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Wednesday 1/9
romiha
Posted: Wednesday, January 9, 2019 12:25 AM
Joined: 12/21/2014
Posts: 421


It's 12:18 a.m. at my end of the planet so that means it's Wednesday.

This is the 2nd night this week that I have not gotten any sleep.

Mom was up most of the night Sunday night - getting up at 11:30 to pee and then really not going back to sleep until 5:30 a.m.  Taking her to the bathroom in the middle of the night, she is unusually combative - and that gets me worked up then unable to sleep.  I finally went to bed at 5:30 but she woke me up at 6:30 and I waved the white flag.

Tonight, she has been up 3 times to pee already. She hasn't actually fallen asleep yet.  ugh.  I purchased a new laptop so I can stay in her room for nights like this.  I sit right next to her bed and can gently push her back down but this last time I gave up. I have her strapped in her transport chair, brakes on.  She is still able to scoot around!    

I am going to call her doctor tomorrow.  I can't handle being up all night like this - and then taking care of both parents the next day.  My dad right now has pushed the envelope of my patience.  Surely there is something the doctor can prescribe to knock her out?  Seriously.   This getting up numerous times during the night is wearing me thin.  oh, and she is STILL scratching/rubbing herself but only at night. Sharing the same bed is getting old too. I'm seriously considering buying twin beds but then I will have to get some sort of alarm that will alert me when she is trying to get up since I won't be able to "feel" her moving.  ugh.  smh. whaaaa.


dayn2nite2
Posted: Wednesday, January 9, 2019 12:40 AM
Joined: 6/20/2016
Posts: 1692


The sleep cycle issue is normal.  What is not normal is you are 1 person taking care of 2 very demanding individuals.

Not enough of you to cover 24/7.  The answer is not to knock one of the people out for the night using pills.

You need another plan.
romiha
Posted: Wednesday, January 9, 2019 1:12 AM
Joined: 12/21/2014
Posts: 421


thankfully, this doesn't happen all that often.  Maybe once or twice a month, but rarely twice in the same week.

and I do get breaks every day.  I go home every day from 9-11 a.m. and 2-6 p.m.

I agree though - when I started this in March 2018, I was really only taking care of mom.  Dad is just getting more and more forgetful in the last several months, and more and more unable to physically do things on his own (he has balance issues and chronic lower back pain) and this has been testing my patience.  He also treats me like I am 16 years old and unable to be trusted, which gets on my nerves.  I have a housekeeper who comes in once a week and a bath aide who comes in once a week - she also "babysits" mom when I have to take dad to the doctor or dentist.  

 


ruthmendez
Posted: Wednesday, January 9, 2019 4:24 AM
Joined: 9/8/2017
Posts: 1720


my father's psychiatrist prescribed his dosage stronger at night so he'd sleep and I"d sleep. At first I was concerned because I would still get him up to take him to the bathroom, but eventually it was not safe to do that. So eventually changing diapers had to be done,on bed. Recently, we've lowered his dose. He doesn't need the dose as high anymore...
ruthmendez
Posted: Wednesday, January 9, 2019 4:28 AM
Joined: 9/8/2017
Posts: 1720


as,you can see I just finished a diaper check. It's 2:30 and,soon back to snores
MN Chickadee
Posted: Wednesday, January 9, 2019 8:03 AM
Joined: 9/7/2014
Posts: 622


In my humble opinion it would be fine to ask her doctor about a sleep medication. If  this keeps up and you get run down and get sick you're no good to either of them and the consequences could be not what any of you want. Sometimes a sleep aid is exactly what it takes to keep a LO at home. It bought us an extra couple months. Worth a shot to inquire so you are able to get regular sleep and continue your wonderful care.  Trazadone is often mentioned here as effective. My mom is on Remeron for sleep. CBD oil and melatonin often mentioned as well. I'm sure there are others.
romiha
Posted: Wednesday, January 9, 2019 10:52 AM
Joined: 12/21/2014
Posts: 421


MN Chickadee wrote:
In my humble opinion it would be fine to ask her doctor about a sleep medication. If  this keeps up and you get run down and get sick you're no good to either of them and the consequences could be not what any of you want. Sometimes a sleep aid is exactly what it takes to keep a LO at home. It bought us an extra couple months. Worth a shot to inquire so you are able to get regular sleep and continue your wonderful care.  Trazadone is often mentioned here as effective. My mom is on Remeron for sleep. CBD oil and melatonin often mentioned as well. I'm sure there are others.


