I’m the 24/7 caregiver for my 87 year old mother who has dementia. I pay for 10 hours of outside help. I have a sister who took her out for an hour on Thanksgiving and visited on her birthday. Mother’s Day will be her next visit and I’m dreading it already. She does nothing else to help me care for OUR mother. She even took a part time job to be unavailable 7 days a week and told me she can’t bring OUR mom to her home because she rents and mom might destroy something. OUR mother weighs 89 lbs and can only walk about 10 feet. I’ve been doing this for 7 months. I cried every day for the first 2. I haven’t been able to visit my grandchildren in Ohio or babysit my 2 other grandchildren nearby. I had just retired from my job as a nurse in a state prison when my stepdad had a stroke and passed away...I liked prison better. My mom pees in her shoes and blames my dog...I gave her a small trashcan for dirty tissues and she pooped in it. My dog and I just look at each other and shake our heads. I have gotten to the point where I am ok with this caregiver life but I can’t deal with how much I resent my sister. I don’t want her here. I don’t like her. I don’t want to be the bigger person. I’m doing what I feel is right for OUR mother and I can live with myself. I don’t have to make it easier for her to sleep at night.
Assisted living costs lots of money. NH isn’t desirable because Karin worked in a skilled nursing area and saw less than quality care.
I had to let go. I hope you can, too.
Let your sister visit. That's her relationship with her mother.
It has nothing to do with you. Leave the house and get out for a walk or run some errands or go for a massage...
I would write a letter to your sister revealing your thoughts and feelings. Since she works, perhaps ask that she can offer a bit of money towards you and your mom since you are doing the "heavy lifting" of 24/7 care. No blaming or shaming her, yet just revealing your experience and how you feel about everything. Usually knowing that I've been clear to my sister, and heard, without getting into a fight, helps me deal with challenging feelings, no matter what she does with it.
And remember to do some self-care. Hire a caregiver, even just for a couple hours and get out and go for a walk...
You're doing a great job! I really appreciate it! Knowing one of our elders is in good care warms my heart! All the best to you!
Btw get a poa and health proxy in place if your sister is more of a problem.
The other issues, it's time to have get in pull ups and you need to toilet her. Jmo. I'm a sole caregiver with a brother who does nothing and never calls or comes by so I understand. Try to get more help through the government.
I see a lot of "take advantage""let it go" and I disagree.
You have a right to be pissed and it sounds like mom doesn't even know she's there really. It's a gift to your sister. Are you wanting to "gift" her?
Btw yes do ask her in writing for some financial support for your mother, since she can't spend quality time with her. Jmo
Yes, as I tell my brothers. My mom is OUR mom. She shouldn’t be only MY responsibility. Nothing I say makes a difference to though. So sad.
I totally understand and relate. My sister and I had similar issues. However, I took charge a bit and let her know when and for how long I needed her to relieve me. I needed to do so as calmly as possible. It may be very helpful for you to see a counselor to help you shift your inner distress into self care actions. Radical self care, because you need it to survive this challenge and protect your own physical, emotional and spiritual health. Does mom have assets or might she qualify for Medicaid long term care?
That would cover home care aides, assisted living, senior daycare programs, nursing homes. You too deserve a life worth living, dear fellow caregiver. I used this prayer daily: “Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.” Caregiving is a great challenge. It makes us wiser if it doesn’t kill us! Please learn to change what you can, do what is healthiest for you and if you have faith, pray for the right guidance to a safe life for mom and a happier healthy life for you. You deserve it. I kept my dad at home in his apt. with help 13 hours a day via Medicaid. He got pneumonia and went to hospital and rehab last August. In November he was assessed as done with rehab goals and I had a painful decision to make bring him home without 24 hour care or transfer him to nursing home unit in rehab facility. I knew he was safe but lonely. I visited h as much as I could, and paid two aides he had before to spend 3 hours a day with him. He died January 20 at age 100 years plus 5 months. I did the best I could. That is all we can do. I dream of a day when all seniors have compassionate excellent care in nursing homes they are fully staffed and well trained to give patients the best interventions for dementia. Our families deserve this help and Medicare should cover it. Hopefully it will happen soon if we vote for it. Wishing you the best.
