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 Mom has babied him his whole life and done everything for him. She divorced when we were barely teenagers and he was her “man of the house.” He has Never taken his epilepsy medicine responsibly since the beginning because he “feels” he only needs 1/2 the dose! Constant issue over the years as practically every other month he would get under the threshold in his body or forget a dose and he’d have to go to ER in ambulance so they could IV it.
Needless yo say when he had his 1st schizophrenic episode 20 years ago he was committed for a week under BakerAct. Upon discharge he lied to therapist and never took the meds they prescribed for him.
My Mom always made excuses for his behavior over the years. He did go on SSID awhile back so at least he has Medicaid to cover his frequent medical needs. I tried to get him out of the house years ago just to bag groceries or something so he could make friends, but to no avail.
Now our Mom was diagnosed with Alzheimer’s 6 years ago and 1 1/2 years ago I finally had to move her into skilled nursing facility. I have always thought the stress of dealing with him caused this. She is youngest of 3 sisters and only one with Alzheimer’s. Her parents lived into their 90s and she is only 75 (diagnosed at 69). So here I am spent over 4 years caring for my Mom during days while he did nothing at house for her. Stress is a killer! He only cares/ed about riding his bike to the Goodwills to look for old records, and couldn’t be bothered. I couldn’t move her to my house since did not have a room available and we have large dogs that she would not do well around.
Anyway I worry all the time now as Mom seems to be nearing the later stages of this disease is he going to be next. I have no other family around and I am left having to oversee he pays the household bills, etc. Moms old house is a pigsty I have to go over and clean up after him periodically. Meanwhile he has not bothered to visit Mom once of his own accord since she had to move out! I have to attribute it to his mentally ill brain, because otherwise it infuriates me! I am working full time, run a small business at home, And have to worry about him too since I am all he’s got.
I think as many times as he has bashed his head from seizures he is bound to end up with Alzheimer’s too and I won’t be able to deal with him. He is very stubborn; it was hard enough to set up auto debit so he could pay his own utility bills. Don’t think he would ever give me poa. Just wanted to wish you strength and hugs in this journey ahead. You are not alone out there. This site is invaluable just knowing that others can relate. Many hugs to you!
God bless you. You have been through a lot. So sorry.
I don't understand what others read to create such anger for them, but I think that you are overwhelmed with some one you call brother, that was coddled by your parents until he couldn't be a man. Very sad for both of you.
I read that you want to help but are running on empty and you don't know where to begin because you don't really know what his issues are.
Please get him a social worker or advocate that can help get you both some information. I would call your local area on aging and they can direct you to whom you need to talk to. This will help empower you for future decisions.
I am sorry that you have been attacked by people, please ignore their ignorance and don't feel guilty about wanting your brother to have appropriate care. It is the most loving thing we can do for anyone, making sure the needs are met by professional services.
You certainly have your hands full. I hope you will find a solution from this site or another source. I truly hope things will work out for you as soon as possible. Best of luck to you. Hugs!
He could also start allergy shots--it's called immunotherapy and it permanently helps most people. He'd start by getting a workup by a board certified allergist who'd do skin tests to pinpoint his exact allergies and then make up serums to be taken as injections that stimulate the immune system to fight allergens. He'd get a shot every week for a while, then once a month. It goes on for several years but eventually cures most people of their allergies. He'd have to find a way to get to the doctor each time so that you don't have to drive him but he'll look forward to going once he sees how much it helps.
Good luck!
TSPiggy98, I get it. Caregiving is hard and you have already done your time. If your brother is truly on the high end of the spectrum, he is capable of understanding that you cannot be everything to him. Set limitations and stick to them. If you truly don't think you can help him, then try to get him set up with a caregiver that he can contact. Work with the ombudsman at the home he is in to get someone that can be his contact. Don't feel guilty and don't beat yourself. Best of luck on completing your training!
https://bibleenglish.net/2014/07/15/am-i-my-brothers-keeper/
It doesn't make her a bad person. Just be clear in actions so that he can get the help he needs.
