I know that each person's experience with dementia is different. I've been reading posts from individuals who recommend that the person needing care is moved closer to the caregiver due to all of the things that the caregiver still has to manage even though the parent is in AL.
My mom is in CO and I am in WA. Due to my work and life circumstances I can't move her closer to me as I move frequently for work. She is in good physical health and has settled well into AL. Aside from calling to check in and ordering her items that she needs for delivery I'm not having to do much right now. Her bills are on autopay and I keep an eye on them monthly.
What am I missing? Why are some caregivers having to do so much for their LO in AL? Is it a decline in health, a personal choice? I'm genuinely asking because I want to know if I should be doing something that I'm not.
Should the AL have gone to Kohls to buy her new shoes or bras or clothing or socks? Or taken her to the specialty shoe store for fitted shoes to deal with her neuropathy issue which required inner soles with lifts?
Or the time I had to drive to Wal-Mart to buy 8 pair of shoes in various sizes bc her feet were THAT swollen that none of her shoes fit, and nobody knew what size she wore? Then I had to drive the others back to WM after we found 2 pair that fit.
Or perhaps they should have sent a CNA to buy her a new bed and mattress with linens when the old one wore out. Or moved her 3x, lock stock and barrel, from one room or bldg to another, when the need arose?
Or the times I had to meet the doctor at the AL to discuss treatment strategies, medicine changes, equipment updates. The various times I had to meet the ambulance at the ER, the hospital stays, conferences with doctors, rehab facilities, getting her transferred from one horrible one into a good one, etc etc.
This doesn't even include Memory Care Assisted Living when her needs doubled.I don't know what needs your mother will have or not have, but to say that AL covers ALL of a residents needs across the board with no help from family or POAs is to not have any firsthand knowledge of managed care whatsoever.
Yes, while I was able to handle several ordering items like snacks and Depends over the phone, there are issues that arise (especially with dementia) that cannot be handled that way.
Seeing a loved one in person weekly is also crucial imo to make sure she's being cared for properly and not neglected in any way by the facility. Laying eyes on her firsthand is the only REAL way to know for sure. I went weekly to see mom in MC even during covid when I had to stand outside in the cold and speak to her thru the window over the phone. Such a thing may not be possible for you, granted, but don't expect to be able to do all that's needed over the phone 24/7 either.
Oftentimes mom needed me to talk to her in person when she was agitated or Sundowning, so that's something else to consider when dealing with dementia. Yes, all elders needs will vary. But I've yet to see an elder who never needs anything from their children at any time while living in AL. It's unrealistic.
Unless she has a very swift decline and passes quickly, there is a high probability she'll need things from you in person over the course of her stay in MC. My mom was there for 3 years, and in AL for 4.
Best of luck to you.
He had been diagnosed with probably early Lewy's dementia but was still relatively well physically and mentally. He suddenly got sepsis and returned from hospital per his request to his ALF with Hospice and died there within a week. It was at the beginning of Covid (tho that was not the cause of the sepsis).
During his stay in ALF my bro got nothing but better. He was assured everything was handled and he could just relax. We wrote our usual letter and spoke on the phone often. He died before he could become more confused, need memory care, get more physical fragility. Your mother may die before this happens, as well.
HOWEVER.............................
She may not.
She may deteriorate mentally requiring you to be POA and handle everything, requiring movement into MC, and she may require medication, MD intervention.
Or she may decline physically, requiring a higher and higher level of daily care.
Point is, for now things are OK and you cannot predict them. My brother did not wish to move closer to me; he had become a SoCal boy and his friends were there. I wasn't myself moving for Northern California.
I wouldn't "buy trouble". I would take it that today is OK and tomorrow you will handle as you must, given your documents for your mother are already handled. If you are on Forum and are reading you can already see some of what MAY happen. As to those getting through quite well, they aren't really the ones writing us questions.
Best of luck to you both. Yours is an excellent question.
A couple more examples of how I think it’s important for me to have eyes on her, once a week:
Every once in a while, my mother runs out of TP. Because she has dementia, she has no initiative. That means that she doesn’t ask for replacements. So, she sometimes uses whatever washcloth is drying in the bathroom. And, re-uses it. Ummm, gross. I catch it, call the caregiver, and Mom gets restocked.
Mom hoards used cups and used napkins. The maintenance staff is not allowed to throw anything away. So, I go around her room, collect trash, and throw it away, despite my mother’s strong objections.
I check her closet, bathroom, and drawers, to make sure that she’s not hoarding trash in those places.
On and on.
Perhaps you could hire someone, with your mother’s money, of course, to get eyes on her, once a week.
1. They may think it is expected. This could be due to cultural reasons. Or this is how they were brought up. It could be because the loved one is demanding and used to getting what they want when they want. And for some that most misused word.."guilt".
2. this should have been first...Because they want to, their parent or loved one is truly a loved person and a joy to be with and care for. The facility should do a good job of keeping you informed about moms condition and her decline. (I am sure that they will be quick to inform you when she needs more "assistance" as that will generally mean an increase in fees. And when and if they inform you that she is no longer appropriate for AL and needs to move to MC.)
I would try to schedule a monthly meeting so that they can keep you informed. As mom declines more possibly a Care Manager might be a good idea. Who is going to go to doctor appointments with her now? Someone should be with her as she declines so that correct information can be passed on to the facility and to you.
As Lea said, theres lots a family is still responsible for. Me it was Depends, toilet paper, tissues, wipe and toiletries. Aides did the laundry and cleaned her room. At that point Mom had enough shoes and clothes. But if she needed anything, that would have fallen on me. I took her to doctor visits because I needed to know what was going on.
When Mom went to Long-term care was when I got a break. They had a doctor associated with the facility so no more doctor appts. Even though I supplied her toiletries, they used their own. Depends were supplied as was, TP, wipes, and tissues. If I had to worry about anything, it would have been shoes and clothing.
Its a shame u live so far away.
Yes, she's in a step-up facility with MC attached. They also have a small rehab section if and when needed. They have a doctor attached to the facility and you can schedule basic appointments with them. I call in for them to monitor what is said and provide guidance as her MPOA.
It's not an ideal situation but what is workable right now.
dad passed away and I was still going almost every day and I began to get burned out.
I ended up hiring someone in my neighborhood, a retired nurse who sees my Mom two mornings a week. My Mom loves the company and it gives me a much needed break.
This might be helpful for you since you can’t be there. you can go through an agency for this. I believe one company is Caring Angels.
We do become exhausted when we push ourselves too hard. I was guilty of pushing myself too hard when I was caring for my parents.
My dad died years before my mom. My mom lived to be 95!