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.
Taking care of a person with dementia and other impairments is an extremely difficult and stressful job. Caring for someone who is likely to die soon is rewarding but very sad. But it seems that is not what might give you a meltdown. It is your sisters that are causing undue stress. So, if you really want to be with Mom for the rest of her journey, try solving the sister problem. (Easy for me to say. My sisters and I were a cooperative team!)
You have POA. Use your authority on your mother's behalf, starting this afernoon. You do not need your sisters' permission to make a medical appointment for your mother. That is your responsibility. And since you are the one with Mother most of the time, you not only have the authority you have observations and knowledge to make good decisions. Mother appointed you POA. She trusts you. Do what's right for her.
Being a live-in 24/7 caregiver is extremely difficult. In fact, I'd say it cannot be done successfully without adequate help and breaks. (Employment laws require this for paid live-in carers.) My advice is to hire help, with your mother's funds. I mean this sincerely. It can save your sanity. Don't rely on niece to vacuum. Hire a cleaning person. Do it! Hire in-home care for weekends. Hire someone to come in twice a week for 4 hours, so you can do errands and maybe even meet a friend for coffee. Or hire someone for 5 days a week! Reduce your workload, and get some breaks. Everyone told me that and I wish I'd acted on it sooner than I did.
Don't let sisters emotionally blackmail you. "If you don't do what I say, I'm not keeping my commitment to care for Mother this weekend." Don't depend on them, as they simply are not reliable. This is part of your duty to act in Mother's best interest.
My husband with dementia lived with me at home for 10 years, right through hospice care at the end. I managed to retain my sanity and disposition by having this kind of help:
1) weekly cleaning service, including laundering bed linens
2) person to distribute meds into daily/weekly pill boxes (hubby took MANY -- this was a great help to me)
3) bringing in restaurant or deli food often (not as expensive as hiring a cook!)
4) hiring someone for home maintenance tasks like shoveling, raking, cleaning gutters, etc.
5) using a volunteer service for someone to sit with my husband a few hours a week.
6) using an Adult Health Day Program two or three days a week
7) when hubby needed too much one-on-one for the day program, brought in a personal care attendant for 30 hours a week
8) when the time came, used hospice services
Other caregivers order groceries online and have them delivered.
In the ten years I only took one weekend off. If I had it to do over I'd try hard to do a few more of these.
If Mom's funds will not support this kind of paid help, post again about that, and people with experience will give you advice on that.
If she works for you then maybe you need to revisit the terms of her employment.
Tell us more about how things are set up.
jeannegibbs: Succinctly, thanks for your kick in the rear! ;-) Oh, yes, I'm female. (Hmm, I have a cow moose photo I should swap out!) I'll mull your suggestions. Paying for help is tough as Mom's finances are okay, but a touch snug. But I'll see about where I can squeeze some money. I refuse to pay for Mom's care, food, or house maintenance--I can just afford my expenses and I'm here at extreme sacrifice. Plus, I will, no matter what flack I get from Sisters, take good care of Mom and her finances and her house. They reamed me (after they had wholeheartedly agreed about fencing in Mom's yard and replacing a hazardous back deck and its cost) when I told them the final cost. They blew off the fact that I dipped into my savings to pay for half of the fence because of my two dogs. And you're right that they are not dependable. (Sister 2 tries to help even though she's often horribly exhausted.)
talkey: Thank you!
97yroldmom: Yeah, I'm the POA for finances (and health). I've taken care of Mom's finances for about five years. I developed a monthly "statement" of everything about Mom's finances (including property taxes and insurance) and mailed it to them so they could see every penny. Since I've been here I still complete a monthly statement though no one sees it. I've told them any time they want to see it, I'll open it up.
I pay Niece from Mom's money. Niece has physical and mental issues. I've repeated things she needs to know and do. She's on so many medications she often sleeps through half of her time. When she's here, I'm watchful and reminding her of things to do (yeah, like reminding her she hasn't given Mom fluids to drink). I get what I need done around the house but watch. Only when I'm satisfied that everything is "set" for the day, then I go out. This is one of those situations where by all rights she ought to be fired (if she weren't my niece), but I'd end up on the receiving end of a rabid, snarling, fur-flying dog fight from Sisters. Frankly, I'm protecting myself by choosing to accept this. At least I can get SOME time to myself and I'll take it.
It doesn't sound like you'd consider moving your mom into another home situation where she could be cared for...but perhaps down the road you might want to think about it. I was told the same thing when she was hospitalized 7 years ago - 'she may not live long'...well so much for that scenario. She may outlive me ... no one ever knows for sure. Do you you think is best - but you've been given some excellent advice here by other group members.
dementia-by-day.com/post/170533306210/sole-caregiver
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.
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.
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,
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.
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 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.