Anyone consider giving up live-in caregiving?
Well, I am. Since Mom’s decline, she can’t be left Mom alone in her home. She’s an extreme fall risk and with her deep dementia she’s not capable of acting properly, and she has a host of other issues. I used to go to the store about twice weekly, now I have to wait until a sibling or niece shows up, which is unreliable.
My relationship with my sisters has deteriorated, though Sister 2 has lately started to be considerate. They act like I’m not in the room and that I’m an indentured servant. (When I asked Niece, who’s here once a week and gets paid to sit with Mom—though she sleeps through the majority of her time—I asked Niece is she’d vacuum and dust to help me out. When Sisters found out they blew a gasket. “She’s not here for you,” Sister 1 stated.)
Very long story short: both sisters are those “ready, fire, aim” people. They look for things to be outraged over. Sister 1 yammers onandonandonandonandon while spinning things to her perspective. She constantly hounds me nothing is more important than Mom, yet last week she came to spend the day/night with Mom and I looked forward to some time off. She acted like I wasn’t in the room and, after showing our diabetic mother two packages of sugar cookies she bought, sat with her back to me.
Yesterday I grabbed an opportunity to schedule Mom for a steroid shot in the neck for her really bad neck and back arthritis. I texted Sister 1 about it. A bit ago, she called upset that this was a bad idea, that Mom can’t handle the trip. Uh, it's five minutes away, and I'll be exhausted before Mom will. Then she raved about a reaction from the steroid with new medicine that she started a couple weeks ago (something to help her sleep but it’s not necessarily working). Fine. I said I’d call the doctor’s office and the pharmacy to find out. If there’s a reaction I’ll cancel the appointment. That sent her raving further and repeating everything she’d said.
She is to come this Saturday to take Mom till Monday so I could have a break. She said if I take Mom to the doc’s tomorrow she was not coming to take Mom to her home this weekend. “I’m not going to put up with her in case there’s a reaction.” (The doc’s office and the pharmacist said there was no reaction between the shot and any of Mom’s meds.)
I’m sick of this. I arrived here 11 months ago already burned out when I left my closed business and home in another state that the bulk of my pension pays for with almost enough for my expenses, and got my divorce papers after 20 years the first week I got here. I have no one to talk to. I take no money from Mom and I am POA for everything. Sister 1 is Mom’s executor but she said she can’t handle it, so I’ll be that too. I haven’t had a decent night’s sleep in a very long time. When is being treated like this enough?
Thanks to this site, I’ve learned it’s common for non-caregivers to turn on the caregivers. When my siblings and I had a massive blowup a few months ago, they said they had a plan to care for Mom and I could just go home. Frankly, I see no plan working as Sister 1 lives 30 minutes away in the country and farms and ranches; Sister 2 has an extremely time-consuming job and is on call and gets called out often and is always exhausted; Niece has extreme issues of her own and cannot be counted on to properly care for Mom.
I don’t know how much longer Mom’ll last with her host of issues. Her doc didn't think she would "be with us" in six months. She could go next week or years from now. I'd feel terribly guilty if I left and she passes in a few months. If I had a crystal ball...
Thanks for letting me vent. Everyone here has helped me get this far. Has anyone else got this point of seriously considering leaving? Did you leave or did you find a way to keep going?
Maybe it's time for another meltdown. I usually feel better afterwards.
deep breath in
deep breath out
repeat
Count 1 to 20 slowly
You're almost free. About to go home. Leave all these behind. Focus on the goal.
We're cheering you on.
I realize your reasons for not placing your Mom in a nursing home, but we also need to realize when we made such a promise we never knew what the future held. I found this good article here on Aging Care: https://www.agingcare.com/articles/I-promised-my-parents-I-d-never-put-them-in-a-nursing-home-133904.htm
She said, "We [Sister 1 and Sister 2] decided I'd move in with Mom."
I was so stunned but I wanted to scream, "And nobody bothers to tell me!?"
Man, I'm so mad I'm nauseous. I still managed to be civil and be considerate of HER needs of when she can move in.
Yesterday a letter addressed to Sister 1 from Mom's bank. Unless S1 got an account from that bank (which I seriously doubt) the only conclusion I have is she's made an inquiry into Mom's finances, which I handle. Yeah, I'm rational, but at the same time, with S1, I'm always waiting for the other shoe to drop. I can't help but wonder what she's up now.
Today I finalized a computer file of a resignation letter for Mom's POAs and declining to be her successor executor ready to print. I also included, with commentary to Mom why I'm resigning. Honestly, I don't if or when I'll "pull the trigger" but it may be with no notice and a massive pile of all Mom's papers on the floor.
