Having hard time giving up my independence. What should I do?

My guess is that both DebJoy and TNtechie are feeling quite upset at the moment, which is a pity. Yes this site is for support. However sometimes the support involves putting in a very different approach to the situation, at least for consideration, and sometimes the person responds that it has been quite helpful to look at things in a different way.

DebJoy, you have no need to explain why the finances have worked out the way you describe, but if you read all the other posts, you will see that most people find it difficult to understand. Perhaps if you did explain, you could get more ideas about what to do. Some of the questions and answers about Medicaid and Medicare are quite technical, without a need to provide personal information.

Unless the poster is clearly being nasty, it is better to accept that their intentions are good, and just write it off if it doesn’t suit you. You have enough problems already, without getting upset unnecessarily.

Best wishes to both.

From this and previous posts, I get the feeling that you did not really want Dad to move in but somehow talked yourself into it - maybe because you had a hand in why Dad doesn't qualify for Medicaid? Since Dad is bedridden, he would normally qualify for SNC with Medicaid to pay for it. The only time I have heard of someone not qualifying for Medicaid based only on income is when their monthly income exceeded the cost of the SNC facility. So if Dad doesn't qualify there should be some other reason - wanting to shield assets for an inheritance or problems with the 5 year look back? Possibly financing the start up of your business?

Maybe I'm completely wrong but if you had a voice in encouraging some gift spending by your father that makes him ineligible for Medicaid until repayment, then you also choose at least the risk that you would be taking care of Dad 24/7 for five years from that gift.

If you are trading your life in order to preserve an inheritance for you and your sister, then I think that's a less than optimal choice. Dad's assets should be used for Dad's care - there is no inheritance until after all Dad needs have been met.

Having a bedridden person living upstairs is not a good or safe choice. You either need to install a stair lift or move to a place with an entry level bedroom. Otherwise every time Dad needs to go out for a doctor's appointment or test, his welfare is being risked getting down those steps - to say nothing of any emergencies like fire or a gas line leak. The stairs may also limit your respite care choices as some care givers with a bad knee or not wanting to face trying to get your father out of the house/apartment will decline. And what about Dad? What did he do to deserve the social isolation of a single room?

One of my elderly family members told me decades ago that people are just about as happy as they choose to be. She realized if she married the man she wanted, they would never have much money. So she decided to be happy that she had a good man for a husband who was devoted to her and their children. They never went on expensive vacations, but they went on lots of picnics and camping trips and had friends in their house for dinner parties almost every week.

Whatever choices contributed to your decision to care for your father in your home, you need to step up and accept you made a decision and you choose this life. As someone who is also in their 50s who has canceled plans at the last minute to unexpectedly care for an elder or child that is not my own, I completely understand wanting to remain "independent"; however, when you make the choice to care for a needy person (whether elder or child) you are not independent anymore. You can choose to bemoan that lost independence and focus on everything you are missing or you can choose to embrace your chosen life and develop the possibilities it offers for happiness.

I encourage you to resolve whatever issue is preventing Dad's Medicaid qualification and place him in SNC - both for yourself and for your father. If that's not possible and you need to continue caring for your father, I encourage you to find a better living arrangement, get as much respite care as you can afford, and develop more activities you can sustain from home. Learn to find some happiness in the life you have chosen. If facebook only makes you feel envious of others who haven't faced your choices yet, then disconnect from facebook for a while. I host game parties for family and friends and I "escape" for in person dinners 2-4 times a month. One of those monthly dinners is with a group of high school friends who are or have cared for their elderly parents - we understand each other.

God bless you and your father during this difficult adjustment.

All of the previous answers are good ones. Don’t feel guilty about wanting to enjoy your life. Hire someone to stay with him if you want to out. Consider the board and care solution. You need to have a life.

I'm going through that too, and have decided to spend Mom's money on aides to care for her. It's the only way to hold on to my job and what remains of my sanity.

There are people here who are 24/ 7 caregivers and I don't know how they do it. (To me, that's something out of a Gothic horror story, as another said, a prison sentence.) And it's true that we could be stuck doing this for a long time. They are not going to get any better, and the demands on us will only increase.

