Hello everyone:
I am new here. I have read various articles, posts and comments. They have been helpful.
My situation:
I am 61. No spouse/children. I have been a caregiver twice in my life. My mother for 13 years and middle brother for a year or two. Both are deceased.
My remaining relative is my older brother, 73. He was living in his house. His wife died 2 years ago and his son in 2020.
He was not taking care of himself. The house was in decline (no hot water, refrigerator and stove not working, not able to do maintenance, mold and electrical issues, pest issues and a dog (my nephew's) he did not want.
Due to covid, I did not visit very much. We spoke several times a week. I asked him if he needed help. Answer, no, I am fine. His decline became more noticeable late summer.
Ordering out all the time, needing bug spray, etc.
I did not realize how bad it was until he was sent to the hospital as he could not breathe.
He had an issue with a weak knee/leg and unable to put weight on it. He was struggling to care for self. Not allowing groceries to be delivered, etc..
Once sent to hospital, I was able to get into the house.
It is not fit for him to return to unless extensive work is done. Just to clean, sanitize and gut house is $3,400.00.
Needs a plumber, electrician, stove/refrigerator before he can return. House is locked up and I cleaned what I could. The dog was given to a no kill shelter for rehoming.
The house is too much for me. Only hoarding professionals can clean that house. He has no savings for this, just SS.
Currently he is in short term rehab for the past 20 days.
Rehab wants to discharge as it does not have Medicaid beds.
He needs more time in rehab than he has been given. He is just being able to bear weight on leg for a brief time, then it gives out on him. He cannot live at his home at this time.
Maybe in a few months but not now. The house is in his deceased wife's name. There is still a large mortgage. Only 5 years equity. He was paying his bills and is capable of understanding and making decisions.
His options as I see them:
1. Go to back home-not good (needs work)
2. Live w/me TEMPORARILY while he gets in home rehab to strengthen the knee. Then search for senior living options (waiting lists for senior housing)
3. Go to a NH that takes Medicaid for more rehab until a senior living arrangement can be made. He is under the limit.
4. Pay co-pay at rehab for 21-100 days under Medicare (this may not be affordable)
Frankly, I do not want to be his caregiver in my home. He was not there for Mom, brother nor me. I have been working on my resentment. He calls when he wants something. I help some but set boundaries. He has lost his support system (sis in law did everything) so I do not want to turn my back on him. I must also take care of self. I have issues too.
Our personalities do not mesh. I wanted to do some work on my house now that I am retired. He comes here, it will not get done. This will be my 3rd go around in caregiving. This would be more difficult because he would be resistant and dismissive.
He could get in here and refuse to move to a place. He can be argumentative. So can I. We do better at a distance.
I have some emergency savings that I was going to use
for work in my house. I also have retirement funds that I had not planned to touch for a while. I do not want to use for this. Even if house is repaired, if he does not care, he will be right where he started and money wasted. I do not have money to waste.
I asked him what does he want to do? He says he wants to be independent. He will be speaking to SW on these issues tomorrow. I have not spoken to SW nor has he asked her to contact me as he makes his decisions.
Any thoughts?
Brother works out his future needs with his Social Worker.
If he is deemed capable, he can choose from the realistic choices available to him. Usually the least restrictive option is trialled first : home if agreeable to home help services.
If he later dismisses the home services, he will bounce back into crises mode. Meet the SW team again for another round.
If his capability is questionable, SW may request Psych input & neuro testing. Can lead to emergency guardianship (but that bar is pretty low it seems).
I can feel you have his best interests at heart. But you don't need to fix this for him. In fact, he has stated he wants to be independent - so he will appreciate being able to do it his way.
It's OK to just be his Sister. Agree that life sucks sometimes & visit him wherever he lands.
Do not support him in any way. If he can't afford the house then he needs to sell it. Let the SW figure it out. Thats what she is trained for. Just keep saying No, No, No. You have a right to your life. Your worked and cared for people. You have done your share. He won't change, just bring you down.
Don’t invite him to enter your house “temporarily” (it is NEVER temporarily).
Either he IS capable of managing independently or he is not. In NEITHER SITUATION is he in any way your responsibility.
Let him make his own decisions and let his decisions be entirely his.
You will be making the harder decision by establishing in your own thinking that expecting him to do his own self care is NOT the same as you turning your back on him.
Do not step in to bring him home or support him financially. The SW will find solutions ONLY of you don't swoop in to BE the solution.
On your shoes, I would call the SW to tell him/her that you are NOT willing to become his support system, his backup plan or his guarantor. He may be telling SW that you will take him in. Make sure SHE knows that you will not.
Option 3 only one I can see that may ever work somewhat.
