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So my father in law was diagnosed with Alzheimer’s and a month later my mother in law passed away, leaving me as his nearly sole caregiver. I am told how much I am appreciated however is it wrong to think that I should occasionally be pampered?
I know I am not alone in this situation that there are many people who do this same thing. But this is my 24/7. I watch him on cameras when I am not here (we have cameras in every room) this ensures he can live alone except as he heals for the past 8 weeks I have lived with him. I get him up in the morning do his personal hygiene clean and change foley bags and site change pull ups clean up after accidents shower him do his meds take him to dr appointments take him on outings do his house chores cook his meals literally everything. And of course I am the one he takes his anger out on. I get that. His daughter comes out sometimes once a month but has had about 6 months between visits no kids at home and divorced and lives 30 miles away. Yep tons of help there. Didn’t even make it out for Christmas. His siblings tell me how grateful they are for all I do. As does my husband and my kids. But is it really unreasonable to think that maybe someone would show me? I don’t want to sound needy or unreasonable but sometimes I feel a bit used and I don’t like that feeling. And since living in for the past 8 weeks I am really beginning to have some emotional issues now what? Maybe just saying it will help. Don’t feel real comfortable saying it out loud hear. No pity party really needed I don’t think it helps anything. Thanks for listening

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BACK OFF.
Stop doing all you do.
And I have to ask about part of your post...
He can live alone EXCEPT for the past 8 weeks as he heals....
What happened 8 or 9 weeks ago that he is healing?
Personal opinion is that someone with dementia that needs help with
Cleaning up after accidents
Personal hygiene
changing foley bags
Showering
Cooking meals
Doing household chores
Should not be living alone. (well I guess he really is not living alone since to do all that you must be there 99.9% of the time)
If you hired someone NO caregiver would legally be allowed to care for someone 24/7.
Your FIL can pay to have caregivers some in and do what you have been doing.
What you and the rest of the family are doing is propping him up making believe that he can live alone.
Your priority is and should be your immediate family your kids, yourself and your husband.
I have to ask why is your husband, the son not the one staying with his dad for the past 8 weeks doing what you have been doing. This should be his responsibility.
Or
Why did your FIL not go to rehab if he was not able to care for himself?

This situation is not going to get better.
With dementia there is a decline.
At what point are you going to permanently move out of your house to care for your FIL?

One of the things that caregivers need to learn are BOUNDARIES. Set them and stick to them.

Is FIL a Veteran? If so contact your local Veterans Assistance Commission and let them help determine what benefits he is entitled to.
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People quit jobs they are unhappy with after less than 8 years. Just because you are caring for a family member doesn't mean you have to do it till the " bitter end." If I were you, I would put in my resignation!
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Hi I have done caregiving for mom 13months. I commend you for sacrificing yourself but Yes you need help request it the older son or daughter should be in charge and you help once in awhile but you have done your time and above you need rest and to be pamperd like a princess..Blessings to you. Talk to them and stand your ground..Believe me I got exhausted helping mom 4months into it 24/7 .. I talked to sibs finally I got action..We all have to live our lives to..((You take care of yourself You are a beautiful person))
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happyharry: You need to resign from this 'position.' Eight years is far too long. You are done/finis.
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Put in your 2 week notice to this family TODAY. So effective 1/20/22, you no longer work as a personal slave for your father-in-law and you're free to pamper YOURSELF as a result! Your DH and the rest of his family should be ashamed of themselves *which I'm sure they aren't* for putting you in this position to begin with. I'll bet you aren't even getting paid a thin dime for doing a job that should be paying you 6 figures a year! And then we have to listen to the CandyApple's of the world lecturing us about killing ourselves on behalf of an ungrateful elder but that it's our 'duty' to do so and that "God Will make sure you will get your due diligence. 🙏🏽" Um, how about NOW? How about the fact that YOUR life NOW is being RUINED with all of this caregiving and getting no help at all from this man's own children?? She can tell you till the cows come home that you are a 'better person' for doing this, too. That and 3 bucks will buy you a cuppa Starbucks, for godsake.

Resign. Today.

You're not in need of a 'pity party'. You're in need of a wake up call that you're being taken advantage of in a HUGE way here. Put a stop to it at once.

