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Later Stages and the Bathroom
Posted: Monday, September 2, 2019 1:37 PM
Joined: 8/13/2014
Posts: 18

Ok, I am finally throwing up my hands for some help. My mom was diagnosed with Alzheimer's 6 years ago when my father passed. She has been living with us ever since and my wife is her full-time caregiver (Yes, I know I am beyond blessed to have her). 

Within the last few months my mom has moved into the later stages of Alzheimer's and along with this is a very new behavior of crying whenever my wife or people at the daycare try to take her to the bathroom. It is very hard for me to watch so the only thing I can do is try to help my wife by asking you all for help. 

If you have experienced this, what have you done to help your LO? My mother is in a wheelchair and my wife will ask her to stand up, that starts the screaming and very hard crying. It's beyond upsetting as her daughter to hear her.  My mom was the sweetest, most loving person anyone has ever met and to see her having a mental breakdown when my wife tries to get her onto the toilet is devastating. I cant imagine how devastating it must feel to my mom.....

This happens at the daycare she goes to as well. They repeatedly tell me that it now takes 2 of them to get her into the bathroom and on the toilet. I pray every day they won't kick her from the daycare because of this behavior. 

If you have any advice at all I would love to hear it. TIA.

Posted: Monday, September 2, 2019 1:44 PM
Joined: 6/24/2012
Posts: 519

I don't have this experience.  But has anyone suggested Depends?  That would eliminate the need to use a bathroom/toilet.  She may be afraid of falling into it?  Depth perception and visual changes can make some things quite scary.  I know that the fact that she is continent would be reason enough to avoid the depends for as long as possible, but maybe the terror she feels outweighs that.  Just a thought and I wish you luck.
Posted: Monday, September 2, 2019 1:49 PM
Joined: 8/13/2014
Posts: 18

Thank you! She wears diapers every day now since she won't tell us anymore that she has to go to the bathroom. I was thinking that for the senior center, but what about at home? My wife can barely get her to stand up in order to get her onto the bed or rolling toilet seat.
Posted: Monday, September 2, 2019 1:51 PM
Joined: 10/9/2014
Posts: 1041

It does sound like it's very distressing for your mother, as well as her caregivers. I'll just share what I experienced with my LO.  One thing that I might explore is if she has any pain associated with going to the bathroom.  Does she have a UTI that might cause discomfort or any arthritis that is painful as she is helped to the toilet?  If not, I'd explore if there is something about it that scares her, like is it cold, too crowded, too noisy, etc.  Of course, it may be something that you just can't figure it out.  My LO tended to cry a lot about all kinds of things. She worried about family members, pets, friends, etc.  She was so distraught that she was placed on medication for anxiety and depression.  It helped a lot.  Her crying was greatly reduced.  I hope you can find some answers that help.  Is she ready for Depends?  Could you let her use a bedside toilet, to see if that helps reduce the crying?
Posted: Monday, September 2, 2019 2:21 PM
Joined: 6/20/2016
Posts: 2258

My first thought is also possibly pain of urination (stones?  UTI?) or even constipation (impaction?).

Needs checking out with a doctor.

If physically she's fine, then the distress may be attributable to anxiety at being expected to understand/follow directions.  Everyone needs to make sure they are speaking in gentle tones of voice and not raising voices in frustration.
Posted: Monday, September 2, 2019 4:06 PM
Joined: 3/6/2017
Posts: 2165

With my dad, memory disappeared in reverse. He kind of time traveled. He always knew who my mom, his brother and I were but he was hazy on people who came into his life after 1975. He expected his grandchildren to be preschoolers rather than adults and he constantly asked who the guy I was shacking up with currently was. That would be my husband of 32 years.

I wonder if your mom is uncomfortable with "strangers" going into the bathroom with her and behaving with an intimacy with which she's uncomfortable. What happens if you do the assist? 

That said, dad would never allow any of us to help, but once he went to MC, he identified the staff as nurses in a hospital-like setting and went along with any care they needed to do.
Posted: Monday, September 2, 2019 4:43 PM
Joined: 9/3/2016
Posts: 215

I agree that I would have her checked by her doctor to make sure there's no UTI or something like that going on. If not, it may be time to just stop trying to toilet her altogether and go solely with Depends or diapers. If your mom was diagnosed 6 years ago, she very likely could have reached that stage depending upon how far along she was when she was diagnosed and how quickly she has progressed. Everyone seems to progress at a different speed. It may be that the reason she's not telling you she needs to go is because she doesn't know that she needs to go. Generally by Stage 6 there is double incontinence, or that was my mom's experience. And she may become distressed when someone tries to take her when in her mind she does not need to go. My mom always tried to be very independent, and would become very angry if she thought she was being made to do something against her wishes. So if she thought she was being made to go to the toilet when she thought she didn't need to go, that would have triggered a very angry response in my mom.
Posted: Tuesday, September 3, 2019 12:25 PM
Joined: 8/13/2014
Posts: 18

My mom is on hospice and has had several UTI's so they have decided to keep her on Macrobid permanently. As far as adult diapers, she now wears them daily however we still have to be able to change her.  

