Personal Care
There are places to find joy in caregiving; it's okay if helping your Loved One get dressed or stay clean isn't one of them.
Things to know
In moderate to severe stages, your Loved One may need help eating, getting dressed, cleaning themselves, and going to the bathroom.
Helping support these activities can take a lot of time and emotion.
ISSUE
Different people will experience these losses at different times.
Earlier on, people might need no support; later, they may need reminders; ultimately, negotiation and physical work may be required of caregivers.
TIMING
Maximizing independence can help your Loved One feel in control and minimize your stress. This may be:
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Serving finger foods that allow for independent eating
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Letting them take the lead - they don't need a full shower every day if they don't want it
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Break grooming activities into more manageable steps
You don't have to do everything. You can get help with baths or laundry or consider out-of-home care
A FEW TIPS
How they did it
TESS
Age: Late 20s
Loved One: Mom, Mid-50s
Diagnosis: Early Onset
Years Since Diagnosis: 5
She often wears the same shirt/sweatpants for multiple days at a time and won't shower. She sometimes smells but when I was more forceful about her need to shower or change her clothes she denied the problem or seemed hurt. Socializing, pre-COVID, got her out of the house. Now she doesn't have that prompt, which may be part of the problem.
The other thing that has been really helpful is a smart speaker. She has low blood pressure and the doctor said she has to say hydrated. When I am at work all day, I can’t monitor that. Now the smart speaker reminds her a few times a day “drink a glass of water” and she will listen and drink the water.
SAMARA
Age: Late Teens
Loved One: Mom, Mid-50s
Diagnosis: Early Onset
Years Since Diagnosis: 4 months
I’m the main caregiver and live with her. She has five kids. We have a task wheel that my sister makes every week. So we switch weekly. Right now, I’m sleep in the bed with her. She wonders at night. So I do night shifts and get up in the morning with her.
She had a bad fall in June. One week after she got diagnosed she fell down the stairs. Before that she was independently living. We were able to leave her in the house. She was able to go out. She would keep herself occupied.
We had to stop her from cooking a few months ago. She wasn't much of a cooker anyways but we had to stop her. Not even tea.
JENNIFER
Age: Early 60s
Loved One: Husband, Mid-60s
Diagnosis: Early Onset
Years Since Diagnosis: 1
Five years after symptoms began, he woke me up in the middle of the night asking me where he was. He thought he had done something bad. I assured him he was ok. He started wearing his street clothes to bed. When I tried to get him to change – I didn’t want him wearing the shirt that he had been outside in all day – he told me he wasn’t wearing street clothes and told me I am a terrible person. I realized I needed to become a better communicator.