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?
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.
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.
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.
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.
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.
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.
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 ..
Caregiving can be very isolating. But it’s especially galling when those buttinskis have no appreciation for you taking the job out of their hands. Unhelpful siblings seem to be an important issue for caregivers. Can you join a caregivers group online? Something to think about.
"I thank you for your concern but I have a system that works for me."
"If you would like to help out could you come by at 1:00 on Wednesday I would love to get to the store and I could use someone to sit with "Betty" while I am gone, she would love some company"
"If you would like to help out there are a few things that I need from the store would you mind picking up a gallon of milk, 2 dozen eggs and the bag of chocolate chips that is on sale"
If these are phone calls...then it is...
"Gee I'm sorry but the timer on the oven is going off, I need to get the cookies out, thanks for calling" HANG UP.
Don't answer let it go to voice mail.
Email...don't respond delete.
Redirect the conversation or walk away with a smile and something like, " good to see you" or some other neutral statement.
I hope that you have a competent counselor, faith based or not, for your own grief and mental health support.
And, I am sure that you have already considered and put things in place for your sister's care should anything happen that you cannot continue as the PCG; at this rate, she certainly could outlive you.
However for you, I would see if you can find an agency or church that can lend you an empathetic ear for a few hours each week. It is just to sit with you or call you up so that you can let off some steam.
These people have no idea how much energy they suck from you.
From a different perspective, are there safe topics to talk to you about? Maybe you can move the conversations to those topics before these people start their unsolicited advice.
Also, don’t expect people to listen to your woes without offering their version of solutions.
The trick is to control the conversations….like you don’t already have enough to do….
“Thanks I’ll give that some thought”
”This is what works for me”
For your sister;
”Your right it sounds like I would have enjoyed that party, if only I had someone to look after Sis”
”I wish I had some help so I could enjoy some of those things”
”I wish I had the ability to take the time to enjoy myself (my retirement) the way you can”
”If I hadn’t moved away I might get invited to parties by friends too”
Again I know it’s hard in the moment to remember to let the comments roll or answer them by putting them in the right place but try to give yourself credit for the giving, loving, responsible, knowledgeable and special person you are. Don’t isolate yourself by cutting people out of your life, cut them back down to size instead and encourage the positive things about them that made them a part of your life to begin with. We all have pluses and minuses, it’s the balance in each relationship that’s important.
Now, knowing I’m doing the same annoying thing and that you have probably already thought of this I’m going to say one thing about possibilities. Since you have recently moved cross country have you looked into Medicaid (not Medicare) for your sister in the new state? Requirements can be very different state to state and even when one doesn’t qualify there are often programs for people who almost meet the requirements but don’t, again differences state to state but worth a little investigating. If the problem is intermingled finances maybe you can change that for applying purposes and wait a year or five to apply.
Hard much of the time but my brother is able to laugh most of the time at our moms frustrations (when she is being frustrating to him) and it reminds me to do the same, somehow it keeps the mood lighter for both my mom and us so I find myself less frustrated than I have been in the past a chunk of the time. Don’t get me wrong I still loose it sometimes or scream when I’m out of earshot but finding the humor in people thinking they know better or making a ridiculous suggestion even if you don’t laugh out loud just internally helps me deal a lot.
If you are financially able, perhaps find a placement for your sister, or full time live in help so you can have relief yourself.
All the best; you don't need advice, you need real friends, real support.
Join a caregiver support group. Many are online…it really helps. Venting helps, listening to others with similar issues helps, and since they been through stuff, there’s usually good advice.
You already know the advice givers don’t make any effort to help you. I’d say the next time someone starts in, just look them in the eye and say “I do need help…where could you jump in - cooking or cleaning? Maybe going with to Drs appts or running errands? ” Doing that once or twice will probably eliminate them giving advice.
As for not cleaning vomit etc on the sabbath, I can’t even wrap my head around that. You can’t spend the day in filth or stench.
You may want to deal with your other sister on a very limited basis. If she shows up or asks to see you, just say “we’ve had a major accident over here and you will not do well with the current state. I’ll get back to you later.” That should put her off. Say it every time she calls. If she says why can’t she see you, just say if she comes to help out fine, otherwise you just don’t have the time.
