We are a large family (4 boys & 4 girls). I am 2nd eldest. Oldest sister has had parents (95&90) with her since 2016. Prior to that, brother (5th born) had parents for 20 years in hometown.
The 4 brothers & I live in different states. At one point, all the girls lived in same state until I moved in 2015 to be with my children & grandchildren.
so this year sister 1 lost husband to cancer in April. We had the funeral & life continued. Sister 1 had no mourning time as she has parents to feed, take to dr appts. and give medicine to. I’ve traveled several times to stay with her for 1 month or 2 weeks & help with parents. I know that is not enough time for her to take care of personal things but it’s all I can manage to get away. The 2 younger sisters are still working & help after work. Keeping parents company running errands & sometimes providing food or giving meds. Caregiving sister has had a fallout w/sisters, so they can’t come visit parents unless #1 knows in advance, they cannot come together & cannot stay long. #1 is trying to do everything herself & is neglecting herself. Doesn’t take her meds, forgets to eat, doesn’t do dr. visits for herself, etc. In the meantime, she gets lost going to drs for parents, takes them on wrong date or time or wrong dr.
She refuses to get outside help, because she “can do it alone” & doesn’t want any outsiders in her home.
Parents still have their 5 senses but can’t get around as easily anymore. Mom doesn’t want to leave #1 cause she'll be alone. Dad doesn’t want to come to live with me because my husband is here (the 3 other sisters are widows). I don’t know what to do, short of moving in w/sister & that’s not gonna happen.
What to do, what to do...
I’m very sorry you have had to watch this train wreck. Hope the dust will settle soon. Let us know how you are doing. Hugs. You’re in a tough spot. Hard to help manage from out of town.
Maybe send her a little "happy" - a book, an item of clothing - something that says "I Love You" and will make her smile.
Gently ask her about creating a plan, just in case, she should ever get sick or injured - and can't care for the parents. She should be gently guided into allowing people in to "train" to know layout, schedules, medications, and parents' preferences. Again, gently guide her into allowing others to help weekly to "keep their skills sharp" while she attends to her own needs. She may or may not go for it, but at least you are alerting her to a possible reality.
If she doesn't ever allow you or others to plan for this respite care, consider talking with the rest of the family about creating a "rescue plan" in case #1 is sick or injured and can not provide care to the parents. I'm hoping that once you have some ideas for contingency care I mind, you will be less anxious.
There may be lawyers on your town who do that for the elderly/disabled. Look on this site they may have resources.
Your sister may just need to burn herself out which will happen then she may need doctors care for stress, depression etc.
Hopen that helps!
Please consider #1 has been taking care of your parents for a long time and may consider _any_ discussion of relocating the parents, even on a temporary basis, as an indictment of her care. Being short tempered and sensitive can be a symptom of burnout and an approaching collapse. I encourage you to begin any discussion on the parents care with a statement praising #1's care efforts, then concern about #1's spirits and health, her recovery from BIL's death, how 40% of care givers die before the people they provide care. Tell #1 you want her to still be standing when the day comes you bury your parents, not already resting beside her husband. Then discuss _temporarily_ relocating the parents to your home as a respite break for _her_. I suggest talking to the parents about relocating as something #1 needs. My mother is still more likely to agree to something I need than a change for her sake.
i truly appreciate your suggestion. We’ve had discussions about moving the parents back home with brother or with me on a temporary basis. Sister wants to come along. I like your idea & I’m going to try to get Parents to temporarily relocate. I’ll have to think this through, making sure all possible events are at least thought of & have a couple of options available. Thank you. Wishing everyone on this blog a very Merry Christmas. Thank you all for listening, & providing other points of view.
Don’t ask her, “What help do you need?” Why? It seems sweet doesn’t it? And it is, to an extent.
Allow me to explain though. No one likes to have to ask for help. So offer!
Offer to bring meals, stay with mom and dad so she can get a break, take mom and dad to doctor appointments, grocery shop, run errands, wash clothes, tidy up mom and dad’s room, anything that helps your sister.
You still get to go home afterwards. She doesn’t have a break.
Did you ever consider that she and your sisters don’t get along for legitimate reasons? There may be more to it than you know.
Don’t try to force her to be friendly with your sisters. That is her choice. I agree that her sisters should be able to see their mom.
Do they stir up crap about the caregiver sister with your parents if they are with them? She may be trying to keep a harmonious home by not allowing them to visit.
Sad that your parents are stuck in the middle unless they are critical of her too. Then they are participating as well.
I would be interested in hearing from your sister. No offense, but your words are second hand information. Send her over her to speak for herself. I’m sure she may appreciate as a caregiver to be able to chat on a caregiver forum, right?
Has anyone looked into a facility for your parents? Sometimes it’s the best option. Sometimes it’s the only viable option. Has anyone looked into palliative care?
I appreciate that you are concerned about your sister and parents. I really do. Since you say you are willing to take your parents in and your mom doesn’t want to leave, so be it. That doesn’t stop you from helping. I don’t mean once in a blue moon.
Set up a schedule with your sister to help on a weekly basis. Then while she is out. Your other sisters can come visit mom and the three of you can do all of the things that she does.
You can wash, cook, clean, whatever needs to be done, just like she does. What a treat for her. That is vastly different from siblings visiting for a short time, hugging and kissing parents goodbye and not helping the caregiver at all.