He is not judged incompetent it is on him to go home or not. Without guardianship you cannot interfere. And guardianship will not be given. A lawyer will be assigned and he will win. We are allowed to live in any manner we choose basically.
I would report him, if he goes home, to APS and have them test and condemn the house (hopefully) for mold.
Do not put your own money into this bottomless pit. What will you do when YOU are in need in your elder years? Will he be loaning you money? I think not.
Contact the social worker where he is. Ask that his home be examined. Tell her coming to live with you not an option.
Basically I am telling you that taking on the care of the gentleman in any way is endless, hopeless, bottomless and will BREAK YOU financially and emotionally. Hoarders are not cured for the most part. Nothing will change. And you cannot play Ms. Fixit to this one. This cannot be fixed.
I am sorry, but now you know what you suspected perhaps is true and a good deal more. Let the state deal with this.
I am very sorry for your brother's situation, but the state has the state's resources to call on in helping him back to his feet, whereas you have only you. Be reasonable.
Please take the advice of these wise people. They have the experience to give them the credibility to be able to trust them.
Please keep your boundaries. Your own future depends on it.
Best wishes.
#3 - Go to a NH where he can continue to get rehab that takes Medicaid until he is strong enough for assisted living.
In the meantime, please contact authorities since his home may need to be condemned or deemed uninhabitable. DO NOT use your finances to fix his home - ever.
Please contact SW in the morning and let them know the truth about his living situation. Many times people will describe their living situation as much better than it is. Please let SW know the true situation about his home - that it is uninhabitable at this point. Also let SW know that you will not take him home with you, even temporarily, SW will know that he needs placement into another facility and can work on that option.
Praying that you can get him the help he needs and that you can also preserve your finances for retirement or future needs.
It was the strong thoughts I needed to hear and receive.
Update:
My brother has appealed the Medicare denial for additional rehab days. It's pending. He has paid for a week. He says he does not want to return back to his house...too many memories of loss.
He has a list of NH that accept Medicaid and have good ratings.
Before he went to the hospital, I contacted Area agency on Aging
(my city's senior services) to ask for meals on wheels and help in the house. Once I saw the conditions he was living in, I called for Adult Protective services and explained his situation. Since he is in a rehab, the case was closed out.
Since he has been in rehab, he is getting supportive services:
physical therapy, meds on a schedule, 3 meals a day, toileting, people to talk to.
He had the wherewithal to call 911 to take him to the hospital
and get out of that house.
He said when he trying to decide whether or not to try for the
appeal, "This for my health and life. I am going for it."
As for me, I have begun the process of getting my downstairs
ready for the work that needs to be done.
My brother is now in a nursing home about 20 minutes(up the road) away.
He was denied the appeals for Medicare rehab beyond 20 days.
His NH accepts Medicaid. He privately paid for rehab for 13 days while awaiting his 2nd decision.
He has been in his facility for 2 months. In the last 3 months, he has been covid tested many times, vaccinated, gained weight, his diabetes and high blood pressure are under control. He has a cna who has taken him under her wing. He gets physical therapy(which he enjoys) although the sessions have been reduced due to the limitations of Medicaid. He "works out" in his room. Leg stretches, arm curls...passes the time, I think.
He still cannot walk but so far with the walker.
He has a tv and cd/radio player with all his favorite cd's. Brother's not a reader. He never wanted a cell phone but now is getting used to it. His floor does not have phones in their rooms(weird).
He likes the food for the most part and since he's higher functioning, discusses what he like or dislikes with the dietitian. He is able to make his feelings known to staff and in care meetings.
His NH has reopened to in person visits this week, the dining room, hair salon and outdoor patio are open. In room visits...not
yet. I am vaccinated and he is too. Visits are limited to 30 minutes.
He is still by himself in his room...as things change with the pandemic that will probably change.
Only been 60 days, the staff thinks he has adjusted so far....let's
see at the 90 day, 6 months or a year from now. Take it a day at time.
Will he be able to live on his own...in an apartment, who knows?
Question is, does he want the responsibility?
Meanwhile, his house is being taken over by a niece. She's had it cleaned out and is willing to take over the mortgage payments(brother has paid the arrears) until she is able to assume the mortgage. She is unhappy with the living situation she is currently in. She's raising 2 grandchildren. She wants to keep it in the family.
He now longer wants to live there ...too many memories of loss.
We speak several times a week and I visit when I can. I get him what he needs and asks for... which he pays for. He says he is being cared for. I've said to him to try to stay as independent as possible and speak up. The SW at the NH knows that I am not his POA but I am the person of contact as well has the niece. I am notified of any changes and am present at care conferences.
At this point, I am his sister and advocate.
