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DerekSchauland Asked March 2021

New to this kinda and just trying to do what is right for mom.

My mom had a stroke last may, has been in assisted living since the end of July. She is insistent that she will be going home this year. The stroke left her unable to move her left arm and left leg and in a wheel chair.


She requires 24x7 care and help getting dressed and using the bathroom. She is quick to tell me she gets her own coffee in the morning (or that she can). She has also mentioned that she could get someone at her house to care for her for 25$/hr, but with the amount of care she needs, the cost to do that, would be super high. So she is in assisted living and hating it most days.


She has gone from living alone and on her own to being in a facility. Some of the things that have gone into care, legal fees and POA paperwork setup and the establishment of a trust for her assets to help keep some things around while she is in private pay waiting to land on Medicaid.


Once this stuff started to happen, and happen fast it did... we have had an estate sale and will be listing her house for sale, she is aware of this but is super not happy with me about it. However, I waited to talk to her doctor for a few months after she went into the facility to see if he thought her situation would change and she might come home. I was told she would not likely live on her own again, and having some outstanding costs to consider and stress about the cost of the facility per month encouraged me to move.


I still feel super new to this as this is the most care I have had to figure out and assist with and it just feels like nothing I do is right, even though all I am concerned about is getting the best care we can for her money.

xrayjodib Mar 2021
Derek,

You're doing the right thing!!

18 months ago my Uncle passed away (I live 1200 miles away).
I flew to California to help my Aunt and quickly realized that I had a huge problem.
My Aunt had undiagnosed dementia and my Uncle had never shared this with me.
I ended up staying in CA for 2 months. Found ALF and sold her home of 43 years.
The guilt was overwhelming!!

Now that I am 18 months out, I have NO doubt that I absolutely did the right thing.

My Aunt has since been diagnosed with Alzheimer's.
She still thinks she's going home every day, but I know she would have died alone in her house if I had left there.

Trust your gut and understand that sometimes what's best for our aging LOs is not always what they want!

God bless!!!

AnnReid Mar 2021
What you decide, after gaining as much information as you can, weighing the options with love and respect for her, and taking into consideration the opinion(s) of those who are trained professionals providing care for her, will be the “right” decision for those of you who love her, and ultimately, for her.

Caring for loved ones has been the most stressful experience I’ve lived through, and I have great respect and compassion for your situation.

Please read your last paragraph, keep it on your phone, and read it again when you feel yourself falter. We who are here ALWAYS feel what you are feeling now, but learn how to find peace by going back to the basics of love and respect, and then her safety. Let yourself be at peace. When you’ve done all you can do, you’ve done enough.

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Frances73 Mar 2021
First of all, it’s good you came to this forum looking for support and answers. I hope we can help.

Second, as my Aunt Betty said " getting old is hell!" It’s too bad your mother cant continue to live live exactly as she wants but the reality is it ain’t gonna happen and the sooner the both of you realize this the better for you.

If she is unhappy where she is maybe a new facility would be better for her. As my mother’s dementia progressed we moved her to a lovely place where she was very happy.

Thirdly, please educate yourself on the rules around Medicaid. If a person has resources to pay for care then that money must be used to pay the fees. No sheltering funds for heirs or transferring property to shield it from the government. Medicaid is a program for truly penniless people who have no other recourse to pay for their care.
DerekSchauland Mar 2021
We are working through her assets on the way to Medicaid. Not sheltering anything, but the money won’t last forever. Her money is for her care but we want to have a plan should the money run out.
NeedHelpWithMom Mar 2021
Wow! Sounds very good! My state does not accept Medicaid for assisted living. It’s private pay and quite expensive.

Great job on finding a suitable place!
Frances73 Mar 2021
True, most AL places in Ohio don’t accept Medicaid waivers unless you have been a resident for at least 2 years and then only if they have a, usually shared or smaller, room available. Medicaid can be used for skilled nursing care facilities. Note that many SNC homes don’t have a Memory Care unit but AL do.
AlvaDeer Mar 2021
It sounds as though you are doing the best you can and acting as best you can in your mother's behalf. It is important for you to know that if you do not have a diagnosis of incompetence you will not be allowed to make a sale of your mother's house with a POA. A POA acts only as they are directed by the person who conferred POA on them, and can act on their own ONLY when the person is incompetent. Meticulous record keeping is necessary. Know that the sale of the home makes mom ineligible for Medicaid until she spends down the proceeds from the house as well. They are her assets and must be kept as her assets. If you are at ALL uncomfortable or uninformed about the legalities of POA, do seek an Elder Law Attorney advice. Shouldn't take more than an hour of time.
ALF is a good choice to spend down. Most will not keep a patient on Medicaid.
Do not expect your Mother to be happy outside her own home. You recognize she cannot afford to be there 24/7. That is almost certainly correct. She may not be happy again with ANY arrangement as she is looking now toward loss upon loss upon loss, choice, dignity, finally loss of life. There is little to be thrilled about in all that. She may adapt and adjust. As my bro finally said to me "It's a little like being in the Army. I didn't like it a whole lot, but I made the best of it". All personalities and adaptation styles differ.
Sure wish you good luck, and welcome to the Forum.
Frances73 Mar 2021
So true, my Mom complained a lot to me, mostly nitpicking as was her nature. But she was the first one in the activities room for Bingo or craft time!
DerekSchauland Mar 2021
The AL my mom is in, from where I sit is pretty good. Is it perfect, no, but no place is. She has gotten therapy ordered by her doctor, though I am not sure offhand how many days a week they come in, 2 - 3 I think.

