I’m the daughter in law some of you are going to hate. The one who has the freedom to travel and go as she pleases within limits. Meanwhile, my PIL are living in another state battling cancer. I’m the one you despise since your up day and night caring for your elderly parent while I’m at home resting and taking care of my children. I’m the one who lives states away and only visit once or twice a year. I’m the one who wouldn’t dare agree with hubby quitting his job (not at his age), and spending all his retirement 💵 on his parents elderly care just so we can later demand and burden our children by starting the cycle all over again.
I’m so sorry this is happening to soo many families and it angers me that many parents didn’t plan for their senior care and living arrangements. It’s not fair despite the unconditional love.
That being said, for those of you that are caregivers to your parents, what type of assistance would be helpful?
Basically, What can “I” do to alleviate some of the stresses and resentment towards distant family members and siblings?
~Sincerely someone on the opposite side 💐
With that said it would be helpful if they could spend some time helping out but for some it will never be enough until their sibling has given up as much as they have. If you need help, ask. That is the first step.
The truth is, as you said, no one is hog-tied and forced into this, me included. I should probably call my kids, disregarding the fact that they have their own lives, and maybe guilt them into coming here to learn how to wipe Dad’s behind, roll him over in bed and wrestle the soaked and dripping sheets out from under him. Or, I should put my feelings of guilt aside and if we should qualify for the Medicaid Waiver I’ve applied for, put him in LTC facility. I’d have to “get rid of” my beloved dog, sell our home at a loss and find a tiny apartment. My husband would be so miserable in a facility he’d be dead within a year and I would blame myself for as long as I survived him. So, I know no human being is forcing me to do this, nothing is but circumstances. This scenario, if our finances continue to plummet, is a real possibility.
No, no one is forcing me to take on my husband’s care but myself, my love for him and my gratitude to him for taking care of ME for 44 years.
I haven't yet had a chance to read through all the responses yet, so others may have already said any/all combination of these:
1) You are NOT among those remote non-care-givers that are despised (at least not here, can't speak for whoever IS providing the care-giving for your PIL!) The ones who really get the goat are those who rarely call or visit, NEVER offer to help in any way (respite or $), criticize whatever the carer is doing, complain about their 'inheritance' being spent, basically clueless, absent and non-helpful or even worse detrimental. Clearly you want to offer some kind of assistance. That is a start and a breath of fresh air here!
2) Of the posts I did read, there were a lot of good suggestions (and probably more I have not gotten to yet), so you can think about all these and consider what you might be able to do. BEFORE just doing any of these though, ASK for what the carers might want or need for assistance and provide any/all of those that you can from a distance. Just sending items without asking may just add to the clutter and not provide much help (clearly thoughtful, but not what is needed!)
3) Be there for them (phone, email, text) when they need to vent. Understand if they repeat themselves as this kind of caring and the fallout tends to be really repetitive. If possible, talk regularly with the PIL as well, just to let them know you are both thinking of them and care about them! Have the kids make pictures to mail to them!
4) If money is tight, offering payments to help out would be better than telling them to spend whatever they/mom/pop have now on the care/needs or changing any will to give the carers a larger share. If they eventually have to go to AL, especially on Medicaid, even if they just stay at home a live a really long time with more needs, more than likely there will be no inheritance (Medicaid requires spend down), so the carers would get shafted in the end! Plus, they most likely could use some monetary assistance NOW! The care-givers, unless they have a bonafide documented arrangement, have to beware taking any compensation from PIL. Any payments they receive from PIL will count against the PIL if Medicaid is needed.
5) Since you said you "visit once or twice a year", plan ahead, coordinate with care-givers and spend the first day or so doing all the tasks with their oversight (if needed) and then let them go enjoy the rest of the week off! Just letting them get away once or twice a year would be like us having a vacation. If they need help to pay for a hotel or someplace to stay, offer to pay for that as well (keeping it within your own means of course.)
6) Someone's suggestion about offering to help clear out, clean up (and fix things) would make my DAY! Many years of collecting "stuff", letting intense cleaning go and letting things degrade can end up being a real bear to handle after the fact. So during that "visit", see what needs to be done and DO IT! Not much of a vacation for you, but better to spend a few days of that visit doing these things than waiting and spending many months on it!