We need better care for seniors in this world. Flip side too, caregivers need more support.
It doesn't sound like mom can go out easily...I was going to suggest if sister wants to come over to relieve her guilt, let her take her somewhere...or if you trust her (which I doubt), you could take the pup and go elsewhere.
Can you really live with knowing you kept her from your mom? It's so sad...in the end, you sisters will be left. And while nothing much is keeping you together now...who will be there for you later? I wish my own sister gave that more thought...she's more a live in the moment kind of person.
Be sure things are up to speed legally.
Also, check in with your local area agency on aging...they may be able to assist with more in-home help/time off for you...they have a caregiver support program. I have to add...in an UN elder related situation I very much wanted to be a bigger person. I was horribly torn about doing something very mature and rising above it, yet it contradicted my feelings so very much. I unloaded on a dear and trusted friend who was more objective and knows me well, but not the other person at all. He said "nothing you have told me makes me think you have any obligation to do this at all." I can't tell you what a relief it was to hear that.
You have a bit of time to consider it all. BTW..my sister lives at too great a distance to be accessible/of any help at all. She can barely respond to an email just so I know I've been "heard." Even that little bit of support helps, so it really bothers me that she doesn't. It took a long time, but I've lowered my expectations and resentment has dissipated. I'm sure it must be far more brutal to have someone closer who makes up BS excuses. Welcome to the good daughters club.
Later you will feel petty and you already have enough on your plate - don't allow negativity to cloud your judgement.
Your situation with your sister is more the norm than the exception. In a family with siblings it's not unusual for one sibling to take the lead while the others do or don't help, or try to call in plays from the sidelines while critiquing the one doing the work. There is no benefit to you adding resentment to your already difficult circumstances that are only going to get tougher over time. There is no benefit to your mom not to be the recipient of her daughter's attention regardless of her level of awareness. There is no benefit to your sister to not have the outlet she appears to be capable of sustaining with your mother. Lots of people are simply not able to rise to the higher needs regardless of what you think they should be able to do. Your sister clearly regards your training as a nurse as more qualifying for the lead caregiving role.
Consider what you need that your sister might be able to contribute and calmly let her know how she can be involved. It may be a relief to her to have some avenue to be involved that doesn't involve hands on caregiving that she clearly fears. Allow for the possibility that assisting you is a way for her to contribute to your mother's care. You may need someone to handle the bookkeeping and recordkeeping for your mom's care. Perhaps she could make that a quarterly effort to keep things organized. You may need money to hire a respite caregiver to have a regular day off or an aide to bathe your mother twice a week. You may need someone to take over ordering, paying for, and sending your mother her disposable undergarments, wipes, moisture balm, no-rinse shampoo and other supplies. You may need someone to come in and cook up meals to stock your freezer or pay for a meal delivery service. You may need someone to clean or pay for a housekeeper to come in once a month. You may need some yard care or your car serviced. And so on.
My point is, seething over what your sister isn't or can't seem to do adds nothing to anyone's life, most especially your own. It's not the "bigger person" you need to strive to be but the "more effective" person that would ease both your mind and your life. I like to call it "possibility thinking." Consider all the ways in which your sister might give something of herself, time, or money to assist and all the ways that might work with her to calmly make requests. Think of it more as "strategic" than bigger.
You will have do the work to accept that your sister will not be an equally involved and equally able partner in your mom's care journey. There are benefits to being the person in charge with the decision-making authority and you appear to feel that you are the best suited for that role. Accept it as the way in which you will be helping your mother and coordinate all the other sources of help available to you on her behalf, including your sister.
Blessings for your dedication. It will be a tough road but when it's over, strive to have no guilt or regrets over having done your best.
