What are my caregiving expectations? I have chronic fatigue and arthritis. I struggle with daily life, quit working, and am disabled.

It is ok for you to simply say NO!

Sorry, I just figured out I can reply to u.

The question should be how much caregiving you are able to provide . You have multiple physical health complications which possibly affects your mental health. Rather than being concern with what are your caregiver responsibilities you should be concern with taking care of yourself and setting boundaries with your sister.

Let them bi**h. Your mother is their responsibility as well as yours. You are not obligated to do everything. They should not have such high expectations of you knowing your medical conditions.

Let them bi**h and flick their passive aggressiveness. Should you wear yourself out they will step in. Therefore, they should step in now prior to wearing you down.

Be clear.

Say no when you mean no.

Say I can help with A.
But I can't help with X, Y, Z.

On repeat. Change what you can/can't do as your health dictates.

"But they are bitchy to me.."

So what? Really: SO WHAT!

You can't control them, their time, their words, attitudes, thoughts or feelings.

Don't let them control yours.

Look to your left
Look to your right
Look to your left
Look to your right

Repeat this exercise anytime someone asks you to do something you don't want to. Raise a very special finger in their general direction if that's not sufficient enough to deter them.

Truman, if your family “have no idea how exhausted I am because they only see me for holidays when I feel ok”, then it’s not surprising that they think you aren’t pulling your weight. Suggestions:

1) Find a way to make your own health problems and limitations more understandable to your family.
2) Have a meeting where you say clearly that you can’t manage their expectations and why. The move on to discussing different plans as follows.
3) Do they want to be paid for the extra work that they do? How can you all organise it?
4) Does mother (and you all) need to find in home carers to take some of the load? Or
5) Is mother’s care becoming too much for you all, and should you investigate appropriate facilities. If mother’s cancer is progressing quickly, that might include a hospice facility.

So, let them be bitchy, passive aggressive and whatever they will throw at you. Are you sure that it is not your own feelings of guilt that have you reaching that unfounded conclusion? Besides, you can only control your own reaction to their actions. You cannot control them. You wouldn't want to spend the night with either of them anyway, would you? So don't use that as a reason.

Saying "NO" is simply enough.

I sense that your sort of estrangement from your family isn't new. Have they not believed you have your conditions?

As far as not wanting to put your parents out in any way if you were to stay with them, well, don't feel that way. You're driving 1.5 hours (3 hours RT) to help THEM. BUT I also see that they only have an uncomfortable couch for you to sleep on, so I can certainly understand why you wouldn't want to stay there.

Your three sisters all have spare rooms, yet no one invites you to stay with them? Why is that? What has your relationship with your family been throughout the years?

As someone mentioned, is the care becoming too much for your sisters? If so, then none of them should be expected to keep it up.

What are the finances of your parents? Can they hire help?

I don’t think you should be caregiving at all. I have chronic fatigue syndrome which is made worse by stress and then causes insomnia. I manage and can function by keeping stress as low as possible and managing my energy expenditure. It sounds like 3 hour drive is too much for you so say no. A lot of people don’t understand having long term illnesses that effect energy levels. I would say don’t waste your energy on them. They can do a little research on it if they care.

I too have a feeling that more has always been expected from you. IMO there is something we must give off that makes people think
"she is the one that we will pick to make feel guilty". The one that our feelings don't count. And its the one that may not have had the greatest relationship with a parent.

I suggest you ask your doctor to write a letter explaining what your health problems are and how they effect your daily life. All your illnesses are painful for one thing and debilitating for another. Most are from a compromised immune system. They go hand in hand. You probably should not be driving 3hrs round trip with Chronic Fatigue Syndrome.

No I don't have "lupus, fibromyalgia, or rheumatoid arthritis" But I know people who suffer from these.

"everyone our age has at least some arthritis" The arthritis we older people suffer from is not rheumatoid arthritis which is debilitating. Its not age related, it can effect any age. Lupus and rheumatoid arthritis are caused by our immune systems. Fibromyalgia is a stress based illness. My daughter says its not uncommon to have all 3. And fatigue comes with Fibromyalgia.

This woman, IMO, is lucky to be able to get out of bed everyday, The Fibromyalgia flair ups, a friend tells me, are horrible. I would say this woman is in pain constantly.

Truman, I think you need to get that letter confirming your illnesses. Then attach literature concerning each illness to the letter and send one to each of your siblings. Hopefully, then they will realize that you need care as much as your parents.

Update us if your successful in getting siblings to understand where ur coming from.

Truman46, I just read your profile. It says your Mom is 76 years old, or did you put down your own age [I know, the question on the profile is confusing]. Thus, we do need more information. Do your parents need a part-time or full-time caregiver? Does your Dad drive?

Did you quit working due to your illness, or you quit to take care of your Mom?

