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Caring for unofficial VD/Alz 75F while parenting young child and a baby
Posted: Monday, July 19, 2021 1:20 PM
Joined: 7/19/2021
Posts: 4

Caution: Long read!


Good day to everyone.   I am new to this community, though earlier in my life, as a young adult watching from the sidelines, I saw what Alz did to my grandmother and the burdens it put on my parents and extended family here.  She was at least fortunate to have lived a long life by the time things got real bad.  She passed away mercifully just years shy of 100.  And now it’s me and wife on the front lines this time, but with my MIL, and I am glad to have found this community.

DW and I share a home in Virginia with my MIL.  She is 75 and widowed for many years now. While not officially diagnosed (we are increasingly frustrated by our inability to get her seen by a neurologist, but that’s another story), I can tell you that she will almost always forget that she did something within minutes of said event.  She has some other tell tale signs like rarely knowing what day of the week it is.  Asking if it’s 9am or 9pm even if she can see the sun is out.  All after we’ve placed some pretty big clocks with time, day of the week, etc. around the house.  Still she has enough autonomy to do her own (light) loads of laundry, even if she might forget a load is in the wash.  She can check her own blood pressure, blood sugar, etc.  She’ll often pour herself a 2nd bowl of cereal thinking it was the first.  

MIL is on a cocktail of vitamins, pills, and eyedrops for her glaucoma, high blood pressure, and diabetes.  She is blind in one eye and less than good vision in the good eye, so she just shuffles across the house.

Before her short term memory seemingly vanished overnight (more on that later) she was a huge help in our home, helping with meals, upkeep of the downstairs space, and even taking care of our first child for hours-long stretches so wife and I could step away once in a while.   Fast forward several years and now we worry about her even holding our newborn.   Her taking our baby to her bedroom unmonitored is out of the question.

Over the years we could tell her memory was getting worse.  That was always to be expected.   Once in a blue moon she had stretches of insomnia.  Prescribed sleep medicines caused her to have hallucinations (visits from dead relatives).  But we figured she’s older, people react to medicines differently all the time.   When she doesn’t sleep well, we’d often find notes in the kitchen “Couldn’t sleep.  Went back to bed at 5am” her way of telling us she’s fine and let her sleep in.   The frequency of these notes increased over the months leading to her hospitalization in June.  And then she stopped writing the notes.

Dinner discussions became awfully repetitive over the years.  She likes to talk and gossip, so it’s often “Did you know…” something that we knew because she told us weeks ago and nearly every day since.   And she never picked up on our stern “yes. we know.”   Or the flip side: she’ll ask us something, we’ll answer, and she’ll ask it again the next day.

She’s been misplacing things more often.  Sometimes we chalked that up to her vision like looking for a mug literally in front of her.  Then she started doing  things like placing kitchen items in the wrong spaces.  Doesn’t seem like a big deal but this is from the same meticulous woman that basically reorganized our kitchen storage in years past.    Now sometimes we pull a pot out of the cupboard only to find it had water inside.   The worst event was this winter when I came home to a kitchen reeking of natural gas with my then-pregnant wife unaware in the room above.

When our baby arrived just months ago, our older child stayed with other family in the area and we left MIL home alone.   When we returned home, MIL was upset that we had disappeared on her, not remembering that we told her (on many occasions) that DW was being induced, not understanding why we didn’t answer her call during the birth process, not remembering the call my DW returned the next morning.  Up to this point, her memory seemed relatively normal.

Then in June of this year, my MIL self-checked her BP to find it in the low 200’s.   After a second check to make sure she was doing it right,  DW took her to the ER where they found her sodium had fallen into the 120’s.  135 is the lower bound of normal levels. That night in the ER exam room, she asked DW why they had gone to the ER.   So she spent a week at the hospital while they stabilized her BP and brought her sodium up.     Throughout the week, she called DW’s phone throughout the day and night.   “I haven’t had breakfast.”  “Nobody’s given my medicines.”  “What medicines do I take now?”  “Can you bring lunch?”  “Why am I here?”