@sunnyBeBe we just changed her medication a few weeks ago to Abilify 2x a day and Ativan every 4 hours instead of PRN. We are trying everything we can to help with the crying. It is beyond hard for me to watch and not be able to do anything. My adult mind understands the disease, but my little kid mind is watching my mom deteriorate in front of me and its breaking my heart. 

Posted: Tuesday, September 3, 2019 12:32 PM
Joined: 11/13/2018
Posts: 146

DW with stage 7 and now in MC for past 4 months. Was having some incontinence issues a couple of months prior to MC. At MC they take her to the bathroom on somewhat the same times to try and get ahead of the need.

  I go in to feed her at lunch, and she is taken to the toilet just before lunch is served. That seems to have helped a great deal with her to help keep dry and clean.

Posted: Tuesday, September 3, 2019 12:54 PM
Joined: 9/3/2019
Posts: 1

Have you considered that someone may have been too rough helping her up?
Posted: Tuesday, September 3, 2019 1:35 PM
Joined: 10/9/2014
Posts: 1041

That must be so troubling.  We were fortunate that my LO responded to Cymbalta very soon and it has served her so well.  I can't imagine if the medication didn't help enough. 

I might discuss it with her doctor and then Hospice staff to get their input.  Does she cry when being bathed? Clothes changed?  Do you think she is able to still handle the the transition to a different location each day? At a certain point in her progression, my LO didn't respond well to even going out onto the patio area.  She would get disoriented and alarmed when I would return her to her room. She did better to stay in her comfort area and on her MC wing. 

Posted: Wednesday, September 4, 2019 2:16 PM
Joined: 8/13/2014
Posts: 18

@CindyLou my wife is her caregiver so no....she is definitely not too rough. She lives with us.
Posted: Wednesday, September 4, 2019 2:18 PM
Joined: 8/13/2014
Posts: 18

I will have to talk to them about the Cymbalta. Right now I am not seeing enough progress with the Ativan and Abilify. It is very distressing to not be able to help her, but for instance this morning she was crying and refusing to stand up for my wife. She is 225 lbs (being in a wheelchair and on all of these medications definitely is not helping with weight) and my wife was struggling to help her up by herself. 

I am seriously at a loss and have contacted Hospice to give her a PT eval. 

Posted: Wednesday, September 4, 2019 8:46 PM
Joined: 9/4/2019
Posts: 1

Going through this as well. Our LO is in late stage and is starting to resist standing up from the wheelchair. She gets very agitated when it is time for the bathroom and shower.  Just learned today about Shower Buddy Light, a wheel chair that is waterproof and has a removable commode, so that you can wheel your LO over the toilet and into the shower as well. We are going to try it, because getting her to stand/take steps/undress is physically demanding and psychologically taxing.  Also, I am having luck using a strap/belt around our LO's waist to assist with lifting into bed. Playing soothing classical music may help as well. Best wishes to you! And by the way, I am also the wife and primary caregiver for my husband's mom, so big kudos to your wife for doing the right thing. She obviously loves you and your mom very much. There are huge benefits in caring for everyone involved.
Posted: Thursday, September 5, 2019 12:00 PM
Joined: 8/13/2014
Posts: 18

@simplegifts thank you so much for your response! 

Trust me, I know how lucky I am to have my wife in my life. My mom would definitely have to be in a home without her as I don't have the ability to work and take care of her. 

We always play Perry Como when she is awake - it's the only music she wants to listen to. We do have a gait belt, but my wife said it wasn't enough last night to help her and kept sliding down. We DO have the shower chair you're talking about and it definitely has helped with showering her since she won't stand any longer. 

Is your MIL complaining it hurts when she stands? We have had her checked by every doctor possible and x-rays have shown nothing. When her limbs are manipulated without her standing she doesn't complain of any pain so hospice and her primary have said it's just the disease. It's killing me to listen to her cry every day all day. We called hospice today and asked for an OT/PT eval as well as the dr checking her medications yet again. 

What do you do about accidents? It has been a mess every time she goes. And as of today she is now incontinent with 1 and 2. 

Sending your husband and you major hugs and positive vibes. 

Here is the chair we use btw: