Navigating Family Dynamics: Post removed

lostinvoid

Post removed

M1

Welcome to the forum. Sounds quite difficult. Who holds power of attorney for him? Really matters here. If your SIL holds it, there may not be much you can do. If it hasn't been determined and you and/or your parents want to have it and not her, you will almost certainly need legal advice. Someone needs to keep in mind the interests of the minor child also, if not both.

Quilting brings calm

selling the house and liquidating might be to be able to afford assisted living. Or because she knows she can’t maintain the house. Or to pay for the kids college.

It sounds to me she has reached her limitations as a caregiver. There is no shame in that, nor should anyone make her feel guilty about that. Many of us are not cut out to be caregivers. It’s also possible she feels the need to return to work to secure her own future. With him refusing to stay overnight anywhere, it sounds like she is not getting any respite. As you’ve said, you can’t force him to stay.

You could apply for guardianship of him- which does not mean that you would need to take him into your home. He could still go into assisted living. You would need to report to the courts annually about his care and his finances.

Anonymousjpl123

I think it is fair to have your brother and your niece/nephews interested at heart. If POA hasn’t been determined, would it be possible to have an honest conversation with her? To find out what she wants? It does indeed sound like a very tricky situation and I would say it’s worth it to at least try to have a conversation. Maybe with your parents. These things are never going to be smooth or easy. But I am a believer in trying to communicate first. If she refuses, I would talk to a family law attorney. I’m so sorry you are going through this.

M1

Sounds like all of you need to get with an attorney asap. It's not automatic. If he's too far gone to assign poa, a guardian may need to be appointed. Perhaps that actually gives you all an opportunity to discuss some of these issues with the attorney as an impartial mediator. Someone needs medical and financial power of attorney, and needs to address a will, living will, and how to protect their assets and qualify him for Medicaid if needed for long-term care down the road. Look for certified elder law attorneys at nelf.org.

Phoenix1966

Echoing @M1 , meet with an attorney ASAP. Your SIL selling the marital home could have ramifications if your DB needs to qualify for Medicaid. Medicaid(and their rules do vary by state) usually has a five year look back on any transferring of assets/selling property and that potential home sale could adversely affect your brother from qualifying.

H1235

Your sil has a lot on her hands. Caring for your brother and taking care of a family. It sounds like she is not always handling things the best, but then she is in a very difficult situation. Some people are not cut out for home healthcare(no judgement at all). Your parents are too old to care for your brother full time and you have your hands full. Placement in AL makes sense to me. Maybe she feels guilt and shame over potential placement and fears how you and your parents might react. I can’t see fighting your sil for POA or guardianship if you all want the same thing. I think a good talk with sil is in order. Tell her you wish you could do more, sympathize with her, maybe take on some of the blame for lack of communication. Bite you tongue when necessary. The house being sold may not be the best decision and could leave your sil and kid in a bad situation. Tell her you are concerned for her and the kids. Don’t hit her with too much in the first conversation. Just get the conversation started. She might even be relieved if you want to be DPOA. Family problems can be so difficult. I hope all goes well.

harshedbuzz

@lostinvoid

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place. Yours is a uniquely tragic and challenging situation.

Given the SSDI (yay! you for making it happen), that your parents are alive and living independently and that the grandchildren here are quite young, I am guessing your DB has an early onset form of dementia. This can be especially difficult to navigate as it can present with unique challenges— EO often progresses at a more rapid rate than in older folks and younger men can be extra challenging given their physical strength and sex drive making them hard to manage at home or have accepted into a care community. Even if SIL is complaining to your parents, I'm guessing none of you have any real idea of what it is to be in her shoes.

Someone will need to have either a DPOA or guardianship for your brother. If SIL intended to remain married to him, it should be her. She needs to be the decision maker here; I would encourage her to see a CELA to obtain the POA and to do some Medicaid planning yesterday. Someone else being POA would impact her well-being and security going forward if they're not making decisions that factor in her quality of life. If she's selling the house to fund AL, there may be a way to put it into a trust allowing him to qualify for Medicaid funding in AL. "Gifted assets" are just that. She's free to earmark that money for his care, college funds or daily living expenses. Of course, she may be selling because she is not able to continue the routine maintenance and lawn care required on top of all the other household tasks and parenting teenagers.