You are feeling stressed because you are older than when you took care of your parents - purposely take a 'sick' day off so that he becomes aware that you have your own health issues because many with health issues like your brother don't fully realize others have some too especially their caretakers - quite often they still see you as about 25 - 30 years old & strong as an ox whereas you are 56 with some of your own issues - he may need to have this explained to him in a calm but well though out way
My parents saw me as a 35 year old but I was 67 with arthritis etc - when I had my knees replaced [both at same time] they thought I was too young until I actually reminded them of how old I was - sometimes even the most well meaning person needs to be reminded of these issues - sometimes more than once - we tend to insulate our LO by 'hiding' bad news like our own health problems & then some wonder why their LO takes them for granted ... here's explanation
* Behavior responses are in place - yours and his - and it will take a mental and psychological 'shift' to change these set up patterns of behavior. Expect that he will 'act out' or somehow behave in ways for him to 'get his way' and maintain the status quo. (i.e., you decided to miss yoga classes, etc., to go to him. I understand doing that once, however if you allow yourself to do it again based on his 'using whatever he can to get your attention, as he is used to,' YOU are then keeping this cycle going.
* You need to create new, healthy responses to his 'calls of need,' so he will know and respond accordingly (threats, anger, whatever he may do to try to get his way). These changes are not easy for either of you. Fears come up. Perhaps guilt on your part.
* It sounds to me that your brother should not have ANY monies of his available besides perhaps $100 a month. If any care provider or 'friend' is able to 'borrow' $600 from your bro - that is a RED FLAG. Plus, you know/indicate that your bro is a soft touch/unable to set limits in these matters or social interactions.
* Could it help him to get the bulk of his financial resources in your name or out of his name so he could potentially get some gov't or county support? You may need to talk to an attorney who specializes in working with people w/disabilities and setting up these things.
* Infection or allergy. I couldn't tell what was diagnosed there. You need support to address his needs so you can be in your own life. And use that yoga training for, not only your livelihood, but for your own well-being.
* You seem to be on the right track - reaching out here for support. Change is not easy. However, you've been through this before and it almost did you in - you know what is down the road, now. The road is here, now.
* If you are having difficulty setting limits and interrupting unhealthy behavoral patterns now in place, get into therapy for professional support. Seems like you are just about there - ready to make some changes.
* I wish you well and appreciate you addressing your needs here in this forum.
Such a kind response. God bless you.
My husband has terrible hay fever and there are years that otc allergy meds don't cut it. He goes in, gets a shot, takes 2 pills daily and feels better right away.
I am sorry you are facing this challenge, he will have to be trained by you. Your parents did everything for him and he has that expectation of you. Teach him what is acceptable behavior and if he is beyond that, find a facility that he can self pay until he qualifies for aid. You may even find a facility that he can afford for the next 25 years.
It is admirable that you want to help, but don't give him more then you can afford,in time, money or yourself. Hugs, this will get sorted out.
I even did the rounds of shots to desensitize. Ended up with systemic reaction and almost died in the ER. Allergies are a pain in the butt!
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.
Typically, even the most anxious, socially awkward residents tend to find a friend or two. That will make him less self-focused will help with his obsessions about his health.
Is he on anti-anxiety meds?
Set boundaries. You don't have to answer the phone every time he calls. He has proven he's not hesitant to go to the hospital, so if he's truly in trouble, he'll call 911.
Appears" too that you are Stuck in this little Dilemma lemon.
Time to Take Mad matters into your own Hands, While you are still Young, hun.
Talk to Social Services, Aged Care, His Doctors, Anyone who can Now step in. He may have to be Led by the Nose to Live in a More Suitable facility for his own Needs.
As Far as anything Else Goes with his Nose? Listen to Him..He doesn' tHAVE "Allergies," He has an Infection, which is Why, No Lie, the MEDS AREN'T WORKING...Doctors Today don't Know Everything, That is why My own Mom died, I Knew BETTER.xx
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.
I'd also tell him some of what you said here. That you have a lot going on right now---'I have a household and business to run, and my time is already limited...and feeling stressed because I'm 2 weeks behind in my training'. Make clear boundaries of what an emergency is, and isn't. Then start practicing with him. Tough love, sister.
If you find out he called you and says "emergency", leave immediately.
Tell him it's unacceptable behavior.
What kind of senior home does he live in? Does he enjoy any activities there?
Call the nearest elder agency, and see what other resources may be available to your brother.
If he lives alone, maybe a group home could be considered. Other people with supervision?
Just brainstorming here...
All the best to you!!
Would be interesting to know.