My sisters don’t understand that I am limited in the amount of time and effort I must be a caregiver. I have lupus, fibromyalgia, and rheumatoid arthritis. An actual request from them. My sisters expected me to drive 1.5 hours to pick up my mom to drive her to an appointment that is 40 mins from my home. I would have had to drive 1.5 to parents, then 1 hour to and 1 hour from appt, and then 1.5 hours home. There is no extra bed for me at their house anymore. I feel like staying at my parents’ house creates more work for them, they lose privacy, feel like they are entertaining. They all live within 20 minutes of each other. I don’t clean my own house, how am I supposed to clean my parents'. My family have no idea how exhausted I am because they only see me for holidays when I feel ok. Anything I can do about dealing with their resentment?
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.
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 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.
Laugh of the day, thankyou!
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.
2. Communication obviously isn 't a strong point. I agree that a meeting would be great, but they wouldn't respond to my suggestion.
3. No one is being paid for the the extra work. The extra work is really dr appointments, cleaning, laundry, and projects that mom feels is necessary. (She decided to get rid of all of her old magazines.)
4. She is able to do all of her personal care, gardening, playing cards, etc. Mom and my sister interviewed a hospice service. They will be starting soon.
5. That is part of the hospice process but she wants to die at home.
Saying "NO" is simply enough.
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?
"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.
As I stated above, why should I have to prove that I am ill?
"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.
I shouldn't have to prove to my sisters that I am ill.
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.
My mom doesn't have a caregiver at this point. She is able to dress herself, bath herself, etc. She would be able to cook if she was able to eat -it's been 5 weeks. She has been doing laundry, gardening, going to play cards, play bingo, etc within the past week. She was planning on driving today to her hair appointment.
My Dad has been there through all of this and is able to drive and do stuff around the house.
The caregiving part is driving her to appointments in the past few weeks (at most 2 a week). Meeting with hospice and starting the process. She has projects that she wants to do around the house that my sisters have helped with.
Living 1.5 hours away doesn't really make me the primary caregiver.
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.
If my mother had found either of my sister's visits too long or too much and complained of it to me, I don't know that I wouldn't have done any differently than your sister did in this situation. Because when my mom was terminal, my focus had to be on HER and HER comfort, not potential hurt feelings/inconvenience of visitors.
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.
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.
sister who is a nurse said days to week. She is not bed bound and still active and socializing.
Dad takes her to all of the appts, but the nurse sister feels they need to have one of the children go with.
I understand that there is anger and frustration but I am the one taking the hit.
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.
“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.
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.
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.
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.
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.
No, there is no such thing as "banking" your strength and saving it for a holiday.
Do you know how ridculous that sounds?
Physical illness doesn't work like that. Mental illness can though.
Sometimes with mental illness a person can be fine when they have something they're looking forward to or that they are happy about.
I knew a woman (in fact she was a relative of mine by marriage) who was debilitated from depression and fibromyalgia. Even collecting disability for these conditions. She could barely drag herself out of bed. She completely neglected her children who I used to bring dinners for, bathe, and wash their clothes. Her house was absolutely disgusting because she couldn't do any housekeeping because of her pain and disability.
She loved concerts. Somehow she was always able to get herself out of bed and bathed and dressed if it was a concert. She'd be dancing the night away too in the summer time when there was weekly concerts in the park.
Can't wash a sinkful of dishes or cook a meal for her kids, but can salsa dance in the park.
Sometimes in life we have to suck it up and get on with what we have to do. This is part of life. L'chaim!
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.
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.