New adult child caring for parent. My long intro.

clever_bear

Hi everyone, I'm new here and relatively new to being a caregiver. I myself am disabled and have had several family members with disabling conditions. Along with working in social work, this has given me a bit of an advantage at least in understanding some of the resources available (and not so available).

I noticed some concerning things about my mom long before anyone else did. Though I urged both of my parents to take my concerns seriously, neither really did. I repeatedly begged my mom to go get checked by her doctor. Her doctor then prescribed her a vitamin of some kind, and that was that for several years.

This past spring and summer, my mom began to notice the decline herself. Or maybe my step-dad pointed it out to her; I'll never know which. He passed away in early November rather suddenly. By then at least, her doctor had referred her to a geriatrician in their preferred health system. Her appointment isn't until Feb. 28, and it's 1.5 hours away from our house with my family struggling with transportation even in our small city. Our healthcare system is such garbage.

Also since then, my older sister who lives with mom definitely began spending more time caring for step-dad and noticing mom's decline as a result. Once step-dad passed, we were all fairly surprised at how much he was doing for her to keep her organized and grounded. Top that all off with my mom having major abdominal surgery in early December, and the damage from the anesthesia may never be undone. If I had known before hand that was a risk, I would've seriously urged my mom to discuss risks vs. benefits. But since we still don't have a firm diagnosis, we're just all sort of flying by the seat of our collective pants.

My older sister is the primary caregiver b/c she lives with my mom. I lived only a few block walk away and am over every day for about 4 hours every day except Saturdays when I'm there basically the whole day (right now).

my mom doesn't need full time care 24 hours per day, but she does have needs that seem to fluctuate depending on day/week and that exist throughout a day. There are many things that my sister and I are on the same page about, and some that we're not. More about that another time. I would particularly like to share experiences with anyone else who is sharing caregiving responsibilities with another family member, especially a sibling. 

Further, as is probably true in many other peoples' situations, her pre-existing medical issues are complicated by and possibly made exponentially worse by the cognitive issues. My mom has ulcerative colitis that has historically not been well managed. She minimizes medical issues until they are urgent. The worst example of this was her being sick for 3 days before we convinced her to go to the ER only to learn that she needed emergency surgery to fix a bowel purfuration in 2018. She has always struggled with anxiety. And I think possibly just either has very high pain tolerance, or is not particularly body aware since she is often not able to describe physical feelings of pain very well, or her reports about how serious it is wildly differs depending on who asks her and what part of the day.

On top of that, my mom has the same genetic visual impairment I do. In her case, it has worsened over her life time to where she has very little vision remaining. She becomes lost and disoriented in the house in which she has lived for 8 years. This scares my sighted family members more so than many of the other things going on with her. However, it doesn't actually upset my mom visibly. Being totally blind myself, I see this as the least of her issues given that her vision has been very poor for much longer than the other physical and cognitive issues she's having.

To be clear, she never leaves the house. Also, there is a door that we always keep shut that leads down to the basement where my sister and her family live. My mom only rarely would venture downstairs in the past, and hasn't done so to my knowledge in at least a year. In her current state, we are not concerned about her harming herself or her safety being put at risk if she becomes disoriented in the living room ending up at her desk instead of in the hallway going to the bathroom. I know this may not always be the case as things progress, but I'm extremely confident in that for now.

She's been having significant incontinence issues. I did get her pull-ups which is allowing her to manage that situation with far less mess, less dirty clothing, far more independence, and thus more dignity as well. I'm frustrated that my older sister has expressed concern that my mom is wetting herself on purpose because I see how upset it makes my mom when she has an accident. It's not a picnic for any of us to have to deal with the messes when they happen. My mom is embarrassed and upset, my sister is in significant pain with having to bend and reach to clean up messes around the toilet, and I also have chronic pain issues and am frustrated that lacking vision means sometimes I can't clean those messes up for my mom and that I need to ask my sister for help. But none of that is my mom's fault by any means.