The AL is fairly small, 60 or so residents, with about 7 residents per staff member I think. It’s pretty decent as I mentioned. She has a private room as well. I think the biggest issue is the lack of independence that she has being in a facility - and that is not just this one, that would be any. Medicaid is accepted but I need to get through the “you have too much assets/money” stage with them. I think we will be alright, except for keeping things rolling without causing/having too many fights etc...

Riverdale Mar 2021
I am surprised that she is accepted into an AL facility. Neither of the 2 my mother has been in allowed a resident that needed that type of care. The more recent one was much more forgiving to residents,allowing people who were in wheelchairs to reside on the main floor.

I do not feel good imparting bad news and perhaps I am wrong depending on where you reside. My mother sadly now resides in the neighboring nursing home after a serious septic infection left her greatly compromised in many areas. She cannot stand alone or walk. She can ambulate herself up and down the hallways in a wheelchair. Her next door neighbor in the residence can do none of that. She mostly just stares at the ceiling and has to be spoon fed. I have not heard her utter a sound.

I would hope your mother might be getting some form of physical therapy. Medicare is quite cruel about that if a patient is not showing progress. Facilities do seem to still offer occupational therapy which is at least something. Your visiting which is generally becoming better after stark Covid limitations is beneficial to issues you may find problematic. I am allowed to visit for 1 hour on weekdays at present.

The reality of being on Medicaid is that your mother may have a roommate and your choice of facilities may be limited. I would suggest you start discussing this with a social worker. For example the facility my mother is in does not accept Medicaid. They have a benevolence plan which we can try to have her accepted in if she is still alive in a few years when her money runs out. If they do not accept her they will help us find another facility. We are hopeful that will not be the case since she has been paying at this facility since 2017.
Frances73 Mar 2021
True about Medicare. Mom was getting PT after a bout in the hospital with pneumonia. When she stopped showing progress Medicare stopped paying for it. I can’t blame them, if a 93 year old isn’t making progress there really isn’t much you can expect.
NeedHelpWithMom Mar 2021
It’s nearly impossible to care for a person in your mom’s condition all by yourself.

I tried caring for my mom at home and it nearly killed me. Then my brother and sister in law tried and it was tremendously hard for them as well.

What is the atmosphere like in her assisted living facility. Some are equipped with many nice amenities.

Things are very different with Covid though. There are stipulations in place for everyone’s safety but the residents aren’t fully able to a enjoy social life with other residents.

My mom is completely bed bound and I am very happy with the hospice facility that she is in. They can do everything that is needed and we are free to visit her. There are some stipulations, only two people are allowed in the room. Mask must be worn.

Mom is so thin. She is allowed to eat anything she likes. I brought ice cream for her as a treat.

You might want to bring certain things that you are aware of that she likes.

If she is religious, you can arrange for clergy to visit her.

Best wishes to you and your family.

DerekSchauland Mar 2021
Thank you both for the insights - that is super helpful. I am sure there will be more questions to come. Asking the questions in the right way - to make her feel heard and know that there is an answer to come might help.

BarbBrooklyn Mar 2021
Derek, welcome!

I would encourage you to become familiar with the ideas "as good as it gets" and "good enough".

I am an inveterate "fixer". If it's broken, I can make it better! Except that after my mom's stroke, which brought on vascular dementia, I couldn't fix things anymore. I could SOMETIMES make them a little better.

"I'll look into that, mom". "I'll ask the doc what s/he thinks, Mom". "I'll talk to the bank about that". Sometimes you just need to respond this way so that the person feels that their concerns and needs are being heard.

If you are the person who mom sees the most, YOU are the one who is going to get all the complaints and grousing. Don't ask her to look on the bright side; it sucks being old. "You miss your house, I can tell. Tell me about the first time you saw it...did you know right away it was the one?"
NeedHelpWithMom Mar 2021
You’re so right. I have always hated the expression. ‘Look on the bright side!’

Oh my gosh, sometimes I just want to slap Pollyanna types! 😂
NYDaughterInLaw Mar 2021
The right thing for your mother would be to remain living in assisted living (AL). Her needs are only going to increase. AL gives you peace of mind knowing that her needs are being taken care of. She also is around other people her own age. She is safe. Continue on with selling her house and using those proceeds for her care. With spring approaching, her outlook may brighten as she gets to spend more time outside. Stay positive and let her know that she is where she needs to be and that you will continue to manage her affairs so that she is well cared for.

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