I found this works with anyone of any age that wants your help but if it's something you just can't do..... stand in front of a mirror and say over and over again "I cannot possibly do that" until you feel comfortable saying it.

if your sisters are being bitchy and passive aggressive and that matters to you, then you definitely need to make it clearer to them that you are actually ill. i will admit we tend to get a bit passive aggressive with my brother who never visits mom and does no caretaking, but he is perfectly healthy and capable but just doesn't want to be around he because "it's hard to see her like this." um, yes, it is, but we still do it every day! so we generally don't give him any updates on mom, he doesn't deserve them. we'd certainly tell him if she went to the ER, but my sisters and i send each other daily texts on mom when we see her and brother gets none of that. he can ask if he wants to know. but he doesn't. anyway, my bitterness aside, if your sisters feel this way about you it's because they do feel you aren't pulling your weight. if you've already explained your illnesses to them and they still act this way, then that's their problem. but if they really don't know and if you want to try to salvage the relationship, you should find a way to make it clear to them.

I think that my main frustrations is that they are not communicating with me and don't respect my time with mom. My youngest sister likes to be in charge and is now saying that we are to limit our visits to 30 minutes. So I would be driving 3 hours to spend 30 minutes there.

On Sunday, my husband and I went to my parents house to watch a football game. We had arranged this the day before. I called prior to leaving to check in to see if she felt ok. There was no answer, so I thought maybe they were napping. Nope, my older sister arranged to take my parents to see my niece's house 45 mins away. Then my parents went to a visitation at a funeral home. Well, of course my visit was too long after the other activities. I don't have a problem with them seeing the grandchild's house. I just wish there was more communication.

Part of the problem is my mom, she bitches to another sister that the visit was too long. She of course told me and then I felt bad. Mom is angry and crabby with due reason. Hard to be angry with a dying person.

All pitch in some money to hire a house cleaner to come in every 2 weeks. Ask their neighbors if they know a good one. That way sis doesn’t get to claim martyrdom anymore. And you get off the hook, at least about that.

Not really.They are free to resent you. But your priority has to be your own health. I have a stepdaughter with RA. It is a dreadful thing to deal with, added to your other auto-immune issues.
You need to gently and certainly explain to your sisters in a sit down conversation; let them know that no one wishes more than you that you were able and could help them, but that you have all you can to stay standing with your head above water. Tell them they are free to judge you, be angry with you, and etc. but that won't solve their issue with caregiving. If placement is needed they will have to accept that or take on your share of this burden.
Then get on with your life doing the best you can to protect yourself and to save for the needs YOU WILL have in very short order. Find friends who support and love you, and whether it is knitting or book club, go out to those friends and make your holidays with them.
You cannot change others or how they choose to deal with life.
You cannot make everything right and
Some things cannot be fixed.
I am sorry you are facing this down. Be certain, as you do, to use the proper G-WORD which in your case is GRIEF, not guilt. Don't pick up the baggage they set in front of you. Say it ONCE. Say it GENTLY. And don't discuss it again.

Sorry that you have a bunch of issues going on here.

First, I would nicely tell your sisters that you just can not do these drives alone anymore. If you go on a weekend with your hubby so you can rest on the drives, that might work much better. Maybe help her with one of her projects or bring lunch, whatever.

Then I'd ask them if they are feeling burdened and would prefer if your parents hired some help to pick up the slack? That would be a perfect solution. I'm sure they're a little overwhelmed, so get more help.

If they are bitchy about it, so be it. I guess you're not that close at this point anyways so it might not be a huge loss. I would try to stay calm if they give you crap but have something planned to say like I'm sorry you feel that way but my health issues make it too difficult for me to do X. I don't want to burden you but I need to take care of myself first.

How long does your mom have to live - if they've been given a time line?

How's your dad? He can't take her to her appointments? I guess not but that's too bad.

"Living 1.5 hours away doesn't really make me the primary caregiver".

This. This is the fact right there.

Not the primary caregiver. A loving daughter.

Your sisters wish you could do more. But you don't live there & can't. That's the simple truth.

Their pushback at this fact is fairly futile. Their energy would be better spent arranging alternatives. Their bitchiness better directed in organising & managing the support.

I've been caught in this & seen it with my DH's family too. Now I see the pattern: People trying to manipulate.

Truman, perhaps you need to be a bit more assertive yourself. You are only 50, and no wonder it’s hard for others to understand why you are so unwell. Look at your comments:

“Sister #2 said she was at the house cleaning for 2.5 hours. I wanted to reply that I will have spent 3 hours in the car driving to and from my parents”. Why didn’t you say just that?

“I shouldn't have to prove to my sisters that I am ill”. Why not, if that’s the reason why they believe you don’t do your fair share?

“None of my sisters offered me a room”. Did you ask?

“I feel guilty staying at my parents home. There isn’t a bed and I feel like a guest at parents”. For pity’s sake, get a portable ‘bed’, and store it there. Many of us do the same when a parent dies at home – I did myself. Which will be worse? Feeling like a guest, or not being able to be there while your mother is dying of cancer?

