My brother, my only sibling, is 13 years older than me (he's 69; I'm 56). Based on my work with children with autism, I suspect that he's on the high functioning end of the spectrum himself. He never left home, married or had children and lived with our parents until they both passed away (Dad 4 years ago; Mom 2 years ago) and then moved into a senior housing complex 3 blocks from my home after we sold our parents' home. Our parents did everything for him and never fostered independence, although he's proven he's capable of living on his own. I manage his finances and am his legal representative because he has some cognitive issues.

He's generally very easygoing and doesn't ask me for much, but lately he's become difficult. He suffers from social anxiety and OCD and can be a bit of a hypochondriac. For the past month he's been battling constant congestion and post-nasal drip. With no fever and clear mucus, and based on the timing, I guessed it was seasonal allergies. He insisted he had a serious lung disease. I took him to his doctor, who confirmed allergies and recommended Claritin and Mucinex. My brother took his advice, then called to tell me a day later that they weren't working and took it upon himself to walk to the pharmacy and buy Allegra, which he said also wasn't working. He insisted that I take him to the hospital; I refused and patiently explained that his own doctor diagnosed him with allergies.

He called me at 9:00 this past Sunday morning saying he was weak and needed to go to the hospital. Not knowing if it was something serious, I dropped everything and took him. Three hours later, after blood work, nasal/throat swabs and a chest x-ray, he was diagnosed with...allergies and sent home with a prescription for Zyrtec and Mucinex. When I called him yesterday he said he felt better.

Today he called me again saying that the meds aren't working, despaired that he would never get well again and that he had to go to a "special" hospital. I asked him what he meant by that and he said a hospital that knows how to treat what he has. He resolutely refuses to believe he has allergies despite two diagnoses from two doctors and he's driving me nuts. I expect him to call me in the middle of the night soon to demand that I take him to the hospital again.

I was our parents' caregiver at the end of their lives and the stress nearly killed me. This is only the beginning with my brother, and I'm already feeling stressed. I have a household and business to run, and my time is already limited. Because of my brother I'm already two weeks behind in yoga teacher training, and I have to complete the course within six months. I can't go back to being a full-time caregiver again but I'm all he has. We have no other family and he has no friends due to his social anxieties and life-long self-imposed isolation.

I can't do this.

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I don’t know that I have answers for you, but I understand your position. I, too, have sole responsibility for my disabled brother, after caregiving (and burning out on it) for years.

So far, I am handling it by...

1. Setting kind but firm boundaries (I do not jump when he texts or calls. I calmly assess what is happening. If I suspect he is mountain out of molehilling, I suggest he call an ambulance - I don’t live in the same town. That usually ratchets him back down.) I also remind him that he is a grown man and that I respect that;) I will allow him to handle his own life. I help where I can, but it will be on my schedule and not his. If he isn’t comfortable with that, he is welcome to assign PoA to someone else.
2. I have PoAs but will not even think of pursuing guardianship...
3. Bringing in a team... I got him on Medicaid, they provide a social worker and an RN. I have made it clear to them that they are his team, and I will back them up and care about him, but I am not responsible for him. He is a grown man, even if he is compromised. I am a sister, not a mother. I have done this before, and I cannot do it again.

Even with a pretty healthy plan, it is wearing me down quickly. Especially as he has an incredibly difficult personality to begin with.

If this is a new behavior, you may need to dig a bit deeper. Rumination/obsessing like this can indicate dementia. And 69 isn’t too young for him to be heading in that direction. You mentioned autism spectrum and that type of thing can obviously be part of that too. It just depends on what is normal for him. It sounds like he has been pretty fine on his own (not needing much from you) up until now. If new fixations keep developing, you may want a geriatrician/neuro to look at him.

Either way, just know you are not alone and someone gets it. Having a compromised sibling dumped on you after years of caregiving (and it’s burnout) can feel like a fast trip to hell. Even worse if the relationship isn’t really close and they don’t bring much joy to your world. Hopefully, others will have thoughts as well. I hope it gets better for you.
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Harpcat Mar 2019
Good response!
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I am in sort of the same situation only mine is a 29 yr old nephew. He came to live with my Mom in 2008 after being raised by my brother after my sister's death. When Mom passed 2 yrs ago, I was 68 and realized that in 12 yrs I would be 80. Since he has lived with Mom I helped him get a Special Needs Trust and me POA. Medicaid and eventually SSD. Got my sisters Annuity reinstated because of his disabilities. I am so tired of dealing with paperwork and lawyers. I contacted the State Disability Dept and asked if they would be with him for the rest of his life. They said yes and excepted him to their program. His rent is 50/50. He has a budget. He signed up with Resources for independent living. He sees a coordinstor from the State and from RFIL. Little by little I can back away and allow them to help him. I will still need to oversee him and I drive him locally. But there are transportation sources if he needs them. He now has people.

