What can I do?

Shelbylynn1969 · March 31

Please help. I'm looking for advice & support. I'm an only child & my 84 year old mother is in the throws of vascular Dementia. She was moved to her 3rd facility in September 2023 since first leaving her home to go into a facility November 2019. February 13, 2024 i was informed she'd tripped on her bedding & stumbled. This even caused her to become frightful & not want to walk, so the facility put her in a wheelchair for the time being. She'd stand & easily transfer, but not walk. I'd requested they do everything they could to get her up & out of the wheelchair for fear she'd never get out of it again. I tried encouraging her but to no avail. March 5, 2024 I had a conference call with the director & head nurse about my mother's continued decline. (I live 6.5 hours away from her facility & work 5-6 days a week, so I don't get to visit as often as I'd like, but I call 2-3 times a week to check in & try to see her every other weekend) I was told she's still in the wheelchair & she's losing weight so they're giving her a Boost shake daily. The evening of March 20th a nurse call me to say she's still losing weight so they're upping her Boost to 2-3 times a day, she'sstruggling to chew & swallow anything thicker than pudding or applesauce, so they're putting her on a pureed & liquid diet, she's sleeping 18-20 hours a day & she no longer stands on her own so they have to use the lift to transfer. I "visited" with her 6 hours Sunday the 24th & I had to go outside a couple times to collect myself because of what I encountered. My sweet little mother looked so frail & small in her bed. She's 5'1" & around 96 pounds, only opened her eyes a few times even though she was awake, she'd feel around like a person that's blind, shes been nonverbal since September so now she just grunts & whimpers, she's become incontinent & doesn't recognize anyone. I was completely gobsmacked. My uncle & his wife are her power of attorney because I was gone when all this started, so they stepped in during my delayed absence. This rapid decline is what's shocking to me. Aside from the obvious answer of "spend as much time as possible", any suggestions or ideas, please?how do you keep this from overwhelming you?

harshedbuzz · March 31

@Shelbylynn1969

Hi and welcome. I am so sorry for your reason to be here, but pleased you found this place.

It's hard to be the adult child at a distance as you are. I was fortunate to be able to move my parents before dad's dementia progressed to a degree where moving him wasn't an option. It's never easy to watch a LO's life draw to an inevitable end from a progressive disease, but in a situation like yours being in a position to have limited visits can be harder on the heart as the differences between one visit and the next are much more striking. DH's mom died from other causes, 700 miles away with his older brother overseeing her care and I can attest to our frustration with the complications of distance.

I'm sad to say it sounds as though your mom is in the final stages of this progressive disease. You are describing what one would expect to see in Stage 7 of dementia.

https://alzconnected.org/discussion/65993/excellent-handout-packet-dementia-stages-cgs-actively-dying-tam-cummings

As POA, has your uncle brought in hospice services to give your mom an added level of care at this time? If not, you might encourage him to. Hospice comes with social work and chaplain services for the family which might be able to support you through this with check-ins and a chance to talk— perhaps over the phone or via zoom. Most hospices have a number of chaplains offering pastoral support, so if you don't click with one, you can ask for someone else.

Another thought might be a local IRL support group or therapist in your area. My mom had both when dad was with us. The fellowship of others was a great help to her. Most of the group was actively caregiving, but a number of folks were like you— at a distance geographically but very close to a parent.

M1 · March 31

Welcome to the forum, I agree completely with the above. Sounds like your mom is progressing towards death, and it's been a shock to you to realize that. Hospice can help your entire family and provide additional support to the facility personnel. You don't need a doctor's ordef for a hospice evaluation, you can call yourself. Wd can't always cure, but we can always comfort.

Anonymousjpl123 · March 31

I agree with everything above @Shelbylynn1969 . In this stage, hospice is so important because they can guide you through what you can do for her transition. To make this easier on her and your family. Also despite your extended absence it sounds like your mom is getting the care she needs - responsive staff, your aunt and uncle. I would visit when you can, and use that time for you and your mom. Also it’s good you are in touch with the staff: lots of smart advice here. I hope it can be of use during this very hard time.

