For those agonizing about placement of a loved one...

I am SO glad you are writing this. I cannot myself even begin to imagine how you do this. I simply could not. I am not capable enough, able enough in any wise, and could not begin to imagine it. When my brother was diagnosed with a brain tumor (benign and likely long standing) sitting on his medulla and ruining his balance, and a probable early Lewy's at age 85 there was one brief shining moment when I said to myself "This man has for all my life been the single certainty, the most caring, the best thing that ever happened to anyone; now he is failing. And if you cannot take on his care in some way, what are you worth". The answer came to me pretty quickly. Perhaps I am not worth a whole lot, but I will do what I can. I will oversee his money so not a drop is wasted; I will be power of attorney and visit him as often as I can (I am no. cal and he so. cal). I will watch over him the best way he can and I thank all the powers that be that as a waiter he saved up enough money to last him until he dies in Assisted Living. But I cannot do it myself. Not mentally firstly. Not physically. Not emotionally. Not in any way. I was a nurse all my life. I talk with them at Dee's assisted living, and I know that guilt is the way of it with families because most of us are good and decent people, flawed, but trying. And decent people feel inadequate and guilty about EVERYTHING from their parents to their siblings and their children. But the truth is my bro has surprised me. Living all his life much like a monk, a simple life with a small footprint upon the earth, a gardener and lover of nature--I thought he would never adapt and adjust. But he HAS. And is it perfect? No. We are old. This is the long slow slide. We have had GOOD lives. It's OK. I wish people would not take on more than they are able, and break themselves mentally and physically. My heart goes out. And yeah, you are heroes. Honestly, look around the forum. It's FULL of heroes.

The value that an eldercare lawyer adds to this situation is that s/he can recommend how best to ask for an exception to the amount of DH's income that the State says that you are allowed to keep.

As Igloo always says, a Medicaid application where a community spouse is involved is not a DIY project. If the SW at the rehab cant help, ask the business office for someone to sit with you to explain it.

Good luck Joy! And big (((((((hugs)))))))).

I spoke with the social worker at rehab and we are having a care meeting next week. I am going to ask that my husband not be told of this meeting. I need to speak frankly with the SW and because he talks over me and tends to treat me like I don’t have a brain in my head during these meetings, I need to speak with her alone.

“Denial”, Gladimhere? Absolutely. On both our parts. This is why I need to speak with the SW privately. I need someone, an outsider so to speak, to tell me he is becoming beyond my care, or will be soon. When he comes home from this stint in rehab, I don’t expect him to be any farther along than when he left. This is a respite for me.

Barb, if I knew for certain that I could remain in this house and keep my much-loved dog, I’d start a Miller Trust immediately. No, they probably wouldn’t “impoverish” me, but would they allow me enough to stay here? Medicaid doesn’t care about my dog or about putting me through the stresses of moving because I wouldn’t be able to afford to stay here. That’s what scares me. No, we are t working with an Elder Law Attorney because like so many other posters tell us, we can’t afford the fee. I know I can call our Area Agency on Aging and based on what the SW tells me, I just might.

Beatty, thanks for your warnings about the BP. I am under a doctor’s care for it. I take a reading every night. I never skip my meds. I do the low-salt thing. And again, I have my dog! ❤️😁

I will post next week about what the social worker says. Thanks again for caring, everyone. ❤️

Joy, the time to have the discussion with the SW is when he is still in rehab.

What is it about the Miller trust that you don't understand? Are you working with an eldercare attorney who has YOUR best interests at heart?

Thankyou for this post Ahmijoy. From reading your caring story I know my Dad feels the same way for my Mum. I am watching him start to wear out, getting thinner, carpal tunnel both wrists (? pushing her wheelchair), being sleep deprived. I also saw how relaxed he became when she went to respite care when he was recovering from his hand op. I've raised the questions of a placement, but like you, he's not ready yet. He also missed her & he's mentioned how lonely he would be if she hadn't survived her stroke.

I do worry about his health though.

And I worry for you! Having seen both my sister & Mum survive strokes, please take the blood pressure seriously.

Turn that around another way. Change your justification. Instead of I cannot do this anymore, what about he will receive better care and what he needs there.

What plans have you made for his care, Joy? What if you were to pass unexpectedly?

Why not have the social worker visit now? Rehab may even have their own.
Sounds like this may just be a bit of denial?

And yes you would be able to remain in the home. Medicaid will not impoverish you.

I understand what you all are saying, Friends. We are lucky to now be working with a really helpful Home Health Care Agency who was coming out before hubs went to the hospital for his low BP and MRSA. I trust this nurse much more than the “brutal” one I wrote about before. The agency is also planning to send out a Social Worker when hubby returns from rehab. At that time, we will have a VERY honest discussion with the SW. I want to find out exactly what would happen if we applied for a Medicaid Waiver. Would that pay for LTC for my husband? Would I be able to stay in my home? The last time I spoke with a caseworker about a Miller Trust, I was so confused I didn’t know which end was up.

Friends, understand that I am the sort of person who has always put other’s needs before my own, and this includes hubby and my Drama Queen Mom as I was growing up. To assert myself and say to him, “You have to go to a nursing home because I can’t do this anymore.” is totally against my nature and the way things have been for our 45 years of marriage. But I know that if he doesn’t make significant progress this time around in rehab, he’s going to have to go. And, I plan to tell him this. He needs a dose of reality as he lies in that bed having people wait on his every need.

Thank you all for your “reality check”. Sometimes others can see things that we cannot.

What will that boundary be? Will it be when your blood pressure is dangerously high? When you have a heart attack or stroke? Wouldn't it be better to plan the placement before it is an emergency situation and you are left with what you can find?

Do you have a plan for if you pass from that heart attack or stroke? Ahhh, Joy, he is in rehab now, you are feeling better than you have in a very long time. Would it be best for you both if you look into placement for him now?

Does he need rehab occasionally? Was there an event that placed him there now? I would think this would become even more frequent as his care needs increase.

Your body is telling you that you are in jeopardy, why not listen to it and place him in a home?

Ahmijoy, you say you will place him in a NH "some day", but mission creep can make it almost impossible to recognize when that day comes. Do you have a firm boundary line?