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She doesn’t think it’s her home and is always asking to go home.

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If there are unlimited funds, as in someone with a good deal of savings tucked away, then this is a choice. For many it is not a choice, as the cost of in home help is quite expensive. Then, too, if in home help is required there is a MPOA/general POA involved in the arranging of scheduling, meals, and any assortment of other things.

If dementia is now so progressed that your loved one cannot recognize that she is in her own home I would suggest long term care in as good a facility as she is able to afford with her assets.

I wish you the best of luck.
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Memory care. Someone has to manage home care and pitch in sometimes, and it's difficult. No matter where she is, she will probably keep asking to go home. It's what dementia patients do.

Memory care will certainly make it easier for you, and you can still be helpful.
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Memory care provides age appropriate social programs that are more creative than I could ever think of
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Is mom living with you? or are you living with mom? or is mom living alone?
How much of your life have you "given up" already? Do you have a family that you need to add to this equation?

Enough of my questions...
First "HOME" is not just a place.
Home can be a TIME. A time when she was well, a time when she was happy, a time when her family (mom, dad, siblings) were with her.
Home can be memories. When she was a young girl, a young wife, a young mom.

Now the question to keep mom at home or place her in memory care.
Is home safe? will she have to go up and down stairs? Are there wide halls and wide doors so the use of a walker or wheelchair will be easier? And eventually the use of equipment like a Sit to Stand and a Hoyer Lift.

Are the bathrooms large enough to get the equipment in along with 1 or 2 people to help?

Placing someone in Memory Care or Skilled Nursing is not an easy decision.
If you have bade that decision it is not one that came easy so do not let anyone tell you, or imply that you are not doing the right thing. No one else knows what you went through to make that choice.

I tole myself that I would keep my Husband home as long as it was SAFE. That being safe for HIM for me to care for him and safe for ME.
Everyone has a "line in the sand" that will end up make the decision. You do not have to justify it.
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Thank you for asking this question. You've made me think about our family's decision to move our dad with dementia to assisted living with memory care. We initially wanted to keep dad at home for as long as possible knowing he would be in a familiar environment, but his resources would be used quickly if we hired full-time (24 hour) care. Now that he's in assisted living, while it was a HUGE adjustment for him, I see the difference in the level of care he's getting vs. being at home. He is eating much more nutritious food (luckily, the food at his community is really good), goes on outings, has more than one caretaker, socializes with his fellow residents, is offered daily activities and chair exercise, gets PT and OT that Medicare pays for, and has a nurse practitioner visit him twice a week. Dad misses his home and often asks when he's going home, has been angry at us for moving him, and we know he's receiving wonderful care and is in a safe environment. If I had to make this decision again, I wouldn't change anything.
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I can tell you that if she lives until she reaches end stage dementia it will be very difficult to provide the kind of care needed in a home setting, even with 24/7 caregivers. My mom became completely physically and mentally dependent, she could not feed herself, dress herself, walk, talk, toilet or even reposition herself in a bed or chair. She didn't always know her own name let alone remember her family. At the nursing home they not only had shifts of workers they had lifts to get her in and out of bed, a kitchen that provided various tasty pureed meals, an RN on staff, visiting foot and dental care, hair care, and the most appreciated amenity was the big tub where she could be immersed for her bath twice a week. Yes there were definitely negatives but it's all a trade off, even though I spent a lot of time there it wasn't nearly the level of oversight and care I had been providing previously, and I was still able to go home at night and sleep well knowing she was being looked after.
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MiaMoor Apr 2024
I think that the point about sleep is crucial.
Caregivers cannot perform optimally without sleep. Also, a lack of sleep is a factor for getting dementia later in life - our brains need sleep.

There is nothing wrong with placing elderly relatives, who can no longer take care of themselves, in a care facility. It's more difficult when the elderly relative does not have any cognitive decline, and then it may be advisable to look for other alternatives (such as home care) first, if possible.
But nobody should ever feel guilty about making sure their loved ones are cared for, to the best of their ability - financial, physical and emotional.
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Hi Hapvalley

my sister and I alternated living with my mother over the course of the pandemic, about 4 years. By the end of it I was a wreck and my relationship with sister was eroding. My mother was also getting worse and her behaviour was absolutely horrible. I took it upon myself to get her into a good LTC home, and while it wasn’t easy, I feel it was the best decision because her mental and physical health has stabilized. She has round the clock care, nurse practitioner, RNs and PSWs. The doctor visits every Thursday and she loves her care givers.
We visit almost every day but we are free to get on with our lives. I want to be happy, and make happy memories, I don’t want to live with trauma and have horrible feelings about my mother which was the way things were going. I hope this helps.
I agree with everything Fawnby said. Someone has to still has mange the home care and that can be a stress in itself.

norasdaughter
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FarFarAway Apr 2024
I hope you and your sister are doing better. I shared the care of my father with my mother and the toll was immense so I can relate. I Wish you healing, happy times and memories.. lots of them :)
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Your mother will do the same thing in Memory Care Assisted Living.....ask to go home. Home is a place in time that represents comfort and lack of fear or confusion, not a brick and mortar building. Therefore, no matter where the elder with dementia lives, they're never "home".