Her appetite is down to almost nothing. It's all we can do to get her to eat small snacks at meal times. D/t medication regimend, we do manage to get her to eat something 3 times a day, but a substantial meal for her is often a small ham and cheese sandwich made on a hawaiian roll (yes, those little ones)... so you can imagine what her non-substantial meals are like. Insure seems to increase bowel incontinents issues, though since I can't get my sister to record anything with regularity, I am not certain. I know my sister doesn't see an insure as substantive, so she'll give my mom a small container of peaches instead.. I'm not saying one is necessarily better than the other, but a nurse told me it might be just about caloric density. Insure is definitely more calorie dense than a little container of peaches.

Being new to so much of this, I have so many concerns and questions. I've been searching some topics, but will likely post much shorter topical posts in the future. Honestly, it's been so nice to read some of the posts here and remember tat I'm not alone with this. Some days I feel so frustrated and hopeless because of the family drama. I'm watching a third parent die right in front of me, and it's so painful. That may sound melodramatic, but my mom's decline has been fairly precipitated the last few months. I lost my step-mom a year and a half ago and my step-dad just a few short months ago. They have all been in my life from an early age, and were all friends, even attending parties for us kids at each other's houses. I was very lucky. I have been close to all of my parents. I have no close friends with whom I talk on a regular basis these days. I'm in my mid 30's as my mom had me later in life. While losing parents and watching them struggle is never easy, I feel like I barely got to enjoy my adult relationships with them.

And in that respect, I remind myself I am also very lucky to be spending this time with my mom. In caring for her, we're also making memories that I can carry forward with me. I didn't really get to do that with either of my other parents who have passed, nor am I likely going to get the chance with my dad. But I can take this as a blessing and an opportunity.

As all of us know, that doesn't make caregiving easier necessarily. I'm giving myself permission to feel angry when my sister keeps me out of things intentionally. I can feel sad when my mom talks about how upsetting it is that she can't do things she used to enjoy for whatever. And I can try to be happy when something I do bring her joy or relief. And each minute at a time.

If you read all of this, or even skimmed it, thank you. I'm glad just to be here, part of a community for support. I know I'm going to need it.

harshedbuzz

@clever_bear

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

Your first paragraphs sound very familiar. My mom actively avoided having dad evaluated for a decade. Initially, I made the rookie mistake of engaging dad in expressing my concern about his mood changes (2005) and dramatic lapses in memory (2008) which put him on the offensive and delayed my getting traction until he had a psychotic episode in 2016. BTDT.

It sounds like your late stepdad was providing a lot of scaffolding for your mom. Sometimes a spouse will do this without in realizing how much support they offer through the day. Some, like my mom, are deliberately secretive about the needs of the spouse because they feel it protects dignity or because they don't want others meddling. My mom was the latter, as was my uncle. In both instances this led to a complicated and costly situation.

I hope you are able to make the upcoming appointment which may give you a sense of what you are up against. I live in a well-served larger community with ample transportation once I get to the train 6 miles away but have found sometimes to top docs are an hour + drive and $30 to park of 2 hours/2 trains to get to and totally worth it. Fortunately, once testing is complete, you'll likely only have to check in yearly if you chose to. We'd gotten all we could from dad's neurologist and added a geri psych to the team making those annual checks redundant.

A couple questions. Firstly, are the legal pieces in place to act on mom's behalf. Has she named a person to be her dPOA for medical and financial decisions? If she hasn't or is resistant to doing so, guardianship through the courts may be required. Ideally, the POA should be one person for both when there are siblings. Often family members have very different views about what's best given the limited options available. One sib might be in denial that things are as grim as another does, one sib might have different criteria for placement or be very invested in "Keeping mom at home" or preserving assets for an eventual inheritance. It can get ugly. Real ugly. I get a feeling your situation could be one of those with a potential for sibling fallout over care decisions-- it's pretty obvious that you have some differences of opinion over your sister's choices in feeding and her reaction to incontinence. FTR, I am totally with you on the latter issue and could be on the former depending on mom's stage of dementia and how readily she accepts Ensure. (FYI-- your sister may find early on that a toileting schedule where she takes mom every 2 hours or so can cut down urinary incontinence to a large degree early on)