So happy that you get to go home. I’m also glad you had this time with your mom. You are an inspiration. You saw what you needed to do and you are getting it done.
I hope your sister gets the help she will need for herself and mom. Sisters will soon see what you were going through.
Getting the house ready for sale will take awhile I imagine. Will mom go ahead and move while you remain in the house to get it ready? I’m so glad you are working together.
Keep us up to date. Good job!!
I can't thank you all for your support. You all have kept me sane and out of the ER. I couldn't have reached this point without horrible guilt. Thank you all!
Her doctor recommended a nearby quality, affordable senior daycare 2-3 days a week. We went with him on a tour, it had physical therapy, music therapy, nurse on duty, art room, movie room, activities, meals, snacks, beauty salon, even a step-in bathtub!!! We urged him to use it. It would have given him desperately-needed respite, and her desperately-needed interaction, but he refused. He finally admitted he was unwilling to provide for her personal care, however, when she became incontinent.
So we brought her here and stayed with her in a senior-accessible condo while our home sat empty. Caring for Mom meant an entire change in our lives. Our schedules now revolved around her. I learned to cook gluten free and soft chewable foods for her three meals a day. Advanced dementia meant she could not be left alone. We were often woken in the middle of the night by her wandering. There was extra laundry, cleaning bathrooms, bathing her (she fought it at first but finally complied), trying to keep her occupied, finding doctors and taking her to appointments. We began to feel trapped and strained by our new roles. We could no longer visit our kids, grandkids, all of whom lived in other states. I finally understood why that son, who struggled with his own issues and isolation, had not been able to care for her adequately; it was a balancing act for TWO of us, and was consuming us!
We could no longer go anywhere together. There was no family nearby to help. We hired an aid two evenings a week, so we could get out or go to meetings or church together (then we’d argue about how to “best use” that free time). We took her to a senior daycare facility, and found that she loved interacting with the staff and watching others around her.
Here’s what we began to realize. Our 24-care for Mom had lifted her out of a lonely, unhealthy, unsafe situation, and we saw her life improve, but only up to a point because dementia and health problems meant certain decline. We saw our lives and marriage in decline: loss of sleep, loss of independence, loss of friends, increase of stress and picking at each other. I confess that I felt like a maid. No, less than a maid — at least a maid gets paid. Then I struggled with shame for my negative attitude, but I felt so trapped. And depressed. My husband was caught between his loyalty to his mother and family, and his stinky wife. We were drinking more, snacking more, watching TV late at night to reduce boredom. Picture a graph: her life was up 25%, ours was down 75% and declining.
We realized if one of our kids had an emergency, we would be unavailable to help, let alone see them for fun. We added up the cost of in-home care, senior daycare, overnight care in the event of having to travel, and the myriad of other expenses; and the cost of a memory care facility appeared to be comparable. The cost to our family life and mental health tipped the scale. That’s when we began to visit memory care facilities.
We are surprised by how smoothly Mom has made the transition. She is content there. She enjoys being surrounded by her “interesting” new friends. She’s cared for, well fed, and her caregivers seem to do a good job. My husband still drives her to her doctor appointments. I cut her nails and trim her hair. We have moved back into our home. Now we can fly across country to visit grandkids. We can drive six hours to help a daughter move. We can get out and do a few chores, projects, or gardening together. We can meet with friends. But the very best thing is we are able to go to see her almost every day because it’s so close to home. We can meet her new friends there, maybe cheer them up, too, while we’re visiting her. And we can sleep through the night.
Labmom: Thank you! Sister 1 has made it known she's not up to being executor and wants to decline. I researched how to decline and for me to accept being executor. I have a form in the computer all ready to print for a notary's stamp that has S1 declining and for me accepting. I'll run it past Mom's lawyer before it's required. I have all Mom's accounts and her house all set up (joint ownership of bank accounts, Transfer on Death, those types of thing), it shouldn't be too bad to get it done.
While it is nice to run things by other family, to be sure no one's toes are stepped on, sometimes this cannot be achieved. Since you have all the power vested in you, take charge and leave them out. If they complain, tune them out. You can try to explain if they question it, but if they start in on you again, hang up the phone. No one needs that kind of abuse.
Since you are already paying someone to watch mom (useless niece) so you can get errands done, why not hire someone reputable who WILL do some additional chores, given they are in the contract? It may take trying several before you find the right person, but once you have that person, pay them for times you need to run errands AND time to be YOU.
