that you are. You might consider moving out with roommates and assisting with dad once or twice a week when it works for you. What's your plan post-graduation?

That said, it's really easy for someone to say, "bring in home health" if they haven't looked into the financial realities of this disease.

Does mom work either remotely or outside the home? Is dad bringing in any social security or other long-term disability? Do they have a long-term care policy to tap into to pay for this care? Money could be a big part of her reluctance to bring in caregivers.

Firstly, your dad probably doesn't need "home health" if he's at a stage where he's bored or an elopement risk. An aide could be hired for companion care, but that costs about $35/hour through an agency. She might pay less if you find someone via word-of-mouth, but that comes without a back-up plan in the person flakes.

She may be holding off because many of the nicer MCFs operate under a financial model that expects family to self-pay for 2-3 years of care before converting the PWD to a Medicaid bed when they've run out of money. She may be holding off to save for her own retirement and elder care given that she'll be on her own. This was a concern in my family. My parents were older, so they'd had more time to invest and were in Ok-ish shape financially. But we had to balance dad's immediate needs with mom's very likely ones in the future. I wasn't OK with spending down for dad when mom (who might not have dementia) would end up in a lesser facility and be keenly aware of it.

I wonder if your mom would be open a day program for dad a couple times a week. These aren't generally free, but are less than care in the home or a MCF placement.

HB

Anonymousjpl123

Hi @ryleeschumacher I am so sorry you and your dad are going through this. I would only add that it may be helpful to talk to any family friends or friends of your dad that you are comfortable with. They may be able to help you navigate this.

If your mom has Power of Attorney and is in denial, it is really important that you help her see that he needs more than she realizes. You may not be able to convince her, but it is worth trying to have that conversation.

It’s really brave and amazing for you to be advocating for your dad. But as others have said, you are his daughter and at such an important time in your own life, you cannot and should not take this on alone. I would also just add that the Alzheimer’s Association has a hotline staffed by trained professionals who really know what they are talking about. I used them several times for my mom.

Also remember it’s very common for people to be in denial about alz/dementia. It’s a really difficult disease and people want to avoid the realities. I’m so sorry you are dealing with this, but glad you found this forum. Great info here and lots of support.

JeriLynn66

Rylee, the hotline number is 800.272.3900. Ask for a Care Consultant.

r0527

https://alzconnected.org/discussion/comment/201301#Comment_201301

Hi M1, honestly sometimes I feel the same - as if me doing all of this is enabling her. But there recently have been 3 separate times where I have left for anywhere from 2 to 7 days and EVERY TIME I have come back dad will be in the same clothes (including undergarments), empty toilet paper roll in the bathroom, and his entire closet poured out of his room. I have had multiple conversations with her, they just never truly get anywhere.

I will say it is extremely stressful, sometimes I even go back and forth with the thought of waiting a few years until I go back to school - just to get things handled here. This is why I am trying to find a way to have some type of assistance at home!

r0527

https://alzconnected.org/discussion/comment/201317#Comment_201317

I originally had been living with roommates about a year ago, but my dad was just not getting the help he needed. He was constantly running away and calling people asking to live with them, which broke my heart, which is why I moved home. - - - we get social security but my mother seems to use that money for "the family" rather than help for my dad (such as any type of health assistance). The concerns of him being bored or running away are very true, he also has trouble with eating, bathroom cleanliness, and a lot of confusion and anger (toward himself).

r0527

https://alzconnected.org/discussion/comment/201319#Comment_201319

Thank You, I appreciate you saying this. I will def look into them. God Bless

M1

You always have the option of reporting your concerns to Adult Protective Services.

harshedbuzz

https://alzconnected.org/discussion/comment/201971#Comment_201971

"We get social security"? Who is we? What would "any type of health assistance" mean to you?

I don't want to be presumptive here or project how I or my son or niece would have parsed this exact situation at your age. When you say "mom seems to use that money for the family" it might be wrong to fault her as operating a household-- housing, food, insurances, utilities, taxes, and all the other costs of adulting-- typically exceed the income of a social security check-- especially if mom's got kids at home. There probably isn't money left and your mom is justifiably prioritizing what she does with their funds.

There's not much "health assistance" out there and almost none of it is free. And as you describe him, he sounds like he's not quite there yet. A day program might be helpful if your mom works or needs respite.

If you believe he's being neglected, APS is an option. It's a dangerous one as your mom would probably never forgive you for it and he could end up with a court appointed professional guardian meaning your family would lose control of his care.

I'm sorry that you have such a sad and difficult situation on your young shoulders.

HB

Me&Sis

https://alzconnected.org/discussion/comment/201992#Comment_201992

I would suggest direct and loving conversations before a call to APS. Consider when you make a call to APS you are reporting neglect or abuse (either by the caregiver or if the person is living independently then self-neglect). Yes, elopements are very concerning and mean that your LO should not be left alone. The behaviors you are describing are also indicators that he should not be left alone. That is the conversation I would have with the POA in your family first, share your love and concern for safety and insist if necessary that a solution is found. I'm sorry I don't have suggestions for financial resources, but a phone call to Alzheimer's hotline can get you or your mom headed in the right direction for assistance with that.