Aging parent and caregiver check-in Sept/Oct

[dish2501]

Big internet stranger hugs all around. I posted this in randoms but it’s better here.

My mom is showing early signs of dementia. She’s 68. Her mother had Alzheimer’s but we didn’t see a real decline until 74ish. It is possible we just didn’t notice as much because she and my mom have very different personalities. My mom is so angry and anxious. She refuses to see a doctor. My dad bears the brunt of it and calls me to vent. He doesn’t want me to say anything to her, but I’m torn. I see her declining and want her to explore treatments.

Those who have been through diagnosis, any tips on getting started?

[mokes]

I haven't posted in this thread before, but I've been helping to care for my grandmother who's been in hospice since about mid-August. I think the end is coming soon as she's not eaten for the past week, and only takes small sips of water/fluid a few times a day. She mostly sleeps but is somewhat with it most of the time when she's awake. She always asks about my H whenever I'm there, so I encouraged him to visit her with me if he wanted to see her before she passes, and she didn't recognize him.

I feel a bit guilty even mentioning any impact on me because my parents have the brunt of the caregiving. I stay with her Thursday evenings overnight and then Friday day. It's really difficult to get any rest there, and I'm playing catch up with work since that means I don't work on Fridays right now.

When I'm stressed, it tends to manifest physically and my husband mentioned I've been sleepwalking again recently. (I sleepwalked as a kid/teen and occasionally as an adult.) Apparently I got out of bed the other night, walked out of our bedroom, down the stairs and yelled "What's going on?!!" before returning to bed. Which I guess is just a general statement on life right now, lol. I wake up SO tired in the morning, which means I struggle to get myself to the gym, so everything is sort of snowballing. I did manage to get myself to a class this morning.

[stemmie]

pinkplasticdoll,

The standard advice we were given was to replace all of dad's briefs with the Depends briefs that look most like real underwear. He adjusted which surprised me as he was absolutely horrified at his mom's incontinence and wearing diapers.

I would avoid most of the medications prescribed for overactive bladder-- many have a link to dementia and some doctors feel it makes things worse.

Is he still safe living at home? I would worry about a fire.

[stemmie]

dish2501,

Hugs. I am starting this path with my own mom (86). BTDT with my dad and as you've observed, personality really plays into presentation. My mom's more pleasant than dad, but she's got ADHD (so already weak executive function) so she's flakier and is struggling with word-finding.

I started with mom's PCP. I sent a note on the patient portal listing my concerns and asking him to do a screening at the next appointment. She did OK on the MMSE, but he still ordered some bloodwork (thyroid, vitamin B12 and Lyme) as well as a contrast MRI. The Lyme was positive, she was treated. The MRI showed some minor issues but was mostly unremarkable. Doc has referred us to the Memory Center. She did bounce back a bit after the abx, but she's clearly having issues.

Because of the new infusion meds, it can be hard to get into neurology/memory practice of late. We're looking at a 9-month wait. From my research, the new meds don't offer much-- especially for the elderly, women and POC. They're expensive and time consuming with infusion every 2 weeks and testing protocols for safety. At best patients can expect a delay of 6-8 month in progression.

[pierogigirl]

Oct 9, 2024 9:38:22 GMT -5 madDawg228 said:

For those of you ending up with a lot of paperwork for being a caregiver, estate stuff, etc: how do you file/store all the physical papers?

I'm currently driving myself crazy finding a good filing system for my parents' estate, brother's guardianship & my own paperwork. I can scan some things, but I need some hard copies of a lot of the paperwork.

I have a binder for my brother's estate (although I can put this away now. The estate is officially settled and the last taxes were filed).and another for his kids' trusts. I keep the stuff I need to use frequently - stuff for doing the taxes and banking in the binders. athis is what I bring to the CPA and the lawyer.

The rest is in a Bankers Filing box in our office closet. I could probably get rid of some of the things now, but I'll probably wait another year or two.

[dish2501]

stemmie thanks. That’s a good start. Sorry you are struggling with both parents.

