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.
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.
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.
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