If she's not interested in remaining married, then you might be the next logical POA/guardian. Unfortunately, you aren't exactly an ideal candidate given the responsibilities you have. If your parents are healthy and capable, they might be an option but would need a strong successor agent assuming they are interested. I'm sorry she cut your family off, but it sounds like she is really struggling.

TBH, your post comes off with little sympathy for your SIL and her children. Most PWD have obvious changes in mood (apathy and a loss of empathy are typical even before memory loss is evident) and personality for quite some time before they're diagnosed. My mom was on the verge of divorcing him when he was diagnosed. My own dad was so unkind to my then 10-year-old son, I didn't bring him with me when I visited my parents. It's possible he has been a loving and reliable father for quite some time. Of course, if their mom is unable to cope with caregiving (and not all who need care are pleasant— many showtime around others while their caregiver is treated unkindly), they may be angry for what he's putting her through not fully understanding the dynamics here.

TBH, it sounds like an AL/MCF could be a reasonable goal here. It would allow SIL to focus on being a wife and launching her children while your brother is safe and cared for by trained professionals as he progresses.

HB

ButterflyWings

@lostinvoid *edited to tag the original poster (OP)

There is much good advice shared here, and compassion for the OP which is good. I also am glad to see the compassion for this spouse caregiver. I agree with Chug and HB that your SIL is the one on the hot seat here and could probably tell you stories you would not believe.

For example, I read this and see that he is a wanderer as was my DH. Scary for him but also for the LO trying to redirect or head him off. That went along with hallucinations, delusions, weaponing up and more. I would not send a 17 year old out to do that, or even make a19 year old responsible for trying to manage their PWD parent. She is likely trying to protect them. It is all terrifying in the moment dealing with the behaviors, and heart-wrenching — and she is losing her spouse at the same time. SIL does need some grace here. I can understand you wanting to protect your parents but she could have just left him to crash and burn for himself. If he is a veteran she is eligible for caregiving assistance at home. And believe me she needs help.

It seems from some of the language in your post that there may have been tension even before the 5 months since your DB has been home from hospital. For example, if she is raising teenagers, she has been working - just not in a job outside the home. And without income she must be feeling extremely stressed and vulnerable even with his SSDI now. If your parents have been gifting assets that in-laws feel was for him only, (not his wife nor children) that is probably not realistic, but is a sign that how you are thinking about SIL is not so friendly. It definitely is not in her best interest and she may be acting that out when her back is against the wall (like now). I did not see if there is a diagnosis, but some of the dementias come with violence and more. As well as the EO issues that HB mentioned.

I do hope you can put yourself in your SIL's shoes at least. I can tell you my in-laws took an adversarial stance and the ballistic approach with court action to try and displace me. They lost and I will never, ever forgive them. Never. They get to see DH but that's it. That's all. They showed me who they were and I clearly would be left by the side of the road for dead if they could — not so they could take care of DH, but for imagined assets that they wanted to take over in a pre-emptive strike. If you love your DB and care anything about his children please don't be that in-law. I'm sorry for what is happening to your brother and entire family.

lostinvoid

Our family dynamics prior to my brother’s illness is a bit complicated which is why you’ve picked up on the little sympathy in my post. She would probably blacklist me if she knew I reached out to this community for advice.

I thought the same about possible behavior changes in my brother due his dementia. I have asked my SIL and nephews if he has a temper now as he was always a very laid back person. They said he doesn’t have a temper but that he just can’t be left alone and they can’t watch him 24/7. I agree with them and have suggested to drop him off at my parents a few times a week during the day but SIL didn’t take up on that offer. The only help she wants is for my parents look after him overnight. I have a feeling she is just done looking after him.

towhee

A caregiver for a person with dementia has to learn a lot in a short period of time and they have to keep learning for the PWDs needs and abilities change, sometimes with no warning. And it simply does not stop. For years. I don't know anyone who has not been in despair once in a while and reacted illogically. It is not just the care needs, it is the legal and financial maze of getting that care. You need to navigate doctors and home health and care facilities and financial advisors and lawyers to get medicaid and POA and HPOA, living will and DNR forms. Before people are pitchforked into this situation most have absolutely no clue.

