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New to all of this as a caregiver

virtualjupiter
virtualjupiter Member Posts: 3
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My brother Jim(not his real name) was recently diagnosed with Alzheimer's. They said he's at the beginning of it's advanced stage. Our other brother, Max, has been living with him and taking care of him, but he's sick too and his illness will be fatal within the year. I'm stepping up to help Jim after Max passes, likely even before that, so I'm getting ready for this and learning as much as I can.

The brothers prefer each other over me because they let each other get away with unhealthy behaviors. I had begged them to get Jim tested over two years ago, but they refused. I told them that there are medications to help, but that they help best when taken early, but neither would listen.

Jim has been repeatedly saying that if anyone tries to remove him from his apartment for any reason at all, he'll end his own life before going into a nursing home. I am extremely concerned about this because I know he'll do it. Max is planning to move into an apartment three doors down from Jim because he can't get any rest, but he still wants to help Jim for as long as he can. I think this is an excellent idea, I feel that Jim is too dependent upon Max, and Max just can't handle it anymore. When Max passes this will not only devistate Jim when Max passes, it will also destroy his life and leave him with no support system. Jim needs to learn that he's gonna be ok after Max passes, if he had some home help and could get used to that, it would make a big difference when Max goes.

I can only do so much, I can't live with him, and I can't do all the physical things he needs around the house. But I can and will make sure he gets the care he needs from other sources. I feel that Jim needs to be in a memory facility right now, I think that after Max passes, I'm going to want to get him into one as soon as possible. But I also feel like I need to do this in a sneaky way, regretfully, because if he realizes I'm trying to move him out of his apartment, he'll hurt himself.

Right now they have a bed bug infestation that they refuse to manage with professional help. Jim is a hoarder, it will be impossible to treat his unit without cleaning it out, and he absolutely refuses to throw anything away. Max has asked me not to tell anyone about this because Jim will become crazy impossible for him to manage through a process like that, it will kill Max. Jim spends his whole day messing around with all of his decor, it's all he has anymore in his life. He's refusing to bathe, and is becoming incontinent, and right now I'm powerless to do much besides try to be supportive. Max has a disorder of his blood (polythemia vera), and 2 other diagnosises as well, his doctors expect him to have a heart attack any day now, and there's no treatments to fix it. I personally do not want him to die of a heart attack because of these bed bugs, so I'm thinking to wait until he passes, and then figure out something with his doctor to get him out of there and into a facility, where there are no bugs like that and they'll make him bathe and won't let him screw around with his meds drinking beer all day long.

Gosh, just typing this, I can see how crazy this story is. And I hate what they're going through. If Max wasn't dying, I'd act on this stuff right now. But I can't live with the idea that it could be the final straw that stresses Max out enough to kill him. I can't do that to him, no matter that I definitely know how bad this is. They're functioning decently together right now, they like their lives and refuse to admit the bed bugs are even a problem to them. When Max moves it will remove him from that issue, he already said he would buy all new clothes and not take anything from that apartment into the new one. If he survives long enough for that move to happen, it'll ease the situation on him enough to approach the issue in Jim's unit and not have it kill Max with stress.

It's a really tough situation, I feel that it won't be resolved until I can get Jim into full-time care. I feel disturbed all the time by it.

Comments

  • Robert1320
    Robert1320 Member Posts: 7
    First Comment
    Member

    Siblings.

    I understand.

    I've been living with and caring for my older sister for over a year, but am relatively new to this very helpful group.

    What I've learned is that no matter what, she will insist on making her own decisions. Making direct suggestions triggers an anger response which is not good for her or me. So, I remind myself every day to not disagree and keep my mouth shut. (This is likely to change when her condition worsens and legal intervention becomes necessary.) I do enthusiastically support her decisions that are good for her.