"You" are NOT the 'only answer' to this man's needs! Not for one second! There are paid caregivers to come into his home. There are his own children to care for him. There are Memory Care ALFs he can move into tomorrow who have entire STAFFS of caregivers working in 24 hour SHIFTs to accomplish what you alone are trying to do. Yes, there are other alternatives available for your FIL.

Good luck!
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BurntCaregiver Jan 2022
I like it. Put in your two weeks notice.
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First of all, since YOU get the anger directed at you and you are doing it all, I would lay the law down at once to this man - and I would let the family know - that under NO circumstances will you allow or any longer accept this behavior. It stops now or you will totally remove yourself from a position of helping. Make that very clear so they understand. Second of all, let them know you are developing physical, etc. problems and it is beginning to affect you and your life and you are going to have to do something about it - in other words, they either start helping or he has to be placed (but don't expect help as you won't get it). Who has the POA and is in charge. Tell them you can't/won't do this any longer - you are burned out. Tell them you are taking some time off for you and to heal and to get a caretaker. And during the discussion, point out to them the value of what you have been doing. They may be just deaf, dumb and blind - and you are making it easy for them - but don't do it anymore. Your loyalty is to you.
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You need time alone and yes you deserve to be pampered.

If they do not want to then do it yourself. See if there is a bed and breakfast where you can go for a few days. Leave your phone off the whole time.

Maybe when you are not there they will appreciate you more.

As well, make a list of what needs to be done every day.

Then give them an option of they would prefer # 1 to come and help out every week
#2 if they would prefer to pay you for your services
# 3 if they would prefer to pay someone to do these tasks.
There is no option # 4.
I have finally put my foot down with my mom. I was doing all the work and got nothing to show for it but abuse. The rest of the family got money every month and did nothing.
That has changed now.

As well I make time for myself with daily walks in a nearby nature reserve with a Bible. You would be amazed how much stress dissapears after spending an hour with Jesus by a stream. Do not be afraid of letting it all out on Him. He can take it and He understands. Do not forget He had to deal with some real nutbars for disciples, had to deal with the establishment and His family mocked Him and disowned Him.

