Expert: Mary Gordon - 3/19/2010

Question
I lost my mother, aunt, grandmother, %26 cousin to Alzheimer.   Now my mother in law is in the late stages herself. My question is when and who should make the decision to stop getting her up and dressing her and putting her in her wheelchair ??  With everyone else I lost , we continued daily to get them up and bathed and dressed taken outside for fresh air.  My mother in law is in a home and for at least a month now she is in bed and hospital gown with bedsores.

Answer
Hi D.

If she is still able to sit with propping, and is awake at least part of the day, there is no reason to leave her in bed all day. This should be about giving her the best possible quality of life, and keeping her as comfortable and peaceful as possible. So it about what is best for her and not about what is convenient for staff. It is ultimately a judgement call - if she is in very late AD and she is too weak to sit up, or you sense it is actively uncomfortable or bothersome to her, or it is causing a medical concern, that is the time to stop. If you think she gets something of benefit from a breath of fresh air, and being around some activity for  stimulation, the family should be able to ask for this.

Clearly, if she has bedsores, they are not repositioning her often enough in the bed and should be using a special mattress, such as an alternating pressure system mattress (here are some samples http://www.progressivemedicalinc.com/air_mattresses.htm). Bedsores are ultimately a sign of inadequate care and attention - they need to be repositioning her often, keeping her clean and dry, and being very careful with the shear forces on her very fragile skin (i.e. anything pulling or rubbing, sliding down in the bed or chair etc.)  

If she is sitting up, they need to be respositioning her every 15 minutes or using an alternating pressure wheelchair cushion or similar device. Here is a sample product.
http://www.aquilacorp.com/products/  They have to be careful with propping her, so there is nothing that will pull on her, or cause decreased circulation.

Here is a good article from the Mayo Clinic. http://www.mayoclinic.com/health/bedsores/DS00570

Hopefully, someone in the family has a personal care power of attorney for your mother in law and can talk to the doctor and the facility about how to handle this concern going forward - to ensure she gets healed up and there is no recurrence - and that her quality of life gets factored into her care, as limited as the options may be. You want to be able to look back at her care, and feel she was treated with as much respect and consideration as possible, and that everything possible was done to keep her comfortable.

Mary G.