Paloma

Paloma is a 65 year-old woman who takes care of her husband, who has rapidly progressing Multiple Systems Atrophy (MSA), a progressive neurodegenerative disorder. It is similar to ALS despite being under the umbrella of Parkinson’s. Paloma lives with her husband in a bi-level home and he needs a lot of help with daily activities such as toileting, eating, and communicating with others through speech. 

Needs Current Approaches used by Paloma Alternate Suggestions What Could Be Created?
1. Paloma needs help finding the appropriate AT for her husband. This is difficult because his disease is progressing rapidly. He quickly progressed to needing a wheelchair, and he uses a transfer wheelchair. This wheelchair is causing problems with skin break down and Paloma does not have the resources to solve this problem.  
2. Paloma needs help with her husband’s toileting. He refuses to use the commode because it affects him negatively psychologically. Grab bars were installed and eventually the ceiling lift was installed.

Cushion was put onto the toilet to help with the skin break down due to the amount of time he was spending on the toilet.

3. Paloma needs help coping with the emotions associated with seeing her husband in a sling. It is very undignified.  
4. Paloma needs help helping her husband communicate because his ability to speak has deteriorated. Her husband was a great communicator and socializer prior to his MSA. Speech therapist worked with Paloma’s husband to do what he could, but his speech still deteriorated. 
5. Paloma needs help working with homecare workers. They come in at times that do not work for Paloma and her husband, which stresses them out. They tell her husband to go to the bathroom on demand, and he has to get up at 7 am, based on their schedule, and not based on his choice. Health Services gave back some tax money every month so that they could hire a caregiver of their choice who would live with them. This was a positive for both Paloma and her husband, and reduced the psychological strain.
6. Paloma needs help dressing her husband in a respectful manner. It has become very difficult and time consuming as the disease progresses. Paloma modified his pants by putting zippers down the front.