How to deal with adult children who don’t share your opinion?

Tried to play catch up with all the answers and responses but probably missed a bit. Did he go to short term rehab after any of his recent hospital stays including his amputation? If so, how well did he participate and progress with rehab every day?

I would just ask you to be cautious in selecting your Medicare Advantage Program. Most have a very low (or no monthly premium) and some offer some support for dental and vision but if your like your husband's current doctor's you need to check and see if they will be in the network of the Advantage plan that you select. Also be aware that these networks can change periodically so, just like with a Medicare supplement insurance plan, make sure you check your plan yearly during the open enrollment period.

Make sure your kids know that you don't expect them to participate in their Dad's daily care and that you are taking steps to secure care for him. Also this is the time to make sure that the VIDs (very important documents) (Will, PoA, Advanced Directive) are current for both of you. It sounds like they are supportive of you but are terrified that you will be caught up in an overwhelming caregiver role. I'm sure you can see this so just let them know that you appreciate their support, comments and opinions.

I'm glad that you have decided not to quit your job that you like. It gives you a different landscape for a few hours a day and provides your with some different social interaction.

Thank you also for giving the forum members responses and updates. So often people ask questions, get responses and disappear into the sands of the desert never to be heard from again........ until there is another problem.

Wishing you good luck and peace on your journey.

Perhaps you could ‘do a deal’. He stays at home until…x y z. For many carers, it’s double incontinence. Or it could be for 3 months, or 6 months. Then you agree to reconsider. If the kids knew that there was a definite time for a fresh look, it might get them off your back for now. It might also help you, if they are backing off because they think you aren’t even considering the longer term, and it will just drag on.

I am sorry for all that you are dealing with. Your children know this is not sustainable forever. They are afraid you are going to run out of money to be able to take care of yourself and/or that you are going to run yourself down and then be in need of care yourself.

After the PT and OT folks leave, is he trying to do the exercises and movements they prescribe? Or is he only doing it when they visit once a week? The answer to that question is going to let you know how determined he is to become self sufficient. It will take work on his part. Also losing a limb is traumatic...he may need some mental therapy as well.

You are correct that you and your husband can make your own decisions about things, that doesn't mean your children are obligated to give up their lives and take on caregiving because of your decisions.

Have you checked into what he would qualify for as far as in home care and placement if it comes to that? There are rules in place with Medicare / Medicaid so that you would not lose your home. You need to make a list of all of your assets and income and make an appointment with an Elder Lawyer for some guidance.

Was the loss of his leg due to illness or accident? Just trying to figure out how the "go fund me" came into play.

I was the adult who wanted them to stay home. 6 days in a home and my grandfather passed. (Let me be clear- I was raised by my grandparents, both my parents have been deceased since I was young but I was raised since birth by my grandparents- so it’s more like I’m talking about my parents) He had dementia but he was actually aware of what was happening to him. He was completely aware that he lost his mental capacity. He knew when it was time to stop driving, everything he did he right. I was his primary caregiver. But his son, waited until he knew it could’ve been 1 day or 10 days years. And he only cares about the money he is making sure no grandchildren get anything. That’s why he wanted them in there. His wife doesn’t like his nieces, so she controls him. And he always said he’d never put his parents in a home.
until she made it sound like a great idea. I think my pop figured it out and had a heart attack. Bc he never ever wanted that. He was clear about that even thru out the dementia.
the biggest mistake he made, was trusting that money wouldn’t ruin the family. It did. I don’t care. I just don’t think my grandmom should be somewhere she doesn’t belong, isolated from family, and all done one week after her husband of 70 years passed. She couldn’t even think. She’s mentally and physically stable. She uses a cane. But otherwise, she’s healthy as a horse. I think she just sees that all this money is just being spent and she remembers having to drop out of school to help pay bills, so her mindset is fearful of being poor… which her son has wasted no time in doing. But. What if she wants to leave? What happens then. Will she be eligible for Medicaid and welfare still?

I’m sorry you are all going through this .
Sounds as if your children are worried this is too much to handle at home.
You may want to be prepared for that time if/when it is no longer working to keep your husband at home . Tour some facilities . Perhaps even get his name on the list especially if the waiting list is already long . Apply for Medicaid. At least you will have a plan B in place . Your children can not be plan B .
Good luck . I hope your husband shows some improvement to make the burden less at home . Even if his mind is sharp, if he needs a lot of physical help, it can be difficult to manage at home .

"They seem to believe that going into a nursing home would be an easy solution but where do they think the money will come from for that?"

If you have no assets then medicaid would have to be applied for.

"He and I both would like him to stay at home."

Sometimes what we want and what can actually be handled reasonably are two different things. If your husband requires assistance to bathe, shower, go to the bathroom, get dressed, etc, and you cannot afford round the clock care to meet his needs, nor can you physically do all this (which at your age you can't) then placement in a facility may be necessary.

