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.
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.
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.
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.
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?
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.