Would caring for a parent with worsening dementia be better at home with full time help or better in a memory care facility?

Facility!!! Both my mom and dad were at home, and STILL asked to go home! It isn’t their usual home where they want to go. It might be their childhood home. It might be their spiritual home. Or they just want out of their current situation.
Dementia can bring on many extremely difficult issues - wandering, aggression, feces smearing... Things that are much more easily handled in a facility. And it can go on for a decade. It will wear you down, make you resentful and then guilty, make you wonder if you might die before they do.
Facility 100% if we had it to do over. My husband and I have resolved to check ourselves into a facility and never put our son through this.

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.

My dad loved his personal care home. They played bingo, cards, trivia and held parties. My dad smiled and laughed! A memory care home is very beneficial to those that love to socialize!

It can be a tough call, with pros and cons of each side, as you have already read here. I had my mom home with part-time caregivers for a few years as her dementia progressed. Started with a cleaning lady and then added a caregiver here and there until we were up to 5 days a week. But sometimes they were sick or quit and I was left holding the bag, on days that I often was babysitting for my young grandkids which made for a long and trying day. So, there are too many loose ends with homecare when you really need the help. So, I moved mom to AL. She doesn't love it and never will but my life is much better and I am her POA so am still very active in making decisions for her, making sure she has what she needs, etc.

So, if you're already burnt out, I would place her. If not, get some caregivers on board and see how long that can buy you before memory care becomes the obvious answer.

A memory care facility can provide specialist care, suitable activities, and the chance of socialisation far better than in home care.
If your parent was happy at home, it might be different, but they don't recognise it as "home" and are no longer attached to that place. There's no point in making life harder for yourself by keeping them at home.

At some point, in home care becomes more difficult. Many dementia patients lose the ability to keep track of time - day, afternoon, and night. They may sleep during the day and stay awake all night. They may demand meals and "entertainment" in the wee hours of the morning/late night since they lose the ability to understand what time it is... and the need for others to sleep.

Hapvalley: Most patients with dementia ask to go home, wherever they are, which does not refer to any fixed structure/brick and board.

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.

You have gotten a good mix of answers here.
Because there are many factors, each situation is somewhat different.

What is best for the one with dementia?
What are the needs of the one with dementia?
What can home care providers provide?
What is the toll and what are the rewards for the family and friend care providers?

Moving to an unfamiliar place is very tough on people with dementia.
A facility will have set meal times and typically not very good, nor very personalized food and activities..
Does the facility set up personal music for your loved one? If they don't that to me makes the quality of care very questionable.
No facility offers 24/7 care. Not one. Yes, they have 24/7 staff, but the floor staff will likely spend little time with your loved one and a response to a call light or other call for help may be very long.
You have virtually no oversight of the care and caregivers.
Are the owners (not managers) of the facility a known entity and can they be reached to talk with? If not, look elsewhere, because the facility is solely about profits - give your loved one the least care for the most the facility can charge.
Staff in a facility will likely change fairly often. People with dementia do better with familiarity and personalized attention.
Almost every, if not every, facility has rising charges.
Facilities may change ownership, or may be closed down by the state. This can cause other changes and/or even another forced difficult and disorienting move.
Etc.

Care at home generally requires attention to details to accommodate a person with dementia. (But there is a lot of technology that can help, and once set up can really help.)
Care at home can take an emotional and physical toll on care providers.
There may also be services in your area - like a daycare for dementia patients, and caregiver support groups - that can help easy the burden.


Paying for private care can be expensive, but memory care facilities are expensive as well.

Best to you.

She's better off in memory care. If you've already placed her, leave her there. If not, then find a facility.

No matter where she is, she will be asking and begging to go home. "Home" could be her childhood home or somewhere she lived when she was young and it was a happy time.

No matter where you have her living, you're going to get this. So it would be best to have her in memory care.

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.

My personal thought would be a good memory care facility close by (throughly vetted) where you could visit her as much as you wanted. You would get the help you need for her along with advocating/overseeing her care. You could put some of her favorite things in her room to make it more comfortable. You can also bring her favorite foods sometimes and do her laundry if you choose. It would be an adjustment for her. She will always say, I want to go home, even when she doesn’t recognize anything. You would definitely get the rest and life balance you need to be there for her without all the exhaustion and worry. For home care, you are looking at approximately $30 an hour. 24x30=720.00 dollars a day times 30 days=$21,600 a month for home care. Most facilities charge between 10,000 to 12,000 dollars a month. It all depends on how much care she needs (dementia/Alzheimer’s gets much worse with time) and how much you are willing to do. You could try part-time home care as well. It’s still so much more taxing on you then having her live in a full time care facility. All the best. I am currently sharing the care of my Mom who has stage four small cell lung cancer with two sisters, a brother in law, and hospice. She lives three hours away and I go two to three days a week, staying one night at a hotel. Honestly, I am so exhausted once I get home, that it takes two days to recover each time-basically, I’m tired all the time. She can no longer walk, barely feed herself, or have a conversation more than a minute. Two weeks ago she could sit up on her own and walk to the bathroom. It’s very sad to see her decline physically and mentally. The cancer has metastasized so quickly. I don’t think that she has long so we are just doing everything we can…until.