Gods peace be with you child.
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It’s truly, truly sad what ppl do for others just toss someone aside. It’s ok to live one’s life but plz ppl check in on ur parents ur love ones who birth u. It’s ok to live ur life but remember ur not going to be young and beautiful and full of life all ur lives. Trust and believe when ur day comes ur going to want someone like ur sister-in-law to assist u in life. I pray in my life time I would. It’s really hard to find good ppl. I do feel they feel it’s ur job so ur getting paid and they feel a since of comfort Bc ur family which is good. But ur a better person than they would ever be and ur just the daughter-in-life. I think if any person has a compassionate caregiver. They should be treated really really well. Especially if they don’t put in there all. I would treat the person that’s taking care of my love one. I would go all out. That’s just me. I would sometimes give gifts , a day off, a nice word, or we can all go out together. That’s how it should be. Don’t worry God got u. Just keep doing u and don’t look for approval. U may or may not get it. Remember u doing things Bc u care. Have a Blessed Life. God Will make sure you will get your due diligence. 🙏🏽
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You have been "filling the gap" for longer than necessary. It is time for a family conference about long term care of your father-in-law. Before your meeting, let all the family know that you can not continue caring for him as you have in the past. Let the family know how you are willing to help him - think how many days per week and how many hours per day. Ask each person to consider how he or she can contribute to his care. If there will not be enough helpers, then it is time to consider paid help or for him to move to a long term care facility.
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My advice is simple: STOP!
Contact his kids and let them know you did all you could as a live-in and have reached your saturation point. Leave emotions out of it and straight up let them know you cannot continue to meet all these needs and it's necessary to hire in-home care. Let them know you will take on the role of hiring someone (if you are willing) and you will let them know the costs. You can also assign time slots where they can monitor their father from their cell phones.
Any caretaker on this site will surely confirm that the more responsibilities you assume, the more you will end up expected to do. No one who has not physically done these things can truly know the time, effort, and emotional strain it takes-so do not expect the pampering you crave to come from these people. Instead, learn to LET GO and put the responsibility where it should be - off your shoulders and onto his kids. I know you are a caring person, and you should continue to be as much as you WANT to, but being a full time caretaker is not what role you should be assuming here.
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You have gone above and beyond and your family has taken advantage of your good nature and your ability to suck it up and carry on, likely because you are a very capable person who has a 'can do' nature; it's also a setup for becoming a martyr. Pampering? What you really need is for others to step up and take at least half of all the care of your FIL off of you so you get to have a life too; appreciative talk is 'nice' but it is not enough and a total copout on the part of your family. After 8 years it's time for a Family Meeting to make a plan for Each and Everyone to have a part in the care of your FIL. A fellow I dated years ago had a saying re 'I love you': he'd say, "Don't Tell me, Show me!" which is brilliant, no? Words are just words; lovingly but firmly let your family know it's time for them to SHOW their appreciation by working with you to care for FIL. Where did you get the idea that speaking up about your situation is 'needy'? Or having a 'pity party'? Your family may have gotten the impression you're Fine, and you let them go along with that assumption. Don't martyr yourself and then wonder why nobody notices your plight. Sign others up for parts of FIL's care; give everyone a 'wish list' of things you'd like to do/have for yourself. What would happen if you stopped Over-functioning? Find out. Change the Script! All the best.
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After 8 years (?) it should be clear by now your position is in all of this. In fact you already do KNOW your position, as you just told us in a very intelligent and thorough manner. However, at one point you say you are the caregiver for 8 YEARS and at another 8 WEEKS. I am assuming both are true? You are the primary arranger and giver of care in every manner but hands on for 8 years, and now for 8 weeks are the hands on caregiver and fearing that is going to go on permanently??? If I misunderstand, what I say doesn't pertain.
I would suggest that you get psychological help of a therapist now so that you can advocate finally for yourself and your own life. There really are only two choices, reclaim your life or continue in this sacrificial management of the care of another. You know that you will not be changing others nor their own lives and plans after 8 years experience.
After some therapy sessions you will know clearly in your own mind where you stand and what your choices are. Whether you chose then to continue in this care or in what limited manner you choose to continue, or whether you wish to step away from this care, direct or indirect will be more clear in your own mind.
Often the New Year is a time when we reassess where we are in our own lives, where we hope to be in future, and what we must do to change our lives. Change, to be frank, takes all the courage we have. It's hard to move out of habitual ways of "being" because even if they are awful, they are "known" and in that sense comfortable. The unknown is terrifying. People will be hurt and confused when you tell them you cannot go on. We tell people who we are by what we do, and they come to "expect it" of us, and become angry and terrified themselves when we tell them we can't go on. They lash out in any way, adding to all the trauma. It's hard. I wish you the best of luck. If you stay on as a direct caregiver it may be unlikely that position will change.
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You live with him for eight weeks? What happened to your place? Is this a situation where you need a place to live? You say his daugthter visited once a month but hasn't in 6 months. Very confusing. You say you feel a bit used. Really?

Keep a record of your emails/letters and theirs.
And in your next written communication mention all the work you do and how you greatly appreciate their words of appreciation, but that you can't any longer. You don't have to say why. If they ask tell them that you're getting ill doing what it takes a staff of people on a rotating schedule to do everything your doing and it's too much for you as they can imagine. Continue to say that in a (generous) 2 weeks they've got to figure something out.

You can't give them more time because then it seems as though you're not at the end of your rope. I found someone to help in two days when I had my rotator cuff surgery,

You'll also included in your written email or letter that to be helpful you're including a list of local Home aid as well as move-in assisted living homes. Include places near their neighborhood.

Contact a social worker at your hospital and ask them for referrals.

Or take a photo of yourself today, and every year on the same day, keep doing what you're doing, and watch the troll you'll become, and enjoy being a volunteer martyr. I'm telling you, there genuinely are people who for some deep needed reason absolutely get emotional satisfaction in being the savior. It is a real need.
My goodness…Sometimes I feel a bit used. Are you kidding me? You're waking up and getting healthy.

Remember you asked for no pity party.
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Welcome to the club, my friend. Having only been ay it for eight weeks, you haven't even gotten your sea legs yet.

