Hello again. I am here to vent and hope to find some direction/advice...
I know this sounds horrible, but I am leaning into making the decision of not putting a lot more time into helping my husband's older family members anymore. He is close with them (they have no other family members who can/will care for them) and had been struggling to help them on his own at first, but they do not communicate with him well—I think because the wife thinks men should not caregive and perhaps they push one another's buttons. We live a day's drive away and have several young children we are raising so this is...a lot.
After seeing everyone suffer for over a year arguing and ignoring each other as our older members continued to decline, they asked me to step in. The wife was opening up to me. This was the only way my husband would know how they were doing. So I agreed to help. I researched the local resources, got everyone a bit of information (articles, blogs, etc...), and talked/listened to the wife a bunch. They all asked me to do more, because they are...paralyzed dealing with this on their own. I love them so I was happy to oblige at first. We visited them and took them to their Department of Aging to find more help. My husband said they really appreciated it and hope we come up again, but they haven't really done much on their own after we left (that was about 3 months ago). It's like the wife just wants to sit and wait to be rescued.
Aside from loving my husband, I actually care about these folks dearly and I want to do my best to help, but I'm fried. His older family members haven't really been proactive about taking care of their health to begin with. That is totally human for a lot of people (it's normal to hide from scary stuff versus facing it), but helping them feels like dragging an anchor right now. They also have been super unkind and rude to everyone else in his family so they drove away local people who could have been a network/community for them/us.
Lately, they have been making super irresponsible choices. They have been putting themselves and older family members in direct risk of catching COVID19—even though we both asked them several times to be careful (and explained how/why). This has been the straw that broke the camel's back for me. I know I need to be there for my husband and our family, but I am so frustrated.
I will be heartbroken when an emergency happens, and I will still help, but I want to set boundaries ASAP. Our part of the family and my own health should not be sacrificed, because these folks choose to be self-destructive, selfish, and toxic.
The wife is caring for her husband who is a lot bigger, and he has developed dementia for well over a decade. They didn't seek help for it until a couple of years ago when we pressured them to look into it and talked to their doctor (husband showtimes).
Every time we see them, the wife is more off...both physically and mentally. If they don't get sick this year (they seem to think they are invulnerable right now), she will likely end up hurting herself or having a stroke or heart attack in the next six months to a year.
How can we plan for when these people end up in the hospital and cannot safely return to their home?
How can we plan they transfer to a home quickly so they do not end up in ours? The husband is loud, and sometimes he can get quite nasty. I can deal with him well in small doses (I've learned the art of redirecting topics with a dementia sufferer), but I don't want to have any of us living with it—not even temporarily for a week.
I know this is a crazy time as everyone is getting sick and probably we will be jumping through hurdles and things will not go as planned (even if we plan well), but if I have an idea where we could start it would be so helpful.
They will need more help as they age. You have your own family to tend to. Your children need you.
Can their primary care doctor refer them to a social worker to help them plan for their future?
Best wishes to you and your family.
While I'd like to distance ourselves from them (and I have no problem doing this with abusive relatives), it is not an option. These folks are my husband's aunt and uncle, but they raised him so they are very much his parents. They are his closest family. He has no siblings, and they had no other children—though he has cousins who live locally from other aunts/uncles.
They used to be decent people before this all went down, and they even could be very kind. I think the aunt had been covering up for the uncle's increasingly inappropriate behavior and normalized it (even to the point she picked his side when he'd start arguments with people about insane things) so that drove a lot of people away.
But when his aunt opened up to me about her feelings of shame and loneliness I felt bad for her. It's terrible what a stigma there is with dementia! At the same time, the poor woman seems to be her own worst enemy. If she had been able to open up to people instead of trying to make everything look "normal" I think they'd be better off.
But I digress... I guess I'm looking for ideas of an in between solution—something to prepare that helps us to make sure they get care during an emergency, but keeps us from being sucked in. Does that make sense?
Have you contacted Council on Aging for a sitter? They help a couple of times a month for four hour shifts. They help prepare meals, help bathe, will run errands, light housekeeping and so on.
if you will accept responsibility for them, the entire family needs to be on-board. A family meeting is in order, even over FaceTime or Skype. Detail what you will do and what others must do if they expect you to accept this responsibility. Take a calm, determined and organized approach to this. Listen to people, like an attorney, who know what you should do. Everyone has an opinion, but you need facts.
Maybe research facilities that can meet the needs of both, an AL with memory care type facility. Find out what is required for move in, where I live it is a needs assessment and a TB test showing negative.
When the emergency hits, and it will, someone will have to go to the hospital and say, UNSAFE TO DISCHARGE HOME! Repeat until someone helps you. I had no authority for my dad and it was a nightmare, but persistently telling everyone that I needed help because I couldn't meet his CARE NEEDS got me local help.
As Ahmijoy said, try to get Medical and Durable Power of Attorney's for both of them. Be sure that they state the state statutes on the form for DPOA, this will help when dealing with a financial institution.
