Newbie here-only child w mom in ALF

Beauchene105

New here. Only child (no siblings, ever) making sure my mom is happy and comfortable with the best care possible, although I live nearly four hours away. My mom is 94 & somewhere between stages 5 and 6 dementia. She and my dad always lived in the city she's in (he died a few years ago), and she has one younger sister there (88!) who enjoys visiting her and can't drive far. I drive there every other week to spend 2 or 3 days. My mom is in a wonderful non-profit ALF  & also has great private sitters 7 a to 8 p.  My mom is very outgoing and social. She enjoys visiting with others at the ALF.

I have a couple of questions and would appreciate input. 

1. is there any advantage in having a formal diagnosis? There is absolutely no doubt that my mom has dementia and it fits the characteristics of stage five and six with some overlap. She hates taking medicine and it is a daily war pretty much. Her GP said he didn't see any advantage adding more.

2. At what point do people move their loved ones to memory care? The current arrangement is working fine, but looking down the list at stage seven, I see how severe it will probably get. Assisted living with sitters all day and monitors during the night is working well for now and I don't want to change unless it's for her benefit. Thank you so much for any input. I am happy to find a source for support.

Quilting brings calm

Many people would have already moved her to MC rather than pay for additional caregivers at the ALF.   The reasons for that would be: the total cost at MC might be less than ALF+caregivers, and dealing with staffing caregivers can be difficult.   

Since you’ve already opted for the caregiver route, my thoughts on the timing of moving  her now are: 

- if staffing dependable caregivers get hard or 

- if her care needs become more than the caregivers want to handle: incontinence, wandering, delusions, hallucinations, mobility or 

- when the ALF tells you that her needed care level is higher than they can or want to provide.  Has this one already been met? By that I mean did the ALF tell you that you had to provide these caregivers in order for her to stay?  

You are not alone in asking this question.  My parents are in an ALF.  I dread the time when I have to make the decision for one or both of them.  In their case, I have the added concern that they really can’t afford to have one or both of them in MC.  

M1

Welcome to the forum.   I have no opinion/advice on your care arrangements, but regarding a formal diagnosis, I'm with your GP--at 94 years of age, there is no point.  And nothing worth any fight about any medications.  I'd try to keep any medication regimen as simple as possible.  You really have to think hard about what you're trying to accomplish in extreme old age.

PattyAZ

I'm new too.  Mom has dementia.  As for formal diagnosis...check her insurance policies.  Some insurance policies require a formal diagnosis in order for the policy to pay for her care.  The diagnosis can be performed by her GP and recorded in her medical records.  I also recommend looking into hospice care if you haven't already done so.  Hospice has been wonderful for us and I am grateful a friend told me about it.

Beauchene105

 Thank you all so much for your quick responses. It is so helpful to have some validation to  thoughts that I was having about this situation. In my mother's case, because the ALF is nonprofit and run by a church organization, the fees are lower than others in the area ( although it's regarded as the best place in that area to be). MC would be double what we are paying for ALF and sitters. And yes, for her to "age in place" at the ALF, I am required to provide sitters, but it really meets her needs because she has many days where she is pleasant and likes how things are going. She and the other ladies there are all about the on the same level, and this makes for very interesting conversations in the dining room where they don't necessarily remember who each other are but enjoy talking to each other about things that are probably not true! 

 I also got a POA when my parents were first starting to go downhill, and it's invaluable for dealing with all my mom's finances, banks, bills, doctors, etc. When it was clear my dad was going downhill fast at 90 after a broken hip, the POA enabled me to make final decisions (DNR, as he had always expressed to me he wanted) as my mom was in no shape to make decisions.

The hardest thing to me about this whole journey is that I have had to become the parent. There is no one else to do it. It's interesting how life is sort of a bell curve, where we start out helpless and needing caring for and at the end, we are back to that.  When my mother is having a bad day and accusing everyone of plotting against her, saying it's not really me on the FaceTime but an imposter, etc.,the go-to answer for those days is just let her go to sleep!

I look forward to gaining lots of insight here. Thanks for reaching out. 

zauberflote

I'm with PattyAZ-- just to have the dx in her chart will be useful when time for hospice rolls around. Unless she has some other serious health problem, Alz would be what hospice used to qualify her. 

Meanwhile, it sounds like things are going very well in AL! If her finances are not strained, and she still enjoys being with fellow residents, if it were I I'd want to hang on to this situation as long as possible! 

