It started eighteen years ago when hurricane Katrina destroyed my hometown of New Orleans. Not only did I lose my home but so did my mother-in-law. So when we got settled in another town, she came to live with us. She stayed a few months and then moved to her daughter’s town in another state.
Following her was my brother-in-law who passed away while with us. He was divorced and his adult kids weren’t up for the job of caring for him, so we stepped in.
At the same time my dad developed several types of cancer, so we took over bringing him to his appointments eventually moving my parents near us. Then dad’s cancer worsened and he passed.
While this was going on we would take numerous 500 mile trips to see mother-in-law and my husband handled all the finances.
Also, while this was going on my mom got sick. So then we took over caregiver role for her. Needless to say, our lives have been about other people for quite some time.
Now I’m exhausted and wondering how much longer I can do this. My mom is terrified of care homes and doesn’t trust in home paid caregivers. Her aunt had a terrible experience at a nursing home (abuse, neglect, etc) and another relative was robbed by the in home care. So it’s just us.
How do you find time for yourself with all this? I didn’t make it to the dentist all last year because appointments need to be made a month in advance and I had to cancel five times when mom needed to be hospitalized or have surgery. Luckily I’m healthy so far but if something happened to my husband or I we’d be in trouble.
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I guess people either expect children to throw themselves onto their funeral pyres in sacrifice or they do not. Human beings are by nature very selfish.
As to the children, it is up to them whether to take on this burden or not. I spent my life as an RN. While I loved it, I also knew my own limitations and knew I could never do such a thing 24/7 for a family member. That was my limitation. I embraced it. And I can only suggest to others that they embrace their own limitations. The job description for Sainthood is truly an ugly one.
You have done this. There is a deep understanding within you. Now you tell us that mother doesn't like the idea of going into care. Might I ask, who DOES??? I don't like it either. But as my brother said of his days in ALF, "It's like when I was young and in the army. I don't like it, but I make the best of it".
Up to you. It is your choice. But for me, I recognize people have free will and a right to their own choice. At the same time I hold them responsible for their own choices. I don't pat them on their backs and tell them how wonderful they are as they make ready to leap on the burning sticks. I wish you so much luck in making now this choice for what time you and hubby have left together. I mean that. I wish you the VERY BEST.
I learned from my mom, loooonnnngggg ago that it was important to stand up for your own life, family and marriage. And that "available" (she was a stay at home mom with 3 young kids) did not equal "obligation" to provide hands on care.
Your mother's fears may or not be founded in reality. In-home caregivers need to be vetted and bonded, and valuables removed.
You might benefit from having a "needs assessment " done by a SW/RN at her doctor's office or the local Area Agency on Aging. Then do some visits of LOTS of facilities that are affordable for her. Visit several times. In doing this, we were able to quickly eliminate places that were unsuitable in any way.
Good luck. Your mom is lucky to have you as her advocate.
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There are many very nice AL facilities, I have two in one now. Her self-imposed terror is not a good reason to keep her with you.
You have overdone this caregiving thing, itis time to take your life back you and your husband owe that to each other.
Sending support your way.
Do not take on supporting others before you are financially able to make sure you can provide for yourselves.
There are resources for those that can't. (granted they may not be top of the line but you can not put yourself in a position to "hope" someone cares for you if you are in the same position 5 years, 10 years down the line)
In order to care for yourself and your family you HAVE to establish boundaries and stick to them.
Also "nursing homes" now more appropriately called Skilled Nursing facilities are NOT the same as a nursing home that someone might have seen 10, 15, 20 years ago.
There are levels of care from
Skilled Nursing, this is for people that have need for actual Medical Care.
Memory Care, for people diagnosed with dementia or cognitive issues, and or might be a flight risk.
Assisted Living, for those that need some or a lot of help with ADL's. Generally not a locked unit and residents can come and go.
Independent Living. For those that need no help but want the security of having a community. Often IL is part of a facility that has a continuum of care.
Stop cancelling your appointments. If mom is hospitalized keep your appointment, she is safe in the hospital the doctors and nurses can "spare you" for a few hours.
If mom has any income, use that to hire caregivers. Also a caregiver agreement between you and mom will make it possible that you can be paid to be her caregiver.
If mom or dad is a Veteran check to see if mom is eligible for any benefits from the VA. Contact you local Veterans Assistance Commission or the VA . Neither will charge you for their services.
The fact that your mother doesn't want home care or go into a NH is, quite frankly, her problem, not yours.
Tough love is called for here, imo. You can't do it all, so mother has a choice. Either she pays for in home caregivers or she goes into Assisted Living, which is like hotel life with care thrown in. Its not a given that we need to make our parents happy, at our OWN expense, bc they want this, that, and the other thing. A good mother would be taking her daughter's needs into consideration and not just dwelling on her own wants.
At least we (I!) have learned the lesson to NOT do this to our children.
I suppose you have to decide if that is ok or not.
Is there room for your life too?
You are an angel here on earth for helping so many people, and you will be blessed for your good deeds.
Go to Medicare.gov to get information on getting help to come to your mother’s home to provide ADL for her. The service that Medicare provides is on an intermittent or part-time basis, and your mother must be home-bound.
Make sure that all of your mother’s important papers and money must be locked away and secured in a safe place where the caregivers cannot have access to them.
You deserve a break, and the part-time help will be a great help to you.
In the meantime, consider something: Would anyone (besides husband) in your family care for YOU when the time came? Because it’s common for one person to do it all, but when that person is in poor shape, no one will step up. You’re definitely a good person, and it’s sad so many expected you to do it all while they did nothing.
You “found yourself” in these situations because others shrugged and said “ah, Nikki won’t say no.”