She had to have a safety nurse sit in the room with her to keep her in bed and escort her to the restroom.   Because her walk is more of a shuffle -- which I think started when her vision in her “good” eye got worse -- the hospital recommended putting her in a live-in physical rehab facility next to the hospital.  Again there were the phone calls from MIL to DW.  Iate-ness with my DW and the rehab staff who in her mind weren’t giving her medicines or feeding her.    She checked herself out (she can still “shuffle” wherever she needs to go which isn’t far in this house) and DW picked her up 2 days into what would have been weeks of physical therapy.

When she came home, DW took over giving MIL her medicines, vitamins, and eyedrops.  Simply because she can’t be trusted to self medicate in her state.  In her normal state of mind, MIL understands when we explain this.  However, because of her short term memory problem, we also  get the “did I take my morning meds?” (yes at 9am)  “are you sure? I don’t remember!”   “What did you eat?  I need to eat.”  (when she ate minutes earlier. Usually cereal).  We spend our time on separate floors -- MIL’s room is downstairs, while ours are upstairs.   So instead of yelling across the house, MIL has been in the habit of dialing DW’s cellphone.   This is a practice she’s had for years.  Often calling DW at work to ask things like “what are we doing for dinner” “something is wrong with the TV” and many other things that could wait til she got home.  So now DW gets phone calls at all hours of the day for the same basic issues.  Her meals and meds.   This applies to the night as well, but  even worse.  If she feels the slightest bit off -- blurry vision (it’s always blurry), headache, high BP (she can still check her own BP) -- and if she can’t get my DW on the phone, she would come up the stairs (already a bad idea given side effects of her sleep/neuro meds) and have the same conversation of “where are my pills” (DW has them) “why” (so you don’t take them, forget, and accidentally overdose yourself) “just give them to me” (why) “so i can have them.  You can’t do this to me.  Those are my medicines You’re not a doctor.  Why aren’t you giving medicines to me”  (I do, every night)  “No you didn’t.  My BP is high.  I need to take it” (You already did) “I can take it again…”   Eventually DW gets it in MIL’s head that she needs to sleep.   And lately started escorting her to her bed, making sure she gets in it,  cuts the lights, and makes sure she’s asleep.  

Her diet has also been particularly poor since coming home from that ER visit.  In hindsight, it wasn't great before it either. Perhaps contributing to that sodium drop. These days we have to remind or encourage her to eat.  She’s pickier than ever.  Usually complaining about something being “too salty” and that she has to watch her sodium.  Reminds us every chance she gets that she’s worried about getting a stroke if her BP gets too high.  (Or going blind if she doesn’t get that eyedrop she doesn’t remember taking an hour ago.)  We’ve noticed that she cooks for herself less and less.  And what she does cook has been increasingly basic.   Going from chicken salad sandwiches, to egg salad sandwiches, to canned soups or instant noodles.   Lately it’s been bowls upon bowls of Special K.   These days we do all the cooking -- and buying.  The wealth of to-go food and availability of grocery-pick-up couldn't have come at a better time. Though our wallets surely feel the pain.

In a month DW’s maternity ends and she’s back to WFH 40 hrs a week,  and likely working from the office 45 min away by year’s end.  DW’s latest tactic to reclaim some of her own sanity and sleep has been to put her phone on silent, barricade the stairs with a tall shoe rack and a heavy plastic tank of emergency water in front to keep that in place.  I’m already taking big drops in productivity at work (WFH for now, but probably working from the office again sooner or later) taking time to watch the baby while DW and MIL go to urgent care, ER, PCP.  They’ve toured one place which MIL already bristled at because of cost.  Even if the place still smelled brand new, was lovely inside and out, and seemed to have many good reviews.  They didn’t have availability for weeks/months anyway.  They’re going to tour another place soon, this time a religious non-profit that we hope appeals to her more.  It’s also in a part of town where MIL lived and raised DW so maybe a return to a familiar area (we now live across town) would also appeal.  At least she is somewhat receptive to leaving the house now.   In months past she had that tell-tale anger at the notion of her being senile.  Though even now she insists hiring in-home help would be enough (and cheaper).  But in our mind, that won’t stop the drama around her “missing” medicine, won’t solve her diet issues, and will likely cost just as much to have someone all-day like we think she really needs.   

