I took a family leave without pay to take care of a cancer patient. I waited on him until he died. It was about six months. I was told I would be paid, but I never received any money. It was a great experience, but all my bills. I even lost some things in the process.
Toileting (for dementia)
- Set up the bathroom to make it as easy as possible for the person to get on to and off of the toilet, e.g. having a raised toilet seat and grab bars.
- Notice when the person gives a sign about needing to use the toilet, e.g. agitation, fidgeting, tugging on clothing, wandering, touching the genital area. Have a routine and take the person to the bathroom on a regular schedule, e.g. every two hours. You may have to respond quickly if someone indicates they need to use the bathroom.
- Some people have a regular schedule, especially for bowel movements. If this is so, remind the person to go to the bathroom at the usual time, e.g. right after breakfast.
- If the person needs help removing clothes, help him/her by moving slowly and encouraging him/her to help. Remind the person that they need to pull down their pants before sitting down. Clothes that are easy to remove will help, such as those with elastic waist bands.
- Don't rush the person; allow time for them to empty their bowel and bladder. It may take a little time to get started. Walk away and come back in a few minutes or stand just outside the door.
- Hand the person toilet paper to use as appropriate. You may need to help get the person started. Using wipes can sometimes be easier than toilet paper if you need to wipe for them.
- Assist as needed to pull pants back up. Sometimes the person will walk away without pulling pants up, which is a fall hazard. Provide as much privacy and modesty as possible.
- Put a sign, preferably with a picture, on the door to the bathroom. Keep the door to the bathroom open so the person can see the toilet.
- Use a commode or urinal by the bed at night so the person doesn't have to get up and walk to the bathroom, which increases the risk of falls and incontinence. Have a night light if the person does go to the bathroom at night. If a person has urgency when needing to urinate, a commode or urinal by the chair in the living room can also be helpful.
- Sometimes people reduce their fluid intake for fear of not making it to the bathroom. Dehydration can lead to other problems, including urinary tract infections. Make sure they stay hydrated by drinking throughout the day. However, limiting fluid at night might be helpful. Caffeine and alcohol can also increase urgency with urination.
- Using incontinence pads in the underwear might be a way to reassure someone that they don't have to rush or panic when they have the urge to urinate.
- Flower pots on the floor, wastebaskets, and other containers can be mistaken for a toilet. Remove them from the area the person stays in and from near the toilet. Keep the path to the bathroom clear of obstacles and clutter.
This Tips for Caregivers sheet was prepared by Family Caregiver Alliance. Funded by the Stavros Niarchos Foundation. © 2012 Family Caregiver Alliance. All rights reserved.