I desperately want to be wrong

darcytg · January 11

Hello Wonderful People,

I am now half a continent away from my LO.

She is slated to move to AL later this month. I'm pretty much out of the loop. I am recovering well from pneumonia and am grateful for that.

My LO's POA shared that the community where my LO is headed did an assessment at the community and another in home assessment is scheduled.

In my 2 plus months with my LO and a crash course of learning via video, I had estimated my LO as solidly in stage 4 with wide open doors into stage 5. I do hope I was wrong. O ...how distance clouds the daily events.

At any rate, have any of you had LO's move only to do better, or assess better than you'd have staged them? I know the disease is what it is and that there is no unwinding the eventual realities. I guess I'm just looking for hope that I was seeing things more poorly than they currently were.

Heartbreaking and a long way from being able to hold a hand.

Love and light. Thanks for sharing your experiences. It means more than I can express.

M1 · January 11

Darcy I hate to tell you this-- but we family members overall tend to assess our LO's as better than they objectively assess, not worse. There are exceptions to every rule--but be prepared. If they suggest memory care, are you and her POA prepared for that?

darcytg · January 11

Hello M1 and Everyone,

I was definitely prepared for the MC assessment. My LO's POA is going on the community placement assessments.

My LO often converses well and mostly does her ADL's in a reasonable way. I scaffolded for her on dressing, grooming and some toileting clean up.

Her POA and another dear friend, who are providing care now, see a different person and abilities than I was seeing. I was told my LO made a 3 course dinner last night.

What???

One example of many....My LO made a roast chicken while I was there and while my eyes were elsewhere inserted a plastic temp probe into the chicken. Only when I smelled burning plastic did I realize what had happened and was able to step in unobtrusively.

Really truly hoping I am wrong and my LO will enjoy successful living in AL community.

All the sharing, information and experiences you all have make this bearable for me.

Thank you all for your input.

BassetHoundAnn · January 12

It's called "showtiming," when our LOs perform better with others while we see the unvarnished truth. I think Stage 4, early Stage 5 is prime show-timing time. I would take my mom to her doctor and she would whiz through the MMSE test, he would smile "She's not suffering any dementia" and my jaw would drop. She had just spent the past week thinking I was her sister. Trust your observations and above all others. Your staging is the most accurate.

darcytg · January 12

https://alzconnected.org/discussion/comment/194440#Comment_194440

Thank you.

Anonymousjpl123 · January 13

My mom “showtimed” all her assessments. I’m kind of glad she did, because it allowed all of us to have a fantasy for about a year that she could function in AL; that she could live out golden years like in the movies. I think we needed that time and that fantasy.

In terms of staging, I believe that when my dad passed and I became caretaker she was in stage 4; but he did a LOT for her. She also has NPH, and I often wonder if we had known/intervened sooner it would have made a difference, but we will never know. Your LO’s family may be in denial (I was), and especially if they haven’t spent as much time with her may not realize how bad things are.

As a POA who was not close with my mom before becoming her caretaker, I can attest to drastically underestimating her needs. 2 years ago I was ready to place her in independent living. She is now in MC and solidly in stage 5. Please don’t stop caring. I wish my mom had someone like you.

darcytg · January 15

https://alzconnected.org/discussion/comment/194595#Comment_194595

Thanks for sharing your experience.

My LO will move into AL next Friday. I suspect much of the emotional support she's been getting from her friends may wane, as well as , being with them.

I hope and pray the place she's going is filled with professionals providing best practices care with compassion.

I am still on pause as I regroup and recenter. Need to get back to work so I can fund a trip back to the west coast to see my LO.

So deeply appreciate all the people here, and oddly,... feel staying connected here allows me to ???? Not sure what...just grateful

harshedbuzz · January 16

@darcytg

There are a lot of different scenarios in which one PWD can be seen as functioning at a different level by different people in their lives.