Summary: be present, be willing, offer to do whatever you can from a distance, keep in regular contact to check on everyone (conditions for all can change quickly, decisions may need to be made about how they are cared for, needs can change), be a shoulder to cry on
I know what it is like to have siblings, local and not, who really have not done their "share". Not totally distant, but not of much help either. None of us actually cared for mom, she was okay until early 90s dementia set in, and is now in MC (not quite 2 years now). I handle all the financials, paperwork, processing forms for financials, managing the trust fund and coordinate everything else (and I do mean EVERYTHING!) It would be difficult to "share" the financials, but I spend so much time every month on "handling" things and spent so many days over a year and a half driving 1.5 hours to spend time clearing stuff out and cleaning her condo so we can sell it (at least twice/month, it's almost like working: 3 hr round trip, 4-7 hours packing up, cleaning, transporting or tossing stuff.) Non-local brother came up a couple of times to help, and although I appreciated it, it really was not enough and he is not a pleasant person underneath. After his last visit and physical abuse, I'm done with him! HE was always telling me to take money from the trust to pay me for what I do, but I say no, because there is no wording in it for paying any of us. Also, we do not know how long she will live, so we need to preserve all that we can to cover her MC. I will not do take anything for what I do - if money is spent to fix something, yet, I get reimbursed from the trust fund (I am "ok" financially, but not enough to spend my money on her condo!) The other brother is still working, but he is so frustrating because he often does not respond to requests/queries (text, email, phone calls can all go unanswered for weeks.) He did step up at the very end and help finish it up (after my last visit I said I am DONE! I have physical limitations, cannot move heavy items and spent hours cleaning the appliances and handwashing the floor at the very end, augh!), but over the past year and a half? Nope. Very little time spent there.
Siblings and other family members come in all shapes and sizes. We cannot change those who do not help or step up in any way (or actually get in the way and make things worse!) Having someone like you who is willing to offer assistance from a distance - can I trade one of my brothers for your hubby, then you can be mom's DIL and offer to help!?!?!?! :-) I'd take you!
Please please please persist. I can virtually guarantee that the caregiver needs a lot, but may not even know where to start.
We are so used to getting little or nothing and/or one-time things that we may choose for you to give to the person we're caring for, simply because we are programmed for that. Then I would likely say to do as requested, but tell the caregiver that you want to do things for them too. Say you have been thinking that you haven't contributed (much) and intend to change that. You can add that you've researched and have ideas and are committed to help going forward.
I had those feelings when my sister said she would come to help for 5 days. Not enough time for me to visit my SO out of state, but some help with stuff around the house and entertain our mom.
Now I should include here that my sister (my brother isn't even in contact with us anymore) hasn't just been unhelpful, she's said and done extremely unkind things to me before. (I'm not saying that you have done those kinds of things, I am just using that as an example to explain some of the things I mentioned above.) So even though she texted me that she was coming to help, (she didn't ask when or provide any other information) I was genuinely scared. I didn't know what to expect, what she would or wouldn't do or even what to request. And she's pretty much gone back to her former ways of being. She has more resources than the rest of us put together but everything is still about her and her family.
It may or may not take time for the caregiver to even open up to the idea that someone cares. And then the next thought would be what should they should ask for because they don't know what is too much and/or your capabilities, etc. That's why I suggested that you have and explain ideas of things you are willing to do so that you can give the caregiver parameters as to what they can expect from you and what is reasonable in your eyes.
Then make sure you follow through on all of it, and continue on.
1000000%
Checking in on them. Caring about how they are doing. Being supportive if they need to vent or maybe referring them to forums that you know might be helpful
Sending them some funds to help if they are not able to work because they are caring for someone. Or sending them things they need.
Asking them if they need any help or downtime where you could maybe see if you could hire someone to go in and give them some time off even if only for a few hours a week.
Maybe even getting a cleaning lady for them if they are overwhelmed and that would mean one less thing they have to worry about.
Maybe putting some time aside (a week or several days) to visit and actually give them a break if you could. I mean if they are there 24/7 then getting out for me time can be a challenge. So even a short visit where you give them a few days or hours on those days would maybe be a huge gift.
