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She is 69 years old with early onset Alzheimer's.

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If you take her hand & lead her into the bathroom without talking, what happens? Does she go with you?

I wonder if there is some anxiety being in the bathroom or her bedroom alone?

Many feel safer with their people in view.
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There seems to be some irrational fear arising from something seen, heard, or imagined. Prolonged avoidance will only increase the anxiety (and your inconvenience).
Can you recall what her previous bathroom/bedroom looked like? Colors, furnishings, familiar items (towels, ornaments, flowers) - even the orientation of the bed, proximity to door, light levels... recreating some of this might allay the associated fears. Then make frequent small visits (brush hair in the mirror, get a tissue, etc) to 'normalise' surroundings before applying intended purpose.
Placing a (safe) rug on bathroom tiles can deaden echoes, and having soft music with low lighting can create a soothing ambience in the bedroom also. Plenty of familiar belongings lying around should also help acclimatise.
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In response to your final question to funkygrandma..
If you can continue to change her and continue to keep up with the declines that will come then you can keep her at home as long as it is safe for her for you to keep her at home and as long as it is safe for you to keep her at home.
You will need help. Caregivers that will give you a break. NO ONE can do this 24/7/365 without a break.
As she declines she may have to use a walker then a wheelchair then she will not be able to aid in her transfer from bed to chair so a Hoyer Lift is the easiest, safest way to transfer someone.
Only you can decide what you can and can not do.
If you have to place her in a facility do not feel "guilty" about it. Or that you have "failed". You will still be a caregiver just a different role. You will be an advocate for her but most important you can be her SISTER. Not "just" her caregiver.
If you have not done so talk to an elder care attorney and see what options there are for her so that funding Memory Care is possible.

You are going to have to find a way around the not going into the bathroom issue. How are you going to bathe or shower her, brush teeth, wash hands? If you can figure out the cause of her not wanting to go into the bathroom that will help you a lot!
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Does she go into the bathroom without a problem for a shower or bath? To brush her teeth?
If she has no problems with going into the bathroom for either of those tasks then it is not "fear".
Part of the decline with dementia is a person no longer recognizes the cues the body gives when you have to urinate, or empty your bowels.
YOU need to accept this as part of the decline and change your expectations.
You can try to get her on a schedule. Every 2 hours get her up and to the bathroom. This way you can check the brief, she changes her position, gets a bit of blood flowing to the legs.
If she truly is afraid to go into the bathroom and she refuses to go in for a shower, brushing her teeth then you need to figure out why.
Is the floor slippery?
Is it dark so she can not see well?
Does she need grab bars to steady herself?
Is the toilet to low? (ADA height toilet is more comfortable to get onto and off of)
Is the bowl to small? (elongated bowls are more comfortable for some)
Some bathrooms echo so the sound is loud, is yours all tile so that sound bounces around?
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fboddiejones Jul 2021
She does not go into the bathroom for anything. Prior to us moving back to south Jersey in January she took care of daily personal needs. We move here and almost immediately she refused to go to the bathroom or sleep in her bedroom. She sleeps in her recliner. I want to make the best decisions for my sister. I am going to buy her a commode and try and see if that works. Thank you again for responding.
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I'm guessing that if your sister is afraid to go into the bathroom, that she is then just peeing and pooping in her Depends. Have you ever considered that it actually has nothing to do with her being "scared" of going into the bathroom, but instead that she is now completely incontinent due to her Alzheimer's disease?
Or you may want to try having a bedside commode close to where she hangs out,(not in the bathroom) and see if she will use it instead. Best wishes.
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fboddiejones Jul 2021
Thank you for answering back. I follow your responses in the forum. Does her incontinence mean that I should be looking to place her in a facility? I would prefer to keep at home.
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