During that YOU time, find like-minded people so you have people to talk to. Join
a club or gym or whatever you like to do. You DO need time for yourself. Once you find new friends, invite them over during quiet times too. You deserve a life, and your sisters are not going to grant you one. It is times like these that I am thankful I never had a sister... :-o For what it's worth, I have two brothers, and have some issues with both (more so the younger one, but older one can be a pain too!) I am not physically caring for mom, but I get all the rest. Unless it involves the condo and big expense, I don't even bother consulting with them anymore (only two of us are DPOA and as of now only I deal with the paperwork and finances, he does nothing.) If they wanted a reckoning, I can give them one - I take nothing for what I handle unless I had to pay for something for her or the condo with my CC, so they cannot point any fingers at me!
Again, break away from the sisters. Mom and You should be your only focus. Find a GOOD backup care-giver for respite and errands and HELP for you (never mind what sister said, YOU could use the help too!)
Here's an important tidbit about Mom being in her home and why us sisters are working to keep Mom here: she'll never see a nursing home--for better or worse. Mom has always said she'd never go to one. She wanted to stay home. I second-guessed our decision to support in this last year when a friend of mine, an MD whose specialty is geriatrics (gee, how much better can that be!?) I thought seriously about it, but coming here I decided there's just no way. Yeah, I'm POA for everything, but she's staying home.
Why are we girls committed to Mom staying home (or when her dementia is so bad she doesn't know this is her home and she and I can sell this house and move to my sister's) and the house gets sold?
Mom's had a hard life and she suffered for us kids. As a girl she had to drop out of school to support her mother and grandmother who were ill. She married a man who was an abusive alcoholic, our dad. She saved us kids from him and took it all herself until she couldn't take it anymore. She left him but then we lived in the midwest where she had no one--her people were all back East. Back then there wasn't much in support services. Instead of giving us to the state she kept us together. We were dirt poor and she went hungry so us kids could eat. She never complained. She's gentle and kind and never says a bad word of anyone.
So, that's why us girls are committed to keeping her home and doing the best we can--for better or worse, but that's Mom's wish and we intend to do our best. Us girls might bicker or snarl in fury, but Mom'll never know about it. What makes it so hard are my sisters' behavior toward me. I'll just keep doing the best I can.
Thank you all for your support. YOU are the reason why I'm managing.
Start a new routine - you'll give them information on medical & money issues in direct proportion to the help you get from them so no help=no info - emotional blackmail is still blackmail - hire the people needed even if you need a reverse mortgage to pay for them - if mom has a house then that is money that should be spent on her care not to be saved for your sisters' inheritances
Start by giving yourself a fee for doing a 24/7 job - even a few hundred dollars a month will help you emotionally - there are 5040 hours in a 30 day month so even at 10 cents an hour that's $540.00 which is a bargain for the rest of family - don't sell yourself short because it's been a 100 years since 10 cents was an acceptable wage & slavery is illegal now! [$1260 is 25 cents an hour]
Ditch that niece because what you are saying is that you can't trust her - money would be better spent with proper help but now it's almost like you are babysitting her while paying her - family or not she is not meeting the job expectations - yes she should vacuum & not sleep - you'd have fired anyone else by now so start with this
If any of you have a tough day and wonder if you make a difference in the world, tell yourself, "Yes, I do!"
I'll come back when I get some more time and answer some the questions.
Thank you all! {hug}
I was not POA, Primary on the Health Care Proxy or anything really except the 24/7 caregiver. I have 4 siblings and in the last year and a half, they provided no help at all. And prior to that, very, very little. So I understand what you are going through. In a way I'm glad they were not around, less aggravation that way :)
Anyway, POA only gives you authority over her financial affairs. The primary health care proxy is what gives the authority for medical care. At least in the state of NY. I was able to get everything done I needed by pushing past the no's and just pushing until I got what I needed. Mom's doctors knew I was the only sibling that cared, so they never gave me any trouble.
What I did to get through the process was hire in help. I knew what my limitations were. Plus I had to work. So it drained a lot of my finances because the POA wouldn't cooperate with providing money from my mom's account. Which is a whole other conversation. But I finally moved Mom on to Medicaid so I could get home health aide service covered. Sad that you have to be on Medicaid to get that type of service. But it is what it is. It cost a fair amount to get that done. But without it, I would not have been able to keep my job, my sanity and keep mom home per her wishes.
I'm grateful that I hung in there and overcame all the obstacles. I have that to comfort me now that she is gone. The other siblings have their regrets. I have none. Well maybe a few from years back. :) Do what your heart tells you to do.
Reach out here with any further information you can provide so maybe we can help you with your decision.
Listen to your sisters' concerns fully, and then express your concerns. Together decide who will do what, who will pay for what, who is in charge of what, and what will happen if one of you doesn't do what she is supposed to do. This includes your niece's care of your mom. And write it all down so you have something to refer to if there is a disagreement.