Best of all, why not actually pick up the phone or email/text them and say you know they are doing so much and that while you can't do anything near as much as they are, you want to help in some way. What sort of things would be appreciated. Ask for a list of things that might help them and then pick a few from the list and do those. If my brother did anything like that for me I wouldn't feel like he's such a selfish jerk. Instead he seems to see me as the free nurse slave while counting on all the money he will inherit because we aren't using assets to put her in a nursing home.
If I were asking this question, I would think that my answer seems overly dramatic, especially since it's in addition to many others. If you would, I ask that you please kindly understand that I don't mean to be rude in any way, but the opportunity to explain this is rare or non-existent.
To better help a caregiver would likely require sacrificing things you have been unwilling to as of yet. Please also understand that it isn't an all or nothing thing. Perhaps you can adjust some of your time, some of your money and some of your social endeavors.
I've actually been thinking about this over the last several days, so I'm surprised to see your question. I have so much more to say but I'd prefer to take a bit of time to better formulate the remainder of my input, but I wish to start now.
In a small nutshell, give them time and money, an apology and lots of kindness.
No matter what it looks like from the outside, and regardless of the level of caregiving needed, know that for the caregiver this is many levels of absolute destruction emotionally, physically and financially.
Imagine you've lost your business, your savings, your mental health and almost lost your significant other, while the others who have far more resources, have basically abandoned you except for when they criticize you and tell you about their travels, etc., while you can't leave, or do much else.
My well-being and likely my future are in complete ruins. Believe it or not--and I would NOT have believed it from someone else--I am in no way exaggerating. I would never have understood this before I did it.
Thank you for asking this question. I hope to add to this. Additionally, if you have questions, please ask them to me. I'm a former tutor and am practiced in ways of patiently--and believe it or not, kindly--explaining things in various levels of detail.
Best wishes as you go forth with your learning and possible changes!!
Props and kudos to your relatives who sound like decent caring people.
Have you told them that?
I think in the 8 years of taking complete care of my elderly mother I have never heard that from my "distant" brother who lives under 3 miles away. You would think he lived across the continent. I have sacrificed quite a lot, as I am sure your relatives have. A little appreciation or validation from him would mean a lot.
I understand some people are busy or have families or jobs or whatever the excuse is- but really., who doesn't???
You can show a little concern towards their own welfare for starters. Realize that maybe they don't WANT to be in the situation they are now in but that it sometimes is the only choice they have because someone else in family thinks it shouldn't be their problem.
Some tangible things:
*Call and actually listen to what they have to say.
*Offer to help pay for an ongoing sitter to come maybe once or twice a week so they can have an actual break/date night etc.-
*Maybe a meal delivery or grocery delivery service a couple of days a week? What about while you are doing all of that traveling you maybe take a weekend to come and stay to relieve them. Too much? well how about ask them to make a list of things you could do from where you are. Some kind of paper work research or planning etc. and let them know that you would honestly like to help in some way from where you are and that you would like them to think about it for a couple of days and to tell you what.
This is life. Its not a matter of "Oh I'm just not good at that, or I'm just too busy. Its a worldwide concern. Most don't plan on getting sick or having Alzheimer, Cancer and diseases. No one really expects or knows when or what is going to happen or for that matter what age. You can get mad at poor planning all you want but Karma has a funny way of changing everything.
Step in, honestly listen to them, and I think you will be surprised that the resentment will probably start to disappear
I've worked on funeral plans and researched "next steps," passing along pertinent information. If you truly want to help and just don't want to compromise your current lifestyle, talk to your siblings to see what would be most helpful for them!
Ask those
An extra ear, a kind word, and a sincere heart helps the most.
Come back and give us your thoughts on what may work for you and SIL. Obviously this is rather sore subject you’ve broached and I give you props for posting. I hope we can help you and SIL, and most importantly, the elderly parents get through this.
Sounds like you are not even offering phone support or keeping in touch on a regular basis. That's probably why you feel the hate directed at you. Picking up a phone is the least you can do during this crisis.
My brother has always been an azz hole of a brother. Even worse now that Mom is in her final stages he is an azz hole of a son. As an in law you could at least call as it sounds like your husband (the son right?) is in the azz hole club. Doesn't he even want to know how his parents are doing? Shame on him. There has to be a special place waiting to reward him.
If you truly want to help ask the Caregiver(your SIL right?) what she needs. As others have suggested a phone call of support & honesty (including your husbands short comings) & empathy would go a long way. It's the elephant in the room.