A support group of experienced caregivers can give you what you need. I belong to 3 groups! They are volunteer organizations that may be able to give you some time to yourself. They can spend time with your sister (most volunteers won’t clean or do big stuff). Perhaps hiring someone 4-5 hrs per wk will take the edge of cleaning. Check cost in your area.
Or say point blank to the advice givers, please take this rag and clean up what’s over in the corner, while I give my sister a bath. I guarantee they’ll either run or help. What’s the worst that can happen?
Exactly what you mentioned mid-way through I was thinking why don't they just roll up their sleeves and pitch in.
You can't leave any type of urine, upchuck to put it politely, you have to keep up with everything. The stench would be unbelievable. There are no days off when someone vomits, etc. That would be the worse thing you could do. The laundry needs to be kept up with as well.
No one wants pity they want an extra pair of hands, services, gift cards, etc.
In all honesty I don't see how you can keep up with this pace solo. Is there any type of day respite programs in the area that offer transportation? You need a break.
If you are sitting in front of them you could have some fun with it. Like when they are telling you the obvious, start staring into space and drooling, then tell them something like "jeeze!!!"""! I wish I would have thunk of that. You must be edjamukated real well. Can you show me how to do that there thingamajig you just said??? Huhuhu?" Maybe, just maybe they will get how stupid they are treating you.
Or you could have a list of things that they could do, if they really want to help.
Finding a way to not let others stupidity and careless hearts adversely affect you is the only solution. Isolating yourself will not help you and your sister doesn't know the difference.
I would encourage you to NOT let her go to the bathroom alone after eating anything. Long held habits die the hardest with dementia, so she needs you to be the tough guy that is stopping her long practiced self harm. I, personally, would find that battle easier then cleaning up her vomit all the time.
https://www.agingcare.com/questions/alzheimers-with-bulimia-anyone-have-ideas-on-dealing-with-these-475654.htm?orderby=recent
I think to accuse your siblings of having 'picture perfect lives' is to begrudge them THEIR lives because your life is so consumed with the 24/7 care of your sister. That she doesn't qualify for Medicare doesn't necessarily mean that YOU have to devote 24/7 to her care and management. You say you have enough money to last the rest of your combined lives, if you spend wisely, and I would consider you spending some money on in home caregivers to give YOU respite 'money well spent.' Or spending money on adult daycare for your sister to give you back your sanity which is hanging on by a thread.
To begrudge others their lives b/c you have an unfavorable one begs that you rethink that life now. Others who offer you suggestions on caregiving may be genuinely trying to help you, seeing how bogged down you are, wanting to see you experience some joy in your life. Do you honestly feel they are trying to upset you or anger you with their ideas? If so, block them on your phone or refuse their calls. If you do wind up taking a call or a visit from someone who offers you an unsolicited or insensitive remark, try telling them how you feel about that remark or better yet, ask them for what you NEED from them. Until they tell you NO to your face that they will not help you, you don't know for a fact that they are unwilling. And if the answer to your plea truly is NO, then find help elsewhere, by paying for it, so you're not asking for 'freebies' from anyone, feeling you 'owe' them for any favors.
As far as a person telling you that you'll "rot in hell for cleaning up vomit and poop on the sabbath, like every other day", I'd cut that person off at the pass. Block them on your phone and out of your life completely. You need that kind of nonsense in your life like you need a hole in the head, fgs. I had a cousin who drove me crazy with BS when I was caring for my parents, so I wouldn't take her calls at all during the heyday of my stress. If I wound up talking to her and she aggravated me, I'd wind up yelling at her & giving her an earful, truthfully. Hey, you want to call me with BS, then deal with the consequences g/f.
Realize that you're in a very vulnerable position here where you DO need help, with or w/o "Medicare" kicking in to insure your sister. Figure out how to ease your burden a bit and find some joy in your life before the stress of all this kills you. Then what happens to your sister? Then Medicaid kicks in and social services places her in a Skilled Nursing Facility, in reality. I'd hate to see you become a statistic :(
Wishing you the best of luck setting down boundaries with the people in your life offering you useless suggestions on how to better care for your sister.