She does take 10 mg of melatonin.  When she pees, she has a full bladder.  Concern for UTI so I tested and it was negative.  Not 100% reliable, I know, but when she does have a UTI, she actually quits peeing and is uber drowsy - not wide awake.

All night, she kept rubbing her hands together and since she sleeps on her side, facing me, she would end up poking me in the shoulder!  And of course the bed shaking.  I was able to stop that behavior by firmly placing my hand on top of hers but of course as I would doze off, I would relax my hand and then WHAM there she starts up again.  If it's not her hands, she is rubbing her legs, or her butt, or her head.  She does NOT do any of this during the day.  When she's rubbing, I sometimes turn on the light to see wth she is doing and there she is, eyes wide open.  lol. smh. whaaa. 

I did fall asleep at some point because I woke up at 5:45.  She decided to get up at 7:15 - earlier than I would have liked but oh well.  

I have called her doctor's office about this and left a message, so waiting for a call back. 


NC caregiver
Posted: Wednesday, January 9, 2019 1:57 PM
Joined: 2/7/2018
Posts: 707


50 mg Trazadone has worked well for Mom.  Melatonin lost its effectiveness pretty quickly for us.  With Trazadone, Mom does still sometimes get up to go to bathroom but settles back to bed right away.    It took about 3 days before it really worked for Mom .   It definitely is miserable when you don't sleep . Mom seems like she feels a lot better now that she's sleeping better.  Good Luck!


romiha
Posted: Thursday, January 10, 2019 2:55 PM
Joined: 12/21/2014
Posts: 421


Wednesday night mom still was very restless but did finally fall asleep at 9:30.  Then she was up at 4:30 but I made her lie back down.  I got up at 5:30 and she got up then at 7.  8 a.m. is the "ideal" time for me to wake her up.

Doctor's office has called in a prescription for Seroquel.  Reading past messages here, I know it works for some and not for others.  Mom's doctor is a geriatrician specializing in working with Alzheimer's patients.  Doctor is going to have me stop the Risperidone and use Seroquel at bedtime instead.  Risperidone was prescribed several years ago when mom was hallucinating and had profound paranoid delusions - she was admitted to in-patient psych for 2 weeks and the Risperidone made a ginormous difference.  We tried to wean her off but she started becoming "mean" again - so doctor said it was okay to continue.  

Hoping the pharmacy calls to say it's ready to pick up and I will begin the Seroquel tonight.  I have read up on potential side effects and the fact it's not FDA approved for use in Alzheimer's patients.  I have to trust the doctor knows what she is doing (so far, mom has not had any issues with medications prescribed), and her doctor has taken her off of some meds that she feels really aren't needed.  

I'll post here in a few days to update after she starts taking the medication.  Fingers crossed this does the trick and no adverse reactions.   

ruthmendez
Posted: Thursday, January 10, 2019 3:25 PM
Joined: 9/8/2017
Posts: 1720


romiha, my father is on seroquel, up to 150 mg at night. Then 25 mg during day.  I know, it's a lot.  He used to be on 200 mg in total, but the last month I asked the psychiatrist if we should lower it now.  She said, "you tell me, whatever you want..."

So I lowered it to the total 175 mg/day, and the lorazepam from 2 mg to 0.5 mg at night.

I have noticed that since I've reduced it, he's gone a bit back to his negative side.  But it's tolerable.  He started talking about killing or someone going to kill him. Or he'll try to hit us, but it's not that bad.  He is not as smiley as he used to be, or is just less happy.  So I'm not sure how it's negatively affecting him that I've reduced the drugs....

Anyway, the seroquel has helped him to sleep throughout the night. But like I said, the dosage is very high.