That depends . Is Mom living alone at home or with you ? If she is alone in her home, can Mom afford 24/7 caregivers at her home ?

If Mom is living with you , is that working out for you , or not so much ?

Ultimately , it’s for you to decide what is best for Mom and you/ your family .
Keeping Mom in her own home 24/7 can be expensive and then you are the backup if the staff does not show . The other option would be a live in . Maybe two of them to switch off so they get time off and can get out .

Personally and what I was told by doctors is that often there comes a time where it is too difficult for families to manage caring for LO with dementia at home and placement is necessary . You will know when you’ve reached that point . It makes a difference as well if the LO needing care is cooperative at home .

Imo it sounds to me that at this point Mom may be better in a facility , with others to socialize with and some structure and activities in her day . But you will know best what works for her and you and your family .

Memory Care. Activities, people like themselves and always someone chatting. My mom adjusted well to AL and now memory Care.

My BIL lived alone in his apartment, he had dementia. We had ring cameras in his apartment. With his family helping him it was hard because none of us could do it full time.

He fell outside of his apartment laid on the ground for 30 minutes before anyone found him. Good thing it was in the fall otherwise if it would have been in the winter he wouldn't be here today. He is in a nursing home and gets out more in trips in that nursing home then he was at home. He is a people person and that nursing home is great for him because he isn't alone.

If you are asking I would go looking at nursing homes in your area to see if you want to have them there or in the home. I know this from experience with all the help we had there were times he wasn't watched.

Prayers

We had my grandmother with dementia living with us for 20 years and it was really hard. If we could have afforded it I think she would have done much better at a memory care facility. She got hurt more at our house than she would have there. She would fall into things in the house and one time she fell and hit her head on a glass curio cabinet which wouldn’t have happened at a facility. She was also wearing socks and slid on our hardwood floors falling on her hip which ended up breaking on impact. Plus my mother was the one providing most of her care and she wasn’t feeding her the best meals. Lots of TV dinners. I think the food at a facility would have also been much better for her. She did love being there with us and was constantly thanking us for letting her be there but in reality I think her quality of life would have been better somewhere else.

I work in healthcare and I used to work at a care facility. They had lots of things for the residents to participate in. Daily activities, a hairdresser that came monthly to cut and style their hair, movie nights, bingo, and all sorts of things my grandmother would have loved participating in. She had dementia but she still liked going to the senior center for bingo. But when she was at the house all she did was sit in front of a TV. Not stimulating at all to help her mind stay strong. She would have had much more fun at a facility.

Live in care is my vote. The live care for my mom at this point is me. My brother comes when I have to go to work. Four years now. We have a care person who comes twice a week and cooks meals for us. (Huge help) Mom’s dementia at this point is advanced, she has visual impairment, not steady on her feet and in a multilevel home. A “senior death trap” as one sibling put it. She is never left alone now and we try to get her up and down the stairs at least once a day. It’s the only exercise she gets but keeps her strong enough for us to take her to a baseball game, or party, or a music event or the botanical gardens etc. or to see her 98 year old cousin who is in a care facility (not memory) after his family felt he could not do stairs. He stopped moving and is now always in his wheelchair. He is miserable. At least he can communicate when something is not going well at the care facility. In memory care, you will never know what’s happening when you are not there. A senior advocate once told me the quality of care at any facility is dependent upon how often the family visits. The last time my mother was in a memory care unit for rehabilitation, the first night I was there, three people fell. One time we returned to visit and there was a man begging for the nurse to help him because he had peed on himself. Two staff were within 15 feet and completely ignored him. If your LO can’t remember how he/she is treated how do you ensure yours is cared for the way you want? This is an example, to me, when “adequate” is not acceptable. Some people have no choice and have to put their LO in a home. My mom doesn’t even realize where she is in her own home many times now. But in the middle of the night, she gets up multiple times, and knows how to get in and out of the bathroom. Her surroundings have familiarity, and even if she sometimes forget where she is, I believe, she is better off surrounded by things and places she knows. If I put her in a home, it’s not going to alleviate the stress, it’s just going to change it. I would be there probably every day, but I wouldn’t know how she’s being treated and what happens to her when I am not there. Caregiving does take a toll, so it is a very personal decision. Sometimes we don’t have a choice. It’s very likely we will get to that point when we need to make that decision. Not easy, not perfect, stressful yes - but at least I know how she is being treated and cared for. Our mom is difficult so the live in caretaking from an outsider has not been a successful option. I frequently question if she would be better in a home where she would have more people to talk to but know that they don’t have the staff to engage her daily, take her to the events they schedule, help her feel relevant and cared for. She would need someone to pay attention to her which rarely happens in my experience. These are things to think about. We are constantly assessing. If you do opt for memory care, just keep in mind that you need to be vigilant about the care. Visit often and any time of day. Stay over every once in a while. You could try respite care first to see if you like the facility, but see if you can stay with her while she is there and find out what she would be doing every day for the rest of her life if you put her in their long term memory care. If you hire someone, you have to be vigilant too. We started using Ring devices when our folks started to fail which helped us see who was coming in and out of the house. Then we started using them to see that they took their meds (camera pointed at pill box). After dad died, we put one in my moms bedroom to alert us when she gets up. If no family member is also in the house with a live-in, these cameras can also be used to be sure a caretaker is working out. My brother and I believe quality of life is more loving than quantity. Every decision we make is keeping that in mind.

