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Sing more, cry less
Space within
Posted: Friday, October 4, 2019 11:33 PM
Joined: 10/7/2018
Posts: 72

  has been a tough week. Mom s been in MC facility since June. She is so combative and resistant to use the toilet and/or to take off soiled depends. ... and it has a snowball effect toward a very foul mood when she's wearing soiled depends.  It is seriously ridiculous trying to change her into clean depends. It's tiring . I feel defeated and that I'm neglecting her when I visit and realize she has wet depends and am unable to let her have me change her.   Even the aides have a very hard time and it seems to often turn to her yelling, swearing, fighting them the whole way through.  It's such a terrible disease.    The doctor is recommending seroqoul to calm her down? I am missing the connection between her being argumentative over changing out of soiled depends  and anxiousness.  I am uncertain seroqoul is the answer. She still has good days and happy moods...why would they be recommending to sedate her?          I know everyone is trying to do what will help her through. 

She's been crying's hard to know why she's crying. I try my best to just be there as support.  Being sad and missing the good ol days is normal...but yes we strive for balance....happy and sad.     Feel helpless more and more as her disease continues to get worse. 

I'm so grateful she connects to music. And grateful for the internet... most visits are spent listening to music or watching old music concert videos together.  She still remembers words to songs and sings alone.        

Posted: Saturday, October 5, 2019 1:53 PM
Joined: 9/8/2017
Posts: 2329

I hope a way is found to calm her during changing.  When I had a bit of trouble with grooming and bathing dad, it was like I was the one who needed something for anxiety....

Anyway, my father's psychiatrist prescribed both Seroquel and Ativan throughout the day.  She told me to give him one of the  0.5 mg of Ativan 1/2 hr prior to grooming.  It kinda helped.  And, I stopped telling him he was going to take a bath.  I would just hold his hands and say, "let's go over here..." and let him talk about whatever he wanted to talk about while I helped to undress him and direct him into the shower.  I would make sure everything was quiet and calm. The caregiver talks too much, so I also made sure she was quiet when I had to groom him.  And I would groom him on my own.  I didn't want him to get agitated having too many people around him.

Diaper changes were a challenge too.  When the caregiver had trouble, I told her to stop telling him, "let's change your diaper...."  For me, it worked better not telling him anything about diapers or poo poo and follow him around while trying to change him.  And talk about other things that had nothing to do with diapers. 

We would get shoved or whatever, but we just did it.  Since we had trouble cleaning him up well, I would have him shower daily.  The hand held is best.

But, I think at this period, my father was more confused or forgetful than your mother.

Is your mom sleeping well?

Space within
Posted: Saturday, October 5, 2019 2:34 PM
Joined: 10/7/2018
Posts: 72

Thank you Ruth for your response and experience on how you have dealt with the situation.  

both myself and the caregivers try to sometimes just walk her into the bathroom, sometimes its works , other times not so much. 

She asks questions very much. And when a person replies she either responds with another question of why? or for what?  or starts get worked up about how she knows what happens in there and she doesn't want to go in there. (the bathroom).  Sometimes she will be in moods and ask questions and whether your response is agreeing with her or not, her response then has a tone of disgust or anger. 

They started giving her melotonin a few weeks ago before bed. That seems to work. But since she has been there(june 2019) her sleep schedule is hit or miss. She will have a couple good nights of sleep, then a few days where she gets up in the middle of the night and wander around or just be up.  This may be because she has wet the depends or possibly they wake her up to change her wet depends...I don't know?

When she was at home, she was always a night owl. We would wait until 10 or 10:30 before we started making our way to bed. This was always due to having her use the bathroom one last time hoping for better chances she would make it through the night without an accident.

I am uncertain of the bathroom schedule that is taking place at the Care facility. They did say they go around every 3 to 4 hours to check to see if they are wet and use the bathroom. But I feel that is a loose estimate and only on the perfectly run days.

Thank you again for your response. Will see how the Seroquel ends up working out I guess.

Posted: Monday, October 21, 2019 6:44 PM
Joined: 6/12/2016
Posts: 1512

Hi Space within, 

How is your Mom doing now? I hope the Serequill is helping her and she’s getting more comfortable at her new place. It’s been about three months now I think. Maybe she’s still trying to adjust to her surroundings. I always have to remind myself that everyone’s different and my Mom is on HER OWN schedule/journey!!!! I hope she is doing better. Please let us know. Also hope you are doing well too.

Space within
Posted: Sunday, October 27, 2019 9:26 PM
Joined: 10/7/2018
Posts: 72

Thank you abc123 for asking.  My mom is now a bit less anxious. My dad did end up having the doc put her on serquel .  My dad also purchased a security or sensory  (weighted) blanket for her which seems to be helpful as well. 

She still goes in phases of being guided into the bathroom to be changed. She was actually doing very well for awhile... I would just hold her hands and keep the talking minimal.  I think it just is going to come in phases though.

I was there tonight. Got there around 4:30. Tried to walk her into the bathroom because I knew she needed to be changed. She was not having it, just by her tone and questioning I let it go...thinking I'll give it a few minutes and try again.  Tried again, she got mad and walked out.. I followed her and walked with her to nurses'/caregivers station. They were all in there... my mom started talking with them. My mom spotted a cupcake. One of the caregivers then helped my mom eat a cupcake, standing there. Then my mom said something and the caregiver responded "well, that's good because honestly I was worried about how you were going to act when you first walked over here."  I then said to the caregiver, "yes , because she needs to be changed...." or something to that degree...saying that her pants were wet.     The caregiver really gave no response because she was then called to help with another resident.    I ended up walking my mom down to the dining area. My mom was being a bit loud...singing...all the other residents sat quietly.   My mom got up twice from her chair (possibly uncomfortable sitting)... she was guided back to the table.  She actually ate all of her dinner . 

After dinner, once back in her room, I tried to guide her into the bathroom. Again she got very mad, yelling and stormed out.   

I understand I completely failed by not asking the workers to change her. 

This is the first time in a week , I vet been there for dinner. I've been getting there after dinner...because from my experience from 4 to 6pm seem to always be the hours when she can be very challenging to figure out. And her mood can change so quickly.

On Saturday, yesterday, children came in for trick or treat and all the residents handed out candy. I feel she may have had more sugar than usual these past two days . Also my brother was in town ( she always lights up when he visits.   I guess we know her favorite. Ha ha) ...and she seemed to be asking "where did the others go" and " where are the others".  

Basically I am trying to say I think she had a very active, highly stimulated two days...which may have contributed to her fighting going into the bathroom.   

Space within
Posted: Sunday, October 27, 2019 10:43 PM
Joined: 10/7/2018
Posts: 72

I need to work on asking for assistance from workers when I am there .( in cases when I can't get her into the bathroom) I know this is my own issue I need to get over, whether it's control or trust or whatever but sometimes I feel like some of them talk too much and too loud during their assistance and/or seemed rushed.   I have to let this go and do what's best for her health. 

I was sad the other night because they mainly put her in her recliner to sleep at night. I feel she would feel better, overall, if she got to sleep in her bed at least once or twice a week. They always say she sleeps better in her recliner but I still feel that statement has more to do with their work than my mom's sleep .  I feel I gotta let it go, unless I want to go spend the night there one time to find out ! Ha ha. That'd be a bit neurotic