Good luck with your mom.  I think you'll see an improvement, hopefully.



ruthmendez
Posted: Thursday, January 10, 2019 4:00 PM
Joined: 9/8/2017
Posts: 1720


ruthmendez wrote:

So I lowered it to the total 175 mg/day, and the lorazepam from 2 mg to 0.5 mg at night.


Clarification.  I reduced the lorazepam starting 5 to 6 months ago before I reduced the seroquel recently. In case anyone was wondering.

romiha
Posted: Thursday, January 10, 2019 5:13 PM
Joined: 12/21/2014
Posts: 421


ruthmendez wrote:

romiha, my father is on seroquel, up to 150 mg at night. Then 25 mg during day.  I know, it's a lot.  He used to be on 200 mg in total, but the last month I asked the psychiatrist if we should lower it now.  She said, "you tell me, whatever you want..."

So I lowered it to the total 175 mg/day, and the lorazepam from 2 mg to 0.5 mg at night.

I have noticed that since I've reduced it, he's gone a bit back to his negative side.  But it's tolerable.  He started talking about killing or someone going to kill him. Or he'll try to hit us, but it's not that bad.  He is not as smiley as he used to be, or is just less happy.  So I'm not sure how it's negatively affecting him that I've reduced the drugs....

Anyway, the seroquel has helped him to sleep throughout the night. But like I said, the dosage is very high.

Good luck with your mom.  I think you'll see an improvement, hopefully.


Thanks for sharing that!  and I got a text from the pharmacy so will swing by there on my way back to parents in about 30 minutes from now.

Thankfully, my mom is mostly pleasant and smiles a lot.  She says thank you all the time.  I'm learning more and more Japanese as the days go by.  Wish I had learned it earlier but hey, at least there's Google Translate these days.  The only times she gets a mean streak - and it's short lived because her memory is so short - is in the middle of the night during toileting. After I'm done cleaning her up, I have her stand and hold onto the grab bar - and after pulling up her underpants and pants, then I hold on to her as she takes the few steps over to her transport chair.  That's when she gets "mean" and won't let me pry her hands off the grab bar.  LOL.

The other night, as I was getting her back in bed, she says, "You're not my boss!" and I'm like, yeah, I really kinda am!  More times than not, she isn't positioned just right, so I have to use the towel under her to pull her down in bed - she will say, "Are you trying to kill me?!"  lol.   
 
 Many times, sitting at the kitchen table at meals, if I make a silly face at her, she starts chuckling.  I am hoping the Seroquel helps her sleep better at night!


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Mimi S.
Posted: Thursday, January 10, 2019 5:50 PM
Joined: 11/29/2011
Posts: 6768


Hi, In my opinion, it's time for plan B. Try calling our help line 1-800-272-3900 and ask to speak to a Care Consultant who is a specially trained dementia social worker.

I don't recall if there are financial assets for Assisted Living. Often a second person in the room will not cost significantly more. You will still be their Advocate but you get to sleep at night! Hopefully their trained caregivers can deal with dad's behavior problems bu Using naomi Feil's Validation Method.
romiha
Posted: Thursday, January 10, 2019 6:58 PM
Joined: 12/21/2014
Posts: 421


Mimi S. wrote:

Hi, In my opinion, it's time for plan B. Try calling our help line 1-800-272-3900 and ask to speak to a Care Consultant who is a specially trained dementia social worker.

I don't recall if there are financial assets for Assisted Living. Often a second person in the room will not cost significantly more. You will still be their Advocate but you get to sleep at night! Hopefully their trained caregivers can deal with dad's behavior problems bu Using naomi Feil's Validation Method.
You mean move both my parents to an Assisted Living facility?  I think my mom is way too far advanced for that.  She really needs a skilled nursing facility if I was not able to provide the care.   
I respectfully disagree with putting such a plan B into place at the present time; however, assuming I cannot see the forest for the trees, would you explain your reasons for suggesting this?  In other words, if I were to call a Care Consultant, what should I be telling them?

BethL
Posted: Thursday, January 10, 2019 7:41 PM
Joined: 3/25/2015
Posts: 480


Your mom is a pretty lady. Was she raised in Japan? Is your dad former military who met her while serving?

