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?
Tell people to take a hike. People have no clue what your life is like and they have zero basis for trying to tell you how to care for your sister and that little bit of self care you're able to fit into the daily routine.
Simply put up your hand and tell them to stop, as soon as the launch into their baseless tirades. Or, ask them to write down their 'suggestions' and drop it in the mail, you get to reading it when you have time. Hand up the phone, block their numbers, walk away.
Pls find some support nearby for caregivers and allow yourself the grace of developing some relationships with others who actually understand your very difficult situation.
Ultimately, if completely unable to untangle the finances with one more very thorough review, incl possible downsizing, you have to start cutting these toxic ppl out of your life. God knows your plate is heaping as it is.
Walk away from these ppl, they can kick rocks.
Have you spoken to Medicaid about your sister entering Longterm care with them paying. This is too much for you.
Try placing small bowls if vinegar around, out of sister's reach. It may help with the smell.
She qualifies for Medicaid. Maybe not Medicare if she never worked or married and had a spouse who did.
If she's not on Medicaid it's because there's either money set up for her that can be drawn on or she isn't a legal American citizen. Some states actually let illegal residents go on their Medicaid program, which of course they should not but do.
Response #1:
Shut the hell up. I don't need your suggestions and or your peanut-gallery comments.
Response #2:
Don't tell me. Show me. If you can do a better job then I'm doing then please, be my guest. Go ahead you take over. If not, shut the hell up.
Try these out. I think you'll like them. Also a little FYI. Your sister is not a minor. You would not be responsible to pay for her care if you put her in facility care. If she is disabled and does not qualify for Medicare then she is on Medicaid and probably SSI disability.
Medicaid pays for residential care.
What you're describing isn't unusual, and you have to realize that you're playing a long game. If it's making you sick, like increasing your depression and anxiety to the point where you're not taking care of yourself, you may need to make it a short game as far as they're concerned. I gather you've already started that. Would it be possible to cut these toxic folks out of your life completely and replace them with a group of people who understand what you're facing and will provide wholehearted support? An Alzheimer's support group near you might be what you need. Good luck, and I hope you find a solution that will make you feel better.
What happens if you die or get sick? You may have money that would pay for her care if you died via an inheritance but eventually that would run out then what would happen to your sister?
caring for my parents. I have learned to just say "That's great! You can take that on!". Nothing ever happens and I just shred the paperwork. It is not my job to jump up and complete every request. I think a lot of absent sibling suggestions come from guilt and their way of relief is to stir up trouble with some new senior service that will restore parents to their former glory. There are not a lot of family I speak to anymore. At first it was I was absolutely crushed but not so much anymore. I am starting to enjoy my new life free from crippling co-dependent family relationships. When my parents ask about them I just change the subject.
You might want to contact APS and the Alzheimer's/Dementia associations in your community. Maybe a eldercare attorney?
Good Luck! Put yourself in the equation! Take care of yourself!
I wouldn't want to live in a vomit/urine/poop smelling house either
thanks for the suggestions, which I find helpful.
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.
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.
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.
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?
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.
“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.
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….
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.
"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.
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.