My friend has a condition of the brain which affects his nervous system and most of his bodily functions. It's only gotten worse as time has progressed which is the nature of this condition. He is in a wheel chair now, has no use of his legs anymore, is incontinent both urinary and bowel. I believe he is also experiencing mental decline.
I shop for him, do his laundry and cook for him occasionally. Otherwise I get him frozen and microwavable foods he can prepare himself. He takes care of his own incontinence changing and getting dressed.
The problem is, I have been having a really difficult time so far finding help for him through Medicare or Medicaid. We live in AZ and I recently applied for their ALTC but the representative who interviewed me on the phone said he may fall in the mid range of qualification for the program. In other words he may not qualify as he isn't on meds at all or doesn't need enough help around the house yet. That's because I help him very little because as I told the rep I didn't want him to become totally dependent on me. And that I have no interest in being a caretaker, but I have no choice right now till I find help. I just want to find the help he really needs and get my own freedom back too.
You can also contact the Disability and Special Needs Board of your area.
Once he is approved through for this service, he will be given a Case Worker. The Case Worker will begin assessing his needs. Placement to be one of them.
There is no reason your friend can not get any help if he is in a wheel chair with low income.
Thanks again for the info, greatly appreciated!
Comes from experience as I tend to get way too involved with 'fixing' other people's problems. It has ended badly in most cases, as I tend to try to be a fixer, and I can't. People will lean on you as much as you can tolerate and then some.
I 'helped' a 'friend' who was in over her head with family drama, money crises, you name it. It took me about 6 months to realize she was leaning so heavily on me I was crashing and burning. In the end of trying to help her, I couldn't bear to even look at her--she made zero progress towards her stated goals and is far worse off now than when I started to 'help', 2 years ago.
In retrospect, I should have been working with APS, CPS and the welfare system, right from day one.
And she will not speak to me anymore--just mean looks and hostile comments that come through the neighborhood grapevine. I regret every day I gave her for 'help' as it just slowed her down even more.
Often it's best to have a disinterested 3rd party managing things and you simply be a friend who isn't 'there' 24/7.
From what I know, the person that I helped in the past continues to use others just like she did me. It’s a shame.
As soon as people catch on though, they drop her like a hot potato.
Certain people are really good at deception. They fool people for awhile but that doesn’t last forever. They get found out for who they are eventually and their words go in one ear and out of the other. No one pays any attention to their pleas once they reveal their true character.
You have, with all kind and marvelous intention, got yourself in a bit of a pickle here, doing things which will become more and more "expected" of you and more and more impossible to do. Things which a caregiver would be paid to do. The boundaries will get very muddled. You are already a caretaker in so many ways, and it will only become worse as you say. Your intervention is stopping his accessing a system there to help him, and stopping his realization that there are limits on the amount of time he can stay self caring. I am glad you say you are helping "very little", but attempting to find a living situation is helping a whole lot, and with his limitations there will be few places willing to take on someone in need of this kind of care.
Your intentions are the very best, but I think from your message I can read that you know this isn't going in a good direction. The representative "knows you are there" and that will not help him get into the immediate care, because that rep is writing down in his or her notes that he has assistance with meals, shopping, whatever. He is failing to qualify, likely, because of YOUR care.
Please withdraw yourself and speak honestly with the representative, telling them what you can and cannot do ongoing. And please do not take on this care for which others would be paid a salary. This is, I can only imagine, HEARTBREAKING to witness. I wish I had a better and more compassionate answer, but I just don't. You DO need to get your own freedom and life back. And whatever excuse you make ("two jobs now", "I just can't, no time, schooling, responsible to","must move to blah blah". Or just honesty such as "I thought I could help and be useful but I am feeling overwhelmed and torn. I am so sorry. Let's speak to your Rep together because I can't go on being a caregiver, and not a friend.")