For me, I am working on my house(projects that need attention).
Getting out and about more and longer. Safely.
Yesterday, a vaccinated friend of over 40 years and I had lunch at my house unmasked on my patio until it rained, then inside. We celebrated our birthdays (mine April, hers May)...both 62.
We ate, laughed and ate some more. Felt good for both of us.
Memorial day, I'll see my brother with some lunch and cake.
Day at a time...
That has to be one of the THE best updates I have read. No magic wand, everyone 21 again but real outcomes from real choices.
I love how you say you are his sister & advocate!!
I love that your brother has adapted so far, thinking positive & is making progress with his health & fitness goals.
It also shows that staying in your own home, alone, is not always the answer for everybody. Some thrive in a new setting. With more social connections. For those able to consider CHANGE, to either be brave enough to go looking for change, or brave enough to seize a new direction when offered (even if pushed there by crises) to me, it still shows flexibility & bravery.
I wish you well, ML. Your good clear sense will help you, your brother & many others too.
Have you spoken to Medicaid concerning brother's house? Even though an exempt asset, it cannot be turned over to someone else. If not sold, when he passes, it then becomes an asset that Medicaid can recoup some of the money they paid out for his care.
The niece may have to buy the house at Market Value not just what is owed on it. Then the proceeds go into an account for brother. Medicaid stops, he spends down, then reapplies for Medicaid.
The NH needed proof of her death for Medicaid purposes
to show that he has no interest in the house. My brother has been in touch with the mortgage company as well as the niece.
That situation is between my brother, the mortgage company and the niece.
Will see what happens with all this.
My brother has been in the home for 7 months. He is still alone in his room. No doubling any longer, at this point. Since he has been there, he has gotten his vaccinations and booster. Is checked regularly for his diabetes and given his medications. He has seen the podiatrist and is on the list to see the eye doctor and dentist when they visit. He has had some falls trying to transfer from his bed to the commode or wheelchair. They resulted from him trying to remain independent.
The nurse called to inform me and I talk to him to make sure that the story aligns. So far, it has.
The only thing he hurt was his pride.
He gets physical therapy as his insurance will pay. Only not every day. His insurance only pays for so many visits. When there's a fall, then he is put back on the schedule for therapy working on that weakness which caused him to fall.
He asked for weights to strengthen his arms, hand grips and a peddler to strengthen his legs. He uses these in his room. He enjoys physical therapy as it tires him out and he talks to staff. He still has weakness in one leg.
He has had 4 care conferences that I have attended (on the phone). He does not have them every month.
Says there have been times that staffing is low. He is more independent and I ask him if low staffing affects him. He says sometimes but the staff does help him and responds. He tries to do for himself as much as possible. He says for the most part the staff treats the residents well.
He does have social interaction. He loves his sports and sometimes staff peeps in to watch the game. Not so much with residents. He's tried but some are friendly some not. The dining room is open and we (the staff and I ) have suggested going there but he says soon as he gets his teeth...
There has only been one event(father's day social). The home is still not allowing walk in visits and events. Still 1 hr visits and you schedule appointments.
I visit him and he looks clean and cared for. The one CNA he has connected with has been moved to another floor because of an issue with a resident. I met her and she seems ok. She still looks in on him. She let me know what he needs and my brother does as well. No missing items.
The food for him is 50-50. Breakfast is good, lunch, meh and dinner real good.
I bring him things he does not get...snacks, tastes he craves, fruit, diabetic snacks. He has a lidded snack box. He says he gets plenty of water. He is able to talk to the dietician about his likes/dislikes and she listens and acts.
He is content to watch his shows and listen to his favorite music (cd player and cds) This what he would be doing when he was home. This is who my brother is.
Content at this point. He feels that he is going to be there for a while(his words).
He will talk about his wife and son(both deceased) and we talk during the week.
I feel that at least he is not in his house struggling to care for himself surrounded by memories of people who are not there. Unsafe and vulnerable in his neighborhood.
I am not struggling to take care of him and myself. I am able to be his advocate
Taking it a day at a time.
The niece cleaned up and moved into the house and is paying the mortgage, using the utilities but not paying the usage. The utility moratorium has stopped on shut offs. I tried calling her to let her know, no response. I sent the shut off notices to her at my brother's address and still no response. My brother knows and said he would contact her. This is between them and I am not getting involved. Boundaries!
I am now trying to get him to apply for funeral insurance. I am not going in my pocket for his funeral. Been there, done that for 3 relatives.
Meanwhile, after a long summer of inaction, I am now getting work done on my house (electrical, carpet removed and floors finished and painting). Gotten my booster.
Sorry for the long post, a lot to say. I read posts and answers from time but not every day.