My husband, Chris, & I live with and provide full care for my parents. There is really no one who can take our place. My mother is almost completely dependent & bedridden and needs help with absolutely everything physical. I've been having to push & force myself beyond my limits (physical & mental) because there is no other choice. My father is a little bit more self sufficient physically, but he has severe depression & anxiety and often takes out his anger by yelling & complaining.
Our role as caregivers was put upon us nearly 8 months ago (Aug '23), 4 months prior to our planned move to TX to be with Chris's family. He has been living here (in the Chicago metro area) for 18 years, and we have only really been able to see his family for occasional visits. We are unable to place my mother in assisted living or hire a professional caregiver because we cannot afford it. My parents never planned for their long term care needs. It was just expected to all fall to us.
Not everyone in my family seems to understand, or even care, that Chris has given up so much, being away from his family. I think that is what upsets me the most - making us feel like Chris's family doesn't matter.
My father is angry that we want to move. One of my sisters actually suggested that Chris's family uproot their lives & move here if they want to see us. We haven't been able to see them in almost 2 years. We last saw them almost 2 years ago, for my MIL's (my mother in love) funeral. She passed away suddenly less than 2 weeks after we returned from visiting them for Easter (which was a visit to which some of my family objected). We're of course, very thankful that we got to visit & see her for Easter.
Next month is my FIL's birthday. His family really wants to fly us out so we can visit them for that week. We really want to go. We're trying to figure out how to break it to my family. But the most difficult part is going to be getting someone to cover for us. I don't know what our options are for temporary respite, especially since we have no way to pay for it. And my mother would have to go to a facility; we can't bring anyone here because we can't have both of my parents alone in the house. Any information or advice is greatly appreciated. Thank you for also letting me vent.
"Our role as caregivers was put upon us nearly 8 months ago (Aug '23), 4 months prior to our planned move to TX to be with Chris's family. He has been living here (in the Chicago metro area) for 18 years, and we have only really been able to see his family for occasional visits. We are unable to place my mother in assisted living or hire a professional caregiver because we cannot afford it. My parents never planned for their long term care needs. It was just expected to all fall to us."
First of all, this wasn't "put on you". You "assumed this". It is best to take responsibility for your actions so that you don't assume the mantle of victimhood.
You say that you are unable to put your Mom in ALS because YOU cannot afford it; what you mean here is the SHE cannot afford it and that's because she never saved for care.
You also say that it "was just expected to all fall to us".
What is expected in life is seldom what really happens.
Now. What do you suppose happens to elders who live in that manner, expecting the world to take care of them when they DO NOT HAVE CHILDREN?
I think you have got this one.
They apply to Medicaid and they go into care with the government's help. They spend down what resources they have, and Uncle Sam picks up the rest.
You use words that indicate you ACCEPT that she did this, ACCEPT that you must care for her, and ACCEPT that this is right.
But it isn't right.
You have a right, in fact, to your own life.
If you choose to throw your lives onto your parent's funeral pyres then that is YOUR CHOICE AS A GROWNUP and you must assume responsibility for making your own choices and living with them.
If you continue feeling responsible for everyone else who took no responsibility for themselves, then I think your lives will come to sad waste. Moreover, you will not make anyone happy. Not them and not yourselves.
You have hard choices to make. Only you can make them. No one can help you.
You surely are welcome to come here to vent. And you haven't really asked for what might help; I think you already know there's not much that can. If you do come here, people will level with you honestly. You can pick up what tidbits might help you, and you can kick the rest to the curb.
I sure wish you good luck, but I can tell you this would not be my choice for my life. And at 81 it would shatter me to think it was my daughter's choice for her and her hubby's lives.
I want to re-emphasize a main point AlvaDear made. Many people on this forum have parents with severe health issues and meager financial resources. if any. The children are not required to pay for their parents' care, nor in this country, to give up their own financial well-being for their parents. That's one of the main functions of Medicaid! It sounds like your parents will qualify. While it takes some time and won't help for the upcoming birthday, it will help immensely for the long term. Please contact your area Agency on Aging for info on getting started. I am very sorry that no one ever told you about Medicaid.
Who has the DPOA? Is there a will?
IMO it is time to start the Medicaid application process, you should NOT be paying for anything for your parents.
Sounds like you have siblings, where are they in this on sided deal?
I would stay back while your husband visits his family, unless you can get a sibling to step in.
