I have been the 24-7 caregiver for my younger sister for about 5 years. She is 63 years old and under no circumstance can qualify for Medicare (long story, so no need to discuss that). I am financially, physically and emotionally her full time caregiver. If I put her into any type of facility at this point, it will break me financially. Since she’s only 63, she will likely live a long time. So my only hope is to try to do everything myself to stretch the funds as long as possible.
NOW FOR MY QUESTION. How do I stop outsiders from giving totally unsolicited suggestions and comments about the situation. One woman told me I’d rot in hell for cleaning up vomit and poop on the sabbath, like every other day.
A common comment is that I need to stop “Being a perfectionist”. They say it’s too time consuming to fold clothes the way I do (since my sister hides dirty clothes everywhere, it’s the only way to tell which clothes, including mine, are semi-clean). Im told not to clean so much, even though the stench of vomit always lingers in the air. I’m told that I should make simpler meals, even though cooking is one of my few outlets/hobbies. I’m told to buy a bigger car to carry her wheelchair, even though I don’t want to give up my little car and spend money on a car I hate.
Everyone gives unsolicited suggestions on how I should better care for my sister. Do they REALLY think I haven’t spent hours every day looking for treatment, equipment , causes and solutions? Do they REALLY think I don’t take her to a plethora of docs? Must they really assume that I am stupid, despite having a PHD and a successful career before I retired.
no one offers to give me a couple of hours break or to pay for any of that equipment or home care that they believe I should spend my money on. Just comments on what I’m doing wrong. I have anther sister who insists that she can’t help because she isn’t used to handling vomit (like it’s something I could ever get used to). She also claims she can’t contribute monetarily because she doesn’t have the funds (she was a big shot at a major corporation, and often brags she got upper six figure bonuses, and is taking three months of vacations this year alone). She loves to come to my house complaining about her bad golf game, or excitedly telling me I should have gone to be party or another and that I really would have had fun? Does she really need to rub her picture perfect life in my face, while I stink of vomit?
As people make these so-called well meaning comments, I cut more and more people out of my life (most recently cut off the bragging sister). So now it’s just me and my Alzheimer’s sister 24-7.
I know that I should be more thick skinned, even though I’m at the precipice of insanity myself. But, how does everyone else deal with unsolicited insensitive remarks by people who aren’t willing to prove any substantive assistance?
I have been dealing with my significant others dementia for about 6 years now. He has multiple health issues added to the Moderate Neurodegenerative Disease multiple types that was diagnosed over 2 years ago . There was a while that we had visiting nurses in when I was laid up with knee surgery . One of the nurses was chastised me for not doing something SHE thought I should be doing for him . I asker her if She had ever been caretaker for someone with dementia , 24/7 for multiple years ( keeping the edge out of my voice.) She never said another word about what SHE thought I should be doing. If people have never done what we do , they don’t have a clue. After the first 3 years into this, I found a wonderful CareTakers meeting that meets on line 2x a month, went on a mild antidepressant and talk to a therapist once a month . It has helped me tremendously. I know much more about the disease. I know what coming down the line . I know now how important it is to also take care of my self. I know I am not alone and listened to how other caretakers work thru different issues. He slips farther away daily and it’s now time to consider look into memory care to keep him safe and me sane. I do have a durable POA and am able to make both medical and financial decisions for him. I have a few people who get paid to come in on Saturdays and Sunday’s for a few hours. A have few friend that will sit here while in at the doctors or dentist. I am using his $ for this. There is some $ in his savings account to cover some time in memory care and before that is gone I will check into Medicaid. We have been together for over 33 years but never married. There is help out there , try to find the time to check it out . Also check with your local Council on Aging. There is a place in heaven for us, my prayers are with you ..
Did your sister work for at least 10 years in the past? If your sister did and cannot return to work, try applying for her SSDI, or Social Security Disability benefits. This is a safety net income for those completely unable to return to any type of work because of severe medical or mental conditions. If awarded, the wait time is two years for Medicare to start. Meanwhile, use Obamacare in her residential area to fill the healthcare gap. And, you are Not responsible for Any of Her Expenses! She needs her own income to hire herself aids to work in the home or facility. When funds are exhausted, apply for Medicaid 3 months before her funds run iut.
If you do end up wanting solid advice, as well as a place where you can vent without judgment, consider joining the Alzheimer's Dementia Caregiver's FB Support Group:
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share&mibextid=NSMWBT
You will actually get great tips from people who ARE currently caregivers, and who all know what it is like to deal with this disease.
Your other sister chose not to help for whatever her reasons are. She clearly made her decision. She is not obligated to help so don’t blame her. You are choosing to do this and it is a beautiful thing you are doing.
Ignore the pontifications of sanctimonious judgmental a-holes who cloak themselves in their piety like the one you described in your post. That person is a jerk.
As for others offering opinions, that's a common problem for caregivers versus the non-caregivers/not participating folks. You have to be prepared to let it go in one ear and out the other - or- come up with a quick reply. Such as, I'm sure there are lots of ways to do this better, but what I really need right now is a little help. Can you help by coming to sit with her 1 day a week so I can get out of the house....come and stay for a weekend so I can get away? They either help or learn to shut up.
It is annoying to hear everyone's unsolicited advice or backseat driving as I call it. I will say this though....as the caregiver, we are so vested emotionally that we may not see an obvious solution to things. The other side of that coin is that someone from the outside doesn't always understand that there is a reason for our actions. Just try and let it roll off your back because unless you're doing the caregiving, you just don't understand. Especially ignore the woman who says you're going to hell for taking car of your sister on the sabbath. If you had a baby would you not be able to take care of it on the sabbath? Ridiculous ramblings from this woman....
I do have a question....you mention "vomit" in almost every paragraph of your posting. What is with all of the vomit? Why is she vomiting?
Also, everyone is going to want to know what is going on financially. I was shocked when I went to an elder lawyer to find out that there are ways to make my mom qualify for help. I strongly urge you to do so if you haven't already. Even a little bit of help/relief is better than nothing at all.
Religion has done so much damage to so many people. This person threatening you is disoriented.
I went to church and learned that it does not matter what day you choose to rest.
I also learned that the most important thing about God and religion is that they're supposed to be set up to help people in need.
For someone to be threatening you is wildly abusive and to not be offering any help or directing you to any source of help is being hypocritical.