Caregiving can wreck physical and mental health. Some will say take antidepressants - think about that, there is something very wrong when we're supposed to drug ourselves to cope with caregiving - and they don't work for everyone (I get all the side effects and they do not help at all).

There's nothing wrong with hiring an aide or a sitter for Dad so you can have a life. Doing that is the only way I can keep Mom out of a nursing home - otherwise i would collapse.

Debjoy, could this be a situation of manipulation, you are going out and low and behold he has pain.

I would keep an eye on this type of thing, it may be a pain, psychosomatic pain. You must set boundaries and not let him prey on your guilt. My sister did this kind of thing, holiday weekend, all of a sudden she's going to die, she just knows it and there goes our plans, only to hear, I feel better now, after our plans were irrevocably lost. Your heart bleeds for them but it is easy to feel used and abused when your needs don't mean diddly squat. Perfect breeding ground for resentment, bitterness and anger to grow. They are going to die and as sad as it is, it is the circle of life and we all are going to die in these old meat bodies. I pray in my time that I will be gracious and not try to take someone out with me, this is what my sisters behavior felt like she was doing.

If he receives a pension and SS this does not disqualify him from receiving Medicaid or whatever it is called in your state. It means he pays more of his care. If I am wrong, please correct me.

Have you checked around for board and care facilities that will accept what he gets as full payment, less like 100.00 monthly for personal needs? Oh by the way, he won't be happy about it, that's just how it is, no one wants to live at one of "those places"

You mentioned hospice, have you checked for a non-profit in facility hospice? Between Medicare and his income this may be a solution to his care. I know that people are not put on hospice lightly and that it typically means death is near, guilt trip. I am a firm believer that nobody has the right to ask anyone else to give up their life indefinitely to be the sole caregiver, it is selfish. I also believe that people need time alone to get their hearts right before they pass over. Being with someone all the time doesn't allow this and the more they demand company the more they need to do it. (I know that will offend some and I am sorry if my personal beliefs are offensive to you, but they are mine and can be discarded if they are not your, no need for attacks)

Trx making plans that he isn't aware of, give the aid, sitter or whomever is with him the number for hospice, be sure and let hospice know that the aid may call. Then go get some much needed respite.

Sorry for the book, I am just trying to help and I read your desperation. I get stressed out and the obvious is no longer obvious.

Hugs, you can figure this out!

I have never heard that there is to much money for Medicaid,.

Please find out what needs to be done to get aid, paying for his care out of his money will give you your life back so just do it.

You will never get this time back and the longer you are out of the picture the less friends you will have, nothing personal, life moves on and you are moving with it or you aren't.

Best luck getting him into a facility that will meet his needs and give you your life back.

Your previous post says Dad brings in too much for Medicaid and there is no Miller trust in your state.

Check with Hospice about respite care. They should allow you time away. I think that Medicare allows for it when on Hospice. If not, ask if Dad can go to a NH or AL for a week (on his dime) so you can have a break. Use Dads money to pay someone to sit with Dad. Hospice should be supplying an aide. If you need more help, hire them with Dads money.

You shouldn’t be doing this. You say that you have explored all the financial possibilities. Care is very expensive, and giving up an expected inheritance is hard on both sides, but your father’s money may need to be used to pay for his care. If he has no money, then Medicaid needs to be considered. Unless his illness is likely to be terminal within a do-able time, and you are only 53, remember that he may live to be well over 90. You will have given up your life, but may still have to face the need for him to go into a care facility in a few years’ time. Looking to the future when things will get worse can be a wake-up call to tell you that there is no point in killing yourself to cope at this point. These years will not come again, and 24/7 care on your own is worse than a prison sentence. No, you aren’t being selfish. You are a daughter, not an aged care worker. Re-check the care options, and ask here for comments on the problems they have presented if you can’t see answers. People here have between them had experience of almost every situation!

You should feel free to use any care services, respite services you can.  You need to maintain physical and mental health.  No reason for feeling guilt whatsoever. You MUST take care of yourself. 

It is not to early to look down the road to the day when your father needs more care than can be provided at home.  Look into Medicaid, nursing homes, be prepared. 

But above all, love yourself. You deserve it.