I went back to work in September part time because staying home with my mother who has Vascular Dementia was getting to me. Now she has gotten worse and hospice comes in to help some. She falls a lot and can’t really talk that much. My husband cares for her while I’m working. But I feel like that’s not fair to him since she is my mother.
I just don’t know what to do. Any suggestions?
I was a caregiver to both parents in their own home. That's where they wanted to die. It took them a total of 5.5 years of actively dying before both of them had finally passed. I've posted this before, but please read.
On dying at home: This is what my dad wanted to do, and he did. He had no idea how hard it was for me. And I had caregivers to help. Also a housekeeper once a week. Finally it was over.
So let's walk into his home, a beautiful South Florida villa. He'd been sick for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.
His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either.
The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all the room that we needed between trash pickups). Always laundry to be done.
Dad crying that he wanted to die. Hospice doctors, nurses, a minister and PTs in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.
And then again for my mother.
This is what dying at home looks like. I'm not doing that to my family.
Beverly, I wish you luck.
You came to a Forum of strangers to ask if you should quit your job .
A job you went back to because you are burned out . You say your husband is not burned out , although you still feel bad by going to work . You also say below that you promised your parents that you would care for them no matter what .
My question to you is , if you were the ill elderly person , would you want your husband or your children ( if you have any ? ) feeling like you do now ? Would you want them burned out and simultaneously feeling so guilty that they have to come to a Forum of strangers because they do not think they have the option of placing you in care ?? Would you have someone promise to take care of you at all costs to their own , health, mental health , financials, marital impacts etc. ?
Your mother may not have wanted you feeling the way you do now either . When those promises are made the elder does not always realize how much that can impact the caregiver’s life .
If she doesn't qualify financially for Medicaid, great! That means she has assets and can pay for her own memory care. Sell her house if she has one, cash in her savings accounts, and get the professional care that your mother needs and deserves.
Most likely her mother won’t even know where she is soon , or maybe she already doesn’t know where she is .
Your mother needs to go into a NH.
I left my career to care for my mother, who was in a high-end nursing home (aka warehouse for the elderly) that was part of a continuing care retirement community where my mom and step-father (of 30+ years, after my dad died) had bought into "Life Care" for hundreds of thousands of dollars (ugh!) IMO: The care was one step above complete institutionalized neglect. The more care you needed, the less you got in proportion to your needs. My mom could not initiate communication, but she could hear and understand, yet - of course - the staff were not trained to cue her (e.g. are you comfortable?; do you want to get up?; is the TV loud enough? I stepped in to be her voice and provide some quality of life. My brothers, not so much. :-|
I have NO REGRETS. It was the most meaningful thing I have done in my life. YET, not everyone has the resources to do what I did. I was not rich, but had enough to get by, and at some point before I used up all my savings I initiated my Social Security; that and a small pension are my fixed income. I lost 5+ years of work and contributions to Soc. Sec., and have not worked full-time since my mom departed. I live frugally, but comfortably. That was my trade-off, and for me it was well worth it emotionally (I could not bear to see my mother treated and neglected as she was) and spiritually.
Consider your options. Only you can make the right choices for you.
Peace.
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