Having heard the stories from my DW, my MIL’s sister offered to take her in, herself a career nurse working in psych wards.  Wouldn’t have been indefinite.  She still has a day job, but she wanted to see her sister for herself, and afford us a much needed break.  But given what DW’s told her over the weeks, even MIL’s sister thinks MIL would not be safe at her home overnight.  She agrees she would be better cared for by a dedicated facility.

While we have little experience in dealing w/ Alz.  We only “know” what we read online at places like this and the slices of life I witnessed around my grandmother.  We know even less about the legal and financial aspects of all this: getting POA, hiring a CELA, Medicare/caid, securing her money from fraudsters, putting money in trusts, etc.  Fortunately she is relatively wary of cold callers (unlike some of my own extended family) but who knows how long that will last.    Having myself done her taxes for her this year (thanks COVID) we also have a rough idea of MIL’s assets and retirement income, but we don’t know how long we need to make it last.  As I said at the beginning, we don’t even know if it’s truly Alz/VD/MD until we can see a neurologist, but PCP is taking forever to make that referral (which they already said they would do) and we can’t seem to see one without that.  The memory medicines she has been taking since late June have not been helping, though her poor sleep and diet may be hindering the effectiveness.  Still, we are trying to place her somewhere she can get the care she needs while giving us the ability to breathe and sleep again.  DW is under incredible stress between watching her last living parent decline, administering MIL meds, dealing with all the phone calls from downstairs, handling all MIL’s appts/referrals, looking for a ALF/NH/MC, and caring for the newborn.   All while the clock ticks toward her return to the workforce.  I do what I can to lighten her load.  Whether it’s intercepting the MIL before she makes it to DW’s bedroom to ask yet another “did I take my pills” type question, or watching the kids while DW takes MIL to another scheduled (or unscheduled) appt.   Ironically when MIL is watching the newborn (with us hovering nearby) it blissfully solves two of our largest caregiving problems for that moment.  Then we’ll come back to earth when the baby is crying and she’ll ask “maybe she’s hungry? Where’s the bottle”  even though MIL was just feeding her minutes ago and the empty bottle is on the table next to her.  There’s times like lunch when MIL is often the clearest of mind, and we have reasonably normal discussions.  “What did we order for lunch?  What kind of sandwich is this?  Wow look at these steak fries.”   Times like this we sometimes doubt the need for her to live elsewhere and miss out on watching her grandkids grow up.  But then we just have to think about those awful nights and other bad times, that we remember that this is for the best.  We really hoped for that first ALF/MC location to pan out as it’s near the hospital and just minutes from our current home.  Perhaps it still could be.  As frustratingly slow this process and the feeling of helplessness as we are left to deal with this ourselves, we tell ourselves it will all work out in the end.

Sorry about the preceding “wall of text.”  As someone once said, “If I had more time, I would have written a shorter letter.”  We are still poring through posts here looking at situations we can relate to at this phase while also getting peeks at what may be to come.  I guess what we’re hoping to receive from sharing all this is a better understanding of our next steps towards finding her care, securing her finances, insulating my impressionable child from the drama (“baby’s crying again. why is mommy yelling? is mommy mad at grandma?”), giving DW and I time and space to breathe and raise our kids, all without quickly burning through MIL’s hard earned retirement -- or our own for that matter.   It’s already a shame my FIL couldn’t enjoy his retirement years due to cancer.  My MIL took an early retirement to care for him.  And it saddens all of us that we may be looking at MIL on the first stages of another difficult journey of her own.

Thank you for reading!

Posted: Monday, July 19, 2021 1:59 PM
Joined: 5/16/2017
Posts: 798

Your MIL’s condition is what it is on her worst day, not her best.    You will not get her to ‘agree’ to a facility.   Choose someplace that seems the best fit + arrange placement.  A proper MC will have activities to keep her busy + safe + fed.

If she has been prescribed a ‘memory’ rx, IMO you have enough of a diagnosis.  See a CELA to get a grip on the legalities.  

You will probably have to use subterfuge to move her to a facility so have your stories straight to give her an explanation about why she is moving.  You may also have to disable the phone so she is no longer continually phoning.     Contacting her on your own schedule will be necessary.  The facility will contact you if there are legitimate concerns.   It sounds as if you all need some relief from 24/7 caretaking to be able to concentrate on your new baby and other life demands.