  • H1235
    H1235 Member Posts: 1,239
    1000 Comments 250 Care Reactions 250 Insightfuls Reactions 250 Likes
    Member

    Welcome. I can understand hoarding. I am dealing with it with my mom. I assume you are a secondary on Jim’s DPOA then? If not you might run into trouble. It’s concerning that if Max moves out Jim will be alone ( even if his brother is very close). Will he try to use the stove and burn the building down, wonder off to the store and get lost? Memory care is very expensive and not always covered by Medicaid. You may want to look into what is covered in your state. Often a nursing home is the only option if on Medicaid. Is he on Medicaid already? Some facilities can have a waiting list. This might be something to look into now. There will be a lot to do once Max has passed and you don’t want to wait months for an opening. I think you may have trouble getting aids to come in and help given the conditions you are describing in the apartment. My moms house was in very bad shape. There is no way I could go in and clean it out while she still lived there. She didn’t want me to touch anything! My brother insisted she be told when I was at her house and she would sometimes go with me( she thought she was capable of cleaning it out herself). It was a disaster. She got mad about everything I did and even pulled things out of the trash. It caused her so much stress and anxiety. Eventually I insisted she not be taken to the house. Even after almost 3 years she still misses her stuff. She will take any free items offered at the nursing home. She is trying to build up more piles of stuff. Have you considered adult protective services. Its my impression things have to be quite bad before they will step in and if Jim is told they will force him to move then obviously that wouldn’t be good. You tube offers some great videos that may be helpful for learning. Teepa Snow and Tam Cummings are really good. You might also look into the term therapeutic fib. It can be very helpful and decrease the stress on your loved one. Hoarding is so difficult. I’m going to attach a few renewal resources for you. Good luck! You have a lot of work and difficult decisions ahead of you.


    Staging tool

    Article about dementia

    Medicaid information by state

    https://www.medicaidplanningassistance.org/state-specific-medicaid-eligibility/

  • harshedbuzz
    harshedbuzz Member Posts: 5,800
    Eighth Anniversary 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    @virtualjupiter

    Hi and welcome. I am sorry for your reason to be here but happy you found this place.

    Yours is an especially tricky situation that doesn't come up often. I have some thoughts, which I will share, but it might be more prudent to reach out via the 800 number (800-272-3900) and ask to speak to a trained care consultant for ideas.

    Some random thoughts—

    You have 2 brothers who have terminal conditions. It sounds to my ear that Jim might be considered to be in late-stage dementia based on your descriptions of his symptoms and behaviors. This is probably more precarious a situation than you can appreciate.

    It sounds like Max needs to focus on his own care right now away from the stress of a PWD who requires significant hands-on caregiving and supervision. It's time for someone else to take over now while you can make thoughtful decisions rather than be forced to accept whatever is available when Jim can't continue because of illness or death.

    If you don't have a DPOA to act for Jim, you'll likely need to get guardianship. Given Max's limited life expectancy and Jim's symptoms, you would likely prevail which would allow you to place him in the facility of your choosing. Yes, he'll be unhappy, but at a certain point safety trumps happiness.

    I would not signal the plan to move him by discussing it ahead of time or engaging him in touring. Just move him and deal with his apartment and hoarder situation once he's safe. When I moved my very uncooperative dad, I created a fiblet about him going to "rehab" until his doctor said he was stronger.

    My dad expressed a plan to kill himself if place "in a home", too, but to be honest by the time residential care was needed, he wouldn't have had the wherewithal in terms of memory or executive function to plan and follow through with suicide. If he's got volatile behaviors, he may need psychoactive meds from a geri psych either inpatient or outpatient to be accepted into a facility.

    Unless Jim has a LTC policy or lots of assets, he'll need Medicaid to fund his care at some point which will limit your options greatly. You may even need a period of moving up a waitlist for a Medicaid bed depending on where you live which is why acting now is critical.

    Their current living situation with an insect infestation and hoarding is a problem. It's hard enough to get caregivers in when you have a pleasant PWD living in a lovely home. It's also possible that these conditions, if reported, could lead to a report to APS and a situation where Max's care of Jim is deemed neglect with the result that Jim is assigned a court appointed guardian to oversee his care instead of family.

    I am so sorry you are facing this.

    HB

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more