And the first one: “My family have no idea how exhausted I am because they only see me for holidays when I feel ok”. Why are you so much better on holidays? Do you explain?

Posters on this site very very often write to an OP about taking steps to stick up for themself. One way is of course ignoring unpleasant unreasonable others. But that’s not the only way.

Have you and your family always had strained relationships with one another? If so, don’t imagine things will improve during a time of stress!

For your OWN piece of mind, figure out what you will be most proud of when you look back at the last weeks or months of your mom’s life. If you’re content with keeping your distance, so be it. If 2 years from now, you imagine that you will regret not trying to make time to see mom, then do something about it now.

If it is your choice to spend more time with your mom and help in some way, figure out what you CAN do. Look for openings, not for barricades. The expectation of you driving back and forth hours to be an extra ear at an MD appt is unreasonable. You know that, and so do your catty sisters. Reschedule your football afternoon with your parents, but tell them you’re bringing the goodies so Mom doesn’t think she needs to entertain you. Pick up subs, drinks, and cookies, but don’t drive an hour and a half without making sure they’ll be home.

Even though you have medical concerns, figuring out ways that you can helpful, positive, and useful will go a long way in making you feel better overall. Your physical state is only one piece of your well being. Plus, I bet your dad would really enjoy the time; I would worry about him.

Do they not believe that you are ill? Have you not had a good relationship with your siblings? Something seems a miss here... Maybe they feel because you are not working and maybe they are, that you have more time on your hands than they do to help out with driving your parents to the appointments.

If you can't do it, then you can't do it and you need to just tell them so. You are never going to get them to come around to your way of thinking. They are angry that you aren't participating in the care of your parents. I doubt that is going to go away. But if you can't do it, then you have no choice but to decline and take care of yourself. You can't control how they feel. You can only control your own actions.

Why do your parents not have homemaker/companion service a few hours a week? The do housekeeping, errands, cooking, driving to appointments and social gatherings, etc...
This is not as expensive as an in-home CNA. Homemaker/companions do not help with things like bathing, incontinence care, medications. They don't do hands-on.
Medicare will pay for homemaker/companion services if their doctor says they need it.
The doctor's appointments get scheduled during their homemaker/companion's shift. Doctor's offices understand this and will accommodate your parent's time needs.
I'm curious about one thing though. Why do you claim to feel okay during holidays?
You can imagine what a statement like that would make people thinks. Especially your siblings.
If I was one of your siblings and you said this to me as the reason for why you can't help with the parents' caregiving, I would tell you to suck it up and pretend it's Christmas because you'll feel better.

You are NOT available, so please stop driving that hour and-a-half to three-hour round trips to assist your mom. Either she gets her own services and property upkeep to keep her home or get moved into a facility. Instead, focus on your own care needs. Forget about your dysfunctional family dynamics that only add to your own burden. Take better care of yourself as your life and happiness depends on it.

Burnt,

As someone who lives with chronic illness, due to autoimmune issues, sometimes, when we know that a holiday is coming up, we can try and rest up to “bank” our strength. This SOMETIMES helps.

The day in and day out times, with no rest in between, especially when there are physical demands, can throw me into a flare, and I can become down and out for DAYS.

This might be to what the OP was referring.

There is a lot of good advice here Truman46. You are allowing this situation to exist so why would they change? You cannot force your family to do the right thing. They are obviously very selfish. But this is the bottom line. What good are you to others, if you are not good to yourself? Take positive action to relieve yourself and to feel better. And above all else, do NOT under ANY CIRCUMSTANCES, feel guilty. Hang up the phone, dont come to the door, or walk away. Handle your business Truman46. No one else will.

All you should be saying at this point to your sisters and mom is NO.

No I can't drive to take mom to her appointment. No I can't clean moms house. No to whatever they ask.

Time to choose yourself. You deserve to be taken care if just as much as mom does. But you don't have to sacrifice and martyr yourself to care for mom to make your sisters happy.

If mom and your sisters aren't concerned about you and your health then that shows you the nature of their own characters.

Mom had her time and shot at life. Her time is running down. Mom should be looking out for the well being of her daughter instead of selfishly clinging to her life which is winding down.

Take care of you.

Move to Florida................place yourself in Assisted Living and start enjoying other people and outdoor activities.

And they live 20 minutes away? Are they insane? Do they know of your autoimmune disorders? If not, fill them in right away, then tell them NO.

Unless someone has autoimmune diseases, they have no idea how debilitating they can be, especially Chronic Fatigue Syndrome. There are days you’re doing good just to get out of bed and get dressed. If you did what they are asking, it would take a solid week to recover. It is so not worth it.

Hopefully, they just didn’t have their brains engaged when they asked. If they live 20 minutes from your Mom’s house and can’t take her, maybe a friend can.

One more thing Truman46. Don't be like them. Don't be mean, cruel, or selfish, and refuse to be intimidated. Be better than they are. It will take time to change the course of your life, but you can do it. Again, handle your business!! I wish you the best. 🎈