You are not being unreasonable or acting needy and you are most certainly are being used. Believe me, the longer you stay as Alzheimer's FIL caregiver the being used feelings will increase by a thousand as the care needs increase with more responsibilities and demands from the family get heaped upon you. Just wait until they start offering advice on how you could be better doing your "job". That's next.
Don't count on a moment of help from the family. You have been made the Designated Caregiver and they know it. You are the care plan and will remain so indefinitely if you allow it to continue. The family will be very careful to make themselves unavailable. They don't want to get caught in the caregiving net and have to help out and trust me they won't get caught in it. You're the one caught in it.
It's only been eight weeks, so call a family meeting. Let everyone know that you will not be FIL's caregiver and another arrangement will have to be made. You will also have to move out of the residence. If you're there, you're the caregiver. So pack up and go.
Please don't let yourself become enslaved for years at a time like so many of us here.
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bundleofjoy Jan 2022
exactly.

please listen to burnt.

"The family will be very careful to make themselves unavailable."

"They don't want to get caught in the caregiving net and have to help out and trust me they won't get caught in it. You're the one caught in it."

"Please don't let yourself become enslaved for years at a time like so many of us here."
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What exactly is it you ate hoping relatives would do to "show" you their appreciation? They evidently express it by telling you you are appreciated. Are you wishing some of them would come take over for a while? That probably won't happen. They appreciate you for doing it so they don't have to.
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BurntCaregiver Jan 2022
RVAnnie,

There's a saying.

Don't tell me. Show me.

Anyone can be generous with praise and accolades then walk away.
How about if the family members all reach into their pockets and make the caregiving worth the poster's while?
Or the family can insist that the poster have week-ends off and they can offer to take the FIL to one of their houses to stay from Friday to Sunday.
Maybe they could help with housekeeping, errands, and taking the FIL to doctor's appointments?

These are the ways all caregivers consider actual helping out. Yet, these ways that I've named are extremely rare in any family caregiver's life.
The praise and accolades the caregiver gets means nothing and amounts to nothing. It doesn't last long either. The praise and accolades soon turn into friendly "advice" and that soon turns to harsh criticism.
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Good solution, tell the family you need time off- a vacation for a couple of weeks and that everyone in the family needs to take a week and rotate time taking care of him.
Let his daughter and family figure it out..... then you will be appreciated once they start taking turns giving you a break, they will for sure appreciate you then because they will all have had a turn and are participating.
You should never feel the way you do..... his family needs to help take turns- no excuses you tell them you can't do it full time anymore.
Believe me they will figure it out if you give them no choice!
I could understand better if he didn't have family members, but you should not have to do it alone.
There are also respite places that can step in and give everyone in the family a break as well that is what they are for.
Give them your notice that everyone is going to take turns and drag out the calendar and start asking who wants what week.....
You should not feel any guilt over this either..... families can take advantage of the situation if they know they don't have to help.
My saying is , "Don't let anyone steal your joy".
You deserve breaks so sign them up and take them..... Blessings.
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Why for 8 years have you allowed yourself to be used by not only this family but by your husband? I see no mention of husband helping at all. I would call an "Emergency" family meeting. Tell no one about it in advance. Then at the meeting, announce that you have health problems and are forced to step down. Mental health is just as important a physical health. Who's legally in charge of FIL? This family is using you. The worst part is you are allowing yourself to be used. You need to step back and make sure you speak with his dr to let him know as well. Then speak with a mental health counselor about why you let people run over you. You also need to evaluate how much support you got from your husband and either leave or start setting some rules. This can't be the only thing he used you for. No wonder no one helps you. You haven't demanded or even asked for it.
I will personally thank you for what you've done. Your an angel. FIL needs to be in MC or NH.
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Normal to feel this way at times, go pamper yourself. Most of the time we do this because its the right thing to do, because we care, because people need people and family needs family. Some can handle it and some cannot. Your not a doormat because your doing the right thing. Employ as much help along the way as possible and laugh as much as you can, don't take s*** seriously and take many breaks. This is a long hard road of crazy.
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I don't mean to be callous, but why do you do this? He's not your father and he has children! Don't get me wrong, because you love your husband you should help of course, that's marriage, but why are you doing it alone - and EVERYTHING at that? I would put a stop to it. This is honestly a discussion your husband and his siblings need to have pronto!