Sometimes a PWD will showtime for some people- doctors, friends, relatives who don't live with them. And sometimes the person whose responsibility it should be to raise the alarm in the interest of safety is either too close to the situation to see it (the frog in the warm pot of water syndrome), or they feel confirming what they're seeing is somehow disloyal, or they're unfamiliar with all of the ways dementia impacts cognition and blow it off as senior moments. It could be that they POA is reluctant to act because they know doing the right thing will upset and anger the PWD. I found I got a lot of grief from my parents' peers when I insisted on them moving that I think came from their own fears of an adult child putting the kibosh of their shenanigans. And, when you're dealing with older people, sometimes the person who should be making the hard decisions is unable to because of their own cognitive shift.

I agree with @M1, by the time most family members are will to even consider AL, that cruise has sailed and MC will be needed. Assuming your LO is moving into stage 5, she will likely crash and burn in a hospitality-model AL meant for those who want or need minimal assistance. If so, they will notify the POA force the move.

That said, sometimes a PWD who has been living solo and not getting proper care and nutrition does seem to do better in a MCF with meals provided, medication taken as prescribed, socialization, routines to provide structure and dementia-informed activities. My aunt, who'd been living alone until her sister found her sitting in a house in foreclosure with no heat or electricity, flourished the first few years in MC.

That said, I am curious about your relation to your LO and your theme of second-guessing her POA.

I realize this is absolutely none of my business, but it would make it easier to offer suggestions appropriate to your situation, if I had a better understanding of why you are so enmeshed in this while not having the legal means to make decisions.

I get the sense this is not a parent or even grandparent and also a sense that your LO does not have a logical next-of-kin like a spouse, sibling or adult child to act as POA. Is this an aunt or cousin perhaps or maybe a dear friend? Were you not an option to act as a POA when the document was drafted? Perhaps you were a minor or you weren't chosen because of distance?

If the role of POA/guardian was a possibility for you, would you leap at the chance to take on this responsibility? You obviously care very much about this. I wonder if it makes sense to talk to a CELA about the possibility of guardianship and moving your LO nearer to you.

HB

darcytg · February 5

HB

Thanks for your input and willingness to support.

My LO was a stepmother for many years of my life and we remained family after the split. We've always remained in touch, sometimes ver close, other times not as much

My LO's POA invited me out for a discussion as things were deteriorating and I am someone my LO has trusted. It tooke a very short time to realize my LO shouldn't be living alone for safety reasons. I am sad that I came off as sexonding guessing my LO's POA when I was in the thick of 24/7 crash course learning and caregiving. My LO's POA has my LOs best intrests and safety at heart and continues to do the hard work of oversight and face to face connection.

I struggled as I was learning about the disease and knowing where my LO is at ...as we know it's fluid, progressive and unique to each PWD.

I am now in the frustrating spot of remaining and retaining connection from a great distance. This forum gave me hope and not aloneness when in the thick of care giving. I lurk here lots and don't feel qualified to post as my short tenure and lack of experience have little real support to offer to those who are living the daily experiences.

Continue to be ever so grateful for all who are here sharing and for the gift I had to be with my LO.

My LO has transitioned to AL and seems to find it suitable. Hard for me to really tell. She might do well awhile. She seems upbeat when I speak with her most times. Those are fleeting moments on the phone. Othertimes she seems very sad and lonely. My hope is those are fleeting moments.

She doesn't know where to check for mail, so I hope her POA helps her find it when she visits.

Thanks again for your support and caring.

Smilescountry · February 6

I am so sorry for what you are having to go through. Sometimes, when there are a few people who really care about a LO, things can get complicated, even when everyone is a good person and all get along fairly well. My dad is into his second year of having been diagnosed with Alzheimer's, and my mom doesn't have a definitive diagnosis, but something is definitely going on with her, too. Both are in assisted living, but the majority of the people there have dementia, and many are in the latter stages. The facility does a very good job of helping their residents to age in place, if that is the right term! Dad's Alzheimer's is progressing quickly, and I don't know if he will even be with us in another year. Hoping that your LO is in a good AL facility that also provides memory care. There are some that do, depending on the state and the facility.

I desperately want to be wrong

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