In regard to steroid injections, they help reduce inflammation and pain in the short term, but steroids break down connective tissue, which can make things worse in the long run. I'm not saying they aren't needed. I've had to have IV, oral, and rectal steroids myself, so, yeah, sometimes they are necessary. Please bear in mind though that one common side effect of steroid injections is pain and swelling for the first day or two after the injection:
webmd.com/osteoarthritis/corticosteroids-intra-articular-for-osteoarthritis
https://www.webmd.com/arthritis/steroid-injections#1
I totally agree with everyone else that your sisters don't need to be involved in day to day stuff about your mother. If they start to bully you, just say in a sweet voice, "Oh, I have to go, talk to you later, love you" and hang up immediately, don't even give them time to say goodbye. There are books on how to deal with difficult people. That is one of the best ideas I got out of it. You are too busy to put up with a lot of stuff from anyone. If they call right back, let it go to answering machine. If they say anything, just say, you had to go. If they start bullying, repeat, "Oh, I have to go, talk to you later, love you". Also, just like we have caller ID on our phone to discourage sales calls, we can also use it for people we just don't want to talk to. You know the old saying, "if you can't say anything nice, don't say anything at all?" Same goes for listening, if they aren't nice, you don't have to listen.
Fire your niece and hire some professional sitters so that you can get a break. Don't let your sisters bully you about it either. If you are living with your mom use her funds to pay the household expenses. If your sister doesn't want to be executor of the will, make it official because I have a feeling she wants that power but just wants to moan about all the stress it entails. I promise you she will probably want to be paid for being executor. Sounds like you are trying very hard to be inclusive but it's time you stand up for yourself. Don't punish your mom by leaving just do what is right for her and don't bother with your sisters opinions. If the sisters use them not taking mom so you get a break as a threat then tell them fine, get her that shot if it makes her feel better and then use mom's funds to hire someone to sit for a weekend or put her in respite care,
Sounds as if your mom needs 24/7 care if that is at all a possibility. Do in depth research and interviews before you decide on an in home caregiver. They all promise everything you need, but seldom deliver. Same goes for live-in facilities. But continuing to use family for care that requests to be paid and then complains about the job you do will eventually affect your mental and physical health and then you’re no help to your mom or yourself. If you leave mom in her home, do not be afraid to set up nanny cams or surveillance that’s powered by WiFi, which allows you to observe from another location. You will want this trust me.
If the doctor seriously believes that your mom will not be here in 6 months, that doctor has a responsibility to see that you are provided with information about hospice care. She will be cared for in her home or facility (if you go that route) and is 100% paid for by Medicare (hospice not in facility living expense). The RN assigned will make sure that your mom gets every type of medical treatment in her home. You no longer will need to transport her for those injections or any doctor appointments. All medical supplies and medication, nursing, doctors, showers and so on are completely provided and covered by hospice Medicare. Please talk to your mom’s primary care physician. Hospice will also provide some sort of counseling for you as you continue your journey. You need someone that supports what you are doing emotionally and they have a lot of information to help you along the way. Your family members will never be on the same page as you because they are not living the caregiver experience. They will never understand or appreciate what you do. But they will always stand ready to judge you. I do not understand this phenomenon but I have stopped trying to accommodate my siblings and I’m much happier (for lack of a better word). Take some of the stress off of yourself because literally no one else will. I do not understand what makes siblings act this way but over the last few years I have found that it happens in every family dynamic. The hospice counselor has told me that it is almost always one child that takes on this responsibility and the other family members just complain or want to watch to make sure you’re not spending all the parents money.
Get help for your mom. In home care or an assisted living facility or memory care. Talk to her doctor and bring in hospice care. You need some assistance and the sooner you accept this and get help the better off you and your mother will be. I’ve had to do this in my own and you will too. If you need more help or info, reach out to me here in this forum. Best wishes with your journey and keep reaching out for info and help.
Now I do 24/7 for my aging DH (96 yo) and I only do what I can do. The rest can wait for another day. I get the dishes and laundry done, I tend to his needs and if the dusting doesn't happen? Life goes on.
Pick your battles and remember not to wear yourself out. Your mother's needs are important. The housecleaning not so much. Since I have trouble getting away for more than 30 minutes at a time, my sister does some of my shopping for me and I do the rest online.
For almost 2 years, I had trouble trying to get away for even 30 minutes. I would go outside and mow for about 30 minutes and when I came back in, DH asked where I had been. He would forget that I told him I was going to mow while he napped.
Hang in there girl, you are a blessing and will be blessed. Just don't worry about anything not absolutely necessary.