Mom is living alone. I go daily to clean her house and make sure she gets dinner. I am basically the maid, cook, laundry girl, driver, social planner, everything. She does not reimburse me one penny. Typically I pay for opera tickets, ballet, etc. I just had her trust redone as it included someone we do not really know and have no connection to, which was a remnant of my step-dad's will from 11 years ago when he passed and everything went to mom. I let go her caretaker/cleaning lady due to concerns about missing items, not doing what is asked, staying late, etc. I have a new person who basically stays there 4 days a week for 5 hours a day socializing with mom and making sure she gets lunch and her vitamins (she is not on meds, she is very healthy for a 90 year old). She sleeps like a rock so far and wakes up doing fairly well. She has lost procedural memory and will ask how to do some things and gets along well. I am with her Fri tru Sunday most of the day and afternoon and evenings M-Th. I want to keep her at home and have help but not sure if will be acceptable in the future when she declines. Has anyone done this? Thank you.
Two and a half years ago, they started paying a caregiver from care.com three times a week to help with their hygiene.
My brother, who lives around the corner, took over the handling of their finances and home repairs, etc.
My brother and I made their home “elderly friendly.”
As both parents declined, they paid for more caregiver shifts.
More decline, more caregiver shifts,
Soon they were paying for 24 hours of caregivers, seven days a week.
I was handling their doctor visits and medications and doctor communication (I live in a different state). I paid for supplies and items I thought would enhance their lives as they aged. Their caregivers were taking them to the doctors.
As of May 1, they’ve been on hospice care.
In short, my parents were able to do it because their savings were put towards paying for round the clock caregivers, my brother managed their finances and home, and I managed their medical and comfort needs before Hospice came on board.
P.S.: I have left out a lot of details— the hard work, the emotions, the agitation, the hallucinations, the falls, the hospital visits, the crying, the sleepless nights, even more falls, figuring out which medications work and don’t work, UTIs, yelling, dealing with doctors who don’t know anything about dementia, hiring and firing caregivers, witnessing two human beings deteriorate, etc., etc.
I kept my Husband at home. Not sure if I could physically do now what I did then though.
And my house is one that was built handicap accessible. So I had a great advantage. (and an advantage for me as I plan to remain here until they tie a tag on my toe and haul me out feet first)
I had to learn to use a Sit to Stand, then a Hoyer Lift,.
I had to learn to change a brief while he was in bed and not soil the sheets below him. Also had to learn to change the sheets while he was in bed.
Had to learn to change a brief while he was sleeping
I had to learn what to look for, listen for while he was eating and drinking.
I had to learn what he wanted since he was non verbal.
And this is the tip of the iceberg.
Now I have to ask you why are you spending YOUR money on things like opera tickets and ballet tickets for your 90 year old mother.
You should be getting paid for your caregiving.
You should be getting reimbursed for the things you pay for.
Are you POA? or her Guardian?
If neither how did you get her trust redone?
Your mother should probably have someone there with her 24/7 not just a few hours 4 days a week.
Take all this as you wish as I am of the belief that a person with dementia should not be living alone. There are far to many things that can happen in the hours that no one is there.
What if the "guy from the electric company" knocks at the door telling her he needs to inspect the breaker box? would she let him in?
What about a young lady who says her car broke down and could I please use your phone to call for a tow? would she let her in?
What happens if mom decides to go get the mail at 3am...and does not return because she lost her way? how long would it be before someone would discover she is missing?
My dad would get up in the middle of the night and sneakily grab what he thought were his car keys. He’d head for the garage so he could drive to “work.” Someone always intervened before he got out of the driveway. I shudder to think what could have happened if he’d managed to leave the house.
Do I recommend it? No. My ex's decision to become his parents' full-time caregiver 150 miles from our family home contributed to the demise of our marriage, and it caused him a lot of stress. All his hair fell out the last year his parents were alive.
I wish you peace and strength for you and your mother.
Please find a good memory care facility for your mom! She deserves professional care, and you deserve to be relieved of the horrendous burden of caring for a 90-year-old dementia patient who will only get worse, never better.
This woman was still mobile and the Alzheimer’s wasn’t too bad when she died. Apparently she was never at risk of leaving the stove on, running the bath until the tub overflowed, wandering out of the house alone, etc.
I don’t know how often the is type of scenario is possible.
My dad had frontotemporal dementia and there is NO WAY he could have lived on his own once it took hold. He did lots of crazy and dangerous things, lost all sense of safety, and acted odd with other people.
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 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.
Dad thought he was in a hospital for the last couple months of his life. All that work to help him die at home, and he didn't even know where he was.
People like to believe that dying at home preserves their loved one's dignity. It does not. This is what dying at home looks like, and I'm not doing that to my family.