(This is a good piece on stages of dementia that may give you a sense of where mom is in terms of disease progression. Urinary incontinence is usually a stage 5 symptoms)

Tam-Cummings-LLC-Handouts.pdf (tala.org)

Secondly, what's the situation with your sister. Is she the right primary caregiver for your mom? Is your sister a retiree staying with mom out of the goodness of her heart? Or is it one of those all-too-common symbiotic relationships where a sibling who doesn't have a home gets a place to live in exchange for keeping an eye out for mom? Sometimes these happen when an adult child wasn't as successful as their sibs and didn't transition to a fully independent adult or had a life changing event like a divorce and find themselves as a single parent. The symbiotic situations can be tricky. The caregiver sibling may feel put upon as care needs escalate as they always do. Or they may feel threatened by the potential end of their living arrangement if mom moves into care and the home is sold to pay for it. Sometimes, a PWD is financially exploited by an adult child who takes advantage figuring they'll take "their" inheritance up-front before the nursing home gets is as payment for their caregiving.

Do you access to her financials? Folks in this stage of dementia are prey for scammers of all kinds-- online, over the phone, door-to-door and via USPS. If you have a POA, it makes sense to lock down her credit and check her accounts regularly.

I can appreciate wanting to keep mom home given her vision issues which do complicate care options. (I have a deaf cousin who lives in a kind of 55+ CCRC for deaf and those with hearing loss. Everything is adapted to meet their needs with levels of care from fully independent living to AL to a SNF when my cousin stayed while rehabbing after back surgery. I have never seen such a concept for those who have blindness/low vision) Care needs escalate with the progression of dementia. It's also true that many/most PWD get to a point where they don't recognize the home in which they lived their entire adult lives as "Home" and get lost trying to find different rooms. Sometimes keeping a PWD home doesn't seem to prevent the confusion that would come with a move.

There comes a time when a PWD cannot be left alone at home at all, incontinence will become the normal, and you may be hand-feeding her. It becomes 2 big a task for one person or even 2 if both are employed or actively raising children. Hiring caregivers in the home is not always an easy option and as care needs increase may not be financially feasible unless mom has a solid LTC policy. It may become necessary for mom to go into a MCF at some point. In any case, it's best to have an executable Plan B at the ready. To that end, you might want to tour both SNFs and MCFs to get a sense of which would be the better options for mom as things can change in a heartbeat-- a stroke or a bad fall can make immediate transfer from the hospital necessary because of care needs. It's best to know what you'd want ahead of time.

HTH-

HB

ButterflyWings

I am so sorry you and your family are going through this. Forgive me for being direct, but I worry that your confidence is misplaced.

Having been caught flat-footed many times by my DH's Alz rollercoaster, I assure you she might easily do things today or tomorrow that she has never shown signs of doing before. Like opening that door to the basement and falling. Hard. It just isn't worth waiting until the first time something goes very wrong.

Even sighted PWDs eat and drink non-food, turn on gas pilots, misjudge temperature, time of day, distances and danger, etc. As their brain disappears, vision, smell, hearing, and judgement etc. are drastically affected -- often in a split second with no notice. Honestly, 24/7 supervision is needed much sooner than many people realize, we learn on these boards. I can't imagine that she is at the incontinence stage and still reliable to not get up and wander in the middle of the night. DH tried to leave via the window once (what?) and I had to replace the kitchen tiles due to flooding when he simply left the water on. For hours. Many PWD's rummage and even follow up on delusions or hallucinations in the wee hours when we assume they are sound asleep -- maybe getting into things inside the home, maybe eloping when least expected. Locks and alarms were a must for us, from early mid-stages.