You must realize that auntie's behavior is indicative of some mental decline, executive function is one of the 1st things that go, meaning that she can't start or follow through with ideas and plans. She is also showtiming, past actions prove their desire for the impression of wellbeing to any and all. So she is probably not waiting to be rescued, she can't implement plans and that is not going to improve, it will only get worse.
One thing that I found very helpful was just knowing that he would be going to a facility if he could no longer care for himself, that it was going to be hard and no one would be happy about it. Get an agreement with your husband about how things will look when the time comes, you don't want to find out later that you are on different pages.
Knowing that they are going to be angry, non compliant and against any thing that takes them out of their home will help you to deal with the emotional consequences that will happen, it's okay that they experience this, it truly becomes about them being safe. They will adjust and learn to live wherever they are, regardless of what they say, this will not kill them. So don't own any of the guilt or manipulation that will be slung around to get their own way.
Great big warm hug! This is such a rotten situation for all. Best luck getting them taken care of. Good job knowing that you will not be moving them into your house and knowing that you need to look ahead. You are far ahead of lots of people in similar situations.
You and hubby have tried. This couple just won't or can't move forward. If something drastic happens, tell the hospital or whoever you have no authority. That you can't possibly take them in because you have a young family and jobs.
it’s important you maintain sanity and a healthy relationship with your husband and children, they are your priority (in my opinion.) You dont want to fester resentment. Maybe you can do resource searching and online assistance for them, without traveling for direct one on one involvement. Call a family meeting to discuss a plan, everyone may decline but at least it shows you made an effort. If you do have a family meeting, be prepared. Look into government resources for the aging/dementia. They should at least have someone you could talk to. Caregiver burnout is truly a problem, and it’s okay to feel that way. Your health, both physical and mental, is important too!
Best wishes and prayers for you and your family.
I certainly understand they whole 'waiting to be rescued" mentality. When my father was living on his own he was like that. I was fine with helping him with things he could not do but I refused to help with things he didn't feel like doing. The more I helped the more helpless he acted. You have to learn how to say no and not feel bad. I found that getting angry at their lack of consideration for the work you have done helped.
Then - you put them in touch with people a few months ago, the wife hasn't done anything about it; what needs doing?
If it's a matter of making the decision to place her husband in memory care, that's quite a big obstacle for a little old lady. You might have to break it down into steps for her. How far did you get the fact-finding process?
Who has POA for them? That's the first order of business. Whoever gets that should open lines of communication with the doctor and other local sources of help. Your contribution can be ordering food for delivery and calling them more frequently. Please don't move them to your home or move in with them.
If his senior family members are not mentally competent, then whoever has POA can make arrangements for them. If they are minimally competent, then they are responsible for their own decisions. You can not take that right away from them - even when they do things that are not in their own best interest.
Your husband and you can prepare for the day, by pre-screening facilities and agencies to provide care. When the day comes, the "hospital" will have a social worker who can help with the process. If the day comes and they are still at home, their doctor will need to declare them incompetent. Then, they can be "provided for" through whoever has POA. So, get those POAs now,
We suspect they are making other dangerous choices, too—like the uncle appears to still be driving despite having been in a couple of fender benders (which they had tried to hide for years), and we think he may have accidentally hurt the aunt.
These are essentially parents to my husband. They have no one closer as family to care for them. They have managed to drive away the rest of his family with confrontational behavior (uncle always loved to start "debates" and dementia has made that so much worse)—including people who could and would have helped them locally.
If we put them in a home, we'd be doing it as a life or death choice—not to take their rights away. It's been something that we probably should have considered years ago, but have been trying very hard to respect their freedom and let them have choices.
If we did get them into care, most of my husband's family will probably be relieved they are in a safe place. An older family member has already gently hinted to the aunt to look into memory care. Most of them would probably be thankful or not even care. The aunt and uncle have managed to burn bridges that much—except with us.
As POA, you can advise them and take actions that are in their best interests only. In this case it is in their best interest to go into a Long Term Care Facility. Start looking at facilities sooner than later that fits thier budget. Pick one and settle them there. If the lady...is she your MIL or like an MIL? is sane enough to go visit a couple, then do so. Tell her in no uncertain terms that she is not in a position to care for her husband, and unless they can afford 24/7 in home care, on choice is a LTC. Both you and your husband have to sit down together and explain that to her.
In the mean time stay away from visting them without GLOVES and a FACE mask, Keep aside a set of clothes for visting them only. When you come home, you take them of and place in washing machine; take a shower before you go any further into your home and be around your children.
I can't risk my husband getting sick. He is older than me and has pre-existing conditions. Beyond me being crushed, our children would be destroyed. The world needs him right now, too. He is doing special work that will help hospitals...
I love all my family, but I am too selfish to allow them to sacrifice my husband, because of their stupid dangerous self-destructive choices.