My husband, 72, is at home with a caregiver for the hours that I am at work, 9-2. My adult children all feel that he should be in some sort of residence since he recently had a leg amputated and cannot yet transfer by himself. He has other health problems as well. He has PT, OT and nurse visits every week but he has not made much progress. The caretakers are not covered by any insurance right now, just by the generosity of people through a Go Fund Me site. Of,course that will run out soon. 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? He and I both would like him to stay at home. 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. Meanwhile my daughters are not being very supportive mentally and the one who lives nearby is not helping at all right now, although at first she was very understanding and supportive.
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.
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.
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?
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 .
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.
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.
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.
No one needs to pay an attorney to sit there and fill in a form because s/he's just gonna ask you the questions and write down your answers. You don't need a legal representative to fill out the Medicaid app, there's a page that asks you to designate who your representative is who is filling out the app and it grants them permission. Please don't pay an attorney to do this.
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.
Thank you for your input.
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 ❤️
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.
i am 71 and only work 9-2. I love my job and it definitely helps me cope, plus we need the income.
I am not saying that my kids are not supportive at all. When I wrote this I was having a particularly hard day. My son is wonderfully supportive but lives out of town. He and his wife will be visiting this weekend, as well as my younger daughter who is also out of town. My other daughter has come around after a couple of weeks where we really did not communicate. We are all under a lot of stress so I am trying to cut them some slack.
Thank you.
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".
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.
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?
i am not going to quit my job because I physically can not give him the care he needs. Then we would have even less income.
We will have some coverage for help if the Advantage plan from our current health coverage goes through. If not I will apply for Medicaid for him.
i don’t expect my daughter to physically take care of him. When I say supportive I mean emotionally and take my feelings into account.
He is not a veteran,
Thank you.
As the Community Spouse, your income and assets are protected.
Have you consulted a Medicaid planner or Elder Law attorney?