Quilting brings calm · March 31

You've gotten good advice here. I’d like to add this: Don’t beat yourself up about the facility changes or the fall. The fall is most likely NOT the cause of the decline - it’s more likely a symptom OF the decline. In addition, my step-father went from being more or less stable in his dementia and his physical illnesses to a rapid decline and death over about 3 weeks. He’d just reached the end of his life span. It wasn’t anyone’s fault.

etjames · March 31

I’ve often thought about your question for myself (only child of mom with Alzheimer’s and dad with dementia) over the past few years and have found a few things that help comfort me while I’m caring for my parents — making sure I’m drinking water or a nice coffee or tea; eating regularly; listening to some nice, soothing music while I’m caregiving; using some easy techniques to calm my nervous system like humming or softly patting my Vagus nerve can bring relief from panic and overwhelm in the moment without being distracting; and finding a place where I can scream as loud as I need to without alarming anyone. You’re already taking breaks to collect yourself, which is a super smart thing to do especially when you’re there for a long visit. You’re essentially running an emotional/psychological marathon, and recognizing how much endurance you need can help you find the things that will help you get through it.

Lynn24 · March 31

I agree. Please don’t be so hard on yourself. My mother has declined at a very rapid pace since we moved her in with us a year and a half ago. Every decision with this disease is basically trial and error because there is no quick fix or one size fits all for any patient. It is a very grueling process, serving as primary caregiver for a dementia and Alzheimer’s disease LO. It takes tremendous courage to choose to take care of your LO, so may God bless you and keep you, may his Grace shine upon you, and give you peace!

anotherday2 · April 1

Everything that has been written is absolutely great advice and please, please please do not be hard on yourself for in truth there is little you can do in such circumstances.

My mum, very much like yours, stopped eating and whilst drinking protein shakes worked for short while she soon stopped drinking also. I was shocked at how fast the decline was towards the end and the horrible nature of it all. I don’t think it was fully explained to me how tough the ending would be or the stark reality of how emaciated she would become.
There is no right and wrong decision with this disease and yes everything really is trial and error for a medical staff that ultimately have no solution.

I hope you find peace with all of this as although I am not the praying type you are very much in my thoughts and I send nothing but my love to you at this time.

Shelbylynn1969 · April 1

https://alzconnected.org/discussion/comment/204046#Comment_204046

Thank you. Sadly,how my uncle sought out a facility, packed up & moved my mother without speaking with me at all about it beforehand nor having me be part of the transition process as well as having a "closed visitation" at the facility & visitation list i was not on for 3 years & couldn't visit my mother has caused a huge fracture in our family. I've not spoken to my uncle since March 2021.

Shelbylynn1969 · April 1

Thank you. I'm just heartbroken & am going to my boss in the morning to let her know I need to put on hold or terminate my current work assignment & get back home so I can spend as much time with her as possible. Unfortunately, I don't know what type of plans my uncle has in place other than she's to be cremated upon her passing. He's very tight lipped.

Shelbylynn1969 · April 1

https://alzconnected.org/discussion/comment/204053#Comment_204053

I need to take the time to research what the stages of Dementia are. I'm totally ignorant & clueless.

Shelbylynn1969 · April 1

Thank you everyone!

I'm feeling very alone here & having missed 2-3 "good years" when my mother was in a facility & my uncle kept me away weighs heavy on my heart. Trying to work through that anger & focus on the here & now. My house is 20 minutes from her facility,but I've been in another state on work assignment sinceright after her move to this care facility in September 2023. It's a no brainer---I'm going to my boss tomorrow to tell her my last day on this assignment is Friday. I have to go home. I have to be closer to my mother & be able to spend weekends visiting with her. I have to, once again, suck it up & call my uncle & ask what's in place for her as far as hospice. I'd rather have it in place than be scrambling to get it in place when my mother turns that page.

Thank you all for the information, support, kind words & prayers. Very much appreciated.

harshedbuzz · April 1

@Shelbylynn1969

This is such a sad situation. I am so sorry.