The general consensus here is to "show up" & go from there. Caregivers have so many balls in the air it's difficult sometimes to determine what help is needed that can be easily accomplished by someone who has not bothered to keep in touch rendering them clueless.
You need to physically be there to give the CG a break & not just an afternoon. Believe me when I say to you that YOU will NEVER regret reaching out to the CG & doing what you can. It is the HONORABLE thing to do. When your parent in law's are gone you won't feel the overwhelming pain & guilt that your husband will have to live with the rest of his life. I'm guessing he feels it already.
Be the Matriarch that I am sensing you want to be. One can hope that hubby will follow your lead and "man up." WARNING; BRUTAL HONESTY TO FOLLOW.
What if you get sick? Will hubby be there for you? I doubt my brother would even be there for his child let alone his SO. I bet he'd call me.......and I already know what my reply will be.
When you call SIL start with an apology. I am guessing all this time you were hoping ....maybe even pleading with hubby to step up. So much time has passed now you feel your call will be met with disdain. No doubt it will.....thus the apology. KEEP trying & let her do the talking......this isn't about you. It may take time to gain her trust again.
Good luck......I feel your heart is in the right place........NOW take action before it's too late.
I hope your family can work something out so you don't feel guilty that you are far away and not helping out as much. It is okay. I just suggest you and your husband do your fair share to make this equitable for all the siblings.
with that said.... it’s not your fault that you live far away, but it sounds as if you want to help in some way, which is good!
i agree with other posters- “time” is number one. If there’s ANY way you could go and provide a single day, half day, or an hour of respite care... that’s more helpful than anything. Knowing that a family member is there with a loved one is a huge relief.
My SIL has not contacted me at all regarding the care of dad. She doesn’t help or offer support to my brother either. Although she works (as I do) she has no children and is free to vacation and socialize carefree. I understand that’s her choice. I just hope that when the time comes for her parents to need attention and care, she then realizes that an occasional “check in” with a primary caregiver in the midst of going from crisis to crisis is necessary.
I fully believe that what you give, you will get in return.
Just care enough to call to find out how things are going. Ask if there is anything you can do even though you are states away. Always pray for them - all of them - caregivers need prayers too. Send cards to them - something they can hold and look at all the time. Not the cheap cards - spring for a really nice card and try to send one every week if possible. Way cheaper than having to visit. And they look really nice lined up on a bureau or chest of drawers. Or a bedside table if they have one.
Have the local florist deliver an inexpensive bouquet sometime - just something so they know you remember them. Show that you care.
Choices made by different people in different areas. Sometimes on this forum when a poster is railing against siblings who do nothing, it is pointed out that those siblings didn't agree with the choice made by the caregiving sibling to keep the parent at home, and that maybe the parent DOES belong in a facility.
Just as siblings can choose to not be involved, so could the caregiver have chosen to not be involved. Some posters claim they were forced to be the 24/7 caregivers, others think their mother or father could never go to a facility, that their parent(s) deserve home care, etc. I am always wondering how these "wonderful" parents could raise only one child who wants to be the caregiver. Regardless, it's a choice, and the caregivers have chosen to encumber their lives with the elder(s) (in the huge majority of cases, that is).
Choices, choices. I am not in nearly the caregiving misery that many are in here, but even so, I resent my brothers for not being expected to be our mother's puppet/marionette chauffeur. Yes, I am the only local one, but what I most resent is my mother's expectation that my time is worthless and I "owe" her. Yet her darling boys are "so busy."
Two of my brothers express appreciation for what I do, but, quite frankly, that doesn't mean much to me. I would have liked a check -- talk is cheap, and money talks more.The other brother simply laughs when I tell him he's so lucky that my mother has bestowed sonhood sainthood on him and he does nothing at all...hardly ever even visits.
I have told them that when my mother's expectations get to be too much (and she's too nasty when I enforce boundaries), that I'm walking away. And when/if she ever goes to a facility (she should be in AL now but refuses), that I won't be the contact person, I won't be her taxi and I won't be the one she calls to complain. That is a choice I've already made.
I, too, had siblings out of town who never offered to help even before mom got bad and could no longer drive.
One brother decided to move to our town 3 months ago and asked me if he could move into mom’s house. I said “yes” with the stipulation he take mom. I gave him 3 months to get settled and find a job. Then he would start paying his share of the bills. I have been pissed at him for years, but I didn’t realize what a dysfunctional, needy, drama queen low life he really is.