Behavior and often personality of our PWD LOs just changes drastically. Even if temporarily. Please review the staging link HB shared above, and consider as most of us have learned, that this situation might already be closer to a 2-alarm fire than you realize. Again, I'm sorry. We are all in the same leaky boat with you. Bailing water for dear life, just trying to minimize risk, avoid at least some of the catastrophes that dementia causes, and keep our LO safe -- even when "happy" is not possible.

clever_bear

Hi @harshedbuzz 

Thank you so much for the thoughtful response.

I tend to think with my parents it was a combination of denial, protectiveness, anxiety, and that they do see me as a medaller. I am only in so much as I, unlike the rest of my family, will not just roll over and play the denial game. I've spent years in my own therapy learning how to set more healthy boundaries, learning I can speak up, and learning how to acknowledge but not be ruled my emotions. I'm not perfect by any stretch, but I'm not pathologically conflict averse like several of my family members. This makes me look like a medaller next to them.

Anyways, you're spot-on on a lot of those reasons people tend to passively or actively avoid these things. I understand, and yet it doesn't make us feel a lot better. It doesn't take away the what-ifs. And I'm at least very lucky in that hers wasn't that progressed before someone was able to step in and start trying to help my mom figure it out.

Thank goodness my step-dad, in being the organized person he was, did have them go through and set up DPOA for both of them in case something happened. I am DPOA along with a step sister. Largely we're assuming the joint was just in case something happened to both of them at the same time. And she and I are both POA for the trust my parents have set up to manage their assets once both have passed as well.

If I've learned nothing else, parental illness is rife with opportunity for family fallout even when you wouldn't expect it. My sister and I are both strong-willed, smart, opinionated, capable people. I've got my master's degree and she has her GED, but you'd never know the difference in talking to us. The only big difference is that I work a healthcare adjacent job, and medical things have always really fascinated me. So I understand much more than the aerage person about medical stuff, for lack of a better term.

Thank you so much for the handout. I'm strange in that information tends to soothe my anxiety some even if it's like "this is how much it can and will get." If that makes sense. I feel better being able to try to mentally prepare rather than feeling like I'm constantly being caught flat-footed.

The situation with my sister is... a little complicated. She originally moved in to a house with a mother-in-law basement 9basically kitchen, bathroom, separate laundry facilities, whole separate house but in the basement). The point of that was that my parents were retiring and knew they'd need more help, and it allowed the families to use finances to help out both parents and sister's family. My sister is too disabled to work, but the government says that's not true. Then again anyone's who's ever applied for disability can attest to what a mess that process can be.

Anyways, so she doesn't work but her boyfriend does so they pay the utilities and mom pays morgage, home insurance, taxes, etc. I know when mom dies, the house is sold and the money is put into the trust to be doled out evenly amongst all 7 of my parent's children. I'm not sure if it's only if mom dies, or if when mom is no longer living in the house. I don't think any of my step-siblings are heartless enough to cause problems, but I've stopped trying to be surprised at how crappy some people can be about money.

I have repeatedly said that I wouldn't pick any of my other siblings to be the primary caregiver for my mom. My older sister is the best choice for many reasons including her organization, intelligence, ability to manage many details at once, and her ability to problem-solve. So please keep all that in mind when I say any of the following.

It's true, we clash and don't see eye-to-eye. My sister has some specific biases that will make the future difficult, I can say for certain. She thinks all nursing/rehab/ALFs are terrible, awful "homes" we put people. While I absolutely abwhore the for-profit model and my one grandmother died because of the neglegance at one of them, I know they are not all like that. My dad and step-mom were able to stay together: he in ALF and her in the nursing home part on the same campus meaning they could still spend time together. This was once she became too disabled and could not feasably live at home anymore. That place was wonderful and my grandmother on that side is still living there. Some of the staff have remained friends with my dad.