Beauchene105

Thanks for that advice. Her GP is definitely aware of the dementia & will vouch for it. At her last checkup, I passed him a note when we first got there, telling him that on the way to the doctor's office, she was talking about "being so tired from playing all that basketball". So the doctor asked her ever so politely, "Have you been playing a lot of basketball?"And she answered, "Oh yes, that's how I hurt my leg!" As I'm guessing all of you do, I just say "OK" to any comments like that, and switch the subject.

mommyandme (m&m)

A moderate stage diagnosis was necessary for my moms LTC insurance to be activated.  If her doctor will “vouch” for her is that the same as a diagnosis?  

Sounds like the situation now is working really well, keep it for as long as this dumb disease allows you to. 

Just my thoughts.  Welcome. 

Beauchene105

Thanks mommyandme. My mother's LTC actually comes and does an examination about once a year. The visit with my mom leaves no doubt. But I appreciate the advice and I will definitely tell her GP when we go see him again, that it might be good to have documentation in her file. And yes, she is reasonably happy where she is and likes the caregivers, so we'll hang in there as long as they will let us.

BassetHoundAnn

Hello, Beauchene, and welcome to the forum. It sounds like you have a very good situation arranged for your mom, and you are on top of her symptoms. If your mom enjoys socializing with other residents of the AL why that is an excellent thing! And a good reason to keep her there for as long as you can. My mom was always a super-social gal, but ALZ has robbed her of that pleasure. And in the memory care facility where she is now all the other residents are zombie-like. Everyone sits in their chairs alone all day and no one wants to socialize. Most people are incapable of talking much. It's very sad. And it's sad for me to see her there. 

My mom is also in her 90s and I never got her a formal diagnosis. There didn't seem to be much point. I took her to a geriatric clinic and they wanted to do 4.5 hours of cognitive tests on her. No, no. She's too frail to undergo something like that. 

What I did need to get was a "statement of mental incapacity" in order to activate her durable POA and her medical POA. I needed that in order to deal directly with her doctors, the memory care, and the hospice. For that she underwent a 15-minute memory test with her primary care physician. Then two physicians needed to sign off. 

The only medication she gets is low doses of a couple medications for anxiety. Seems like we're constantly tweaking the doses. 

I moved her to memory care when it became clear she needed more supervision with late-night wandering, incontinence, and meals. Frequent falls were another issue with which she needed more help. 

The basketball story is very funny! The first time I took my mom to the doctor she was making perfect sense while speaking to him--until he asked her who the current president was and she stated quite confidently "Roosevelt!" and then he was convinced. 

harshedbuzz

Beauchene105 wrote:

New here. Only child (no siblings, ever) making sure my mom is happy and comfortable with the best care possible, although I live nearly four hours away. My mom is 94 & somewhere between stages 5 and 6 dementia. She and my dad always lived in the city she's in (he died a few years ago), and she has one younger sister there (88!) who enjoys visiting her and can't drive far. I drive there every other week to spend 2 or 3 days. My mom is in a wonderful non-profit ALF  & also has great private sitters 7 a to 8 p.  My mom is very outgoing and social. She enjoys visiting with others at the ALF.

I have a couple of questions and would appreciate input. 

1. is there any advantage in having a formal diagnosis? There is absolutely no doubt that my mom has dementia and it fits the characteristics of stage five and six with some overlap. She hates taking medicine and it is a daily war pretty much. Her GP said he didn't see any advantage adding more. 

Unless you need it to activate a POA or LTC, at 94 I would think the care of her PCP should be enough. 

My dad had the soup-to-nuts dementia workup at a university memory center. My friend's mom remained under the care of her PCP. The care offered and the trajectory for each was remarkably similar. 

2. At what point do people move their loved ones to memory care? The current arrangement is working fine, but looking down the list at stage seven, I see how severe it will probably get. Assisted living with sitters all day and monitors during the night is working well for now and I don't want to change unless it's for her benefit. Thank you so much for any input. I am happy to find a source for support. 

When to move is a personal choice. Often the line in the sand is incontinence which is a stage 6 symptom. 

While this arrangement seems to be working now, that could change in a heartbeat. At a certain point, many PWD go through a period of frequent ER visits for UTIs and falls. During this period, it is really best for the POA to be near enough to make the mad dash to meet the ambulance. (When AL or MC send a resident to the ER, they do not send someone with them-- your LO will be alone in the ER without someone to advocate for them)

A quality MCF would be able to offer socialization in a supported and failure-free dementia-informed environment. IME, there comes a point where other AL residents shun those with dementia because they can't keep up with the conversation or activities. My aunt in AL was even bullied by a group of ladies at hers. I am also an only since my sister died almost 30 years ago so I can appreciate your sense of responsibility. I felt terribly guilty when I moved my parents closer to me; they were devastated by the loss of their winter place in Florida and ragged on me non-stop about how much more fun they had there playing cards with neighbors, swimming at the pool every afternoon, dinners with friends and such. When I went down to sell that house, several of my mom's friends asked after her and all reported that they hadn't seen dad at the pool or the club's dining room in 5 years. 