You are a very devoted daughter. Not many can handle two ill elderly by themselves. Just don't forget to be good to yourself! You deserve it.


Mimi S.
Posted: Thursday, January 10, 2019 9:14 PM
Joined: 11/29/2011
Posts: 6768


Sorry, I wrote before I realized how advanced your mom is. Obviously an ALF is not the answer.

I'm just concerned about your burnout and wondering what can be done. The roll of the Care Consultant is to listen to your situation and then with her knowledge, brain storm possible solutions that might work.


romiha
Posted: Friday, January 11, 2019 6:39 AM
Joined: 12/21/2014
Posts: 421


Mimi S. wrote:

Sorry, I wrote before I realized how advanced your mom is. Obviously an ALF is not the answer.

I'm just concerned about your burnout and wondering what can be done. The roll of the Care Consultant is to listen to your situation and then with her knowledge, brain storm possible solutions that might work.

Thanks for the concern and suggestion.  I guess I whine here more than anything else and paint a pretty grim picture.  Your comments were undoubtedly based on that, and I thank you for the concern!

I gave mom her dose of seroquel last night - 50 mg - doctor told me if necessary, I can give her 2 pills at bedtime.

When I checked her pillbox to remove the Risperidone from the remaining days, (doc said to discontinue it), I noticed it was NOT in her pill box.  Hmmm.   I am assuming I inadvertantly missed it when I filled her pill box last week.  That might explain things, but she did still have restless nights even when I know I was giving the Risperidone.

With Seroquel last night, mom slept soundly the night through.  No rubbing/scratching.  No getting up half a dozen times.  And yours truly got to sleep as well!  Maybe she had been on the Risperdone for so long it was not as effective?  I will be calling the doctor's office to let them know about this.    

About my dad - he doesn't have AD but is getting more and more forgetful but is aware that he *may* be forgetting so constantly double-checks things - I know why he does this but it's so hard to remember he can't help it for the most part.  Plus he's stubborn, slow, and old-school, too.  With mom, I know I have to repeat commands all the time because of her AD and I'm "okay" with that.  But I need to get to "okay" with my dad, too, and that's been a major internal struggle for me and I'm just not quite there yet.    


dayn2nite2
Posted: Friday, January 11, 2019 10:57 AM
Joined: 6/20/2016
Posts: 1692


TBH, I think you have "boiling frog syndrome" where you are the frog in the pot of water, the water is being made hotter so gradually you won't realize you're unable to get out until too late.

You have 2 pretty much full-care people and you are 1 person.  One of your people has frequent bouts of insomnia, which is normal for dementia.  The other person clearly has dementia but because you aren't ready to accept this, you are minimizing the impact his demands are having on you during non-sleeping hours.

What is your Plan B for if you become ill/injured.  If you have an accident that renders you unable to care for them for a few weeks or more?   If you developed a disease that needed long-term treatment, what is your plan to survive it and see that your parents are cared for while you are being treated (cancer or other intensive illness)?

Everything depends on you currently. 

It's too much for one person even when they are healthy.  You don't believe it, but it is.  What is the plan if you have a heart attack or stroke from this stress and cannot provide care?

Hoping it never happens isn't enough.
romiha
Posted: Friday, January 11, 2019 12:39 PM
Joined: 12/21/2014
Posts: 421


dayn2nite2 wrote:
TBH, I think you have "boiling frog syndrome" where you are the frog in the pot of water, the water is being made hotter so gradually you won't realize you're unable to get out until too late.

You have 2 pretty much full-care people and you are 1 person.  One of your people has frequent bouts of insomnia, which is normal for dementia.  The other person clearly has dementia but because you aren't ready to accept this, you are minimizing the impact his demands are having on you during non-sleeping hours.

What is your Plan B for if you become ill/injured.  If you have an accident that renders you unable to care for them for a few weeks or more?   If you developed a disease that needed long-term treatment, what is your plan to survive it and see that your parents are cared for while you are being treated (cancer or other intensive illness)?

Everything depends on you currently. 