Everyone has their strengths and weaknesses, so I don't think you should be the arbiter of what strengths are acceptable and what ones aren't. You gave a laundry list of the difficult things your mom does, then you blame your sister for not being willing to take that on?? Why? Because she chooses not to martyr herself and help you martyr yours? You're merely projecting your resentment onto the wrong person.
Don't keep her away from your mother. Mom has a right to see her family, and your sister has a right to see her mother.
Please try to be aware that your exhaustion and resentment come through clear as a bell. It affects your mother even if you don't think it does. You would do better to find her a nursing home where she can have proper care and be visited by a loving daughter who is not angry and resentful.
My sister and her partner earn a very good living, take 3-week cruises and 3-week vacations to exotic destinations. But she can't manage to make it from the west coast to the east coast to see her mother.
I also earn a good living and have traveled the world as well. I still go when I want to.
Someone told me to re frame it. Instead of, "I HAVE to take care of my mother," say, "I get to take care of my mother in her waning days." That has changed everything. I put limits on what I can do for my mom. She lives independently in a senior building and it offers healthcare right across the driveway. I'm so blessed to have found this. I no longer have to accompany her to EVERY doctor appointment. I visit twice/three times a week. I've found a supermarket that delivers groceries. She had arthritis real bad and can't stand up to cook, so I bring hot meals on the days I come or on Saturdays I bring hoagies, which she loves.
I'm planning a two-day vacation with her. Once a couple of years ago, she had a medical crises and was unable to stay home alone and couldn't come to my house because it is three-story. She pitched a fit when she had to go to respite care overnight.
YOU ARE MAKING A CHOICE. But you are also playing the martyr and relishing in it. Find respite care--go visit your grandchildren. If money allows, assist your child to come visit you and plan staycations while they are with you. Get respite care while they visit. When your sister comes to visit, treat her cordially and let her spend as much time as her conscience dictates with her mother. I've come to realize not everyone can handle watching a parent age. It's hard to witness.
But please don't break your relationship with your sibling. Believe me while you're sitting there stewing and cleaning up after your mother, your sister is busy enjoying happy hour with friends. Anger and resentment is like sitting in a wet diaper. Ain't nobody uncomfortable but you.
you are taking care of mom. You owe your sister nothing.
its time for you to dictate the terms of her sporadic visits. It’s your home, and you are the caregiver. You set the rules. This is imperative. If you do not take care of yourself, and protect your own mental health, then you will be no good to your mother.
I had to do this with my own sister. She has not seen my mother In close to a year. Honestly, mom doesn’t remember, and I am so much less stressed.
OP has said for many years her sister has only visited their mother a few times a year, yet, she now expects her sister to change age old behaviours. That is unreasonable. Sister has a reason for limiting her contact with their mother. We do not know what it is.
OP decided 7 months ago to have their mother come live with her. She made that choice, her sister did not make the choice to become a caregiver, even on a respite basis. There are always options for care giving, we may not like them, but they exist.
I worked 6 days a week for 4/5 years. It is exhausting, perhaps not as exhausting as care giving, but I doubt OP's assertion that her sister got the part time job only as an excuse to not be available for care giving. I know I did it to make ends meet.
OP expects her sister to take time off work so OP can go visit her grandchildren. So the sister is supposed to use up her holiday time to allow another person to have a holiday?
OP expects her sister who is renting, working two jobs to make ends meet, to provide money to help with Mum's care? And is surprised that sister is showing resentment that OP, who had help to get where she is, is asking for funds?
Regarding having Mum go to sister's home. My mother has not been allowed in my home for 4.5 years. She did something to destroy my ability to trust her and I will not allow her to cross my threshold again. Oh everyone who meets my mother thinks she is a lovely woman, but they were not raised by her. It may have taken my almost 50 years to put good boundaries in place, but no one is going to remove them now.
OP sister and brother are estranged to some degree from their mother, it could well be that they had very different childhoods that OP and cope by limiting or having no contact.
If OP cannot go visit the grandchildren there are other ways in these days of technology to keep in touch. It is not the same as hugging a child, but watching a music recital or game via Skype or any other App is better than nothing. My best friend's grand baby is 1000 miles away, she has only seen her twice in person, but gets photos, Facetime and more on a weekly basis. The parents have a recording of her reading to the baby and more.
