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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.

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The stories you hear about people having to do so much for a LO in AL usually mean the elderly person has too much pride to accept the help from the AL they need and are paying for; and that their children are stupid enough to do the AL's job for them.

You're handling everything perfectly it seems.
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lealonnie1 Jun 2023
Oh you ARE kidding, right???? To think a daughter or son drops a parent off in AL or MC and sees them again at their funeral is to have no real understanding of managed care whatsoever! 😑
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When my mother first moved into care, she would call us about ants in her kitchen and burned out light bulbs. We would say " you have staff mom, use them".

Mom said "oh, I don't want to BOTHER them".

My SIL said, "for $5000 a month, you'd better bother them!"

That solved the problem.
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Perhaps you are not missing anything. These things cannot be predicted. Once my POA and Trustee for my brother was arranged, and I was in charge of bills and all other entities from banks to CPAs knew I was POA, my brother's routine settled into the every day. I did the financial and kept the records.
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.
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My mother needed lots of things in AL that they did not provide for her....me providing those things did not mean I "was too stupid and doing the ALs job for them."

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.
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The only difference between living in an apt and assisted living is you have help with ADLs. There is a point a resident can no longer be cared to at an AL. ALs do not do skilled nursing.

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.
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I love the old adage, “Don’t trouble trouble ‘til trouble troubles YOU.” Let well enough alone until forced to do otherwise. She’s adjusted, she’s happy, and you may well look back at these easy days with HUGE nostalgia, if she deteriorates.
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I’m the one that notices when my mother’s meds need to be changed. The caregivers just deal with her each and every day, and aren’t allowed to make medical decisions. I am the one to report symptoms to the medical team associated with the Assisted Living Memory Care.

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.
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NorasDaughter Jun 2023
My mom is doing the same things.
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It looks like you are doing all that you can right now. I don’t know what else you could do with being so far away from her.

You are calling her to stay in touch with her. I’m glad that she has settled in well at her facility. Has she complained about anything to you?

You could always call the facility to get additional information about how she is doing or if she has asked for anything that they don’t provide.

I am sure that she knows that if you were able to have her closer to you that you would visit her in person. Do you have the chance to visit occasionally?

No one can tell you exactly how your mom’s health situation will progress. You’re going to have to wait and see what happens as her condition changes.

Wishing you and your mom all the best.
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Scbluheron Jun 2023
Thank you.

No, she hasn't complained about anything. She sounds happy, laughs, tells me about the fun activities she does now, she has even taken a neighbor who is wheelchair bound under her wing and her helps get too and from meals and spends time with her. (Her mobility is still fine). She stated that it felt good to be able to help others. She had socially isolated herself so much over the years that this is so unusual to me.

I'll be flying back for a visit next week to take care of a few things with her house and see her. That will be the time to see if she's really doing ok and what else she needs.
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She is in a facility.. They offer aging in place...right? So, when her health declines, they can move her into a more proper area of the same establishment. My friend did this for her parents and her great aunt, and her FIL, all in the same establishment but other WINGS... for the appropriate care needed...and she would visit, have meals with them, take them places. etc.VISITING your mom more often when possible if she still knows who you are and she can still talk... When they stop talking... :(Perhaps, you have too much on your plate as is... but I had to have my LO's near me, so I could get to them just in case... I needed to see them on a regular basis.. I put them in the same facility.. My doctor actually saw me after I did that and asked what changed? It was a one stop shop... I could see both of them at the same time..drop off their supplies, make sure they were okay. And I had them within minutes of me..... The one time I decided to go out of town... facility called me and said 911 was on their way.. quick come over... What? 5 years or more.. of not going anywhere farther than 2 hours, she chooses this weekend, that I was 8 hours away... Aunt pulled the same thing on me... I was actually coming home, and was 45 minutes away,, they called and said, come quick when are you going to be here? What? I was driving home when that call came in.. I guess, for me, it was a personal choice. I did not move away from my parents. I was close by.. I needed to be near them..one died of cancer, the other had ALZ..which was easier for me to handle? It's a double edged sword..I suppose my answer would be guilt if I didn't see them on a regular basis.. because I put them there; spending time, trying to get them to be happy, dancing, giving them as much of a normal life as possible... hamburgers and milkshakes with ensure..trying to stimulate their minds a bit.. talking, walking, reminiscing etc...
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Scbluheron Jun 2023
Thank you.

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.
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I hope she has family and or friends who can drop by and visit and physically check on her from time to time.. Not saying that staff doesn't do that, but sometimes you just want to see your LOVED ONES...TRULY... CONNECTION WITH A FACE AND MEMORIES, STORIES.
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My mom’s dementia was severe enough that I could not trust her feedback on the care. You may be one of the lucky ones that has an incredible facility that does everything perfect. Those are few and far between. They simply do not have the staff. I visited to monitor her care and to provide those things the AL could or would not do. For me, placing her was getting help but it certainly did not remove my need to oversee and monitor her care and her decline (and to provide special things to bring her joy). I knew my mom better than anyone. Seeing her helped me avoid issues before they became a crisis, (Swelling legs, potassium levels, sore gums, temporary confusion (UTI’s), monitoring weight, cracked skin……..and on and on and on. Time will tell how your mom does. The one thing that is sure, with dementia, is that they WILL decline. This is not a steady state. Enjoy this time while you have it.
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NorasDaughter Jun 2023
Thank you. I couldn’t have said it better.
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I am going to take the last of your questions first. Some people do as much as they do for loved ones because