It's too much for one person even when they are healthy.  You don't believe it, but it is.  What is the plan if you have a heart attack or stroke from this stress and cannot provide care?

Hoping it never happens isn't enough.
You are absolutely correct.  I just asked dad what he would do if I was seriously injured in a car crash this afternoon on my way home.  He said he'd call Johnny.  Johnny is MY 28 year old son.  I told dad NO.  Wrong answer!  You call YOUR SON.  I'm going to put together a list of who to call, etc. Print in large letters and tape under the cremation instructions he already has taped up in (a) his room, (b) mom's room and (c) on the fridge.  
Thanks for the eye opener.

romiha
Posted: Friday, January 11, 2019 4:39 PM
Joined: 12/21/2014
Posts: 421


BethL wrote:

Your mom is a pretty lady. Was she raised in Japan? Is your dad former military who met her while serving?

You are a very devoted daughter. Not many can handle two ill elderly by themselves. Just don't forget to be good to yourself! You deserve it.

Hi Beth - yes, mom was born and raised in Japan.  Dad was in the Marines, stationed there, shortly after WWII and the Korean War, so he never served during active war time.  But that's where they met.  Mom has lived in the US longer than she lived in Japan.

I never learned much Japanese while growing up, but as mom's AD progresses, she speaks Japanese more and more.  When I tell her, (in Japanese) "I'm sorry, I don't understand Japanese!  Please speak in English", she'll just chuckle and continue speaking in Japanese.  lol.


JJAz
Posted: Saturday, January 12, 2019 4:59 PM
Joined: 10/21/2016
Posts: 2096


romiha wrote:
Mimi S. wrote:

When I checked her pillbox to remove the Risperidone from the remaining days, (doc said to discontinue it), I noticed it was NOT in her pill box.  Hmmm.   I am assuming I inadvertantly missed it when I filled her pill box last week.  That might explain things, but she did still have restless nights even when I know I was giving the Risperidone.
 

When I was at the height of caregiving for Dad and DH, I too found that I made medication errors on a couple of occasions.  I caught them in a similar manner.  Stress can cause horrible problems. 

I added some self-audits for myself that helped.  When you are done sorting, count the number of pills in each little box.  Make sure that the tally agrees with a predetermined number.  Try to work from a list that you can check off and at a time of day when you have plenty of time and are not stressed.  Finally, I found it really important to keep meds for me, DH and Dad in 3 separate bins/drawers.

Blessings,

Jamie



Victoria2020
Posted: Saturday, January 12, 2019 6:35 PM
Joined: 9/21/2017
Posts: 277


I know you want to do the right and best thing for your parents, but would you place them in a place with one caregiver 24/7/365? One who misses sleep and can't recharge their batteries. Forgets meds because of stress? (What you say to the charge nurse at a home  if you found out your mom's meds had been missing a pill for a week?)

Please call the help line, check out options. This is not healthy for anyone.

You mention you have a son 28. Are you able to share much of his life? Do you think him watching you grind down is going to make him want to do the same for you, if it comes up?

Who  will care as much about them if you can't anymore--you are the precious resource for them - don't forget that. Protect YOU first.

 


Daisylost
Posted: Saturday, January 12, 2019 8:09 PM
Joined: 5/12/2018
Posts: 24


Wow Victoria2020, what great (coughsHarsh) eye opening comments.  I will now consider firing myself.. But because nobody else wants to help me and I cannot afford professional care, I'll just place myself on warning!  

Day2nite and Mimi mentioned another plan or Plan B and this is so important.  I have had plan B in the back of my mind for 2 yrs now and the end of life bookwork so its not so hard when the time comes I'll just have it all ready and organized and oh lets not forget cleaning and cooking and cleaning up again and dr appts and unexpected accidents and constant checking etc etc.. It all takes a toll and sadly, caretakers often become ill or die themselves caring for LO.  It is all MORE common then we wish to believe.  *Sigh

Romiha, the "Your'e not my boss" thing.. oh man, I had to laugh.  THanks for that I needed it today.  Mom says sometimes to me You are NOT my mother but she says it in Spanish and although it's the same thing hearing "Tu NO eres mi madre" sounds like curse words to me ughh.  Seeing your response (hopefully to yourself) of Yeah, I kinda am.. was ? gratifying.  When mom says that to me all I feel is guilt.  Ugly, horrible guilt.  So then im sad and depressed and next you know she's onto something else and forgot it was said.. 