Posted: Monday, July 19, 2021 2:08 PM
Joined: 8/22/2020
Posts: 1495

Welcome Gary, glad you found the forum.  And sorry for your dilemma.  I agree you probably need to place your MIL:  not fair to your children, and it's only going to progress.  However:  you can't do anything until you have power of attorney, I worry she may be too far gone and may resist, in which case you may have to pursue guardianship.  Some use therapeutic fiblets:  say you are doing yours because of the new baby, why don't we get yours done too, etc.  I would contact a certified elder law attorney (CELA) as soon as possible.  Getting a diagnosis may help in this regard, but it may not.  

Another thing you'll learn quickly here:  just make the decisions and take action, don't discuss with her and don't try to reason--her reasoner is broken.  Ditto with discussing doctor visits and dementia diagnosis.  Many have anosognosia, the inability to recognize the deficits, and will insist they are fine.  Don't tell her why she's seeing a neurologist,  or even that it's a neurologist, just say it's a visit required by Medicare.  

Good luck, there are many experienced caregivers here to learn from.  

Posted: Monday, July 19, 2021 2:57 PM
Joined: 6/12/2016
Posts: 1795

Hello and welcome! The behavior you mentioned is common for PWD. As hard as placing your MIL will be, please remember your babies deserve parents who are well rested. Good luck to you.
Iris L.
Posted: Monday, July 19, 2021 4:48 PM
Joined: 12/15/2011
Posts: 17393

Gary757 wrote:

She’s been misplacing things more often.  Sometimes we chalked that up to her vision like looking for a mug literally in front of her.  

Welcome, Gary.  This is visual agnosia, the inability to recognize objects.  Her agnosia is made worse by her glaucoma.  She will need extra attention due to major vision loss.  Safety is a priority.  Please read about the seven A's of Alzheimer's and about dementia-proofing the home for safety. 

Iris L.

Emily 123
Posted: Monday, July 19, 2021 7:10 PM
Joined: 11/5/2020
Posts: 99

Hi Gary,

Have you read this?  It will help explain the behaviors.  It helped me.

We live in the same area code. At 91 our family wasn't passionate about having a CT or MRI confirmed a diagnosis, so my mom is ''likely AD''.  Because my mom was at risk for depression after a significant life change we were referred to a neuropsychologist at Sentara and she was lovely (Dr. Gow).  I would follow up with your MIL's physician now, telling them what you've shared here about her behaviors and inability to manage her finances and diet, and that placement is imminent. As you look at places, find out what vaccinations and labwork may need to be done--my mom had to have a tb test.  We used a Patient First for that as I didn't want to drag her back to the doctor's office for the read, and we had her pre-entry covid test done at a CVS. If you find a place sooner, you can still keep her neurology appointment once you get her settled.  Share what you've noticed with the neurologist prior to your visit--slip a note to the receptionist, or use the healthcare portal. When you select a facility, they will send their nursing director to meet with your MIL and assess what her needs are--again, what you wrote here would be helpful to them.  Their assessment of how much help she needs will also determine what you pay.  My mom knows her memory is worse, but we don't discuss it.  

The local hospital systems all have patient portals--sign your mom up with whatever system she uses.  They will have copies of advance directives paperwork on their websites.  You can go to the state website and look at AL/MC state inspection reports as well.  Even between assisted living facilities you will see that they are licensed for different levels of care, so find out where their cutoff is for their AL/MC population in terms of what would make them decide a person needs to be in a skilled nursing facility instead of AL/MC.  An ideal place may be one where the resident can live as private pay and if funds run out the facility will accept their mediacid.

  I would get her on a waiting list if you find something nice.  Do let go of feeling like MIL needs to go look at facilities--my mom couldn't remember visiting the one I took her to.  In fact, it might be a GREAT job for your psych nurse sister in-law--she gets to be involved and your wife gets that off her plate.  My mom is in a dementia focused AL/MC on the AL side (near the courthouse). I selected it because it had a closely monitored entry and Mom was adamant that she have a separated living/sleeping area.  If I have a complaint it's that my mom took great care of herself and now she's one of the spryest folks there--I worry about her being bored, but what she imagines she ought to be doing and what she can do are two very different things, and when she's offered the chance to do more things she actually will come up with reasons not to--again, part of the disease, because she can't navigate the steps to do what once came so easily. You see this in your MIL eating cereal all the time.  If you want to keep your MIL involved with the grandkids it might help if a place is closer to your home--moving her to an old neighborhood probably isn't a big plus, but the ability to run over to where she is quickly, given that you're both working, will be.