I am so sorry for you both. What he is living, what you are witnessing and feeling helpless, fraught, and sad. It has always been my nature to be a "caregiver" and I feel this to my bones. When I became a nurse my Mom said "Good! Now you will do as a job what you try to do always anyway. You cannot live a life chosing the ill kitten from the litter, losing it, and finding the next most ill". We had an honest discussion because what she said seemed to me then so cruel. But she was right. I was doing that in every aspect of my life, with friends, with animals and even with husbands. Caregiving is still a part of me, but I am more realistic now about it, and it's been a hard journey. I know my limitations and I know them certainly, but it took 78 years to get here.
Somehow you need to get back to "friend" from "caregiver". I am not saying in ALL ways, but with some realism seeping in.
Everyone can learn an awful lot from this response. It is one of the most direct, to the point, honest and well written answers I have ever read on this site.
Prevention of any further issues is so very important.
I bet so many of us can see a part of themselves in this response.
Thanks, Alva.
Blue, I have no experience with this kind of situation, so I'm just kind of thinking out loud here. Some random thoughts:
1. Does the county in which you live have a health department that might offer suggestions? Same with the state? Or social workers who can help? Sometimes the local folks can offer more than the federal government entities.
2. Does his doctor for the brain condition have any suggestions, especially as to organizations specifically addressing his condition? They may be more knowledgeable as to help if they focus on that particular condition.
3. Can the ALTC representative clarify whether he does or does NOT qualify? I would think this could be done with some research; someone has to know for sure whether he can qualify.
4. If he "doesn't need enough help around the house", don't share what you're doing for him, letting the governmental reps think you're available. If he's not able to get out and get meals, then I think that practically should be an indication he needs help, whether he's on meds or not. Using a wheelchair on a regular basis would seem to me a strong indication as well that he needs assistance.
5. Is Meals on Wheels available for him? Contact his local senior center, and ask as well if they have a staff social worker. He/she may also have some suggestions, and he/she's right there in the community and may have better insights.
I hope you can find some new or different sources that lead you and your friend to assistance.
I imagine it is exhausting and extremely stressful trying to help him find a solution that works. Definitely a tough spot to be in.
That is exactly why I see "homeless" "mental disabled" adults walking the streets every day.
Where is their care? Where is their protection? Where is APS or the Welfare?
Thank God for people like you.
I am happy that you are reaching out for help. It’s great that you realize that you do not wish to be his caregiver.
It would be worse if you were confused and did allow him to become dependent upon you. That would only send unfair mixed messages to your roommate. Plus you would feel awful bailing out on him at a later date. You don’t owe him anything but it is very kind of you to try and help him get through this.
Where have you looked regarding finding help for him? Can you provide a bit more information so posters that are responding to this question know exactly what the situation is.
Wishing you all the best in receiving help for your roommate.
Been a couple if months now, never heard back from anyone.
Also tried contacting the VA locally to see if he might qualify for anything as he did join the Marines back in 1976 but only did 6wks. in boot camp before being honorably discharged for some reason. I sent for a copy of his DD214 on the 180 form back in May and still haven't received it. Wanted to get his medical records from them to find out if his condition had anything to do with his discharge as my friend told me that the VA is the one who diagnosed his brain disorder called OPCA , for short. Haven't received any of that either. So that's where I'm at right now with trying to get him some real help.... Nowhere.
You need to be an advocate for your friend. Your helping him is so kind and beyond the call of friendship. It will probably get 'worse' over time, and you yourself will age and need to care for yourself, and then your capability to help him will be lessened.
Gov't programs are notoriously hard to navigate. I tried to help a woman I know find gov't subsidized housing and she was turned down, told it was an 8 year wait. She gave up trying and now, 3 years later, gets a call that there is a place for her. If she's just done the legwork, she'd be able to get out of a terrible marriage and be on her own, something she says she desperately wants.
Now she's at the bottom of the heap.
I don't know the ins and outs and what all needs to be done. I just know not to take the first 'no' as the absolute answer.
Others will weigh in and have better, more succinct advice. Good luck and God bless you for your kindness. (You are very wise to keep boundaries in place so he won't fall into the habit if using you for everything. It's a slippery slope.)
And I will not take no for an answer until I can find something suitable for him. I just have to keep searching.
You mention getting him a new place to live. Do you mean his own apartment or a facility. You could talk to the doctor about facility care as well. It will all come down to the medical evaluation of his needs.
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