Long Distance caregiver soon temporary in-person/primary - advice?

LGS_in_NYC

Hello all! My mom (79) has moderate Alzheimer's. I live in another state with my husband and kids, but I will be in the role of fulltime caregiver temporarily in a couple weeks, because my Dad has to have a triple bypass and valve replacement.

Mom can carry on conversations, but won't remember them - gets lost, needs help dressing/self-care, etc. She responds well to me, I've visited a few times since things took a turn and there has been more sundowning (October 2022). I have been able to talk her around from a bad spell, bring her back to remembering who I am etc. But I've still only been a temporary relief for my dad. I've never done 24/7 care.

I will be down there for the surgery, hospitalization, and the first week of recovery - we are fortunate to have many family and friends eager to help. Will have to play it by ear, depending on Dad's recovery. My husband is ready to solo parent our two (teen) kids while I'm away.

If anyone reading has had a similar experience - being the long-distance adult child of a parent with dementia, suddenly transitioning to caregiving short- or long-term - I would appreciate any and all advice.

M1

Welcome to the forum. I haven't been in your shoes, but I'm a retired primary care doc. This probably isn't what you want to hear, but I would count on need for a LOT longer than his first week at home. It may take him six months minimum to recover--and even then, he may not be able to provide the scaffolding she needs. I can almost guarantee you that you are going to be surprised, and that her condition is worse than you realize. Spouses knowingly or unknowingly provide huge, huge amounts of scaffolding to their affected loved ones, and when that is removed, the true extent of the dementia becomes apparent. You should just be prepared for that. Be prepared for her to be resistant to assistance with toileting, dressing, and showering, also. Any change in routine is going to be very hard for her, but it's good that she's responded well to you in the past.

Do you have a backup plan? He may need to go to rehab from the hospital, and you may need to put her in memory care either temporarily or permanently (for instance, what if he has a complication or God forbid, doesn't survive the procedure?). If I were in your shoes I would start right now investigating facilities near them that can offer a respite stay, typically these are at least a month, but that is NOT too long given what he is facing.

I wish you well and do let us know how it goes. I'd love to be wrong!

Emily 123

Hello,

I agree with M1. Physically, it's a lot for your dad to recover from. I think this may be eye-opening for you in terms of the level of focus it takes. It might be time to provide more support for them both. While friends and family want to help now, I'd have a backup in the wings for the post-op recovery period--maybe an aide to come in to assist with your mom, or at least to take over the household chores (cleaning, laundry, cooking)? If your mom's at risk for wandering or acting out when she sundowns then it might be better to at least have one in the evenings. If something emergent happens to incapacitate your dad when no-one's around your mother is unlikely to be able to rescue him. That's going to be beyond her abilities.

In terms of day-to-day care, you'll want to keep her day as routine and calm as possible. Follow what your dad does for her -what cues does she need? If he helps her with hygiene, what's his routine, where are the wipes, etc. Is there anything you need to be vigilant about, like making sure hands are washed after using the bathroom? What soothes her? Music from a person's youth can be relaxing--what does she like? (I have a 'Big Bands' and a jazz channel set up on Pandora for my mom). Part of the disease progression is the loss of executive ability. Your mom may not be able to engage in or initiate tasks, or prefers to sit quietly because activities have become challenging--that's ok. She doesn't have to be doing something all the time. Perhaps your dad knows a few things she likes to do and you can have those ready to go--people here say that sorting socks is an easy one to do.

You may see that her sundowning is exacerbated the more unsettled she feels, and she's likely to become unsettled without your dad. Realistically, she doesn't need to know he's having surgery, since telling her may make her anxious and get her into a feedback loop of repetitive questioning and rising anxiety. Come up with a reasonable fiblet for where your dad is.

('Fiblets' are white lies we tell our loved ones, with the goal of removing sources of anxiety for them because they can no longer process information or emotions well. A fiblet can be something like telling them the car (that was sold three years ago) is in the shop when they want to drive.

You may have a boatload of people that want to come by to help, but monitor the traffic in and out. She may struggle to process what the activity means and that struggle can tend to ratchet up anxiety levels. If people are going to drop by, be a traffic cop. Those folks will leave, but you'll be left to deal with a tired sundowny mom in the evening.

If there are concerns about your mom's sundowning or becoming anxious it wouldn't hurt to pre-emptively discuss those with her care provider to see if they have any recommendations in terms of med adjustments to help her.

Best wishes,

the bff

Hi, LGS. Ditto M1 and Emily.