Unfortunately, as POA your uncle has all of the power to act on mom's behalf. It's not unusual for a visitation list to ban individuals who might upset a PWD or take advantage of them. Sometimes PWD have horrific delusions about those closest to them and it's best to avoid triggering those with visits. It's also common for facilities to suggest a brief period of avoiding visits to allow a PWD to settle in and bond with their new caregiving team.

Or it could be your uncle believes you abandoned your responsibilities to mom burdening him with something you should be doing and the ban was purely punitive which is so unfair to your mom.

There's probably no point in you trying to obtain guardianship at this point. It's time consuming and expensive and unless you can prove he's been neglectful or nefarious you likely won't prevail. But do know that his POA ends at her death and if you don't agree with her funeral arrangements, you may be able to change them as next of kin. If mom's on Medicaid for her care, uncle has likely pre-paid for her arrangements. If that matters to you, I would consult an attorney asap.

HB

Shelbylynn1969 · April 5

https://alzconnected.org/discussion/comment/204171#Comment_204171

Thank you SO much! Sadly, I know no reason my uncle had the visitation ban set up other than control. I was living in her house with her & caring for her while working a full time & part time job. When she first started showing signs, I wasn't local nor able to get home-extenuating circumstances. Once I did get back home, we all sat down & talked & it was agreed that he stayed her primary. He could have easily given it up & I happily would have taken it over. I found out 4 years later that my mother is the 6th family member he's been p.o.a. for! May 2023 I was contacted by the director of her (then) care facility. A "im so sorry it's taken me so long to confirm your her secondary p.o.a. & get back to you" call which was then followed up with the worst 4 words I could have heard.…" we have a situation."

Cliff notes version: my 73 year old mother was being cleaned up after soiling herself & did an outcry that she'd been inappropriately touched. The culprit, my uncle. Yep, heard me right. Gratefully, even though she was sent to the hospital for examination, they refused because it had been 10 DAYS since my uncle had been to see her so theres really nothing viable for them to test & she had become angry, combative, argumentative, etc. The local police & Adult Protective Services were contacted. Nothing came out of it other than the facility's rules staring he has to stay in the common areas with her, can't be in her room & can't take her out if the facility. Staff told me theyd seen him & my mother coming out of her bathroom together & he was zipping up his jeans. They said shes been doing an outcry since shes been there! Family history, my mother's father molested my mother & her half siblings-my uncle. When he was 20-21, my uncle molested my mother & his 8-9 year old nieces-my 1st cousins. I don't know what to think & most times it's all just too overwhelming to deal with.

M1 · April 5

That is possibly reason enough to remove him as poa. I would talk to an attorney. You might also ask for an audit of her finances. So sorry.

harshedbuzz · April 5

@Shelbylynn1969

If these accusations are credible, and not a conflated memory, then I would move to obtain guardianship.

It's not unusual for PWD to recall the gist of something so horrific as happening to them when it was actually something that happened to someone else. My friend's mom believed she was sexually assaulted by the town's priest when it was actually her nearest cousin in another town. This was a well-known story in the family and given as the reason for emigration to the U.S. and a conversion to Lutheranism.

That said, if you mom shared this information years before dementia set in and you can corroborate it with others, I would move immediately for guardianship. The serial POA thing seems like it might be something of a side hustle for him. I'd investigate this as well.

HB

H1235 · April 5

I’m confused your uncle molested your mother when she was young then molested his nieces years later and you were ok with him being your moms POA? You weren’t allowed to see your mom for 2 years and you didn’t do anything to fight that ( especially knowing he is a molester). The concern for your mothers decline into the final stages of dementia is heartbreaking, but the bigger issue is her you uncle potentially molesting her. This is not just a side note. You original post talked about her needing ensure, not walking, not talking, but you didn’t even mention her possibly being molested! Why did you not lead with that? I would fight with very thing I have to keep that man away from her and have him removed as POA and thrown in jail! Lawyer! Emergency! Now!

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