I understand my sister's reluctance, but I don't understand a all-encompassing opinion approaching dogma that is not necessarily based on fact or even any experience. And I know for a fact that her feelings on this aren't due to concern over housing procarity should the legalese prove to kick in if my mom is no longer able to live in the home. She expressed this opinion to me when all we were considering was very short-term rehab after mom's surgery when she was experiencing a few days of anesthetia-induced delirium (thinking hospital staff were going to poison her, seeing things, etc).

Your point about things changing very quickly and having a plan B in place is a solid strategy and a great idea. But you can understand some of the buriers we're facing when it comes to figuring out that. My sister once told me that you can't plan for the future. I think she meant that you can't plan for every eventuality. I'm hoping I can talk some of the health care people around to helping me talk to her about these things.

My mom saw my step-dad competently handle scams for almost a decade. While I don't want to assume, I feel confident at least her understanding the danger out there makes her less trusting and would mean more hesitancy when sharing information that would be potentially damaging. While her accounts aren't exactly locked down per say, I know my sister is keeping an eye on things. And until June, my mom has someone coming every couple of weeks from the state to help go through male and help deal with some financial stuff.

Thank you again. It is just so nice to know I"m not alone.

clever_bear

But this is what I meant about her other medical issues complicating things.

Her urinary incontinence isn't constant nor is it steady throughout a day. In fact, it seems to have been significantly worse over a few days and is now better, though it's hard as the pull-ups have given my mom independence in managing it mostly without help and my sister doesn't notice/record anything like number of pull-ups used etc.

As she is having to go more often than every 2 hours, a toileting schedule would either have to be uncomfortably often for everyone involved or... The other thing is that she knows when she has to go. She doesn't wait. But yet in the time it takes her to walk to the bathroom, she's going. She believes it's d/t her water pill. I'll admit it did worsten in the morning. But is it related to the surgery possibly and more pressure on her bladder or things shifting around? Is it normal since she's been a heavy woman who had four kids? No one can really say.

The bowel incontinence was happening long before the surgery when her cognitive symptoms weren't even taken seriously by her doctor. That is likely a ulcerative colities flair-up, diet, or both. Again, she goes to the bathroom as soon as she feels like she has to go. In walking to the bathroom though, she isn't able to hold it. And she does have a gastro appt, but the soonest was Feb. 02 and we've had the appt since Christmas. 

Perhaps incontinence is a poor choice of words, given she feels she has t go and immediately acts on the urges. She just can't make it and I'm not sure what might be causing that. I know typical incontinence is just unaware you have to go or failing to act on the physical urge.

"Having been caught flat-footed many times by my DH's Alz rollercoaster, I assure you she might easily do things today or tomorrow that she has never shown signs of doing before. Like opening that door to the basement and falling. Hard."

You are so right. And at the same time, my sister and my mom are the other two calling shots in this situation and we are absolutely not financially in a position to have anyone here 24 hours nor does my mom need ALF or MCF yet. I'm not saying she wouldn't do well at ALF or MCF, but that she is also doing well at home. She and my sister have worked hard to stick to a more set routine, and we've also been hastling my mom to do her PT exercises. She's been doing more for herself in the past week as a result of all of this, and seems over all to be doing better minute to minute.

It sounds like I'm excusing their reluctance to be realistic about the situation. Please remember that we haven't had a firm diagnosis from a doctor yet, which my family treats like word directly from God practically. I understand their reluctance, but I also cannot be seen as the person pulling the alarm unnecessarily. Nothing will lose me credibility faster with my family, and as I'm the voice of reason in many ways,, I'm hesitant, as you can understand, to lose that.

I only bring up the stairs thing because people who haven't lived with a blind person will immediately assume it's an immediate safety risk. I'm absolutely on the same page that I assume these things will become an issue. I also just understand that there's an inter-play between my mom trying to use vision she on longer has to try to get around (following lights between rooms for example) and instead following light from a window on a sunny afternoon that wouldn't be there any other time of day. It's a good example. It's an aspect that is more complicating and freaks my sighted family members out, but is honestly the smallest fish to fry at the moment.