TL;DR. your mom's basketball could be the same as my dad's swimming and it would be a shame to base your careplan on maintaining something that exists only in her mind. 

The other consideration is that MCFs generally have a policy of requiring a PWD to be ambulatory and able to self-feed at a minimum. A stroke or a fall/broken hip could take a MCF off the table and leave you with only a SNF as an option for care. While care could be excellent there, there is generally less in the way of dementia trained caregivers and activities that would be appropriate for someone who'd had a cognitive shift. 

HB

Beauchene105

Thanks to every one of you who took time to write. It has truly given me a boost just to have feedback from others who really understand.

zauberflote

HB makes a really really good point about the time when ER visits become more frequent, and your LO being packed off in the ambulance to have a guaranteed-horrible time at the hospital, once they reach a certain stage of confusion. You have not lived until you've been strapped to a gurney left out in the hallway of a frantically busy ER, with random people insisting you tell them why you're here (when you don't even know where "here" is), and doing painful things to you.....and you may lose track of who "you" is!

A hospitalization from hell was what upset my sib-group's applecart. Two of us had not known the weight of the burden the third had been carrying. She called it quits, for which I do not blame her, and brother and I took over everything Mom. We did it from 600 and 1,000 miles away for too long, but Mom was stable for that time. Soon enough that became too much for us, and we moved her to my city. The MC I chose was far from perfect, but the long-haul caregivers were highly qualified, and loved their charges as family. Also, I could beat or meet the ambulance, which I did a number of times until we got hospice and the ambulance was theoretically a thing of the past. Being there with Mom went a long way towards smoothing things out in her path, and on a couple of occasions I was able to prevent them from their wish to admit her-- it is their duty to treat every little questionable thing, even if that's "normal" for my own particular mom. 

Mom moved that 600 miles, from an AL which really was only AL, to a place that allowed you to keep your room until you died. It was the right thing. 

Sorry, very long, but hope it can convey some of the situations that may happen one day. 

Beauchene105

Thanks--actually my mom fell and broke her tibia and fibula two years ago, and arm last year. The AL called me immediately and I jumped into the car (iI keep a suitcase packed & ready). My mom's younger sister who lives there went and sat with her at the ER till I arrived. That's my go-to plan for now.

I love my mom's AL people like family and want to keep her in that caring environment as long as possible. My mom's been incontinent for three years, has delusions, all the dementia traits. The staff and sitters are used to dealing with it. Their patience is amazing. Now you see why I'm willing to make an 8 hr round trip every other week.

Everyone's situation is different and I believe we're all doing the very best we can, with what we have to work with. I appreciate all of you already and value this support system.

Susan12341234

Hi I’m new to this as my mom was recently diagnosed . She lives with husband who cares for her most days but as an only child I’m caring for her more surrounding a full time job. She is mostly fine just having trouble with short term memory. I’m not sure what stage she’s in she still dresses correctly and had proper hygiene. But she is lonely having recently a forced retirement after COVID . She is 82. 

I’m most worried about the few days a week where she is alone and lonely for 6 hours due to work commitments. . I try to drop by with lunch to make sure she eats ( she won’t remember she’s hungry but eats when we are there or we are at a restaurant . ) and she was never much of cook anyway lol . We have much phone contact between me and her granddaughters thru those days but she is becoming more and more paranoid about the whereabouts of her husband during those hours ( he is at work but mostly unreachable )  She is beginning to call him at work 5 or 6 times to see where he is.   I am a master at redirecting her paranoia but it is on the increase and I need some new tactics to help assure her all is well. The time change has I believe increased her sundowning confusion . She begrudgingly allowed us to introduce a companion ( under the guise of cooking meals ) but that’s only a few hours . Also her paranoia for her husband occurs not only when she’s alone but even when I am with her she will ask if I have heard from him. One day at its worse she was asking me for him every 15 minutes for a few hours  I need some new tactics / advice.  She’s aware she is forgetful but does not know she had dementia and we are trying to insulate her from the horrors to come . Any advice is appreciated.  

Beauchene105

Susan12341234, I just happened on your response. Since you have different questions from mine, I believe more people will see your questions if you copy and paste them into a brand new post. The button to "add post" is at the top of the forum page. Good luck to us all!