Prayers n hugs to all on forum.

D


NC caregiver
Posted: Saturday, January 12, 2019 10:07 PM
Joined: 2/7/2018
Posts: 707


Glad the Seroquel is helping your Mom to sleep.  She looks happy in the pic you posted .  I think you're doing great & I hope things go well for you & your parents .
romiha
Posted: Sunday, January 13, 2019 6:50 AM
Joined: 12/21/2014
Posts: 421


Victoria2020 wrote:

I know you want to do the right and best thing for your parents, but would you place them in a place with one caregiver 24/7/365? One who misses sleep and can't recharge their batteries. Forgets meds because of stress? (What you say to the charge nurse at a home  if you found out your mom's meds had been missing a pill for a week?)

Please call the help line, check out options. This is not healthy for anyone.

You mention you have a son 28. Are you able to share much of his life? Do you think him watching you grind down is going to make him want to do the same for you, if it comes up?

Who  will care as much about them if you can't anymore--you are the precious resource for them - don't forget that. Protect YOU first.

 

I debated using the Thumperian Principle here or not.  Decided on not.

I am parent's 17/7/365 caregiver.  I do get breaks every day where I go back to my own place.  Last fall, I attended a conference in CA and placed mom in a facility for 5 days where they have staff to provide her care, where caregivers are NOT 24/7/365.  Where caregivers get to go home and sleep.  Yet her care was, in my opinion, substandard.  Even though I may not get a full night's sleep every night, at least I do provide quality care for both my parents.  

It's not an ideal situation - Alzheimer's disease is not an ideal disease.  I do what I do because I can and I do the best I can.  Granted, this may not measure up to someone else's snuff, but it is what it is.

As far as my children - I have a daughter, 38, and a son, 28.  I have already told them if I end up like this, well, this is why God invented Pillows.  Or, alternatively, take me on a road trip to the Rocky Mountains. Let's stop at one of those scenic stops - let me hobble over to see the wonder and majesty of those mountains - and then ooops!  mom got a little too close to the edge and bye bye mom.

I am working on a Plan B - that is, what everyone else needs to know in the event I am incapacitated or worse.  

I appreciate the concern that several have voiced that I apparently can't do this anymore.  Thanks.  It is what it is.  And it is what it isn't.  Maybe I should have invoked the Thumperian Principle after all.  

MPSunshine
Posted: Sunday, January 13, 2019 8:42 AM
Joined: 5/21/2016
Posts: 1884


Dear Romiha, So, I wrote a long passage to you yesterday, and then when I tried to post it, the website ate it up and it disappeared, and at that moment my time also disappeared. So, I’m back another day to try again, this time writing my reply in WORD, then copying it and pasting it in, and hoping that it “sticks” this time. I have changed my avatar, because that last photo of me as a young girl was me, and I look about the same now – same grin -- even though I am much older, and the fear that was placed in me from all the warning posts about how this is all public information and so forth – well, I decided to change it to something more neutral.

 

Romiha, Pardon me if I talk with you like you are my sister. I feel that some of the struggles you are going through qualify you to be as a sister to me. So hereby I adopt you (unofficially) as a sister caregiver.

The photo of your parents is so adorable. Is that your dad in overalls? I could just give them both a big hug. Of course they would be surprised, since they probably don’t understand cyber-friendships, but anyway, thanks for posting that extremely cute photo of them.

 

Your sense of humor just is the most valuable thing that will get you through this. I love the whole invoking of the Thumperian Principle (lol), and your descriptions of your real world as a caregiver. You are just telling it like it is. There are definitely ups and downs. And even though it is so tough to be the on the ground caregiver for one’s parents, it’s the best thing ever, too, and I can state flatly that no nursing home or professional is ever going to care about your parents as much as you do. I have had the same experiences of not only respite care gone wrong, but also rehab gone to H-e-double hockey sticks, and hospital stays where 24/7 monitoring was required. Unfortunately, I also had the experience of lack of sleep, and I know it can turn a normal human being into a Zombie-like creature.

