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Oldintheway1941 Asked January 15, 2024

At what point with dementia do the parents need care outside the home, to live somewhere else?

Msblcb Jan 24, 2024
I always thought that the time would be when my mom's dementia was so advanced that she did to know me. I am not sure that opinion was based on what was best for my mom or if it was related to the fact that I did not have the nerve to place her when she was aware of what I was doing.

But, if you wait until they are very confused, it is harder for them to adjust to the new environment. My mom never did after I placed her. I think it would have been easier had I placed her when her mind was a little clearer. She would have been more social and open to new friends.

For me it was the economics of having full time care in the home (she was not safe staying alone at all) and, to be honest, the exhaustion I felt from caregiving. I just could not do it anymore and it was impacting my husbands health also.

Safety for the loved one and sanity for the caregiver.

Fawnby Jan 23, 2024
I disagree that it's better to keep them at home. My parents took 5+ years for their final illnesses, and I kept them in their home with a wonderful live-in 24/7 caregiver plus relief caregivers plus OTs, PTs, housekeeper, and other help as needed. The daily barrage of helpers was staggering, and when hospice got onboard, we had doctors, nurses, OTs, PTs, volunteer music maker, chaplains, social workers, and on beyond ridiculous in and out all the time. The scheduling was a chore. Plus there were my parents' own doctors, dentists, eye appointments, cardiac appointments, oncologist, bladder, kidney and every other specialty doctors. Scheduling was needed for all of them, and transportation by us. It was exhausting.

My parents would have been better off in a nice care facility with socialization of people who had things in common with them. People from the community where they had lived for 80 years, familiar faces and anecdotes. A lovely dining room that resembled a restaurant, where they could all meet and reminisce. If ONLY!

Instead my parents wanted to die in their own home with their old (oldoldold) things, closets crowded to the max with 80 years worth of junk, and caregivers, who though they were wonderful, spoke in accents that my hard-of-hearing parents had trouble understanding. There was so much stress in this for the whole family. Life upended. No joy in any of it.

I'm not a fan of 24/7 care at home. You don't know what you've bitten off until you realize you can't chew it.

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Geaton777 Jan 16, 2024
I live next door to my single Mom, and I'm her only child. I'm her DPoA. She has expressed many times that she doesn't want to go into a facility, even though my MIL is in a great LTC one 2 miles away and gets awesome care. The agreement I've made with her is that she transitions to a facility the minute she's unsafe at home (and I get to decide that) and/or I'm overwhelmed or am no longer able to manage her care. Period.

The caregiving arrangement has to work for the caregiver or it's not working at all. This is the trigger IMO.

Onlychild2024 Feb 28, 2024
I was in denial about my parents. After my dad had to be placed in skilled nursing then a personal car residence, my mom became depressed and started experiencing more falls and dementia. I am the only child. There are no wills and I was never given POA. My mom is hospitalized now and they are considering putting her into a locked facility because of her combative behavior. I felt guilty not being able to pick her up off the floor or prevent her from falling. I live a few miles away. My mom is no longer my mom because she is losing her cognition. She had a mini stroke too. I cried in despair. The right thing to do is to keep our parents safe and turn them over to professionals. Aging can be very cruel!
Fawnby Feb 28, 2024
I agree about turning them over to professionals. Professionals provide so much better care than the average person who thinks that love can get them through caregiving because "we love each other so much." No, it can't.

Yet I'm posting this in a forum for caregivers. I'm singing to the choir. Where is the forum for the 60, 70, 80, 90 and 100-year olds who think they are owed caregiving by their adult senior citizen children? When said children deserve a retirement and a life free of oxygen tanks, Depends, doctor appointments, etc. etc. etc?

I truly believe that elders need education about how NOT to become dependent on their children. It needs to start early. The concept should be repeated frequently. It could be a mantra: "When I am old, I do not have the right to be taken care of by my children (add grandchildren, nieces, nephews, parents, and the guy down the street)." Also add, "My government does not have to provide for me, and knowing that, I will scrimp and save and live frugally, even buying used cars and refurbished smartphones, so that my own money will pay for my care."

LOL, are you laughing yet? Not going to happen. We are stuck with them.
lealonnie1 Jan 15, 2024
When in home care is no longer manageable.

AlvaDeer Jan 15, 2024
At the point they are no longer safe to be at home.
I think you can imagine the reasons. Wandering and being unable to find way home, starting fires, leaving stoves on, and etc.
Your physician can help with these questions and assessments.

MeDolly Jan 23, 2024
When you asked the question! Are you their crutch to make believe they are independent? Are there issues with dementia? What about incontinence?

Assisted living today is good, they are with people their own age, have activities, no house cleaning or cooking.

Don't wait until it is an emergency, start the process now.
BurntCaregiver Jan 23, 2024
Agreed.
BurntCaregiver Jan 24, 2024
Oldintheway1941,

I was a homecare worker for 25 years. I'm going to say most elderly people in good health who don't have Alzheimer's or some other kind of dementia need some help at home. Two elderly people, in poor health and one definitely has Alzheimer's is a tragedy waiting to happen.

No one with dementia should be living alone. In fact, I think it should be illegal for people with dementia to live alone.

Home isn't always best. There are lovely assisted living facilities. I was a supervisor at a very nice one.
Check out a few places now because it's going to get worse with them and there's usually waiting lists for AL facilities.

Your parents need to be placed. I'll tell you truthfully that I've had many clients who were way beyond what homecare can provide. They were unsafely being kept "home" by well-meaning family members (some not so well-meaning and it was to save money). I usually walked away from those assignments because they become unsafe for the caregiver too.

Your parents need to be placed.

Grandma1954 Jan 23, 2024
I based decisions on SAFETY
If it had ever become unsafe for my Husband for me to care for him I would have had to place him.
If it had ever become unsafe for me to care for him I would have had to place him.
Luckily the house is one that was built Handicap accessible so that helped a lot.
He was on Hospice for a while (almost 3 years) so I got extra help and all the equipment that I needed to safely care for him.

It also depends on what YOU can do. Or what you are willing and able to do. What is your "line in the sand"? What will you not do or can not do. For some it is incontinence, showering or other personal care.
For others it is violence, agitation that makes it dangerous.

When the level of care becomes more than you can manage the decision is Hiring Caregivers or looking for placement.

And I am a firm believer a person with dementia should not be living alone. You never know when it might get to a point where they wander off, leave a stove on, leave water on, fool with the furnace.....

Side note...since you are in Illinois contact Elderwerks.org they have a GREAT resource book on line the phone number is 1-855-462-0100
Elderwerks is a great resource of all sorts of programs.

ChoppedLiver Jan 23, 2024
From my experience, it is all up to the people who care for the person.

If you have a wanderer, if you can safely keep them at home, then they don't need to live somewhere else.

If you don't mind paying others to help with laundry, cooking, cleaning at home, personal hygiene, and caregiving, then the person can safely stay in their home.

When my Mom lived in her condo, there were lots of people who had 24 hour caregivers in the same building. The lobby was staffed at night, therefore there was no chance that someone would accidentally escape out of the building. I put my Mom in a MC facility because of I could no longer deal with the caregivers who called in sick and could not be replaced; the cleaning up after my Mom's incontinence; her neediness; and the fact that I felt I was losing my temper faster and more frequently.

I have since found out that some others put their parents in MC much earlier than I.

There is no one set answer.

If you are thinking about it, you should begin to do the research so that when the time comes, you know your options. That in itself will relieve some of your stress and help you answer your question.

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