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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.
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.
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.
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, 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!
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.
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.
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.
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.
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.
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.
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.
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.
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
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!”
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
What MP Sunshine said.
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!