In the meantime, consult with an elder attorney about the best course of action to get your Mom into a SNF under Medicaid. Our attorney had us apply to SNF and submit my mother as a private pay individual initially (we had to pay 1-2 mos out of pocket) and then transition them to Medicaid payment.
There is no way AL is enough for your Mom.
Your father is the tougher question. If I could wave a magic wand, he would be in a continuing care facility connected to your Mom where there's an independent living area and he could easily spend time with your Mom. Still that's $. I would also talk to the attorney about that situation, in addition to a social worker at your local council on aging. Some states accept Medicaid for AL, here's state-specific information on coverage: https://www.payingforseniorcare.com/medicaid-waivers/assisted-living
Your parents could apply for Medicaid so your mother could be placed in a LTC permanently . I’m not sure if Medicaid pays for temporary respite . Each state Medicaid rules are different . She would need skilled nursing SNF. Your mother is too debilitated for an assisted living facility . Call your local County Area of Aging to have a social worker to do a needs assessment and to help you with the process .
If Mom ends up in the hospital for some reason , tell them you can not take care of her anymore , no matter what promises they say of setting up homecare to come from Medicare because it won’t be enough . Tell them Mom needs to be placed in a facilty that accepts Medicaid .
Placing Mom permanently would relieve you of a bulk of the hands on care. It will free you up to move as you want . Placing Mom is possible . What you are going to do about Dad , I don’t know . Where would he live if you moved ? That’s the harder part to solve . Would a sibling take him in for awhile at least so you get to go visit in Texas ? Your description of them , it doesn’t sound promising .
Hopefully others here will have some additional tips . Stick around.
To answer you question, no there is nothing available to you so you can see his family. I really feel for you because this type of care will kill you.
and a resounding NO, you DO NOT push yourself physically. If you keep going like this, YOU are headed for a world of your own medical issues.
It may be helpful to contact your state office on Aging to get their thoughts on how your parents would qualify for Assistance in your current state; they might also be able to give you their opinion on what would happen if your parents moved with you. You can also always contact the Office on Aging in TX and explain the situation to them and get their thoughts.
As almost everyone has indicated if your Mom needs 24/7 care she is way beyond what they can handle in AL. She needs placement in a LTC facility. You should contact your state Office on Aging and explain the situation to them particularly if you are planning to move to another state. Each state administers Medicaid differently but most will expect a 5 year look over the shoulder which means they will need Mom's receipts, bank statement, mortgage payments etc. You have to qualify financial for Medicaid and they need to make sure that applicants have not "gifted" sums of money to friends or family in order to qualify.
Dad is another issue because it sounds like he might not qualify for LTC and most Als don't accept Medicaid without a period of private pay. Is he mad simply because you want to move or does he fear that he might not be able to continue to live with you? He's lived his life, he needs to let you live yours. What are your parents relationship with your siblings? How come it all got dumped on you?
Regardless of where you decide to live, it sounds as if you are quickly going to be overwhelmed by caring for your parents. Mom's physical care is going to increase and Dad's anger may or may not lessen particularly if he decides to move to TX with you. Do you have all the VIDs for both of them (wills, DPoA, Medical Proxy)? I would suggest that if they elect to stay in the current state and you are moving, DO NOT accept the DPoA position as it is difficult to handle long distance.
Life is short (trust me .... I'm 80 and I could swear I was only 40 when I went to bed last night!!) You need to live your life............ now! Decide what you want to do, where you want to live. Then drop the decision on the family. If they like it, find, it not, fine. If Dad wants to stay, they figure out what to do with him. If Mom can make decisions, they can decide what to do with her also.
Wishing you good luck, peace and grace in this part of your journey.
Assisted Living or ‘hiring a professional care giver’ are the most expensive types of paid care. An 'extremely high level of care' is beyond the scope of AL anyway, and you need more than 3 'professional care givers' to cover 24 hour care including weekends. Have you looked at other options that could be more affordable?
It might be a very good idea to contact APS and have an independent assessment of M’s needs, how much she can do for herself, her professional care options, and their cost. Some posters have found that care 'requirements' can creep up, and a professional assessment from time to time is really helpful.
In a lopsided caregiving arrangement.
Sometimes it happens that the person/people needing care takes over the caregiver's life. They mosty don't mean to... their needs just grow & grow. The caregiver's own life gets put to one side, then squashed out.
Right now, your family time with DH's family has been squashed out. Plus probably so much more..
The Problem: Caregiving has become too burdeonsome on the caregivers.
The Thought that drove it:
"There is really no one who can take our place"
This. I am glad you are reevaluating this thought & starting to look for alternatives.
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