Congratulations on getting disability for your brother. That you had to be the one to do that gives me the impression that your sister-in-law might not have the knowledge she needs. I agree with the other posters that she might be making a mistake to sell the house (although information gained from the grapevine is notoriously unreliable). Accepting regular contributions from your parents might also be problematic, for her as well as for them. She needs good legal advice, preferably from a certified elder lawyer (nelf.org), one who can give her the pros and cons of different approaches, and not just push trusts and annuities. It would not hurt for you and your parents to consult a lawyer before talking to her. There are also sometimes social workers associated with the Alzheimers Assoc. or your Area Agency on Aging who can facilitate family conversations, or a mutual friend (that is iffy though).

Your brother will be eligible for Medicare about 2 years after the date given on his application that he was unable to work. However, Medicare does not cover Assisted living or nursing home care. That is Medicaid, for which you have to meet income and asset limits, and need a certain level of care. If your state even covers AL. A semi-private room in the very cheapest assisted living (old facility, rural area, non profit) runs about 4 thousand a month (base care) in the state I live. A private room in a newer urban facility would be closer to 8 thousand. An AL apartment or MC facility would cost even more.

From what you have said, your brother has vascular dementia. This often, but not always, has long periods of time when there are very few changes, so he might need care for a very long time. Please learn as much about dementia as you have time for, it will be helpful, and thank you so much for stepping up.

Edited for clarity on facility pricing. Thanks HB.

harshedbuzz

@lostinvoid

Thanks for the clarification around the family dynamics. Wow. I was wondering if there was more to the story than a loving sister who feels her brother could have done better. It's odd that she didn't recognize your pregnancies, outright nuts that she doesn't know their names. Is she insecure or jealous? (My own sister/her kids and my BIL's then current wives were not happy when DH and had our son 10 years after his youngest cousin. My sister worried her kids would be sidelined and get less attention/stuff from my parents, they didn't, and SILs worried he'd be a boy as MIL vocally favored them, she absolutely did which was a shame)

The offer of your parents to look after your brother during the day to provide free respite was a good one, but sometimes it's better to ask what the person you are helping wants/needs and negotiate from there. Perhaps your brother, like a lot of PWD, has dysregulated or fractured sleep that is upsetting the entire household leaving her to struggle through his care during the day and his kids to stay awake at school. Maybe he sundowns and his needs interfere with homework or even her ability to attend her kids' sports or activities or just focus on helping them plan for their futures. Maybe her kids are struggling with his progression, and she needs to keep a closer eye on them. The saying "little kids, little problems; bigger kids, bigger problems" could be in play here. I know my niece's teenaged years were derailed by their mom's extended illness and death which led them both to act out behaviorally and academically.

I think it's a good idea to have that talk. I might suggest having a visit with each one alone. I would encourage you to listen mostly and ask what SIL needs. Try to avoid being the Monday-morning quarterback offering solutions— I had an uncle who made a 45-minute drive-by at dad's best time of day every 6-8 weeks who liked to play devils' advocate as a way to "help". It was just irksome.

I would be concerned about your parents as well. I don't know their wallets, but substantial gifting could create a mess if one of them were to need care down the road. They should certainly see a CELA themselves to make sure they aren't undermining their own security in helping your brother.

HB

ETA: I don't know where towhee lives, but dad's MCF in suburban Philadelphia was $7200/month 6 years ago. Another member here had her husband in a different location in the state at the same chain and paid about $1500 less. At the same time, my aunt's was over $8K in suburban Boston.

HB

jfkoc

You have lots of moving parts to sort out.

I think you need to have some legal matters clarified. For openers, who owns the house? Do you want to be the agent in a DPOA? Do you need Trust drawn up?

I agree with the above…best to start fresh with how can we help. I would not have this conversation until legal matters are understood and in place.