Like your brother, Pat is a high functioning Autistic. But his other disabilities outweigh the Autism so it was put on the back burner. Everything is immediate with him. I tell him not important enough to drop everything at that moment.

Its a shame Mom and Dad didn't make him as independent as possible. Its hard at his age to adjust to all the changes. Maybe brother would do better in a group home? Is there Autistic resources near you?
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499HopeFloats Mar 2019
“He now has people.”

That is exactly where I am steering my brother. He needs people of his own.

I am so sorry, Joann, that you have had all of that to deal with. The paperwork alone is a complete nightmare. He is very lucky to have you.
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I think you have to do what is best for you at this stage in your life. You do not have to take over the role that your parents did. I very much resented doing that with my brother. I loved my brother but he had a drug problem that was bigger than he was.

My older brother was not 'special needs' but was very needy nevertheless. He was a heroin addict since the age of 13. My parents stuck by him, when most wouldn't have. Well, as their health declined they expected me to care for him. He had HepC and loads of other medical issues. He died at 67 years of age. I did for awhile but it took it's toll on me, physically and mentally. I was at the hospital with him so much that people thought I was his wife! I did all of the doctor appointments, hospital, shopping, errand running, etc. for him but it became unbearable due to his drug usage. I made peace with him in hospice before he died but I had to cut him off and tell my mom that I wasn't his mom, wasn't his wife, wasn't his child, and just because I was his sister I did not have to care for him. It's complicated, exhausting and consumes our lives. Take care of yourself. Enjoy your life.
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A couple of things to clarify that will help any other answers -- and btw, thank you all so far for your help:

My brother lives in senior housing. It's not a facility; it's an apartment building for low-income seniors in which rent is subsidized by the state housing authority. His portion of the rent is based on his monthly income. He makes less than $900/month from Social Security because of his short work history. He doesn't qualify for Medicaid because we equally divided the proceeds from the sale of our parents' house after paying capital gains taxes. It's a sizeable nest egg for him to live off for the foreseeable future.

I'm reluctant to hire an aide because my brother is very trusting and gullible, which is why his bank accounts are in both our names and he doesn't have a debit card, which is fine with him. An aide we hired for our mom in her final months borrowed $600 from him and told him not to tell me. When he finally did tell me I confronted her and reported her to the agency, who fired her and paid him back the money from her salary. I will always worry about any hired help taking advantage of my brother's disability.
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NeedHelpWithMom Mar 2019
That's a sticky situation. She should have been fired. She took advantage of him. I would be hesitant to give him a debit card.
TS, is it possible your brother is beginning to have panic attacks? My mom has recently been calling me, slightly hysterical, about something or other, mostly things that can easily be solved. So I calm her down, telling her "Well, is it imperative that your helper show up right at 7am? Maybe you should give her a few minutes; what if she doesn't come and you can't reach her? What's the worst that can happen? Then what can be done about that?" Etc. etc... You can try to talk him down, rather than run him to the doctor/hospital; anti anxiety meds are also a possibility; I've had panic attacks, so this scenario is somewhat familiar, and meds helped.
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I so get you stress levels. I am one of 9 children and not mom's favorite by any means however the only one who is activtivly managing all of her health issues. Finally do to her MD putting her on Zuerelto and having severe reaction to it bleeding internally and externally kidney failure copd heart failure failure to thrive masses everywhere she is in a skilled facility she doesn't want to be in for the rest of her life ugh. I am 50 3 children under 15 a human two dogs a cat a home of my own and currently packing my mother's house filled to the top single handed. I also have my own health issues. Not one of my siblings offer to help in any area it's crazy. The stress and over load seems unbearable at times. I often get little to no sleep my entire house is falling apart my chores behind. Did I mention the one who is "in charge " and the beneficiary of her insurance etc does nothing ! I think I have learned a valuable lesson Never Again ! I only hope my kids do as I say when I can't manage place me before you spend 3 years filled with this horrible stress ! Stress kills it's proven something's are beyond our abilities. It doesn't mean we don't love them by placing them the get professional care and we get to visit and enjoy me win win .
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lindasmom Mar 2019
Your post touched me. 1 of 9 you would think the odds would be that you would have help. I can relate to the disruption and juggling to your life and the complete stress that comes with that. Hang in there! I feel that you are doing the best you can. I can't say that it will get easier but it does sound like there will be less to juggle after some tasks are completed if that makes sense. Bless you and big hug.
I’m in a very similar situation and I can only sympathize. My brother is a veteran with ptsd and already had an undiagnosed cognitive disability prior to serving in Vietnam. I’m primary caregiver for my 94 yo mom and I’m currently at the hospital with her. I have had to leave my family almost daily for her for the past 5 years even though she is able to live in her own apartment. I have also had to leave a job. Now my brothers needs are growing and I’m really worried about what the impact of that is going to be.There is no easy answer to any of this. So again, I empathize with you and hope that you can find a way to proceed that’s best for you.
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Edward1234 Mar 2019
Best wishes to you. You are a special person for all that you do.
Hang in there. Caring for your brother does not need to be a life long direct or daily care giving role for you. Just as you are transitioning your life into a new phase, so is your brother. He may need more help during the transition than he will after he has found his feet and had established other resources.