ButterflyWings

This article is an excellent resource to understand what happens when dementia enters the picture (diagnosis or not), and what may lie ahead. Perhaps it is something your family members and you can review just as an FYI at the very least. It was extremely helpful for me and many. Good luck to you.

https://www.smashwords.com/books/view/210580

harshedbuzz

@clever_bear

There are a couple of things that leap out at me as complications.

So often people think of dementia solely in terms of memory loss. There are other very critical losses that play into their cognition that are impacted very early on in the disease process-- reasoning and executive function. So, while it's great that you've done the therapy to get into a good head space in terms of interacting with your family and instituting boundaries, but these may not work when interacting with you mom. She can't learn. Even if she could parse cause and effect, she won't recall the lesson.

Related to this, your confidence that mom would be wary of scammers as a result of observing stepdad manage this risk seems misguided. For that to be the case, mom would have had to have been an active observer of the scams, recognize the red-flags (which change constantly), and recall how to solve the problem. Mom let dad "play on the computer" because she's one of those people who needs a fair amount of "me time" and in the early/early middle stages he was unable to entertain himself. He was day-trading and lost $360K. There's no do-over for that.

My mom and I used to split hairs over the definition of incontinence. Perhaps this is a tough symptom for some folks to accept in someone they dearly love or maybe it's related to her own moderate stress incontinence. Mom would swear he was just "having little accidents". At the end of the day, if #1 or #2 is landing somewhere other than the toilet in most instances, it's incontinence. Dad had damage from prostate radiation and had very occasional issues with bowel control on and off for years. Normally urinary incontinence precedes bowel; with dad it was the other way around.

Loss of toileting skills tends to happen before actual incontinence. Most caregivers report their LO no flushing, putting the used paper in the waste basket, and not cleaning up-- hand washing or wiping which can lead to UTIs which can trigger off-the-wall-symptoms.

At the end of the day, the POA is who makes the decisions. It's nice, but not necessary, for other family members to agree. When they don't, it can get ugly and that'll be where your therapy will come in handy. Is the co-POA the sister in the basement? Is she a full-sib who would have witnessed dad's positive experience in LTC? Could it be that this about her own fears as a person with a disability needing this kind of care one day? Or is she stressing about the end of a living arrangement that allows her to enjoy a higher standard of living then she would otherwise?

Sometimes in families, the person who becomes the default caregiver is not the logical option. It could be the youngest child who "gets stuck" because they weren't married/raising a family when things went sideways. Sometimes it's the adult child who hasn't been successful in a career for whatever reason and stands to gain rather than lose in taking the role on.

Sometimes, a multigenerational family set-up is great for a time, but if the elder develops caregiving needs that exceed what the younger people signed on for, it can cease working. My cousin and grandmother (who raised her) bought a house together and lived happily for years-- everybody got a great house in a fabulous school district, grandmom wasn't alone and had rides wherever she wanted, cousin generally came home to a tidy house and dinner and never paid for childcare. It was a win/win until grandmom got Parkinsons/SNP and needed dedicated caregiving which my cousin, who was then a single mom, couldn't provide. It sounds like your sister maybe isn't suited to the task as it's morphing into actual caregiving vs companionship. You state that she's not able to work because of a disability, and yet your family is relying on her to do some mentally and emotionally taxing labor. I see a similar thing here when adult children expect an elderly parent to care for their PWD at home with limited support-- I mean would you hire an 80-year-old off the street to fill this exhausting 24/7 position?

A POA can be changed. If an attorney deems your mom competent (the barrier is not so high as one might expect), she could write a POA naming you alone which would be simpler than coming to a consensus with someone who isn't as close to the situation or who maybe has a conflict of interest. A nuclear option might be to try to obtain guardianship via the courts if the current POA isn't working. I would consult a CELA.