 

So, getting to my real point, about sleep. Here are some of the techniques and medicines I tried with varying degrees of success. I tried to adjust the environment: Blackout curtains on the windows, no fluids to drink after a certain hour of the evening (in order to minimize the need to use the bathroom at night), carefully assessing medication in order to give any that were diuretic during the morning hours rather than at night (my mom took a form of Lasix, and her doc approved giving a double dose to her during the day so that she could pee mightily during the day, but not give a dose at night, so she was less likely to need to pee at night), and giving some sleep aids (my mom’s doc was aware of and approved a small dose of CBD oil which I found was available to order online in pill form (I have to warn you that these are very expensive, but oh, so effective), also there was a homeopathic sleep aid that I ordered from dō-Terra essential oils which also contained lavender, which I would give also (I didn’t observe any negative interactions between the CBD oil and the homeopathic medicine). There was also a form of Ativan, Lorazepam, that was prescribed for her from her doc, but I ended up never using it. I also put a fragrance diffuser and load it with oils that promote sleep – lavender, any oil that is labeled “sleepy.” Anyway, medication-wise, I would do what works – it seems like you hit on something that does work– and then tweak the doses so meet your mom’s need for sleep and your need for sleep.

 

In regards to the passages by posters urging you to re-assess your limits as a human being and admit your mom to skilled nursing and on and on. I learned to let those pieces of (well meaning) advice just roll off my shoulders. After all, it took a Herculean effort, and went against the grain of everything everyone was telling me, just in order to make the decision to care for my parents in their and then my home. I had possibly more support than you, since my husband helped, I had caregivers in the house frequently, and during her last two years of life, my mom was able to get in the car and be driven to a day program where she received the chance to socialize and interact with others, and I was able to work my job that I love. However, the caregiving did take a toll on my health. I gained too much weight, which I am now peeling off gradually, and I do believe the lack of sleep and stress and worry added some gray hairs to my head. Thank goodness for Clairol! Also thanks to the understanding friends on the “Caregivers Who Have Lost Someone” forum.

 

As far as care, though, I want to give you some strong support and kindness for what you are doing. “Patience and Courage!” In Italian, “Pazienza e coraggio!” and in Japanese,  “[This website won’t let me post Japanese symbols!]”or “Nintai to yūki!”

 

--MPSunshine

 


MPSunshine
Posted: Sunday, January 13, 2019 9:26 AM
Joined: 5/21/2016
Posts: 1884


Hi, Romiha, Also, you mentioned the problem of rubbing/scratching at night. I will just share what worked for my mom, and which ended up resolving many lesions she had scratched into her skin. It’s a steroid cream called triamcinolone acetonide ointment. It requires a script from the doctor. It can be applied a couple of times a day. I used to apply it at the beginning of the day and also prior to bedtime. I can tell you that with my mom, we tried everything and this cream gradually helped her to with relief for what felt to her like an itchy feeling on her skin. The behavior of rubbing and scratching is called “body focused repetitive behavior,” (you can google it) and it’s something people do, and has been reported lots by folks caring for their elderly parents. Combined with the dry skin of the elderly and the thoughts probably going around in circles in their minds creates a vicious cycle of itchy skin, worry, rubbing, and self-soothing through this repetitive behavior. Think about it, they can’t knit, crewel, or do any of the other things to keep their hands busy and free them from worry, so they start rubbing, and picking. The other thing we did for skin care was a lotion Cetaphil, and also a fragrance-free, gentle soap made by the same company. I just basically cleared the shelves of all their products – lol – LOVE THEM.  Anyway, just another couple of ideas to possibly help you and your mom get a good night’s sleep. Good luck! And, always remember, patience and courage! -- MPSunshine

 


dolor
Posted: Sunday, January 13, 2019 12:21 PM
Joined: 11/9/2017
Posts: 293


What MP Sunshine said. 