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.
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I am glad that you found a multi level facility for your mom.You might want to line up a geriatric care manager to be used for those medical emergencies when she is close to transitioning between facility floors such as rehab. Or even lining up movers to transfer her stuff to the next level of care. This may help when you cannot drop everything for an emergency visit. Go prepared with those questions to see if the person will be a good fit. The costs could be offset just from the costs of a plane ride.
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Some people personally do a lot for a loved one in a care facility out of guilt or b/c they are allowing themselves to be manipulated by a demanding LO. Both LO and on-call family members are often angry, unhappy and complaining. Those are the situations that prompt the most postings on a care taking forum.

If your mother is well taken care of and happy in her situation, it seems you have found very successful placement and care for her. If she is in a continuing care facility, the facility will evaluate her care level needs as they change and place her appropriately.

Continue to check in and get reports, but don't assume that you will encounter any or all of the problems that some others have. I
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I’m sure it’s a decline in health, but could be both preference and health. The more you need to do, the easier it is if you are physically closer.

It sound as if you are ok for now. I wouldn’t worry too much until her health does start to decline. Keep in contact with staff at AL, because they will be able to keep an eye out for changes in your mom. Of course, that’s when the staff is good. If you ever feel the staff is not “there” for your mom and you, well, then, that’s another reason for a move.
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In assisted living all but one of the residents who were there when Mom moved in had moved on to memory care or had died. That was in 4 years. But one couple had been there 8 years before Mom got there and others had been there a few years before. This was very small facility. No way to tell about your mom, but good physical health is a real plus. If she's doing well now, it will probably go on this way for a while.

I visited every day, but did not "do their job". Personal choice. Mom also called me frequently. I bought her new clothes when needed and took her out for walks, rides, and to her doctor and dentist, hairdresser, paid her bills, took care of her house, etc. If there is someone in CO who could check on your mom occasionally, that would be great. Do they have a nurse who calls on the residents weekly? Someone to take care of feet? Hair? If they accepted her with you being so far away, I assume they do.

Mom's Alzheimer's worsened and she had to move to memory care, where they supplied depends when she became partially incontinent, all of her bathroom needs, and even cut off her bed legs to lower it when she couldn't hop up to it anymore. They were so good to her. I could only visit 2 or 3 days a week then at her window, but eventually they realized people needed their families and they let me inside for a couple hours twice a week.

Her having to go to nursing home eventually is the issue I hope you do not have to face.
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Hi
The likelihood if you have a loved one in care or are caring for them at home as I am with my husband their care needs will increase as they decline, and you the caregiver grow older. So, since you have your Mom in a place with stepwise changes available, you should be able to manage her needs.
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Distance will impact what you are and are not " seeing".
Try to make an in person unannounced visit to your mother to perhaps get a better picture of her needs and what/ how you can help.

As far as a " dementia" patient coping in AL, and how their care needs will change over time,there are many many variables that may impact this.
Also she could acquire other illnesses that affect her care needs. Sometimes the " level of care needs" change intermittently based on different illnesses that crop up.

Hang on....it will be a rollercoaster....most likely...
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When you buy a car, it starts deteriorating, but the rapidity of the deterioration depends on usage................eventually the car dies if unattended...........no one guarantees what will happen in the future. Life and the ability to live it, depends on many factors. Mom will be good until she isn't and so it goes. If you have it easy with her, count your blessings and show affection in anyway you can; too many elders are put away and left on their own.
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My aunt has a paid caregiver that shops for her, visits once a day. Checks to make sure she doesn't need anything. Since my aunt lives in a small town I order some items and have it sent to the caregiver home. Recently I asked the caregiver to accompany my aunt to the hospital when my aunt had a UTI. Not ideal, but I'm 4 hours away. The caregiver has been with my aunt for 5 years. She helped my aunt when my aunt was still in her house.
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I'm following this because we are in the same/similar position. Thank you for asking it in a better way than I could.
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I moved my parents to AL near me and they did not have dementia. When my Dad was alive I was at the room sometimes twice a day even during Covid. Mom had complete respiratory failure and ended up on hospice.

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.
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NeedHelpWithMom Jun 2023
I’m so glad that you recognized that you needed a break and took time for yourself.

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!
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You'll know when you need to assume more duty. As for now, she's doing well. That's great! However, even without dementia, it's highly likely mom will need more attention or care. At that point, it may be a move to higher level of care. AL will tell you when she can't manage at the level she pays for now.
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Seems you are doing well and your mom is in a good place - mentally and facility. This can go for many years. If her need for help becomes more than assisted living can provide, then she may need to phase to skilled nursing care and eventually memory care. Keep in touch with the staff at the facility for updates and to monitor that her needs are being met - from their perspective. Visit when you can to verify what the staff communicates to you.
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Scbluheron: Perhaps you are not missing anything CURRENTLY. That could change.
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