Is the trust established to shelter the house from Medicaid or for ease of asset distribution at death? There could be some issues, depending on where you live, if the house is sold while your sister lives there as she likely enjoys some tenants rights at this point. I have a friend trying to move into her first home under a moderate-income program (so serious wait-list) who is trying to evict a nephew she allowed to stay with her from her Section 8 apartment. He doesn't like the new location, so he's not cooperating. She's a paralegal and understands the situation better than most.

Once your mom has been evaluated, you'll have a better idea around next steps.

HB

clever_bear

https://alzconnected.org/discussion/comment/196077#Comment_196077

m

clever_bear

Hmm, let's try that again.

Hi @harshedbuzz,

Omg, the story about your dad day-trading is ... awful. Mostly because your mom really just didn't understand the danger and had no idea. I can only imagine what a shock that must've been to all of you.

My mom does not access the computer d/t not remembering keyboard commands needed to operate it using a screen reading program. She doesn't answer the door d/t multiple reasons mostly worrying about accidentally letting the dog out, and that managing the door and her walker is hard and it's easier to leave it to someone else. We also have one of those security camera doorbell things that I know my sister checks every day.

My mom also cannot read her credit card numbers, bank account information, or debit numbers either to give them out. Again, I understand that scammers can collect all sorts of personal information that would endanger my mom beyond just credit card numbers. My sister can see incoming calls on their xfinity system. Also, while I don't think anyone is looking at statements day-to-day, I know my sister is helping my mom start to get financial stuff in order. Part of that is reviewing statements as they come in the mail. My step-dad's phone also gets text messages whenever anything is charged to their credit card. Up to the point of not allowing her access to the phone at all which seems draconian, we're doing the best we can to manage that aspect of it.

Sister in basement is technically half-sister. She did not witness dad's good experience with the ALF unfortunately. He is not her bio-dad, short explanation.

At this point the only discussion we had about a facility of any kind was very short-term in nature (like rehab following surgery) so it wouldn't have put her housing at risk. And she wasn't even willing to discuss it. Housing issues may make the situation more complicated. Luckily, she is not the one who shares DPOA with me. So when/if I have to make that decision, it will make things both more and less complicated than if we were both DPOA.

This is at the crux of some of the issues I'm having with my sister. She tends to make decisions, and what she says goes even if I have reasonable objections. There is no compromise, no room to consider alternatives, etc. She knows best.

And until someone activates DPOA, that is how it will probably be. And we are probably at that point, though there is no pressing decision that needs to be made necessarily. And I suppose some of my reluctance is fear of alienating my sister because I have continuously been the one to encourage mom's active participation to the maximum amount she is able in the decision-making process. That doesn't change with DPOA necessarily, but I've also noticed how simple decisions, at times, can seem difficult and cause more anxiety than it seems worth for my mom. And to maybe a point made by someone else, I won't want to be trying to get DPOA in the middle of a crisis vs. having it in place.

And mostly, my sister does what makes the most sense and most of the things we agree on. It's just when I question anything, instead of considering that I'm on the same side as her with the same goal of looking out for mom's well-being, she seems to take it as personal criticism. I don't know how to get past this part. There are other issues we have in communication (she accuses me of being sarcastic or "sh!tty) when I am just attemping to have genuine discussion, so then discussion gets side-tracked and becomes about whether or not I was being a jerk or not which obviously is not the original point of the discussion or useful, so nothing gets resolved and she just keeps on the way she was before with no changes. She seems intent on doing it all whenever possible. And only when it's something thta doesn't seem to have much significance, is she willing to even allow me to be involved. She even ignored my request to be involved in a recent doctor's appointment. I just asked her to call me, and she out right ignored me. Consider that this is only my side of it, and even I've considered that it's possible she didn't see my text. So next time I'll send more than one. I just hate that it feels like I'm having to be strategical when dealing with the person who is supposed to be on my mom's team, too. It's really frustrating that I'm working with someone who is willing to literally sacrifice their well-being for my mom, when that makes me look like the bad guy or less-invested child when I won't go to those extreme lengths.