Siblings should thank their lucky stars that they have a sibling doing all the hard work. They should also thank the caregiver and show appreciation instead of criticism.
Best wishes to your family.
the problem is: I live out of state, And 3&4 still work, they have their own families and they DO get the parents on weekends. Granted, it’s not much time, but #1 gets to do what she loves, go to her temple on Wednesday nights & Sundays.
There was a time when she & hubby would take off for a weekend or a week and 3&4 would care for her pets.
after BIL passed #1has gotten ill, #4 cleaned, fed & cared for her and her pets. Since the fallout (I happened to be there for a month & witnessed it) neither one wants to Put differences aside & work together for the parents benefit. #3&4 clean room for parents, do laundry, bring in groceries, etc.
im sure there’s more to it than I know since I’m out of state, on all three accounts. And, I may be getting partial truths from each sister. I’m not there, I’m not judging. I just want to know if there is some way to legally move parents to my home. Dad may be unhappy for awhile, but I’m hoping he will eventually get over it. the whole situation is complicated. What I have written is information I’ve received from all 3 sisters. My 2 working sisters are barely able to make ends meet, yet they have no qualms taking parents out to eat or buying food for them. The parents do not participate in what goes on w/sisters. However, #1 has told me she “talks” to mom about what goes on between the sisters, calls them names and has said they are “worthless.” I’ve asked her several times not to say things to mom that will stress her, yet she continues. Mom has CHF, worries about the littlest things & now she’s hearing these things about her other daughters.
if I could legally get my parents with me, I would do it in a heartbeat, no question about it. I’m not into airing my problems to the world, but I am very concerned for #1. Your suggestions have been very helpful. Thank you again for the input.
Sounds like your family is more Colectivistic - more village approach. So with 8 adult children it sounds reasonable to make *the promise* of no NH. 5 of 8 out of state, 3 local but 2 working = 1 fulltime caregiver. That is just not a village as you can see.
I admire your acceptance of responsibility & selflessness. But even if you did leave your family to be 2nd caregiver - stlll not a village.
If M & D move in with you, you will be sole caregiver. I just can't see an alternative to getting outside help in. But sister #1 can't / won't see it or accept it.
I think getting a third party in to open her eyes. She's not listening to family. Could you get a Pastor, Church Leader, Social Worker in to mediate? To explain that outside help would provide MORE care - to help you ALL. It is not a failure on her part. Outside help is the village you need.
My suggestion - Change that script to "We'll do whatever is best for everyone involved and take it one day, week, month, year at a time." Avoid making promises. Promises will leave you trapped or, at least, feeling trapped. There is nothing more blind-siding than having two parents who need total care. I have been in a combat zone and not experienced the PTSD that care giving has done to me. Yes, it is often an honor or a privilege, but it can destroy your own health, marriage, financial situation, sibling relationships, and daily living. I wish you and your siblings well.
The stress of providing 24/7 care for the folks is enough to cause dementia symptoms, it is so very overwhelming. Get folks into another living situation, assisted living, care home. SGM, you caring for them is not the solution.
Not same but elements similar - sort of denial the situation is too big for one person. Maybe some ideas there for you too?
All I can add is offer sister #1 advice, suggestions & alternatives kindly. Keep communications open. Do your research too so you have a plan if/when sister #1 needs help.
After my mom passed, I threw myself obsessively into various projects. Distraction, pure and simple. Fortunately, none of my obsessions required years of time, and none were caregiving-related. Still, I can see where such an impulse could come from.
Such a hard time for everyone! I don't know ... perhaps someone who CAN still talk to Sister #1 could extol the benefits (e.g., socializing, events and activities) that your parents would enjoy in residential placement?
I'm curious how old your caregiver sister is and if you think she may be developing dementia?
Regardless of what they want.
Even if it is temporary until #1 can have some time to get herself together. That would be my first choice.
They should move In with you or one of the brothers or into an ALF.
A large percentage. I think it’s something like 40% of caregivers-die before their patients do.
#1 sounds like she is about to crack.
Second choice would be to get her in-house help. I see your post states she doesn’t want anyone in her home. If one of the sisters is acceptable in her home, get the sister help so she has more time to offer. You and the brothers put your heads together and figure it out. Don’t underestimate the benefit of a housekeeper, a cook, a lawn person. Any layer of help makes life easier.
I am reminded that we often have to tell grown children about their elderly parents who won’t budge that they just have to “wait for the fall.” “the fall” being a euphemism for when an event occurs that forces action. I’m not sure how old your sister is but she’s been through quite a bit and it could be her before the parents that has a life changing event. (Actually she has had one with the death of her husband). After all I assume the parents are mostly being waited on while she is wearing thin.
One last comment is that whatever you can do to build a bridge between the sisters I would do it. Things don’t get better just because there is an emergency. In fact the existing discord can cause the inevitable health event to be much more difficult to manage. It’s really not like in the movies where all is instantly forgiven just because dad or mom or sis is about to die or has died or broken a hip or caught the flu.
You and the brothers may have to do an intervention of sorts.
I’m very sorry for this difficult time in your family. Let us know how this situation evolves. We all learn from one another.
Your sister is showing signs of burnout and very stressed.
Her health will suffer. She really can't care for Mom and Dad in this state. Just not sure how you can get to her. Hopefully someone else can help.