Posted: Tuesday, July 20, 2021 10:05 AM
Joined: 10/29/2020
Posts: 167

Hi Gary!  There are great virtual support groups that are free through the ALZ association.  There is a great one in NOVA that is for the "Sandwich Generation."  Those of us caring for a LO and who have children to care for too.  You can find them under the local resources tab at the top.  Or send me a message in my inbox.


Posted: Tuesday, July 20, 2021 12:57 PM
Joined: 6/24/2019
Posts: 150

Hi from a fellow Virginian!  I'm happy you found us, but sad that you have to be here.

Your situation sounds similar to ours - except that we don't have small children in the house (yet)...our youngest is living with us and is expecting her child (our first grandchild) in the fall.

Due to the above situation we have recently relocated my MIL to live with DH's oldest sibling in another state. They will take care of MIL for the next year or so to give us time to get situated. 

Please be aware that the senses are affected by dementia - all of them. We have noticed MIL not recognizing something that's right in front of her, not hearing what we've said when we are beside her, not recognizing that her hands have peanut butter, butter, or cooking oil on them, over seasoning her food, and not appearing to notice strong smells such as feces. 

Though MIL doesn't have a formal diagnosis, she has had 2 siblings pass from Alz/dementia, and our research leads us to believe that she is Stage 5.

Posted: Tuesday, July 27, 2021 6:31 PM
Joined: 7/19/2021
Posts: 4

Thank you all for the warm welcome and the thoughtful replies!  Lots of great information in this thread alone.   I apologize for the late reply.  It’s been a busy week since that post.   DW’s aunt (MIL’s sister) came to town to see things for herself.   She only stayed one night, but MIL’s behavior that night (almost exactly as I described in my first post) was all she needed to give us her blessing to place her sister in a home.  Before she headed home (out of state)  aunt and DW visited w/ a CELA for the initial legal consult.  This culminated in DW and MIL signing off on Medical POA, DPOA, and LW this morning.

Other than the day and half respite afforded to us by our out-of-town visitors, home life has not improved. Since my last post, I think there might have been one other night that we got to sleep mostly uninterrupted (save for our 2 month old’s needs).    To noone’s surprise, the night before the important CELA appointment, MIL was coming out of her room literally every hour from about 9pm to sunrise to check her BP, to ask us to check her BP, to demand her BP pills, to complain about headaches/diziness, to demand headache medicines, to accuse us of everything under the sun, etc.   I’m shocked she was actually compliant this morning and DW had no trouble taking her to the CELA to sign the paperwork.

On the medical front, today we finally received our first call from a neurologist (that referral took forever!) and booked our appointment for… early September.   There’s a chest CT scheduled tomorrow to check for.. I’m not sure what.  Maybe some sodium/diabetes connection? MIL will also have her follow-up with the PCP one month after being prescribed her Donepezil. Her diet is still maybe a (small) plate of “real” food (usually only dinner -- unless we order out for lunch), mixed with multiple trips to the pantry for cereal, mini muffins, or snack bars.  Often a glass of milk at night -- at least she takes our stern “please. go. to. sleep.” at night to heart… sometimes.

And as far as the nursing home hunt goes, we are sticking to our first pick.  DW toured it a 2nd time w/ her aunt, and her aunt really pushed for this over our second choice.  Partly because of distance, and the brighter/newer/more home-like environment.  But more importantly (to her) because residents are grouped by ability, and she was worried that MIL would get “dragged down” if she were to be with others with more advanced cases.   I may be oversimplifying, but I think that was the gist.  Depending on room size (all private) and level of care (1 thru 5, and a 6th level for “memory care” which price-wise is between 4 and 5) monthly costs range from high $4K’s to high $8K’s.   Our second choice was a flat mid-$7K’s regardless of level.  However, our first choice doesn’t have availability right now.  Instead, we are looking at placing her in their sister location an hour away.  Yes it’s far, but it’s fully furnished (unlike the nearby location) and has multiple openings, so she could move in relatively quickly, and by placing MIL there, she gets first dibs on availability at the nearby location, and we get our sleep/sanity back sooner rather than later.  Assuming she can’t check herself out like she has from the physical rehab last month.  Next step, as I understand it, is to get MIL’s assessment done w/ the home to officially figure out what level-of-care she will be getting.  Then work out how to pay for it.  With DPOA in place, DW has reached out to MIL’s long time financial planner on what to do w/ her various assets.

