My husband and I are the sole caregivers for my mother and his father. Of the 9 siblings, besides us, no one helps with anything. They might show up for 2 hours twice a year and bring a coffee to them, or a burger combo from the local fast food place. We may get asked in passing how we are, but not in a "we are really concerned how you are managing" kind of way. Out of the 9 one sibling is outstanding, but the others? Wow. We have had our eyes opened for sure. We have made our needs known, tried to communicate but it is obvious we are travelling this road with only ourselves for support. We are not looking for answers now. Just needed to vent.
Respite supports the Caregiver. You will have to look into respite care.
It may be covered by medicare insurance if you are short on funds for respite.
If they bring them fast food hamburgers, don't expect anything from them.
Look into respite and get as much as you can.
I don’t mean to sound rude or unsupportive. I’m just saying that I don’t see a problem with what the siblings are doing.
Did you and your husband choose this with unrealistic expectations? Did you think it would be easier than it is? I’m honestly curious.
I do think you and your DH must be kind, empathetic souls because you chose to give yourselves up to the cause. Not everyone is capable of doing that.
When you choose to be a caregiver to an elderly person, you are choosing to give your entire life and self up. That is what caregiving is.
That is also why many people can’t/won’t do it. They choose self-preservation and their families over caregiving. It’s not right or wrong. It’s just a different choice based on many considerations.
Parents’ conditions will worsen. You and husband will become more exhausted. The situation will wear on your marriage and health. This is the way it goes - always. There is no other playlist and no other outcome. It happens over and over again, partly because caregivers are not well enough informed. But now you are.
Please take steps for parents to get full time professional care where they can make new friends, enjoy life and be safe. Do it soon.
Whatever their individual reasoning may be, it is theirs and you are very unlikely to change others to do as you feel they should.
Now you are left with your own tough decisions about how long you are able to be 24/7 caregivers. I am so very sorry. You are not alone in this tough decision-making. I wish you the very best of luck.
I think the short answer to your question of "who supports the caregiver?" is whomever the caregiver can find:
Online support group...a therapist...friends...your pastor...your local aging resource center...respite care...hired caregivers...facility care...your own healthcare providers, etc...
Bottom line, it is up to us caregivers to care for ourselves, and that includes finding our own support systems.
A cousin of mine was in this position - her mom wanted to stay at home (out of stubborness and the other siblings agreed they would honor the moms wishes, but part of it was they did not want to see the moms estate eroded away in AL costs
So the four siblings decided they would chip in to allow the mom to stay at home>
Of course as is often the case, it falls to ONE sibling. This one cousin of mine and her husband are very wealthy and I think the others think she has the time to do it
Finally, she had had enough .She put out an email to all of them saying we agreed we would chip in to avoid Assisted Living. You all have not chipped in with work . If that doesnt change, I am going to insist we move mom to an assisted living facility.
That caused the siblings to move quicker. The one cousin still does the most work, but these days gets a lot more help as they have devised a schedule of who comes on what day of the week.
None of them were willing or able to step up when my sister was in "early dementia crisis". So, I did.
I thought it would be okay, believing her family would at least visit her regularly, continue to be her social/family support.
This is how it worked when I was my mother's care giver a few years ago...my other 3 sisters were very faithful in each spending a morning and sharing lunch with mom every week. It made me feel I was not alone, eventhough I was the only hands-on caregiver. Us sister's shared a mutual love and dedication to our mother, each in our own way.
My experience as caregiver for my sister is entirely different. The first year, her kids and some grandkids did make efforts to visit somewhat regularly.
This past year (year #2), totally different.
Rarely even a phone call from her sons, just Mother's Day, and Christmas.
She has one son (her youngest one) who does take her out to eat every Friday, and to his house Sunday afternoons. The rest of the time ... I am it - the center of my sister's universe.
It is beyond my comprehension why they show so little concern for their mother, or for me - their aunty. I know better than to expect that now, but it makes me feel quite sad, for my sister especially, but it does baffle me.