Mom says "What do I do?" It breaks my heart...

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Mom is at her home with 24/7 care. I go in 3 times a week take her out shopping and get something to eat and on 3rd day my house to eat with me and my husband. When I take here home she is confused and just says, "What do I do?" I can't entertain her everyday. I feel so bad for her. Did I miss the boat on a memory care facility? She doesn't do anything on her own. Dad passed a year and half ago. No short term memory. She doesn't even bring up the old stuff anymore. Always calls me my sister's name. I'm at a loss as to what to do now.


Did you miss the boat on memory care? There is no reason you can't reevaluate and include it as an option, she might thrive with more activity.
I don’t think you’ve missed the boat on memory care. That still may be an option as your mom gets worse. 24/7 care at home must be expensive. Have you checked out what facility care would cost?

It’s hard to not feel bad as our parents decline. My dads short term memory is shot and recently his long term memories are getting confused. You just have to roll with it the best you can, tell them what they need to hear, divert and fib a little, or in my case with Dad, a lot.

You may find that your outings with mom create more confusion for her. It’s counterintuitive for us but simple routines are usually best as dementia increases. We tend to think we need to entertain, gets folks out of the house etc but it’s not always for the best.

I'm at Dad's MC every day, & the women there are often like a bunch of jr-high girls. They gather in groups and talk (often making no sense at all), laugh, watch tv, etc. (Not so with the guys ...They tend to sit together along a wall in the community area and watch tv or the goings on around them.) When I've gone in the evening, after things are a bit quieter, several of the women have asked me, "What do I do now?" It's a common theme, as they seem to need to be social or busy. I love watching them; it's nice to see elderly when they're happy.
Your mom's situation sounds similar to both my parents last year. My dad started getting dementia 5 years ago and about 3 years ago moved them to an independent living apartment about a mile from my house. My mom was still "with it" at the time. Mom helped me care for my Dad at that time.. she cooked, did housework, laundry, kept an eye on him... that arrangement worked out for a couple of years me and Mom were all that were needed at that time.

As time went on.. 3 years later my mom started getting signs of dementia as well. They both became very confused at night so I got night caregivers.. then added more caregiving hours as they became less able to really do any daily type of tasks.

It is so difficult to care for a person who has no abilities to do any tasks.. even when they showered became a problem. They even had problems finding a station on the tv or using the phone or the tv remote. They were extremely bored by themselves and wanted me there all the time.

The caregivers I got just did the very minimum.. some didn't interact with them at all. They were supposed to encourage showers but basically just asked them if they wanted one and they said no.. so they left it at that. Their cooking was mostly substandard, they only did "light" housework... which evidently doesn't include dusting. I took the evening shift to watch them.. after I got off work and before the night shift arrived. My involvement in their care was extremely more and more overwhelming. They NEVER wanted me to leave them.

Eventually, this summer I realized that memory care (although extremely expensive) actually was less expensive then almost 24/7 caregivers.. and made the excruciating decision to move them to memory care. Its a difficult transition but the good news is my involvement in their care now isn't so overwhelming. They now have activities they can do at the memory care.. and others to see to it that they shower..etc.

You might look into memory care.. It isn't too late. Your mom may enjoy that more structured environment... and it may become less of a stress on you.
It think it is brilliant that you have maintained this regular frequent schedule of activities for your mother. And you'd have thought, wouldn't you, that staying in your own home with 24/7 care is every person's ideal.

But as it turns out, after a good go at it, this just happens not to be proving ideal for your mother. Her feeling at a loss when she returns home - sort of aimless? Adrift? - makes it sound as if she might well benefit from the more structured routine of memory care, with constant direction, a pattern to each day, a variety of people and activities around her. And - perhaps? - no void where your dad used to be.

Is there a facility you have in mind? Why not at least take a closer look at it; maybe ask if they can offer a trial period. But no, you've never missed the boat. If something isn't working, it's never wrong to think again.
Ihave1now, one thing that really surprised me when I started going through something similar with my Dad is the cost of care.

My Dad had 3 shifts of caregivers every day and that worked out great, but it was breaking the bank at $20k per month. Thus when Dad decided it was time to leave the big old house he was surprised how much he was saving by moving into a really nice senior living facility. Cost was around $6k-7k per month, and he had enough in his budget to keep his favorite caregiver to help him in the morning as a routine. He loved being around people of his own age, and enjoyed his table-mates at each meal.

The secret is to move one's parent into Memory Care while they still are able to find their way around the complex, learn the Staff, and be able to make new friends.

Downsizing was interesting. One thing I learned, if Dad want to bring all 200 of his books, it was much easier to let him have his books. Surprising all his bookcases fitted in his studio apartment. Something to think about when the times comes for your Mom to move.
I have a adult son at home who has sevear autism.

I looked after my mother and the details of her life her last six years. Over that time she began showing signs of dementia and in the last two years it was pretty bad.

One thing I noticed was that there were a lot of similarities between the two conditions.

Which brings me to my point - finally.

Most individuals with autism thrive on routines- in many such as my son it is essential. Routine provides them with reassurance- they feel safe and in control as they know what comes next.

While this “knowing what comes next” may not be as concrete with someone with dementia- I can’t help but believe some of it gets through - maybe like an unconscious muscle memory.

You mother has short routines on the days she is with you but seems lost when she’s not.

Perhaps moving to a facility that specializes in dementia- memory care - would provide her with routines everyday that would make her feel more stable and safe.

When it comes down to it - when what’s happening now is no longer working - it certainly makes sense that’s its time to try something else.

BTW - the same path of reasoning holds true for having a smaller space to live in - there is less of a rattling around/getting lost feeling.
Thank you all for your feedback. I am going to make a lunch date for mom and me at a facility I kind of like. What are some of the drawbacks to look for? I realize cost will go up and down the road we will have to move to NH because of Medicaid. I don't like the thought of her door being closed , because I fear she would never come out. Sometimes I feel like I worry to much. We would be good for close to three years private pay. Thank you
Have your mom evaluated by the facility staff for placement. You don’t want her to go to assisted living if she really needs memory care. Look for a place that’s progressive, moves within a building, not across town.
As far as what I looked at for memory care were first the basics.. how well the residents are cared for, lower staff to caregiver ratio, the it clean, homey welcoming (beware of smells unless someone had a recent accident), the activities .. do residents do activities or are they left to watch tv or sleep all day, how the staff treat the residents, having a nurse and doctor available, the food (eat a meal or 2 there), (I'm sure I am forgetting some)

The other thing I looked at was the outside area and how freely the residents are allowed to use it because my parents love to sit outside weather permitting. Their facility has a large backyard and patio that you would see in a home setting and the doors are open for them to freely go outside as long as the weather is ok. They also have a house dog and families are allowed to bring pets in to visit if they wish.

Also the facility my parents are in encourage residents to be outside their rooms during the day. Few residents stay holed up in their rooms.. they are always in the main areas during the day.

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