Interesting about the infusion meds. Not sure 6-8 months is worth it.

[stemmie]

dish2501, This is an older piece that didn't go into the disparities in response to the infusions, but I thought was useful in framing the choice.

www.vox.com/policy/2023/7/7/23784663/alzheimers-drug-lecanemab-leqembi-full-fda-approval

[vasc]

litskispeciality Thank you! Ironically we've had our own problems with Ativan also. Aunt has a prescription for up to 4 Ativan per day. At home it was also written "as needed," however, she took it regularly at least twice per day (once in the morning with all the other pills and then a second dose in the afternoon). When she moved to the assisted living she had to start requesting her doses, which was rocky for a few days until we finally got the orders for a specific time. We've still had to make adjustments...for awhile it was written for a 9:00am dose but she was waking up at 7:00am and being told it was too early to take...causing more distress....but just in the last three weeks we've gotten it fixed and are finally in a good place with medicine. The physician also upped her dose of Effexor for depression.

[pinkplasticdoll]

Oct 9, 2024 13:18:50 GMT -5 minzy said:

Oct 9, 2024 11:24:45 GMT -5 pinkplasticdoll said:

My dad is having incontinence issues and refuses diapers, when he wets himself he is drying the clothes on lamps and has burned holes into multiple pieces of clothing. He doesnt have any medical issues and it seems to be just the progression of the disease. Also, my brother is in denial so thats a barrel of fun.

Can you just send him some briefs (or “undergarments” as I have trained myself to call them)? My stepmother actually pulled me aside once and told me to stop calling them diapers. I didn’t think my dad, the patient, gave a shit, but I asked him, and he said he would prefer I not call them diapers, either, so for his sake, I don’t. These are pretty good to the extent I can review such things without actually using them myself:

www.costco.com/depend-fresh-protection-plus-incontinence-underwear-for-men%2C-ultimate-absorbency.product.100664458.html

I actually have replaced all of his boxers with depends and I refer to them as undergarments , he will just go commando. We have an appointment scheduled for a urologist to see if there is any help they can give him but its not for awhile so in the meantime we are just dealing with whats been handed to us. I appreciate everyone suggesting the depends! 

[nospaekae]

I have an aging parent but I am not a care giver, can I post here?

TL;DR: Is anyone else dealing with an aging parent that was a less-than-adequate parent while you were growing up? How are you navigating it?


My dad was diagnosed with dementia in 2017. My stepmother is retired and is his caregiver. Day-to-day he is able to care for himself and seems relatively himself as far as I know. Family dynamics between my stepmother and I/my brother have never been great so we do not get the full story. She was abusive growing up and my dad turned a blind eye to it.

I recently moved back to my hometown after a divorce and the whole experience of the divorce, moving back, and intense therapy have me really feeling a way that is hard to describe. My dad has always been very difficult, self-centered, and controlling. He still is. Stepmom paints a rosy picture and blames his recent behavior on the dementia, but truth is, this is just maybe a slightly more extreme form of the dad I've always known. They haven't initiated any contact with me and I haven't spoken with my dad since I last reached out 2 months ago. I am an emotional wreck and just really don't have it in me to deal with the whole situation and the feelings it is stirring up right now. But of course I feel guilty. Is anyone else in a similar boat? I guess I'm just looking to hear that I'm not alone, but I'm just so frozen and want to run from the whole situation.

[4speedy]

My mom’s ovarian cancer is back.

[minzy]

On Thursday the social worker at my dad’s nursing home (where he had been for one week) called me while I was at work. We discussed his deteriorating condition and she told me it was “time” I “start heading” over there. It was my twelve hours of higher emotion a month related to my period, so I tearfully tell my boss this time it seems to be it and I’m leaving midday. I cry on the train home, my husband helps me pack up and I leave before the kids get home from school, and I once again drive like a bat out of hell to Ohio. My sister cuts short a long awaited trip to CA to race on a red eye across the country.