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.

Memory Care Facility!

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.

In my view, the best place to care for a loved one is at their own home, PROVIDED, the home is made dementia friendly and there is adequate and trained caregivers providing round the clock care.

Here is a summary of considerations in making the decision. More detail guidance for other considerations in my book "Dementia Care Companion":

Arguably, the best place to care for a loved one with dementia is at home, provided that it can be done effectively. To be viable, your home care plan must include a dementia-friendly home, a primary caregiver who has the trust and support of the rest of the family, and sufficient resources to fund the care process for the long haul.
·        Consider any stairs, ease of access to the bathroom and shower, and the level of noise and activity at home, including the presence of young children. Is the home environment suitable for providing care into the future?
·        Do you have the necessary help to care for the patient day in and day out, indefinitely? Understand that promises of help by friends and family may not materialize into action.
·        Are there daycare facilities nearby? Is it possible to drop off the patient at these facilities on certain days of the week so you can have a few hours to rest or tend to other tasks?
·        Do you have the necessary funds at your disposal to hire someone to help out as dementia progresses and care needs grow more challenging?
Physical limitations of the living environment may make it impossible to care for the patient at home, especially during the middle and late stages of dementia progression when the patient becomes wheelchair bound and their care needs grow more complex. However, it is often human-related factors and family dynamics that are among the most difficult issues complicating the care process, especially early on.

My mom has both worlds. She is in a MC facility and I have private caregivers for her 2 meals a day (lunch and dinner). Their responsibilities are to shower her, fix her hair, lotions on her skin, put her eye drops in, cue her, help her, be a companion to her. They also do her laundry and linens. She sometimes helps. They work 4 hours a day and it is a blessing to have that continuity of care for mom. One/one has been very good for her. She isn’t as confused or scared. Her skin is good and she has bonded with the same people for 2.5 years now who have been with her in 3 facilities. 1 facility lost their license. 2nd one declined in care and upped the price 17 percent. The third one allows cameras so i can see her and has the normal okay to great staff but mom has stable care. So….do not depend on the facility to give the care you want them to have. You will be disappointed. I did the job for 8 months and it was hard and i was always on. When mom was up, I was up. Having the facility care for her bed and food is a big help. Mom has snacks if she gets up hungry. If i didn’t have caregivers, I would be there daily just because some staff are wonderful and caring and others are just doing a job. Those people of just doing a job stress out a elderly person who is having a hard time concentrating and engaging. Mom has vascular dementia and almost no recall but she knows when something upsets her, she just cannot put in words what happened. (Camera helps).

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

Being at home is always better than a Nursing Home. If you have full time help. Thats a no brainer.

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.

Memory Care

Long term 24/7 is not sustainable and is too isolating.

Personally I think if there is enough money to financially to do it, I think good care at home is better, who wouldn't want good care at home.

That's just my opinion, others feel different.

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

This is called Sundowning and is a very common dementia behavior. She is thinking about her childhood home, way back in her memory where she felt safe and secure. My Aunt did this every afternoon, even though she was sitting in her home of 48 years.

https://www.agingcare.com/articles/sundowners-syndrome-133187.htm

The answer to your posted question is: it depends.

It depends if she has the funds to pay for a facility. If she does, is there a good, reputable one in close proximity to her PoA? Does the staff engage the residents well? etc.

Providing in-home care also depends on whether she can afford aids from a good agency. Or, if a family member is willing and able to provide hands-on care and is realistic about the impact this will have on their lives and families.

I personally am fortunate to have a really excellent continuum of care facility just 3 miles from my home where my MIL is in LTC. I think being cloistered in a home with only a family member all day is a sterile environment and not good for either party. But again, it matters how good the facility is run and staffed, even if it's affordable.

Memory care provides age appropriate social programs that are more creative than I could ever think of

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.