He may never be able to transfer on his own anymore. Then what?

"It is very hard for me but I don’t think that a nursing home would be beneficial right now, at his age and being mentally sharp."

Being mentally sharp has nothing to do with needing a nursing home. His brain may be good but his body is falling apart. That is why he would need to go into a facility.

This is the unfortunate reality of old age. Your adult children can help here and there but to ask them to take on full care for their father is unreasonable.

They have to continue working and taking care of their own households and prepare for their own old age too.

There are no easy, feel good answers for your husbands and your situation. Sometimes we have to do things we don't want to do or don't like. That is now the case in regards to your husbands needs.

I'm sorry for all you are going through. However, I think you are missing what they are trying to tell you.

The reason why your daughters are not being supportive and helping you at home is because the burden is too great on them to continue to help care for both you and your husband at home.

If you and your husband choose to be at home, then you have to take the steps to be fully functional and responsible for you and your husband's care at home. If that means that you have to get a housekeeper, then by all means, get a housekeeper. If that means you need help with meals, then look toward the various agencies to help you provide meals. If you need someone to sit with your husband so that you can do errands, then by all means, get some home health care.

They are telling you that if you move to managed care, they are willing to come see him and you. However, they cannot help with the every day assistance any longer.

You ask a good question, where do you get the money. The first thing you should do is take stock of all your assets. Write them on a piece of paper. Then look for possible places that could care for you and your husband. You might have to go to a place that accepts Medicaid. Involve them in the search, show them the finances. Involve them in the search. Let them ask the facility questions also. Some of these place have long waiting lists. Your daughters need to know this also.

I'm sure they still care for you. They just don't want you to become totally dependent on them for your care.

This is always difficult. My husband, 84yo., who has at least stage 4 dementia and Parkinson's, is at home with OT coming in but no other help than my daughter who is currently living with us. His 3 grown sons, from a previous marriage - and we are married over 40 yrs. - barely visit their father much less offer to help, though one will come on the rare occasion when both my daughter - who is not his biological child - and myself have to be out. For the most part they are MIA. I cannot spend energy worrying about what they think.

Make sure you have POA and medical authority also so they cannot try to "take over" at some point and maybe even go against what you know are his wishes.

I'm not saying that your children will do this, but anxiety makes people do strange things, especially if they are not dealing well with the situation or are in denial of what is reality.

May his recovery continue with this new reality you both have so that he and you can feel as productive as much as possible. It is a huge change for him. Love each other and be good to yourself. I'm glad you are keeping your job. it is good for your well-being.

lfm5252: As your husband may require Medicaid, it's good that you said that you have intended to apply for it via the attorney.

Your daughters may want to be sure that caretaking does not fall to them. Don't base your care plans on expecting them to offer hands-on help. If you can manage things yourself with the part time help you now have, carry on. If it gets to be too much, you might need an extra shift or two of help each week. Make your decisions based on what you are able to do yourself. Your household is yours and your husband's and it sounds like you are both mentally competatn to decide things for yourselves.. Your adult children don't need to agree with you.

Don't allow the difference of opinion between you and your daughter to come between you all.

Both my son and daughter have expressed to me their concern over the toll that being my mother's 24/7 caregiver is taking on me. Your daughters probably are feeling the same way as they watch you struggle with maintaining their father's care as his needs continue to increase.

My two young adult children would be fine if I decided to place my mother in a facility. My daughter especially feels that way and has said that if anything should happen to me, she isn't willing to take on the care of her grandmother. (I haven't asked her to.)

I don't vent to her or to my son. I don't ask or expect them to care for their grandmother because it's not their duty.

Does she love me? Yes! Does she love her grandmother? Yes! Do I feel some sort of way about her opinion? No!

So my advice on how to deal with your adult children? Love them, enjoy them and stop fretting about and judging their opinions. Realize that a difference of opinion does not necessarily translate into a lack of support. Be the mother that they need, mature, loving and kind and then get on with the care of your husband as you and he see fit.

Also, please look/ask the VA what resources are available. I know you can get in home assistance plus other help. There's alot of good information on their website. Perhaps your son can get some of the information. In addition, look into Meals on Wheels for having lunch delivered. You may want to look into anti- depressant medication. Ask your primary care physician about this. It could be beneficial for both you and your husband for a short term.

Have the financial conversation with them about the question you present, " where do they think the money for facility placement will come from?". Perhaps have a family meeting with a Geriatric Specialist or husband's PCP to let everyone have their say and hear all the options , costs, considerations, pluses and minuses to all options together. Bottom line though is that if your husband is " alert & oriented", deemed cognitively appropriate by his PCP to make his own decisions and, he has chosen to stay at home and you as the spouse/ designated pcg ( primary caregiver) agrees, then the adult children need to be educated on " patient rights" being honored. They may be lovingly concerned about you both.

