Op, I am sorry you are going through this. My mom is in earlier stages, but moved to assisted living so when the time comes it wont be as much of a transition. However, it is expensive (about 8k/mo for assisted living with some services like medication management, etc).

In your case I would do two things. First, look into some part time caregivers, through an agency or otherwise. What you want to is to get mom used to someone or a few people (and vice versa) so you can have backup help, additional help and take a vacation. Try to stretch dollars and still keep your sanity by using pt caregivers.

Second, start looking into memory care. she may not need it asap, but things can change fast. A fall, an illness, lots of things can cause a sudden decline or a change in her needs (no longer able to toilet herself, etc). You dont want to be scrambling during a crisis. If you can avoid it by hiring pt caregivers and still give yourself a break, I'd do that until things become too difficult (agitation, aggression or needs 24/7).

as for how long, its so hard to say. My MIL (who does not have dementia) moved into assisted living at 88 after her 3rd bad fall, broke femur, had hospital delirum, is wheelchair bound, had mild COPD (lifelong smoker who quite at 85)...we thought she'd only last a year or two more....she's still going strong 5 years later. there's no predicting but if you look into memory cares, look into finances.

Anonymous wrote:OP here. Thank you for your thoughtful responses. I am an only child, so all decisions related to my mother’s care fall on my shoulders. I feel guilty over having to consider how long my mom will live, and making sure her money will last. It is like using a morbid calculator!

We are managing ok at home, but I feel tied to my house, and have not been able to go on a family vacation for over three years now. I can still leave my mom home alone for some hours, but somebody needs to be there to serve her meals. Basically, our situation could be much worse, so there is no immediate need to place her, but I just (in a guilty way) want to look forward to a time when I can get some of my freedom back.

Maybe consider looking into part-time caregivers in case you will need back up, as well as start looking into the next step in case worse comes to worst.

OP here. Thank you for your thoughtful responses. I am an only child, so all decisions related to my mother’s care fall on my shoulders. I feel guilty over having to consider how long my mom will live, and making sure her money will last. It is like using a morbid calculator!

We are managing ok at home, but I feel tied to my house, and have not been able to go on a family vacation for over three years now. I can still leave my mom home alone for some hours, but somebody needs to be there to serve her meals. Basically, our situation could be much worse, so there is no immediate need to place her, but I just (in a guilty way) want to look forward to a time when I can get some of my freedom back.

dad lasted a year and a half. mom has lasted two and a half years, and has been on hospice for two of those years which realistically means she could go next month or she could last for years more. it's impossible to know.

4 years, was surprised mom lasted that long but I think the care she received in the nursing unit was much superior to what she and dad were doing at home. Was in a wheelchair all four years and could not toilet herself without help.

Average length of stay is less than 2 years.

Obviously there is a wide dispersion.

For most who do a direct to memory care placement (ie, not a transfer from assisted living), the reason is undue stress on a caregiver.

If things are fine at home right now, stay there as long as possible. If things are stressful or unmanageable at home, consider a placement. (It may be good to research now, so you have a short list of resources when you are ready.)

It will be hard on either path, and that is because this disease is so unforgiving. Wishing the best to you and your loved ones on this journey.

She can apply for Medicaid once she spends down

Op, if she could stay in memory care once she runs out of (her own) money, move her whenever you want. You have done a lot. She will be fine and not very different for the move.

7 horrible years.

MIL was diagnosed at age 64 (late diagnosis) and died just shy of her 80th birthday. It was a very very long slow slog.

Maybe 6 years but early onset dementia, forget how long but it was a long time. They can go on long term care medicaid after the money runs out.

My friend’s father spent about 3 years in memory care. He had the ability to have some private area (room with a shared bathroom) and activities. Never had to move to the more hospital like setting as he “coded” in his room.

By the time he got to care, he could not walk steadily, could not use the toilet well independently, among other things.

I've posted on here before about my mom.

My mom was 71. My parents were living in their house (had been there about 20 years) and it was during Covid. She already had been diagnosed with dementia but the isolation and loss of services probably made it worse--or ate least more noticeable to my dad/siblings and I.
She was very mobile-which was a problem because she was wandering a lot. She would forget who my Dad was and would run out of the house in a panic, telling the neighbors there was a strange man in her house. She was also getting aggressive and violent with my dad.
My dad really didn't want the lock down and restrictions of memory care (which was even stricter during covid) and so they tried living in an apartment in assisted living, but after a few weeks it was obvious my mom needed memory care. I think my dad had been "covering" for my mom a lot when they lived in their house but with all the staff/other residents in memory care there were a lot of witnesses to my mom's behavior; employees saw my mom being violent with my dad and the manager told my dad and sibling that he would have to call adult protective services.

So she moved in memory care. Due to Covid there were a lot of restrictions on visitors, including my dad, and he didn't deal with that well. After about a year her physical health deteriorated and she was no longer mobile, at all. The risk of "elopement" was no longer a factor so they moved into an apartment in a 55+ community and he hired a caregiver to provide round the clock care. She passed away about a year later.

It's not so much the stage as how they behave and how safe they are in a setting without 24/7 awake supervision.

My LO - female, almost 87 years old,has Alzheimer. I think she is in stage 6- shuffle walk, underweight, frail, can use the toilet on her own, but needs help here and there, needs help to shower, can feed herself, still recognizes me, and my immediate family (she lives with us), some hallucianations, but overall calm/non-combative. She is also quite healthy for her age.

We are deciding if and when to place her in memory care. She was diagnosed in 2020, and moved in with us at that point.

She has some money saved up, probably enough for two years of memory care.

If your loved one was placed in memory care, how old were they, about what stage and how long did they live there?