My MIL recently came to live with us. So far she can do some things on her own (like bathroom, but I help with her showers). My husband (her son) helps too, plus he works from home most of the time although he does travel for work so I help her more on those days. His sisters are also worthless. One lives in the same town and another in the same state. They do nothing to help, but call her on the phone. However, we have an understanding that if it changes and she needs more help than we can give, he would look for an alternative.
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Wow - you must be saving his family a ton of money. When it comes down to it, they will inherit and you will be worn down to a nub. Your emotional and health issues are just starting and will get worse. It’s sounds like you must be doing this out of love for you FIL? But it’s time to make a change. He needs nursing home level of care. And you need to step away and see the bigger picture. No one is coming to help you so you must help yourself.
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BurntCaregiver Jan 2022
Exactly! Why the hell should the poster (or anyone else for that matter) grind themselves into the ground caregiving to preserve some inheritance for other people?
You are right and it does sound like the FIL needs nursing home care. The poster is only eight weeks in. They shoudl start searching out placement for him now.
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Tell the family you are worn down and have to make some decisions going forward. You can't be the only one giving that level of care. Your first decision is you can't be the only one giving this much time anymore. You've done your best and now you need help..so..what are their thoughts on care. Taking "shifts" or AL or NH if he doesn't qualify for AL with his personal hygiene needs. Its got to be one of the other. Since this is father-in-law, I find it interesting you don't mention your spouse. Why is that. Is the spouse around? If so, how much help are you getting? What is his attitude about your situation and will he be supportive of sharing the load with family. Also missing, do all the other family members have full time jobs and they don't see what you do as a difficult job? Do they see this as YOUR job without the financial reward? There is just too much missing to make suggestions beyond sharing the care, or a NH. But I can say you have a job that few would volunteer for or find satisfaction or financial reward in so there is that. Family counseling could be the beginning of the adjustment in arrangements.
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Hate to say this but this is just the beginning, Alzheimers,dementia are progressive illnesses. They can and do get violent, hide poo in various places, wander, you have to eyes in the back of your head. It’s great your doing this all by yourself but I wonder why you are not being more vocals and asking for more help from family. Let other members of the family live with him for a while and take care of him. It’s unreasonable and unfair to leave this on your shoulders. Changing your father in law surly should be your husbands job, what an unpleasant job.

My mum needed a team of people to look after her,change her, move her in bed so she didn’t get bed sores, give her morphine at the end. So many people undertake the job of carer without realizing what they are taking on. I tried and failed to keep my mum at home, it’s too much.

You need to ask for assistance, is anyone of the siblings at least paying you. It cost £5k per month to look after mum.
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From another post: "I have been my father in laws care giver for nearly 8 years now. Up until 8 weeks ago we have been able to allow him to live on his own with many trips to his house daily breakfast lunch dinner and drop ins I give him his meds cook his meals so his personal care including foley care and cleaning after incontinence showers and all household chores so he can stay in his own home we put up cameras in all his rooms so that we can watch him when we are not with him. Pops hasn’t been an angry patient until recently he has had his moments behavioral changes are now taking place. I am hopeful that when his bedsores these developed in hospital and are on his heels,, heals I will be able to go home right now through he is in boots which make him unstable and so unsafe to stay alone again. "

So now YOU are the live-in slave caregiver for your FIL for 8 months now? He takes out his anger on you?

How did you fall into this caregiving trap? How old are you? How old is your FIL? Did you have a job before you became the caregiver slave?

What is your FIL's financial situation? Who has POA? HCPOA? How many siblings does your H have? Why were you the chosen one? (I hope you won't say that you volunteered, but did you????)

Is this being done to preserve the inheritance?

Do you see how much of a doormat you are?
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When you “step in”, you risk being “stepped” on, not always with malicious intent, but because all of the rest of the potential caregivers are “too busy, too far away, too involved in ( ), too sad that this has happened, not able to do this as well as you can, afraid to make the situation worse………”

And the better you do the job, the harder it gets as caregiver to extricate yourself from the day-to-day grind and establish the fact that the process that look so reasonable and easy to them is dragging you into exhaustion and despair and then even deeper and deeper.

Since it clearly IS NOT with you, WHERE does “the buck stop” in this man’s care?
Who is ultimately responsible for the planning and management of his life ongoing?

WHY ON EARTH do you feel uncomfortable taking steps to take care of YOURSELF in this unbalanced family dynamic? When do YOU sleep? When do YOU have free, unstructured time to “restore and refresh” YOUR LIFE?

Has anyone in the “care constellation” (besides YOU) considered that dementia is a CONTINUUM that ceaselessly deteriorates?

