What is my obligation here?

[Anonymous]

Realize the short answer is "nothing," but I have a conscience and am therefore struggling with this. Would appreciate insight from people who've been there.

Cousin is mid-70s with a stage 4 brain tumor, hoarder who lives alone. VERY limited mobility, has caregivers come in daily for 5 hours/day. Thus far has slipped in the shower once (caregiver managed to catch her) and fallen once, resulting in a concussion and stitches. Relies on friends/neighbors for food, transport to medical appointments and assistance with her medical device. Refuses 24-hour care or assisted living.

I visit regularly but feel out of my depth--not entirely comfortable dealing with the medical device and definitely do not feel capable of preventing falls.

It's only going to get worse. I get that I have to respect her wishes, but does that mean I also have to take part in it? I'm trying to do right by her, but it is utterly draining and hard to watch.

[Anonymous]

Ooof that's hard. Are you the only nearby family? Is there anyone in her immediate family that has more pull?

Do you attend doctor's appointments or anything with her?

I'm just wondering if hospice is a viable option. At somepoint she will need 24 hour care.

Are you close to any friends/neighbors? could you enlist anyone to strongly suggest more care?

[Anonymous]

Are the caregivers people that were hired off the street or are they through a provider? If the latter, the provider should be on top of this. If you have real concerns you can call APS. But people are entitled to a lot of autonomy when it comes to deciding whether to remain at home or go into care.

With a stage 4 brain tumor, her remaining life expectancy might be pretty short and depending on the nature of the tumor, she could go downhill really quickly. Also if a fall lands her in the hospital, the hospital will have to ensure a safe discharge unless she signs out AMA.

[Anonymous]

How much can you do that isn't physically being there to literally catch a fall? Can you schedule the meals on wheels? Research state elder care programs that could handle medical appointments?

I totally get that it's hard to watch a train wreck in slow motion because of someone's choices - but maybe you can still offer some support without having to also be in the train.

[Anonymous]

OP here, appreciate the feedback.

Caregivers are through an agency, meals on wheels has been suggested and refused. I also fear neighbors/friends will eventually get fed up with being on call (sometimes in the middle of the night). She's been home solo for several months at this point.

She's mostly estranged from her only sibling, I think because she believes they're after her money. I have no idea how much of that there is, but it's certainly no huge fortune.

[Anonymous]

People have the right to take risks and prioritize what they want even if it comes at a high cost to their safety. You may benefit from thinking of it as you are respecting her choices. She isn't going to live long no matter where she lives. Clearly the comfort of home and the autonomy are more important to her than whatever benefits assisted living may bring, and that's okay.

You don't have to be on call and the friends and neighbors don't either. They can say no. Eventually she will be hospitalized and the hospital will discharge her to a facility because it will be so obvious that she can't live safely at home.

[Anonymous]

Anonymous wrote:People have the right to take risks and prioritize what they want even if it comes at a high cost to their safety. You may benefit from thinking of it as you are respecting her choices. She isn't going to live long no matter where she lives. Clearly the comfort of home and the autonomy are more important to her than whatever benefits assisted living may bring, and that's okay.

You don't have to be on call and the friends and neighbors don't either. They can say no. Eventually she will be hospitalized and the hospital will discharge her to a facility because it will be so obvious that she can't live safely at home.

Well said.

[Anonymous]

Who is coordinating her care?
It is so hard when a LO makes terrible decisions and you want to help but have limited power to do so. I'm sorry for your cousin and for you, OP.

[Anonymous]

Anonymous wrote:Who is coordinating her care?
It is so hard when a LO makes terrible decisions and you want to help but have limited power to do so. I'm sorry for your cousin and for you, OP.

She is coordinating her own care. Neglected to mention that she was released to assisted living after her most recent hospitalization, but checked herself out. Has also refused one of those fall buttons.

Intellectually, I get that she has the right to do this. And I can opt not to participate. But damn, that will leave me feeling like a sh*t human.

It’s hard to watch. People are so complicated.

[Anonymous]

Anonymous wrote:OP here, appreciate the feedback.

Caregivers are through an agency, meals on wheels has been suggested and refused. I also fear neighbors/friends will eventually get fed up with being on call (sometimes in the middle of the night). She's been home solo for several months at this point.

She's mostly estranged from her only sibling, I think because she believes they're after her money. I have no idea how much of that there is, but it's certainly no huge fortune.

Be kind and make some single serving meals and freeze or drop off weekly. Meals on Wheels is $$$ and not great food.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Who is coordinating her care?
It is so hard when a LO makes terrible decisions and you want to help but have limited power to do so. I'm sorry for your cousin and for you, OP.

She is coordinating her own care. Neglected to mention that she was released to assisted living after her most recent hospitalization, but checked herself out. Has also refused one of those fall buttons.

Intellectually, I get that she has the right to do this. And I can opt not to participate. But damn, that will leave me feeling like a sh*t human.

It’s hard to watch. People are so complicated.

You can participate in a way that is comfortable for you and accept the inherent awfulness of the situation. Remember that you are not responsible for what you cannot control. What do you think you could do that she would accept or want? Are you able to visit even though the house is gross? I suppose you could call APS, but given that she is dying, I would not intrude on her autonomy.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Who is coordinating her care?
It is so hard when a LO makes terrible decisions and you want to help but have limited power to do so. I'm sorry for your cousin and for you, OP.

She is coordinating her own care. Neglected to mention that she was released to assisted living after her most recent hospitalization, but checked herself out. Has also refused one of those fall buttons.

Intellectually, I get that she has the right to do this. And I can opt not to participate. But damn, that will leave me feeling like a sh*t human.

It’s hard to watch. People are so complicated.

Maybe she can’t afford the $15,000 a month for assisted living.

[Anonymous]

Anonymous wrote:Realize the short answer is "nothing," but I have a conscience and am therefore struggling with this. Would appreciate insight from people who've been there.

Cousin is mid-70s with a stage 4 brain tumor, hoarder who lives alone. VERY limited mobility, has caregivers come in daily for 5 hours/day. Thus far has slipped in the shower once (caregiver managed to catch her) and fallen once, resulting in a concussion and stitches. Relies on friends/neighbors for food, transport to medical appointments and assistance with her medical device. Refuses 24-hour care or assisted living.

I visit regularly but feel out of my depth--not entirely comfortable dealing with the medical device and definitely do not feel capable of preventing falls.

It's only going to get worse. I get that I have to respect her wishes, but does that mean I also have to take part in it? I'm trying to do right by her, but it is utterly draining and hard to watch.

You have to detach enough to let her make her own choices while cognitively capable, but do what you can handle in terms of visiting. You cannot give her any advice or suggestions unless she wants them. There is a lot of letting go. Just try to enjoy the moment with her and tune out all the medical stuff. Think about what she would enjoy most during a visit-looking at old photos and reminiscing, a favorite food, time spent outside, certain music. Let go of what you cannot control and do what you can to create moments of joy.

[Anonymous]

You can’t fix this. If she is a hoarder then keeping her hoard is the most important thing in the world to her. She would give up her life to keep it. She would sacrifice your life to keep it! It’s an obsessive disorder with a low recovery rate.

Your choices are either a. Let her continue her hoarding and die in it or b. Do regular well check and if the hoard breaks city codes call APS and Code Enforcement. They will either immediately remove her or if she appears capable give her a short timeline to remove things. She doesn’t need to know that you called.

[Anonymous]

Who has her medical power of attorney? Does she have equipment like shower chairs? If not, can you ask if you can assist with that? So sorry, this is a really awful situation for her and for you.