What many people fail to consider about in home care is the likelihood of resentment setting in. Having their privacy stripped away. Having an elder repeating themselves 1000x a day, asking you the same question every 2 minutes, even WITH full time care.....they are still taking over your home. Smelling it up with incontinence, having accidents on the rugs and furniture. Trying your patience like it's never been tried before.

If the elder is living in THEIR home with full time caregivers 24/7, there's less to contend with and less resentment that may occur. You'll still have to deal with emergencies and scheduling issues, supplies, groceries, medications, and coordinating doctors appointments, however, whereas all that is taken care of FOR you in Memory Care Assisted Living. Yes, you'll still have to order incontinence supplies from Amazon if you don't want to use theirs, and snacks if the elder likes them, but that's about it. The doctor comes to the facility, along with lab tech's, xray tech's, all sorts of things. The doc orders the meds and they're delivered directly to the AL and dispensed by the QMAPS. Food is cooked and served to the residents, along with snacks, and activities are scheduled too.

The caregivers MUST be watched at home too. Nobody should be immune from suspicion these days, in managed care or home care.

My grandmother lived with us while I was growing up. Mom and she were at each others throats constantly, but mom was the martyr for taking her in 🙄. Who cares that my life was ruined, or moms mental health was in ruins too, or that gram had a miserable life? The Almighty Obligation superseded common sense and everyone paid the dues.

The moral of the story is this: Do what's best for EVERYONE in this situation. Dementia is a terribly difficult thing to deal with. The staff at my mother's Memory Care Assisted Living facility did a fantastic job of caring for her and even though I still did a ton for her, she wasn't grinding on my last nerve 24/7. That's worth it's weight in GOLD.
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Musiceduce Apr 2024
One of my girlfriends had a situation similar to yours. Her mom took care of her grandmother. She never got to bring friends over, it was such a burden, and one that cannot be undone, even though she’s now 70 years old.
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She will ask to go home no matter where she is, that’s just part of dementia.

If you have the funds, I’d say home is better IF you find good, quality nurses, nurse assistants and other trusted experienced caregivers. Home care 24/7 will be cost a little more than a nursing home, however you remain in control.

Also, please don’t think you can do it yourself, even with other family members. Its gets old fast. It’s grueling work. Family members may “poop-out”, then you are stuck. If you have enough money, pay for nurses and aides. There are agencies that will help you find and vet them.
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Beethoven13 Apr 2024
Agree. My father and parents saved their whole lives. I am using their money for care in their home. Our caregivers (some agency and some private) are Excellent. You do not need nurses. Experienced caregivers can provide the custodial care most people need unless there are IV treatments or extreme wound care. Hospice expects the family to do everything. They don't provide a nurse for anything but a quick visit once a week for vital signs and the supplies and DME ( durable medical equipment - beds and lifts) and the wonderful bath aides. Even the end of life care is expected of the family, our hospice nurse told me a week ago. Experienced caregivers will make it possible. They can be difficult to find but ask everyone, word of mouth and others in similar situations. Rehab places, hospice places often have a list of people who are caregivers. Choose someone close to you if possible so commuting is not an issue and it is convenient for both parties, and who has experience with high needs clients. Call references. They are out there. sometimes local obits provide leads.
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There is NOTHING you can do that will bring your parent peace and the quality of life that she once enjoyed. No matter how much you love your parent and feel like you should care for them as they cared for you, having them at your own home or their home will not give them what they want, and your own health (physically and mentally) will decline. If you can afford it, memory care is a good option, and you can find good places. Full time help at home is an option, but an expensive one, too, and the quality of caregivers varies. You may have to go through a few to find the right fit. I am almost 75, and we tried having my mother live with us when my dad died four years ago. We did not live close to them, so we really did grasp how my mother had declined. She fell so often and we had a hard time helping her physically, lifting her, bathing her, etc., and I ended up having a shoulder replacement and injuring my back (I have had two back surgeries in the past, so my back has never been great). My husband had heart problems. Luckily my mother finally understood that assisted living was the best for all of us. We are lucky that she is such a gentle lady, but she has reluctantly accepted that she will never be able to go back to her home and has made a few friends. It takes time, patience, and the reality check that nothing will be the same. Remember, our parents took such good care of us, but they knew we would eventually grow up and learn and take care of ourselves. Our parents will never get better, only decline, so you must keep that in mind. We have the best intentions, but we are not superhumans. We, also, should prepare ourselves for the fact that someday, we, too, may be in the same situation as our parents, and perhaps put in place how we need to take care of ourselves when the time comes, before it is too late. My parents never did and hid a lot of their problems. I know that my husband and I are taking notes and hope that we do not try to manipulate (yes, our parents do manipulate us), and have talked to our kids, and do not want them to feel any guilt or pressure like what we have gone through with both of our parents. Whatever you decide is the right thing, so do not put that guilt on yourself. Personally, our experience with assisted living and knowing that the memory care unit is, also, ready to have her should she need it, is the best thing for my mother, and she is doing so much better there than when we tried having her in our home. Is she happy? No, and she never will be. But she is safe, she has us close by, and she is as close to being happy as she will ever be. Good luck to you, and make sure you take care of yourself.
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Katybr Apr 2024
Perfect answer!
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