He isn’t really trying to get a job - he has spent the past 35 years doing floral design. He doesn’t have any conscious about living off his mom. When the 3 months was up, he said he didn’t have the money. He even went so far as to pawn lawn equipment that belonged to my husband and me. He won’t even mow the yard - that is about an acre - citing health issues. We won’t let him touch our riding mower. Funny thing is, before I got married 2 years ago, I was doing all the yard work all by myself and mowed with a self-propelled mower.
My brother has taken handouts all his life and has been treated by my mother like he invented sainthood. She practically ignored the fact that she had another son. Well, that son died recently and left her as primary beneficiary. He wasn’t even dead yet and my other brother started talking about how it would only be fair if we split it 3 ways. That’s all he talks about now. He doesn’t realize he doesn’t have claim to that money.
Luckily, I have POA over mom’s affairs and continue to pay her bills. I put a certain amount of money in my brother’s account each week for. groceries and mom’s prescriptions. Otherwise, he’s not getting a dime from me or mom.
I’m afraid he may try and sweet talk mom out of some of the money, but that’s not going to happen. She has no access to that money. If it wasn’t for my mother, he would be kicked out today.
It’s sad that caregiving circumstances tear families apart. But it is what it is and the rest if us have to live with it.
Thats the type of people this poster is talking about. Those that could, and should have known better..didn't plan for this stage of their life
He always thought his kids would take care of him. However, if any of us let him live with us, we would end up in jail for elder abuse. He is argumentative, hostile, says he is right 99.9% of the time, a hoarder, and now has vascular dementia.
We just got him forced into a nursing home. Through legal action, guardianship.
Remarkably we all still care, because we are a wonderful forgiving group of “war wounded” adult children.
We visit, call, take him things.
We we also sleep better at night and our hearts don’t skip a beat when a white car goes past our house, or when the phone rings.
No one has to take on a parent living with them, just because they refuse other options. If they have dementia, you have no idea what you might be in for.
And if if you do take it on, don’t expect all your siblings to take it on with you.
It would It would have been an absolute godsend if someone had said "hey I got this. Get out of here." I would have been so grateful and would have returned somewhat renewed to carry on with the job.
I also would have felt that somebody cared about me and loved me instead of feeling alone, unloved, and invisible.
Straight on ASK the PCG what is needed. Then as best you can, make that happen.
My SIL will routinely "gift" my mother the most useless crap--decorations for the holidays and scented candles and mother will be "thankful" but she has absolutely no room for anything in her place. "stuff" that is not usuable--such as what I mentioned, may be thoughtful, but is rarely helpful.
What she NEEDS is for someone to clear her grimy apartment,wash down the windows, powerwash the birdcage, take her to lunch...all "hands on" things.
Maybe your PCG needs money, couldn't hurt to ask. We have given YB a lot of money over the years as he has taken the burden of mothers' care on himself and pretty much refuses help. My sister offered to pay for 3 days a week in home aide--mother wanted it, brother wouldn't let strangers in.
Get to where the folks are and give the PCG a respite. (You'll come out a different person, I promise.)
I admire that you are aware that you're on the "other side" of this CG dynamic. And that you want to help.
Send gift cards, greeting cards monthly just to say thank you. Let them know how much you appreciate them giving so much time and energy.
Offer respite time, definitely, give a week away while you provide the care. Yes you will have to give up one of your vacations, you can sacrifice something too. Once you do that, you will have a much better understanding of how difficult providing care is.
Get creative, send a care package that has something fun for everyone and individually, home baked bread, cookies, cards (something to post on the fridge) cute magnets to hold the stuff or create a board that can be hung up and then the little love notes can be attached. Caregiving is isolating, so knowing that someone is thinking about you and how you are doing makes it a little less lonely.
Depending on the age of your children you could include their friends and send 30 homemade cards, pictures or hand turkeys, you get the idea.
If you know the caregiver send a thank you note with some flowers and a gift card for something that means a great deal to them.
Last but not least, be emotionally available to the caregiver, let them lean on you, be understanding and compassionate, DO NOT JUDGE, even if you cringe because of what they say, remember they are only venting so they don't blow.
Thank you for wanting to help in the best way you can.