So that is where some of the friction is. But I also don't think we're at the point of mom needing a facility. The incontinence was much worse without the pull-ups, and we could not have continued the way we were without them.

Most days (5 out of 7 I'd say), mom manages toileting just fine independently. Yesterday, for example, she had several accidents but they were contained by the pull-ups. She was able to dispose of them, clean herself, and go about her day without any assistance. She's flushing, maintaining good hygene, mostly asking for help when the mess is too much to manage on her own, and putting any soiled clothing in the laundry. She also usually remembers to tell me when laundry has built up needs to be done as well which is unexpected. We're still struggling with possible on-going UTI(s), but those have been an issue for several years, certainly pre-dating any other significant cocgnitive symptoms. Her urologist believes it's because of the bowel issues she's had which makes good hygene difficult under the best of circumstances. The fiber seems to be helping. And again, I cannot stress enough that some of these issues have been occurring for years and have existing attempts to cope in place like a low-dose daily antibiotic. But even before, she would occasionally have break through UTI's.

One thing I can say is that my sister has worked hard to get herself and my mom into a really good routine over the past 2 weeks or so, and it shows. That along with having my mom do her PT exercises twice a day and being drill sargents about it, my mom seems to be doing much better in a way that honestly surprises me. When she's up, most days, she's talkative and not withdrawn like before. Part of me wonders if it was more grief and depression causing some of the issues before. Along with being on a stronger antacid, her apetite has improved marginally. Not where it needs to be, but better than it was. Her mood is also significantly better over the past week.

I agree that her upcoming appt will probably provide some help and information that will be useful in determining next steps.

Thank you again, a thousand times, for sharing your experiences and things to consider. More than that, thank you for reading my ramblings and helping me think/talk through my ambivalance on some of these more difficult issues. Though therapist and partner have been great, they haven't been here and don't have practical advise to offer.

Phoenix1966

Just to add a small wrinkle(and again point out that a discussion with a CELA might be a good idea) that if your mother might need to qualify for Medicaid(and Medicaid rules vary by state), she potentially could leave the house to the sister living there if that sister was providing care at a level that helped your mom stay at home(dressing, meal prep, toileting, bathing, physically getting out of or into bed). The sister would have to live there for the two years immediately proceeding your mother entering a nursing home or other Medicaid approved facility. Again, details such as level of care vary by state. But this transfer of home ownership would not affect your mother’s Medicaid application and would not be counted against her in Medicaid’s typical 5 year look back.

It’s referred to as a Medicaid Caregiver Child Exemption(or something similar, again depending on the state). You can read a little more about it here: https://www.aplaceformom.com/caregiver-resources/articles/medicaid-caregiver-child-exemption

And I agree with HB’s point that your sister might have some tenant’s rights at this point, so it is probably best to get this all sorted out sooner rather than later.

harshedbuzz

@clever_bear

Thanks for filling in the holes.

This isn't an ideal set-up. I personally would not choose to be a co-POA. It seems to cause more problems. I was a co-POA with mom for dad, but only so I could manage the logistics of listing and selling their homes in other states, so mom didn't have to be away from dad. In theory, mom made all the decisions but she's a very passive person with anxiety issues who is pathologically decision-avoidant. In reality, I often provided options and she opted for my first choice. I am a successor agent after an older cousin for my last remaining aunt. I personally wouldn't have physical day-to-day care of a PWD unless I held both POA for both medical and financial. I refused to be co-executor on dad's will because he wanted me to share it with my uncle.

It sounds like the on-site sister has come up with a good routine for mom and that mom's responding well to it. That's huge. A lot of caregivers swear by bidets for cleanup. One caveat is that they need to be introduced when the PWD can still get used to it.

I wonder if there's a little ableism in your POA-sister's approach; maybe she thinks it's easier to her to sort things out. Or maybe she just finds discussing the situation-- on top of already handling it-- unnecessary, a waste of her time or as if she's being judged. She just might not have the emotional bandwidth to add that to her day.

HB