I’m not going to say he’s fine, because he’s not. But he has no signs of actual dying yet (thank you underwaterrhymes for posting that list earlier). Meanwhile his twin came in, and we all tried to play it off like, oh NBD, we all just decided to come see you right now. He rallied a bit, perked up some, he even played a very modified game of pool with my nephew while in a wheelchair. Then yesterday at bed he says to me, “we’re not really staying here, are we? When are we going back to [his property?]”

He doesn’t own real property any more because I transferred the titles last week (just within the family, but still).

To complicate things further, during our outing from his room on Friday, two of his immediate nursing home room neighbors tested positive for COVID. Spectacular. On Saturday, he thought one of the staff was a bitch for “rushing” him while he was on the toilet, and his wife actually pulled the woman aside to tell her my dad thought she was acting like a bitch. (?@(!;&:wtf?2! 🤦‍♀️). The background chorus to all of this right now is the woman directly across the hall from my dad who screams “HELP!” every 30 seconds. I timed her for ten minutes and it was nineteen separate cries. Good christ.

My sister and I have sort of joked about writing a book about this entire experience of his pancreatic cancer journey. There have been some real gifts in the process, but I have counted 32 separate mishaps/issues of stress in the past 6 months, none of which were the cancer or the chemo! That part I will not miss when this is over.

[stemmie]

Big hugs to all.

Yesterday was "Take Your Mother to the ER: URI/CHF Edition".

She's stable at the moment but her heart and lungs are in worse shape than her last hospitalization in July. DH and I would like to take a trip next June for our anniversary, but I don't see how I can responsibly do that.

[vmars]

The healthcare industry is really bad in some respects. My dad has been asking for help from everyone to get help with terrible nerve pain and depression. Last week they met with a neuropsychologist who did not provide them with any help or resources. My dad said one of his questions was asking about food he likes to eat. My mom was equally unimpressed. Even in the spinal cord rehab their psychologist was not good or particularly helpful. A NP who visited him at home prescribed him an anti depressant which should help with sleep and appetite, but crazy no doctor has done this and it’s been 3 months of complaining.

[underwaterrhymes]

minzy - liking out of solidarity. I’m glad you found the link helpful. This is hard.

[underwaterrhymes]

4speedy. - I’m so sorry.

Big hugs to everyone who needs it.

[livinitup]

4speedy I am sorry to hear that. That is terrible news. I hope you can both navigate her options well.

[RitzyHeifer]

It’s been a rough few days with MIL - she was scheduled to go to a dentist today to get fitted for new dentures (the ones she is using do not fit at all and are causing huge issues) but refused to go to the appointment. Her blood sugar was all over the place this weekend - H gets alerts from her CGM which were going off at all hours.

Aside from that she apparently has a large (will require surgery) health issue that she’s known about for months but is refusing to see a doctor about. Her sister who is being paid $$$ to act as home health care person because MIL refuses any other in-home help, is who realized this health issue (being vague for privacy and just grossness).

[RitzyHeifer]

((( 4speedy ))) I’m sorry.

[minzy]

vmars maybe this is what the NP ordered for your dad but if not ask about duloxetine (Cymbalta). It helps with both depression and neuropathic pain. My dad has been on it since June due to pain, and thankfully he also does not seem depressed either, despite the shit sandwich staring him in the face, so we’re taking it as a win.

[vmars]

Oct 15, 2024 6:48:21 GMT -5 minzy said:

vmars maybe this is what the NP ordered for your dad but if not ask about duloxetine (Cymbalta). It helps with both depression and neuropathic pain. My dad has been on it since June due to pain, and thankfully he also does not seem depressed either, despite the shit sandwich staring him in the face, so we’re taking it as a win.

It is actually Mirtazapine. A neuropsychologist thinks he should be on Lyrica for nerve pain. I did some research and that seems to be what most people in the spinal cord community are on, but need THC to help too. We are in NJ where weed is legal and he doesn’t seem opposed to trying it.

[lust2hart]

nospaekae, you are not alone! pandce.proboards.com/thread/640172/owe-elderly-parents

[spindle92]

To all of you going thru hard times, I see you and internet hug you all.

