Anyone consider giving up live-in caregiving?

Melt away, dear lady, and keep venting. (oh. are you a lady? I can't tell from the moose picture. Vent away in any case.)

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.

You are POA. You do not have to consult anyone about any decisions that you make for your mom. You can schedule a steroid injection and take her, and DON'T tell your sisters. If finances permit, hire people to sit with mom so you can have a break. Do not count on your sisters to take care of anything. I have a brother-in-law who wanted to get his nose into my aunt's care and so I gave him a schedule. Needless to say, he cancelled and he has not been around since. It usually comes down to money. If you can, place her in a facility that is TRAINED mentally and physically to care for people in your Mom's condition. Loving someone cannot be equated with taking care of them when you are not equipped to do so. If you are not financially capable of placing her in a facility, contact your local council on aging and start the application process to get her assistance. You will be a much better caretaker when you handle what you are capable of handling and not everything. I placed my aunt in an assisted living facility and she has a new lease on life and so do I. No one wanted me to because they wanted the money........do not sell yourself short....you are doing a great job. NO ONE understands unless they have been a caregiver.....

Yes, we did. My husband brought his 90-year-old mother across state to live with us two years ago. A live-in sibling there had continued to ignore Mom’s doctor’s directives regarding her diet, hygiene, and safety. Her home had deteriorated: bad plumbing, no AC, mold, inadequate heat in winter, roof leaked into rooms. She could no longer safely do stairs, so slept on a cot in downstairs den next to powder room (no tub or shower meant no more baths). He kept her isolated with absolutely no social interaction. He continued to stubbornly refuse to accept family’s help with any of those issues, even turning away repairmen.

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.

Who pays your niece for sitting with your mom? As POA aren’t you controlling the finances?
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.

I cared for my Mom who was bedridden 24/7 for nearly 2 years in my home. I have no siblings. My husband worked full time but helped a bit when he could. From communicating with other care givers both on this site and friends I had going through the same or similar with a loved one, I learned that the big problem was always the siblings trying to control but not actually helping, and not having respite or help. When hospice came on board it was a huge relief though I still did most things myself. Hospice did offer a week long respite for my Mom in a nursing home that was paid for by medicare since I was the only care giver. I was planning the week off for Spring but my Mom passed away a month and a half before the respite. My advice is that since you have the POA already in your favor, if you can get a bit of outside help. Is your Mom on hospice? I know the first inclination is to look to family for help but I have learned that this does not always work so well. Sometimes a stranger can become a friend and give us some help. My hospice aides for Mom were a God send. Take things one day at a time and remember to take short breaks, even to just sit and watch birds or have coffee. The little breaks and things you do for yourself add up.

I'm so sorry. Our family dynamics never were resolved, and Dad passed right after Christmas. I placed Dad in MC (memory care) 8 months prior to his death. I still hate that, but I don't see how I could have taken care of him. No easy answers when you care so very much about the person you're caring for. I had and have a supportive husband and two grown daughters nearby, along with grandchildren, and even a distant but very supportive DIL. If you're alone in this, I don't see how you can keep going. Much respect to you.

See an eldercare attorney about getting her Medicaid ready for nursing home placement.  you can't keep her there by herself.

You are being "held hostage," emotionally speaking, by your siblings. Time to "assert yourself." As POA, you are not required to inform them about every little decision you make for mom. Do what is best for her and ignore them - since they are unreliable. Are there programs in your area to "help seniors stay in their homes?" It's possible they may be able to provide some respite care for you, supply transportation to appointments, etc., at low or now cost. Don't try to be a martyr.

I might add that when my own father had dementia, my brother the ATTORNEY was totally useless because he could not "deal with" the situation. Because I was living 8 hours away, I placed dementia-dad into assisted living and sold his home so there was money to pay for his care. (It was clear that he was no longer safe living alone.) It was the best thing I did for him, for myself, and for family dynamics. You might look into some type of care arrangement. Ignore the objections of your siblings.

Your sisters sound horrible. Your life is valuable. If you have a physical and/or mental breakdown, everyone will suffer. The responsible thing to do, in my opinion, is to secure 24/7 care for your Mom. In my case, I had to take my Mom to the ER and DEMAND help with placement. Then you can be with her all day, everyday as her daughter if you choose without having to do groceries, cooking, cleaning, laundry, bathing, toileting, dressing, medications, etc. It’s all too much and I feel for you. You are a saint and are being treated badly by those who should be so grateful. No easy answers.