Hi all, my mom has dementia and recently had to go to the hospital. She had trouble walking and was talking incoherently. They original thought she either had a stroke (since her bp was 200/100) but that was ruled out after MRI and CT scans. They then said she may have an infection but all the tests came back negative. It may have been her potassium levels since they have dropped in the past and had to be hospitalized for the same issue in the past. During this time the hospital suggested I should either put her in an assisted living facility or get hospice care for her at home. My mom has always said please do not put her in a home. It has become very difficult to take care of her as I am by myself. Luckily I have a job where I can work from home for now but that could change. Her alleged friend for over 40yrs basically disappeared and hasn't really visited her since my mom developed dementia. Everything has come down to me. I have been thinking about putting her in hospice care at home. I want my mom to be comfortable and avoid going back and forth to the hospital. But I feel like I am giving up on her if I choose hospice. Am I wrong?
Hospice does not provide all that much hands on care. A nurse will take vitals once a week and perhaps you'll have an aide to bathe her.
The thing that made me sign up for palliative care (not hospice, but same underlying philosophy) was that my mom's physical ailments were no longer "fixable". She had CHF which caused periodic fluid buildup around her lungs. After this was drained twice, the pulmonologist sat me down and said "stop poking holes in your mom. It's not fixing anything. It's just delaying the inevitable". Coupled with the fact that every trip to the hospital set my mom back three steps made it very clear that we needed to let her get treated at the NH she was in.
The thing is, my mom was in a NH, so she had trained medical oversight of her very real medical needs. That allowed us to visit as her kids and to advocate for her best care. Mom probably remembers the awful NH's of decades ago. Find a good one.
I am curious who has suggested that your Mom's death is eminent, or that it will in all likelihood occur within the next six months.
Some are ordering Hospice now as extra care. But the truth is that there is little help OR care often enough in the hospice of today.
They will send an aid two or at most three times a week for a hurried bath, an RN once a week, have a clergy person and a social worker call you, offering little but a chat, and give you a nice bottle of morphine if there is pain.
This isn't really going to help you in the care of a mom who may not be passing any time soon. I am afraid that Hospice has gone now into hedge fund territory, for profit and investment, a part of the military-industrial complex. It is automatic and rote. Some few good ones remain; rare as hen's teeth.
The other fear with getting hospice in when end of life isn't really near is that they may inadvertently hurry along the end of life with the administration of drugs, thinking that there IS some dire diagnosis.
So I would interview hospice very carefully as to what you expect, and what to expect from them.
As to promises we make to our elders when they want our assurance that they will never have to enter in-facility care, they little matter in the face of harsh reality.
There is no need for guilt on that score as you didn't cause your mom's aging problems and you can't fix them, nor should they ruin your own life.
As to grief, there is that a-plenty in our lives, and certainly in your standing witness to your Mom's losses.
I am so sorry you are facing this down. I loved hospice when, as a nurse, I witnessed it finally come from across the pond to us. It was a mission then and people who worked in it did it as a vocation. Those days are done and gone.
I wish you the very best in choices going forward and my heart goes out to you.
If your mother can’t afford memory care in an assisted living type facility , then she can apply for Medicaid and go to a long term facility .
In some states Medicaid will pay for memory care in assisted living . An elder care lawyer can help .
You can either get someone to come in and help or find a "home" for her. Either way, you aren't giving up on her, you are finding the best possible care for her while ensuring you mental, physical, emotional and potentially financial health is secure.
My mother is in a home as she needs a level of care I could never provide. She gets excellent care, social interaction and medical support without having to travel to multiple doctors' appointments. Her mental and physical health is by far better because she is in a home. It also allows me to care for my own kids, work and pursue things I enjoy.
As my mother’s Parkinson’s disease worsened, she required more care and I made the decision to stop working. I regret this decision enormously.
I wasn’t on my own like you are. I am married and have two daughters. Still, it was a very poor decision to quit my job so I could care for mom full time.
Please don’t wait until things worsen before you start to research all of your options.
Don’t repeat the mistakes that I made by feeling as if I had to do all of the hands on care myself.