Or OP's kids can bring the grandchildren to her.
Looks like we are all in the same boat! My brothers are like yours too. Do nothing to help.
I'm surprised with all of the answers going back and forth. Your question touched on a real issue, family dynamics when it comes to personal care of the parents.
Knock on wood my parents are relatively healthy, but I have a brother and he and I don't see eye to eye now, so I can only imagine how things will be when our parents can't function on their own anymore.
I wish I could give you a clean, cut answer that would take the sting or guilt away, but there is no easy answer. All I can tell you is negative energy, stress or anger is debilitating. You gotta let it go, especially as the care for your mother is only going to increase. As a nurse your should know about caregiver burnout, so start looking else where for help and by all means find a friend you can vent with and when you are done with the conversations,its left right there and the weight is lifted from your heart so you can get back to working it out.
Take care and Stay Inspired,
The point to others to include me, Start talking to your siblings about "What ifs" It may be messy, but at least you'll start the process of understanding "who's going to do what."
Thank you for Sharing
He once told me he was not his mother’s caregiver nor my respite care. At that point I decided he really does not want to help and frankly, not his job. He visits when he wants. I don’t care if he visits or not. Once I let go of the feeling that it was his responsibility to take care of his mom, my anxiety went away. You cannot control other people. You can only control your response to them. You do need more help. You cannot force your sister. Find outside help somewhere.... You are only making yourself miserable.
When your sister visits your mom, leave. The less you think about your sister, the better.
You sound like me a few years ago.
Dad has not been able to care for himself for about 5 yrs now. My mom started with issues like you mentioned a little over a year ago.
My sister lives next door to them. She refuses to help with their care. There was and still is always an excuse (grandchildren, her daughter in college, party, etc.)
My grandchildren live in the same city as I and I'm fortunate if I see them once in a month.
I was furious with her especially if I had them sitting outside in the porch and she would drive up and park as close to the front door of her house and ignore them as she walked inside.
Once in a while I'd catch her visiting only to discover she was asking for money. I put a stop to that immediately. If she comes over now, my parents have nothing to give her. Fortunately my parents had their bank accounts hacked and put me on them to oversee.
It was hard for me to drive up to my parents house and see her car at her house or her leaving to who knows where while I was struggling with trying to balance my life and care for our parents. They are a hand full.
I HATED HER! I still do.
It took time but I had to work through that hatred realizing that the only person who was getting emotionally and physically sick was me. She was happy with her life and didn't give me or my parents a thought. Sure she comes over and I rarely speak to her and leave. I tell her "I need something from the store", "pay a bill", etc. I want her to know that I do not "understand" why she can't help and I schedule my time because I have so much to do.
I send her texts every week (2-3) and tell her what I do and need to do for our parents. All the things I purchase and all the things that need to be done by a handyman. This is not an ego trip but I like to document everything. Should a need arrives later, I want to make sure I have it all.
I recently told her it was time for her to help pay the expenses since I had just hired a provider to help.
I did receive something which was surprising. We will see if it continues.
We can't change people but we need to find an avenue for them to contribute.
Remember you have the upper hand:
-Have her do errands (my sister picks up medication refills and leaves them at the door)
-Pick up groceries, clothing, other necessities.
-If you know she is bringing a gift during her visit, suggest what Mom needs
-if possible, schedule to have someone there an hr after she gets there so you can leave and not worry about Mom being alone before you get back. Go visit family or a good friend while you are out. It will really help.
Another thing: if Mom doesn't remember her one day and your sister is surprised, reminder why.
There are other things I can talk about that may help you however I'd be off topic.
Hope this helps.
" We are not suppose to carry mountains but to climb them."
Isn't it amazing how so many of us have jerks for siblings? My brothers are useless as far as being there for my mom. Sad, truly sad.
No truer words were spoken. They show their true colors in the end. My brothers are the same.