Are you considering the fact that there is no one who actually CAN initiate the conversation for increased support FOR HIM, BESIDES YOU?

If you’re waiting for family to “fire” you if you force your self to be “uncomfortable” and TELL THEM HOW YOU REALLY FEEL, I think you can feel perfectly safe that that’s NOT going to happen.
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Set boundaries and expectations with the family.

Create a plan for care for yourself, what do you need, and how does that work with the care you are providing. Always, you come first, both mental and physical well being. If you are sick, then there is no care, everyone in the family needs to be aware of this. I was in this position last year, at one point I stopped functioning, I could no longer help anyone, because I was so stressed. The first step in this journey is to figure out what you need, then communicate and execute and what you cannot handle must be moved. Talk to professionals in this space about care for people at home.

Talk to the family and where there are tasks that you need to hand off, how will it be done, you can ask for support from the family, or you can get support from professionals. There are a lot more services for aging at home than previously, but you have to do quite a bit of research to find them. Tackle whatever tasks you can to make his life comfortable and keep your sanity. I do not care for my mother hygiene or medications, I have set my boundaries there, the medications make me nervous, and I do not have the patience for the hygine activities, so our PSW takes care of this. I take her to appointments when it is convenient , check if my kids can do it and last resort is PSW/agency to drive her when I am not available. I have organized a service for meals, we plan the week meals together, then we order them and they are prepared and delivered. Everyone is happy, she gets a say in what she eats, it is healthy, meets her nutrition goals. We spend 1 hour a week doing this instead of 1 hour a day shopping and cooking. When done well, this costs the same or less.

Remember that his anger is not against you personally, this is going to be most difficult, you just have to brush it off. You cannot control this, and anything you cannot control you must learn to ignore.

You will need to be firm with the family and stick to the consequences, if you say you cannot do what you are doing now, then you must follow through with your actions, hire someone and they pay, or ask for state support if they will not step up.
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So everybody except your FIL tells you how grateful and appreciative they are, do they?

Mmm. "Once more with feeling" methinks.

They can show a real appreciation of the workload you have borne and continue to bear by:

- buying respite hours - so many hours per week of paid professional help during which FIL is off your hands
- buying respite stays - a week or two every three months or so, when FIL stays in a facility that offers this service specifically (which means they'll be good at it and won't mess him up) and you get away for a proper rest
- a schedule of visits and practical help that they can work out amongst themselves - good for FIL's socialisation, good for their understanding of where he's at in his journey, and good for letting you feel less isolated.

And even, if this appeals to you, plain money. They do say after all that this is the sincerest form of flattery.
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PenelopePitstop Jan 2022
I agree about respite care. I didn't even know what it was until recently since my MIL came to live with us. We have a big family trip coming up and there's no way she can be left alone for a week. I don't know about other areas, but where I live it's about $150 per day! We would need 8 days and that would be $1,200!! I know my husband won't want to pay that, but he is going to have to do something since we don't get any help from his sisters.
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Invite those who are singing your praises, but who do no so the work themselves, to each shadow you for a weekend. Explain that they will need to know how to proceed in the event that you should be ill and cannot perform those duties at some point in the future. That is a reasonable request and may shed light on what caring for this person at home really entails. They can’t know the level of difficulty until they have a “hands on education” weekend.
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You deserve a “pity?” party and much, much more. Scheduled support would be a start. Family discussion of the division of labor and commitment to future plans.

But you know all that.
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I did it for 17 months. Everyone says they appreciate but no one helps. I made my husband assume care on the days he was off. His only sibling a Veteran also like my 90 yo FIL decided FIL needed chemo for FIL PROSTATE CANCER. FIL passed away after the 1st and only shot exactly 4 weeks to the day 😢 however. the stress was starting to get REAL! My three children are gone and out of the house with family of their own and I had to revert back in time 20 years to be home to fix three meals a day! I’ve only been married to FIL son 3 years😂
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There is no way that I would be doing what you're doing for a FIL. No way. You are being taken advantage of by your FIL's family and by your DH. I agree wholeheartedly with the other replies here that you need to give notice that your caregiving will be coming to an end. Set your face like flint and stick to it. If his children etc. get mad, then let them get mad. Their anger is not your responsibility.
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