I would suggest that you look into finding a good facility for your mom. Oversee her care and resume your life without being her full time caregiver.
Best wishes to you and your mother.
That means that 99% of moms care still falls on you or someone else.
My late husband was under hospice care in our home for the last 22 months of his life, and yes I did 99% of his care myself, although I did have to hire an aide to come put him on the bedside commode every morning so he could poop.
If you think it has been difficult for you before to take care of your mom, just wait. It will get even harder.
So please do what is not only best for your mom but for you as well. And to be honest I would be asking her doctor why hospice was recommended to begin with because like others have said, it doesn't sound to me that she's ready for their care quite yet.
Best wishes in getting this all figured out.
My MIL had a brief stay in the hospital some months ago. She was then deemed incapable of living alone, due to her increased dementia and general failing health. She's 92.
She also extracted from her 'kids' that awful promise they would never put her in a home.
So, here we are, nearly 3 months later with 2 of the 'kids' caring for their mother 24/7. The trade off days and nights. The oldest sibling tried to help out, but just couldn't stand it. He is now down to 2-3 4 hr shifts--maybe.
My DH is one of the kids. He's 71. His OB is 75, their sis (who is the driver of this crazy bus) is 67.
I live in fear that my DH is going to have another heart attack over the incredible stress that shoring up his mother in her home is having on him.
She IS in Hospice care, but they don't provide ANY hands on care. MIL refuses all outside care, so it's all on the 2 involved sibs.
What they SHOULD have done is move her from the hospital to a NH or MC center, and not brought her back home. Now we are just sitting here, waiting on the inevitable, which could take months and months yet.
If you truly want advice, a lot of people are going to agree with me that the 'promise' to keep a LO at home to the end becomes simply and completely unreasonable and unsustainable.
40% of CG's die before the person they're caring for dies. (Likely b/c the CG's are often the spouse). BUT--my DH is a not super healthy 71 yo--and his brother is 75 and not in good health.
This dynamic is slowly, but steadily ruining our lives.
"Homes" are not bad anymore. "Homes" provide the care they need, thus freeing family to be their advocates, visit with them, and appreciate the time left. If you take mom to your home and expect to care for her as she deteriorates further, you will regret it. You will get little sleep, little rest, and as for working, you might as well forget that. You'll be so strung out that you won't be a competent employee, much less competent caregiver.
It IS all up to you, and you call the shots (not mom). You won't be seeing much of her friend now. That's how this works.
Here's what I wrote recently about 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 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.
This is what dying at home looks like. I'm not doing that to my family.
My mother fought my brother & I for years, she lived alone in the mountains of NC, sat alone and watched game shows all day. Finally she had a slight stroke and was afraid to be alone at night.
We swooped her up, she had no choice, we moved her to Fl and she is in a nice AL, and she loves it! New friends, activities, bus trips and everything is done for her.
People her age do not have a good perspective on today, they are still living in the 1950's when homes were not as they are today.
Make the right decision for her it is no longer about her wants, it is about her needs.
I feel something is missing.
The doctors don't know for sure that your mom will qualify for hospice. They only know that she's old and infirm, but they can find nothing seriously wrong w her to point to, so confer w hospice. That's standard operating procedure in the hospital where the only goal is discharge, AD or dementia alone is often enough to qualify for hospice. "Senile degeneration of the brain" is the Medicare code hospice uses for non AD dementia.
Hospice at home will get mom a few supplies and medications for free and a few nurses, chaplains, CNAs and social workers to come by for a few hours in TOTAL each week. That's it. Leaving you the OTHER 23.5 hours per day to do the real caregiving. So how does this make you a person who's giving up on mom, I have no clue. Look at the situation realistically. I had my mother w dementia in Memory Care Assisted Living w hospice at end of life bc I was in no position to do her care at home. And no, I am not wrong or a daughter who gave up on mom...just one who knew her limits and recognized the level of need mom had. The dementia is what ruined her life, nothing else.
Wishing you the best of luck with all of this.
you will not get the level of care an AL or NH gives with Hospice but they will provide medical and other support for you and Mom