I've noticed there is a heavy placement-oriented theme on this forum. It isn't always the best choice. 

ruthmendez
Posted: Sunday, January 13, 2019 12:35 PM
Joined: 9/8/2017
Posts: 1720


Either choice sucks, in my opinion.
romiha
Posted: Monday, January 14, 2019 9:45 AM
Joined: 12/21/2014
Posts: 421


Quick update.  Mom has been sleeping the night through without issue since starting the Seroquel, 50 mg.  I have only had to give her one pill at bedtime.  No more rubbing, getting up every 15 minutes.  Thank goodness.

MP Sunshine - I am honored to have you adopt me as a sister!  I only have one sibling - a brother - who basically is not even in the picture since he works out of town so much and when he's home he doesn't even come up the stairs to say Hi.  Oh well.  That, too, is it is what it is. 

The scratching/rubbing - I don't really think there is anything "physical" for that, to be honest.  It ONLY happens at night.  Never during the day.  And, it can't be bedbugs because I sleep in the same bed!  The Seroquel seems to be controlling that.

Friday, a winter storm came through, and I was stuck at my parents the entire day Saturday and was finally able to get back to my place yesterday at 1:30.  Dad was totally freaking out over this.  He had contacted someone with the last snow event we had back in November to clear his driveway - I finally ended up shoveling it myself.  But this recent event landed at least 6" of heavy wet snow and I knew I was NOT going to even attempt to shovel the driveway myself.  But, although I talked to two separate snow shovelers personally who could have been there within an hour (at 8:45 a.m. Sunday), dad insisted on having HIS guy do it.  I just gave up then and let him have his way.  grrr.  Guy finally showed up at noon and I was able to leave at 1:30.  And the whole time the guy was working, dad was hobbling around with his walker from the North Kitchen window to the West Kitchen window, to the South Living Room Window to watch the progress.  My seat at the kitchen table was right in the middle so after several passes, I gave up and took mom to the living room where she and I sat until the snow people were done.  Some things he has me doing - like zapping his ice cream for 30 seconds in the microwave, filling up his tea pot with hot water - but other things he just can't seem to "let it go."  I get that but it's still a challenge for me to remain calm! 

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dayn2nite2
Posted: Monday, January 14, 2019 9:59 AM
Joined: 6/20/2016
Posts: 1692


dolor wrote:

What MP Sunshine said. 

I've noticed there is a heavy placement-oriented theme on this forum. It isn't always the best choice. 
If you look at the context in which placement is recommended, you'll note that generally here it's offered when there is ONE caregiver with NO help.

What other solution is there when the one person is overwhelmed with the care of TWO people?

abc123
Posted: Monday, January 14, 2019 11:16 AM
Joined: 6/12/2016
Posts: 275


Thank you for sharing the picture of your Mom!!!  I am thinking that she will continue to speak more and more Japanese as time goes by. I wish you could have learned her language. In my family it’s French. I have only one living relative who speaks the language. I wish I wish I had learned it from my Grandparents. It’s much too late now.

I’m happy that she is sleeping thru the night now! Good for you both!

Is there some type of daytime program that your Dad could attend once or twice a week? Does the military have a senior program in your town? My town has a military museum and several of our senior citizens volunteer there. They basically sit in a little group and talk all day. They offer valuable fellowship to the young people who visit the museum. I just thought it might help you and him if he had something to do to make him feel needed.

They are blessed to have you!


SelEtPoivre
Posted: Monday, January 14, 2019 11:26 AM
Joined: 3/8/2018
Posts: 596


dolor wrote:
I've noticed there is a heavy placement-oriented theme on this forum. It isn't always the best choice. 

IDK, I think it’s pretty balanced, and usually is based on a “when you’ve done all you can/are able/are willing to do” approach. I kept my mom at home, until I couldn’t any more. That decision point varies by individual caregiver and by individual PWD
NC caregiver
Posted: Monday, January 14, 2019 1:43 PM
Joined: 2/7/2018
Posts: 707


So glad to hear the Seroquel is working.  That snow is beautiful but am so glad we didn't get any!    Mom is so affected by the weather.  She asked me today when Spring is going to get here.
 
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