I am retired and living in California. I am trying to take care of my brother who is living in a memory care center. I need advice on how best to care for him.
On about 3/8/2022 a received a call from the hospital at 1 a.m. asking me if they could admit my brother. I am his emergency contact, but I did not understand why they were asking for my consent.
Later that morning I went to the hospital and learned that my brother was suffering from a heart with afib, a resting pulse of 120 and a pumping capacity of ef20. He was also suffering from some sort of severe form of dementia. He recognized me but did not recognize my wife or family. He would talk about our mom as if she were still living. He was also delusional.
After about 30 days in the hospital his pulse went down some and his memory had improved, but still he did not always realize that he was in the hospital or who some family members were. However, the hospital had done all they could at this point and it was decided that he should go to rehab to regain the ability to stand up and walk which he could not do at this point. While I was already making some decisions for him at the hospital it was at this point I really became his default decision maker.
Because of his dementia and because he was a fall risk it was decided that he would need 24/7 care in a lockdown facility. A facility was found and he was transferred there. Insurance paid for the rehab, which lasted about 30 days, at which point he was able to walk a few circles around a picnic table.
At the end of his rehab, although his ability to walk had improved, there was no way he was ready to walk up the unfriendly stairs to his apartment where he lived alone. But more than that, for the last week of his rehab the staff at the facility kept asking me what I was going to do with my brother when he left the facility. They told me he could not live alone.
At this time I should point out that I have a POA for my brothers finances but I don’t have a POA for health care. Yet I’m being asked to make these decisions.
My house is full with family including my 6 year old granddaughter. I talked my brother into going to a memory care facility for a while. Before being accepted at the memory care place he had to take the MMSE test. He scored a 19 out of 30 and was accepted.
My brother has an alcohol problem and evidence shows that he was drinking quite heavily prior to whatever happened to cause someone to call the ambulance (which we still don’t know) the night he went to the hospital. I was hopeful that after he was off alcohol for a while his dementia might improve. After about a month I asked his doctor if he would give my brother another evaluation.
The doctor gave my brother another MMSE test. He scored 16 out of 30. It was highlighted on the report that he cannot live alone. His drivers license was revoked.
And now for my real problem. My brother doesn’t like being where he is. He thinks most people would score the same as he did on the MMSE test. He doesn’t understand why he is being punished even more than someone who committed a crime.
He doesn’t realize that he is paying for his own care at this point. I am afraid of his response when I tell him. I’m afraid he will insist that I stop paying the bill. I’m afraid that if we get him a downstairs apartment where he lives by himself that someone might get hurt. I have no legal power over his health.
At the beginning of all this I called around about getting a conservatorship and was told it could cost as much as he has in the bank. I can’t afford to pay for the process nor do I really want to have a conservatorship.
My brother isn’t allowed to drive. Has the mental capacity of a child. Will certainly drink and make things even worse if left alone. Before the hospital event he accidentally started his mattress on fire. He noticed the smoke a poured water on it causing more smoke. He didn’t call the fire department. Some neighbor did.
Thanks for help.
Once on Medicaid, he gets healthcare coverage, vision, prescriptions and dental. Vision and Dental are done at the facility.
Once he is in a LTC facility all his needs will be supplied. He will have his laundry done, they also supply his toiletries. You will not really have to do anything at that point. His SS and any pension will go towards his care. No money, nothing for you to oversee. Medically, you will just be a contact making decisions based on what you are told. I would not OK any extreme measures because of his Dementia.
"DNR, living will, POD (payable on death) on all accounts" At this point you cannot change anything, even if ur POA. DNRs are done by the patient. As are living Wills. This is where a Medical POA/Advanced directive comes in. My Mom listed what she wanted and didn't want in her Advanced directive.
Now, you may be able to do a DNR as his representative but that is usually done when a person has an illness that is terminal and age has to do with it too. Really, a 50 yr old having a heart attack and CPR is done, is a lot different than a 80/90 yr old with extreme CHF getting CPR.
Do not change any of his bank accts at this point because he will be receiving Medicaid and they will be looking at these accts. Brother will only be allowed 2000k in the bank. Upon his death, that becomes part of his estate as does his PNA. You can check with Medicaid but I am sure that 2k can be used for things for him.
You as POA do not need to spend any of your own money.
His score on the cognitive test indicates progressive dementia which is already worsening. It won't get better because his brain is already damaged.....alcohol can cause Wenicke Korsakoff Syndrome or Encephalopathy and in SOME cases, thiamine can reverse that syndrome. But only if that is his dx. Alcohol induced dementia is not reversible, and it's not a punishment, just a consequence of his actions. You can't make him comprehend any of this, of course, because dementia is at play which prevents him from understanding reality.
You can read more about dementia by Googling "Understanding the Dementia Experience" by Jennifer Ghent Fuller, it's a 33pg booklet online as a download or a full book you buy from Amazon. It's very enlightening to help you understand the illness from your brothers perspective.
In any event, he can't live alone, so ask the social worker at his Memory Care for help with the Medicaid app and go from there. You can make him a ward of the state, too, if you don't want to manage his care moving forward. That ball is in your court. It's a real roller coaster ride for those of us who do sign up for the job, I'll warn you.
Best of luck.
I have had to make medical decisions for FRIENDS who have no family. Nobody batted an eye, which kind of concerned me, but at least somebody was stepping up to make the decisions.
Sadly, your brother's past alcoholism is very likely what caused him to show signs of dementia, and while it's good he can't obtain alcohol while in the rehab facility, I bet he goes back to drinking once he's 'free'.
I also imagine his liver is shot--and that the poisons from a dying liver will impede your thinking very noticeably. (My SIL is a GI doc, with a specialty in liver transplants. He has often stated that there is NO AMOUNT of alcohol that is 'safe' or 'ok'. And while the liver can and does self heal--it kind of sounds like your brother has already passed the point where he will regain any kind of decent health.
By no means should you bring him home. Your family situation is already 'full'.
would consider having him declared incapacitated. My mom was seen at her memory care by a nurse practitioner who took care of it.
start looking towards Medicaid. Make sure all your ducks are in a row. DNR, living will, POD (payable on death) on all accounts. If your brother’s memory care doesn’t take Medicaid you will want to start looking… If there is some money left you may find a memory care that takes self pay for a period and allows transition to Medicaid. call your county office for aged and disabilities … they can give you guidance and my office would make the application to Medicaid when it was time.
Google care advisors, find someone local who will guide you and meet you for tours at facilities. They are similar to a realtor, but get paid by facility. They know what’s available, cost , your needs, etc.. invaluable, I placed 3 times with one. Check for care patrol , it’s a franchise , maybe one in your area??
I would not bring him to your home. It does not get any better.. it’s hard to accept, harder for him.. but don’t let it make changes to your home that will inevitably not work in the long run.
I wish you luck…
If you don't want the responsibility, tell them that they need to get emergency guardianship and deal with him.
Just because they are making you responsible doesn't mean you need to take responsibility. Don't let them tell you otherwise.
I wouldn't worry about telling him he's paying for the memory care. It's likely where he'll be for the duration now, and there's no good reason to argue with a dementia patient. YOU are the one making the decisions now, regardless of what he says, and you need to make decisions for his best interests. You appear to be doing that. I'd worry more about a conservatorship if there were warring factions fighting over his money and his care, but it doesn't appear you have that issue.