I think we (really DW) cleared some big hurdles, so thank you all for the advice and giving us the impetus to get things done.  

That said, we have some new questions:

Fiblets seem to be recommend when dealing w/ PWD, but I’m not sure how to employ them to our advantage.    When she’s having her sundown-syndrome, and she’s fretting over her BP readings or asking us to help check her blood sugar or demanding her medicines, we still try to appeal to logic and show her her BP history (written on paper near her BP reader) or we show her the signage around the house where DW has logged her various medicines.   And yes, she’ll think she’s in the right and nothing is wrong w/ her (anosognosia!) and clearly DW has been forgetting to administer her meds for *days*.    So how do  you fib your way out of this and defuse the situation before it escalates?

Our biggest concern and a big source of our misery as of late is that MIL still has the wherewithal to come up the stairs and force the issue about us neglecting to give her medicines (or in the case of her BP worries, apparently not often enough).  We’ve tried some mild barricades -- a heavy (collapsed) dog gate that we place on the first step as a wall, that she manages to slide right over.  Same with a shoe rack.  Also tried heavy jugs of water to hinder her ability to move things over to no avail.    We have considered zip tying items together.  My fear is that this escalation will just end in an even stronger panic -- and her making good on those threats to “call the police” when she thinks we’re holding on her meds.   Or at the least, she’ll injure herself trying to bypass the gate in her fervor.   If there’s anything funny about this, it’s that our home has TWO sets of stairs.  Only one of which she seems to realize is a viable path at night.  So if we do get serious about walling off the one set she frequents, we’d have to double our efforts to barricade the other gate.    And is it worth it?  Maybe I’m too optimistic, but with any luck MIL may be out of our hair in a timespan of days.

To add to the above, when MIL does come upstairs, we’ve tried locking our doors in the hopes she’ll just give up and go back to sleep -- or at least leave us alone.  But in recent nights she just knocks and knocks and even bangs on the door.  DW had to resort to sleeping in the walk-in closet (and plenty of white noise) to get a good two hours of shut-eye.   Are we going about this the right way?

Posted: Tuesday, July 27, 2021 6:45 PM
Joined: 6/14/2021
Posts: 178

Hi Gary,

Since the big issues seem to be at night, how about asking her doc for some type of sleep assist meds?  That way maybe all can get a good night's sleep.

Putting up barriers on stairs probably not the best since she insists on finding a way up, but it also could become an issue in an emergency situation.

Hope that the temp facility works out soonest for all concerned.

Enjoy that new baby!


Posted: Tuesday, July 27, 2021 8:57 PM
Joined: 7/19/2021
Posts: 4

Hi iloveskittles,

Thank you for the suggestion and we did bring this up to PCP. Before bedtime, MIL is taking prescription trazodone and OTC melatonin.  She fights us on the melatonin asking "what will it do to my blood pressure? I don't want a stroke".   Sometimes we win. Sometimes not. Doesn't seem to matter either way. 

The baby gates we put at the base of the stairs are as much for her safety as they are for our sanity and peace of mind.  We zip tied them to the railings. But on further reflection she may have poor memory but she can be crafty when the need arises.   And I see the risk if she is hurt or worse and we're so obsessed with reclaiming our sleep and isolating behind closed locked doors and white noise machines that we would never  know. But she can injure herself just traversing the stairs unimpeded as well.  So how can everyone coexist in the meantime?  I want to be able to safely operate my car to take my toddler to daycare. And DW wants to not be in a daze from lack of sleep when caring for baby. 

Whether she has a nightmare of a night or a rather normal one, we are just stressed by the roulette wheel that we get to play each night.  We will bring up the sleep issues again at the next PCP visit in a few days. 