I have some experience although slightly different circumstances. My LO and I live on opposite coasts - I moved away over 30 years ago. We have been best friends for 45 years, met on the job as young adults. In June 2022 and June 2023 I provided respite care so LO's sole caregiver/daughter could take her family (including disabled adult) on vacation. Two full weeks each time, 24/7, just her and me. She doesn't remember when, where or how we met, where I live now or my occupation (same one). I am just this person who is magically her best friend. Short-term memory is nil; she would often disappear on me, then reappear 30 minutes later, and be surprised to see me. Endless repetitive questions - often very hard to not lose patience, and just answer the question with a straight face. Don't argue or correct. Fiblets are your best friends. Empathize even if you know what they are saying isn't true. My favorite types of phrases: sounds about right, aw that's too bad, and when she criticizes someone else I say "how rude/mean of them," etc. You will be shocked at the level of apathy and distraction. She hides everything and we spent at least an hour each day on a treasure hunt (her unit is 900 sf, but it's amazing how large it is when you're trying to find something that they've hidden with no rhyme or reason). You have to monitor her meds religiously. It often took 2 hours to get her to take her meds - she would say she had to eat first, and get totally distracted - the distractions were totally random and "meaningless" to me (moving papers around, looking in boxes). Alarm reminder on her phone was useless - she'd just ignore it - so a human being was the only way to ensure meds were taken. At least five reminders every time. I was taken aback when she didn't recognize the sound of the central air kicking on.

It was so stressful, and, like someone said in another thread, walking on eggshells all the time.

I was so relieved when I boarded the plane to return home - but when I landed at the layover, there was a text from daughter that they couldn't find LO's ipad - so had to make calls to try to track. It turns out she took the ipad when my back was turned for two minutes, and hid it under the seat in the car. Thank goodness I was driving daughter's car and not my usual rental!

So, LGS, I wish you the best. You will have to answer questions about where's your Dad (craft a fiblet ahead of time and be ready with a response) and I know you will have your hands full, and worrying about your Dad as well.

harshedbuzz

@LGS_in_NYC

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

I was a long-distance caregiver for my dad when my mom was hospitalized with autoimmune liver disease. They were spending the winter in FL and while I knew mom was under the weather, I was shocked when I got a call from the hospital where mom was admitted after a neighbor recognized that she was in trouble and took her to the ER. Dad was at that point undiagnosed as mom refused to have him evaluated until she nearly died with him as her advocate. I would put him at a solidly stage 4/5 on Tam Cummings 7-stage model at the time.

My experience was that dad was a very different animal without mom there as his sherpa helping him function in the world. She provided much scaffolding for his ADLs without even realizing it as well as serving as something of a security object. With her out of the home, the wheels came off the bus fairly quickly. Dad never accepted help from others unless mom was nowhere to be found, so prompting him was mostly unsuccessful. I was new to the strategies used to manage behavior in a PWD at the time and things did not go well.

Once mom was home-- and probably in much better shape than your dad will be-- he was relentless in trying to get her to entertain him, cook, clean, etc. when she was supposed to be the one being waited on. I tried to bring in home aides for light housekeeping and meal prep for a time, but he carried on mightily to the point of aggression. When I had to leave, I got my niece to fly down and work from their home for 10 days. Mom was mostly OK by then, but it was an ugly stretch for my niece, too.

You may not come up against this, but with dad gone, she could drop an entire stage in terms of functioning and behavior. In your shoes I would read:

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

Understanding the Dementia Experience (smashwords.com)

and view some Teepa Snow videos around managing anxiety and care-resistance just in case.

Welcome to Teepa Snow's Positive Approach to Care (PAC) Channel! (youtube.com)

Valve replacement and CABG is a big deal surgery. When my BIL had it done he was off from work (ER doctor) for 12 weeks and he was only 50 at the time. Another thing of which you should be aware is that many people who undergo CABG do have some cognitive issues post-surgically. Often these do issues do resolve on their own in several months, but they might need more supervision if that does happen.

It's great that you have folks in the area who are eager to help. I would flesh out-- ahead of time if you can-- how those people define "help". Is it a visit to check-in and maybe bring groceries or a meal? Or is it someone who is willing to come and watch your mom so you can visit dad or just have a few hours to yourself? And if it is someone who mom would be OK for? If she's used to dad as her primary caregiver, she may not easily adapt to a changing roster of helpers. She may not realize she needs someone with her.

HB