I completely understand being concerned that anyone engaged to help your brother is also a risk to exploit him _but_ he does need people. You probably need for him to have people too so you don't stress about his care so much. You also need to get something in place in case he survives you. My read of your post is that you want to know and insure your brother has his needs met, but do not feel up to providing all or even most of the hands on care he needs.

My first suggestion is that you provide your brother with more hands on information about allergies - maybe inquire with an allergist office about a good book. It's possible he's doing something that is making his allergic reaction much worse, maybe leaving a window open overnight that lets in a lot of pollen or not emptying a vacuum or cleaning its filter? A book would also tell him that most medications take 1-2 weeks to become effective. Consider that his allergy problems may be impacted by something else that is impacting him and try to have a more general conversation about what's going on in his life.

My second suggestion would be to get your brother formally diagnosed so that he can apply for a Developmentally Disability Wavier. The wavier will allow your brother to access support networks and services including case managers, adult day care, supporting living services, transportation services, etc. People who could be his daily contacts and first line resources for a lot of those "immediate" attention needs your brother has. Some to many of these services he may not need so much now as he might when he ages. This could be a good source of people with oversight by agency personnel.

Since most exploitations happen in secret I suggest you set up an arrangement where there is at least financial reporting to or oversight by multiple people to handle your brother's money. My asthma has always threatened an early end of my life so I set up an "elder care and youth education" trust (which would have received additional funding from life insurance if I died) with an arrangement for successor trustees and a list of people to receive an annual report (mostly the named successors) on how the monies were spent for oversight. The people receiving the report do not have to be named, you can also use positions; for example I used the treasurer of a small local church as one of those receiving the oversight report.

The second feature of the trust was eliminating possible conflict of interest over spending the money vs. not spending in hopes of a future inheritance. After the death of both parents and the youngest child in the next generation reaching 25 years of age, any remaining funds went to a charity.

It may take some time and your brother will always need someone supporting him, but you can set your brother up to be fairly independent from you.
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Don’t do it. If he has resources from your parents, use it to get him professional care. Otherwise, let him go on Medicaid. He has disabilities so there are provisions for this.
You can still see him and take care of a few things but I strongly suggest that you do not take this on all by yourself. Get help. Call your local Aging Care facility or your doctor. Your brother is disabled and care is beyond your capabilities.

get help, please.
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Can he be placed in a home with other similarly challenged adults? I think they're called Personal Care Homes, but I'm not sure. I think they house several people with mental disabilities, and they have a responsible adult there all the time, and perhaps he could learn some social skills, independence, job training, etc. That might be good for both of you. I'm sure it would be an adjustment, but in time, he might like it. If it doesn't work, you could always take him out of there. Of course, I'd suggest checking these places out first. I understand your stress. We took care of my mom with Alzheimer's for 5 years and 3 months. It was an almost constant stream of paranoia, illusions, etc., peppered with moments of calmness.  Calamity and calm, all within a span of a few minutes.  I was told to re-direct my mom when she'd get in a mood. Sometimes it worked, and sometimes it didn't. I imagine it's similar with your brother.Best of luck.
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NeedHelpWithMom Mar 2019
He is high functioning. Would he qualify for that type of group home?

Would be interesting to know.
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