I have not yet applied for Medicaid but have spoken with an Eldercare attorney who has given me the steps to do that. I am also trying to add to my insurance, a federal plan, which is now offering a Medicare advantage plan. I am waiting on Medicare to add our Part B so that can happen.
Thank you for your input.

It's OK to disagree. You & your adult children have different views based on where you stand.

Watching a situation is going to be very different to being IN the situation.

I like the phrase *Home for as long as possible*. It is a good aim. It includes the reality that care at home sometimes gets too hard. It sends a simple yet clear message to the concerned of your goal.

All options for care at home can be trialled before considering alternatives. So home services, maybe cleaning, meal service, other services to lighten YOUR load. Care staff to assist your husband while you are at work or running errands.

Having PT, OT & Nursing is ideal! To assess & advice the safest way for transfers + provide training for your husband, yourself & care staff for any equipment.

Working with a Physio towards solo transfers to wheelchair would be great. If not possible, work towards 1 x assist.

Regarding 'supportive'..
Sometimes it is hard to offer support when you don't agree.

I know my family discussing their goals has really helped me. I was worried about caregiver burnout - it certainly is real.

I see in the choices of life they have chosen Hardwork but Home over Heartbreaking Move.

I have another choosing High Risks at Home.

While I have come to respect they have their own choices to make, I will not offer physical assistance to sustain any unsafe situations.

I hope you can agree to disagree but still have love ❤️

I doubt if you can expect help from your kids if it is not now forthcoming.
Can you tell me why your husband is needing the caregivers? Is it simply the matter of transfer to WC? With PT and OT help he may be able to be more self sufficient at home while you work? How is he with transferring with you, and how are you holding up physically?

It is time now to assess finances. Whether or not you own a home; whether or not you can take out a reverse mortgage for some home help and whether that is or is not a good idea. What funds you have given your social security together. Whether he could go into care on Medicaid. It is a time for an elder law attorney or someone else to help you access all that is available to you. I wonder if, tho they are unwilling to help with hands on care, if one of the kids can help with all of that.

I am so sorry. I don't know your age, but working full time has to be tough with all else.
An amputation for an otherwise healthy 72 year old should with good asssitive supplies still allow him a fairly active life without home care for a while.

I can't know your exact situation, but certainly do wish you luck. Call your local council on aging and get access to all the resources you can get. I hope you'll continue to update us.

As to the kids opinion, it doesn't figure in this. The question now is what can they do or will they do to help. Otherwise they should go away and be quiet.

If your husband is of sound mind, I see no reason for him to be in a home. I would want him to get enough therapy that he can do things for himself. Even in a wheelchair he should be able to transfer himself. Is your home handicapped excessable? Can he easily transfer to the toilet? He needs to be as independent as possible thats what the OT is for. He needs to do the work. Two of my friends had amputations done and lived in their homes. My GF moved everything to her bottom cabinets for easier excess. You can put a commode over a toilet so you have the arms to help you lift up and the legs for stability. I would call the Dept of Disabilities to help you in helping to make ur husband as independent as possible. Maybe a ramp can be supplied.

It will depend on your finances, but Medicaid maybe able to help with an aide. Maybe even the Dept of Disabilities. I would not quit ur job. You need it for you and the hours are not bad. It may take a while for therapy to work. I really think its too soon to say he is ready for a NH. You need to tell your daughter "not at this point".

I just wanted to say I am sorry for what you and your husband are going through. And sorry that your daughters are not being supportive. I don’t always agree 100% with my mom’s decisions around my father’s care but I always try to remind myself that she is his primary caregiver and lives with him. I visit them 2, 3, or more times per week but I try to support them both. Are your daughters worried that it is going to wear you out? Or that he isn’t getting enough support and needs more care? Have you explained your concerns and what do they say to that?

You could compromise with your children. I don’t think they are intentionally trying to be unsupportive of you or your husband. They are being realistic by viewing what the future holds for you and your husband.

A compromise would be to say that you will consider looking at suitable facilities in your area.

This would show your children that you value their opinion and it would also give you peace of mind knowing that you will have options for your husband should he need to be placed in the future.

Do you think he's depressed and maybe that's why he isn't making progress?

When the Go Fund Me money runs out... what is your plan? Are you thinking of quitting your job to care for him? Your daughter isn't obligated to help -- I think she sees it will be overwhelming and she gets to choose to do it. No one can be assumed into a caregiving role.

If he hasn't made much progress with all that therapy, it will only get worse over time.

I think your adult children have the right idea, but I agree that the financing needs to be figured out. Have you contacted social services to see if he qualifies for any in-home help?

Is he a veteran? If so, have you checked out the VA?

Have you applied for Medicaid for you husband?

As the Community Spouse, your income and assets are protected.

Have you consulted a Medicaid planner or Elder Law attorney?