On a happier note we are absolutely enjoying our baby -- even the projectile spit up, exploded diapers, and sneezes on our faces. As we know more than likely we won't have an experience like this again. And we are ever reminded of the frailty of our own memories.

Posted: Tuesday, July 27, 2021 9:16 PM
Joined: 8/22/2020
Posts: 1495

You've gotten a lot done in a short period of time! The nights dont sound safe for anyone. Id go with the soonest placement you can for everyone's sake, a lot of times it seems better not to visit frequently in the early weeks anyway.

Re: cost and level, she sounds like she may well need MC. Better to expect that and be pleasantly surprised if they say different than the other way round. Glad to hear the update. And yes, those baby days fly by.

Posted: Wednesday, July 28, 2021 12:01 AM
Joined: 10/6/2017
Posts: 186

Gary, re the not sleeping, I am going to suggest a few things that you could try, may or may not work.

Medications- how long before bed are you trying to give them? Generally you need to try to give them to her about two hours before bed. With some people earlier works better, some a little later, but they need time to work before she tries to go to sleep. Ask the pharmacist if you can crush the melatonin and put it in food if you need to.

If that does not help, talk to her doctor. It might be that trazadone just does not work with her, and it is even possible that it could make things worse. The doctor can prescribe a different medication. Melatonin, while it will generally help people go to sleep more easily, will not usually keep them asleep for long periods, so the two meds have to work together.

The medications will be more effective if her anxiety level can be reduced and her frustration level lowered.  Give her a bedtime routine, where you do something she enjoys right before bed. Try what I call verbal judo, don't give her anything to push against. She says- you did not give me my medicine! You say- I didn't? Oh my goodness, I am so sorry, I don't remember! I don't know where my head is at these days, let me go check the record. (If she is not capable of recognizing her meds give her a tic tac, if she is say, oh thank goodness I did give it to you, it was when we were watching/doing whatever, no wonder I did not remember. She needs frustration energy for that loop to keep going, try not to give it to her. I would also take the things off the steps. 

If all else fails you could try to hire someone to work a night shift of a few nights.

Hope something works.

Posted: Wednesday, July 28, 2021 1:55 AM
Joined: 6/14/2021
Posts: 178

Hi again Gary,

You mention that she has been on donepezil for about a month.  In looking this up, one of the side effects can be difficulty sleeping as well as loss of appetite.

Perhaps there may be something else the doc can order which does not have those potential side effects, or maybe it could be given at a different time of the day.

Posted: Wednesday, July 28, 2021 7:47 AM
Joined: 2/29/2020
Posts: 781

As towhee suggested, use some of MIL's money to hire an overnight caregiver until she is placed. Sounds like you have a good set-up, MIL can stay downstairs with the caregiver and your family can have peace and quite upstairs. Call the PCP office or you local senior center/council on aging for a list of agencies that do private duty. Look for one that is bonded and insured. Or, just google it for your area. One of them should be able to accommodate you pretty quickly. It will be money well spent.
Posted: Wednesday, July 28, 2021 11:19 AM
Joined: 7/19/2021
Posts: 4

loveskitties wrote:

Hi again Gary,

You mention that she has been on donepezil for about a month.  In looking this up, one of the side effects can be difficulty sleeping as well as loss of appetite.

Perhaps there may be something else the doc can order which does not have those potential side effects, or maybe it could be given at a different time of the day.


First, I must have been that exhausted last night to read your username as "ILoveSkittles"

And yes, we had started with donepezil in the evening/bedtime as recommended usage, but DW  must have noticed the side effects as well, since she moved the dose to the mornings as you suggested.

Posted: Wednesday, July 28, 2021 12:09 PM
Joined: 4/17/2019
Posts: 14

Hi Gary, 

Good for you for acting so quickly (especially with a newborn)!!  If she is obsessed with taking her medication, can you sub something else?  Depending on how perceptive she is, perhaps you can give her tictacs or a water soluble vitamin (b-12), etc whenever she demands to take her blood pressure medicine for the 2nd, 3rd, 4th time. It took me a long time to figure out, but trying to reason with a PWD or tell them they already did something that they can't remember just stresses them out.  Perhaps tell her that melatonin at bedtime is for her blood pressure. 

Good luck!