I finally lost it today, in line at the gas station counter.
Kind of surprised it took this long but it finally happened.

Here is a summary of my morning:
-8 home health nurse calls to reschedule today's appt for tomorrow
-8:15 wake my mom up, help her to the bathroom and then make her breakfast
-8:45 leave to take my brother to the Dr for a quick blood draw for his months INR testing
-9 is brother's appointment. Of course they are running late
-9:15 home health aid calls to see if she can come today to give my mom a shower
-9:25 Occupational Therapist who is coming to see my mom at 10AM is running late and wanted to let me know
-9:30 brother is finally out of dr's office
-9:45 get back to my mom and help get her dressed for the day
-9:55 Health insurance company calls
-10:15 OT arrives
-10:30 Aid calls to say she is 15 minutes away for my mom's shower
-10:45 Aid arrives
-11:15 I'm standing in line at the gas station to get my morning fountain pop and my brother's INR nurse calls and I just lose it. Tears are streaming down my cheeks and the young kid behind the counter has no clue how to react to me.

[minzy]

I’m sorry spindle92. That is so much and you have been there every step of the way for multiple family members. I see you too and know in my bones the work you are doing, the load you are shouldering. Big hugs.

I too have cried in public in the past week. Pro tip - it’s a great way to keep people from bothering you on the train! 😝

[spindle92]

minzy, thank you so much for the kind words.
and I'm sorry you have shed tears too.

[stemmie]

4speedy, I am so sorry.

spindle92, I am emotionally exhausted just reading that. It's a wonder you have held it together as long as you have.

nospaekae, my dad was a similar situation. He was pretty toxic favoring my sister as his mini-me and, in retrospect, kind of a shit to mom and me. I assisted with the logistics of his care out of love for mom. Had she predeceased him, he would have gone into a facility immediately after I was awarded guardianship. Sis is no longer in the picture.

Mom's still in the hospital. A COPD exacerbation brought on by pneumonia. Tests suggest a worsening of her CHF as well and the coughing probably undid the bladder-sling she had done a month ago. I am advocating for in-patient subacute rehab but seem to be getting pushback from the PT. A month ago she was walking independently to the local shops to look at the new fall clothes, pick up her scripts and grab dinner.

[cricketwife]

Im sorry for everyone dealing with so much. I thought I’d share a sweet thing from yesterday. I took my mom (who has Alzheimer’s) with me to my son’s soccer game (this is a near weekly event). I took a selfie of the two of us and then showed it to her and she said, “Me and me”. 🥰.

[Covergirl82]

Well, today MIL got an official diagnosis of Alzheimer's. DH was not able to go to the appointment, but his aunt, MIL's sister, was able to go with MIL. So now lots to do... apparently the doctor suggested getting an attorney, putting DH on as many accounts as possible, etc. I have an RN friend who worked for the Area Agency on Aging recently, so will get her suggestions and also check the AAA website for a to-do list. (MIL will not be moving in with us, so we need to get her on a waitlist for a memory care home.) Sandwich generation, here we are...

[Wallflower]

I'm sorry, Covergirl82. While I'm sure having an actual diagnosis makes some things easier now, it still isn't easy. (((Hugs)))

[Covergirl82]

Oct 24, 2024 13:30:02 GMT -5 Wallflower said:

I'm sorry, Covergirl82 . While I'm sure having an actual diagnosis makes some things easier now, it still isn't easy. (((Hugs)))

Thank you so much, Wallflower.  Whoever started these check-ins, I really appreciate them.  I personally learn from hearing other people's experiences, and from people who have been doing this for longer.  DH texted me to say that a social worker would be reaching out to him and his aunt, so it feels a bit less daunting, as I assume the social worker will be able to at least provide the "to-do" list.  I am going to have a CTJ talk with DH about assigning to-dos to his sister, for things that can be done without being local.  (She's 1000 miles away, and part of the reason was to not be around her mom.)