November is also National Caregivers Awareness Month! And to connect this with Alzheimer's Disease Awareness this month, let's talk about caregivers of those living with AD. Caregivers are unfortunately too often neglected in the treatment of AD, and unfortunately, too many caregivers think they need to sacrifice their own health and wellbeing to care for their loved one. So here is a blog post (as well as another one here) that reminds us all how important our caregivers are, how much we need them to be healthy and well, and how much help they themselves can often use.
Remember Mary from last week's case study? Let's continue her story below.
Case Study: Mary
Fast forward to 7 years after Mary was first diagnosed with Alzheimer's Disease. Mary was at first diagnosed with the mild stage AD and had mild difficulties with memory and concentration. She was working with her Lifestyle Therapist, and she was working hard at maintaining the skills that she had so that she could still participate in her social groups and daily activities.
7 years later, Mary now shows more obvious signs of forgetfulness as well as some behavior changes. She is diagnosed as being in the moderate stage. Mary can still do most of her daily basic activities (e.g. toileting, dressing, grooming) but will need assistance once in a while due to forgetfulness or bad judgement. She needs assistance picking out appropriate clothing, otherwise, for example, she will leave the house in winter with only a T-shirt on. She needs assistance when she leaves the house because she often becomes lost and has a hard time remembering her phone number or address when someone offers to help. Mary can no longer drive, is no longer as social as she used to be, and gets anxious in busier settings. She now spends most of her days at home. Her lifestyle therapist works with her at home, but notices that Mary is becoming more and more confused.
So who provides the assistance Mary needs? Her son James and daughter-in-law Carrie. James and Carrie have 3 children who are all away at college and all of whom they financially support. James is a lawyer and Carrie is high school teacher. In the past year, James has been able to work more from home, and Carrie has cut down on the number of classes that she teaches. In the mornings, James will be there to help his mother get dressed and eat breakfast. In the afternoon during the lunch hour, Carrie will return home to check in on Mary and make sure she is eating her lunch. Then Mary's therapist comes in the afternoon once a week to work with her on exercises, fall prevention, and memory maintenance. In the evenings, both James and Carrie try to be at home together with Susan while she is "sundowning," or becoming more restless or agitated.
This past month, Mary seems to be getting more and more agitated and restless. She has been spotted wandering in the street a few times and was brought home by the police. Carrie and James are worried and need to pull together to find more time to stay at home with Susan and keep her safe, but both are stressed out with the reduced number of hours they are already facing. James has begun to experience back pain, while Carrie has had an increase in the number of migraines she has each week.
LIFESTYLE Therapy: JAMES & CARRIE
In addition to working with Mary, Mary's lifestyle therapist (LT) Jessica offers to work with the entire family as a unit in order to help James and Carrie feel less overwhelmed and to maintain everyone's quality of life. Here are the goals that they came up with and the possible solutions they decide to try.
- Carrie will try to work at school mostly in the mornings and James will change his schedule so that he works in the office at night.
- James and Carrie were hesitant to bring their children into this, but are realizing that it would be helpful for them to learn about what is going on at home. Whether their children offer to help or not, they will keep their children in the loop with weekly family emails. James and Carrie ask their lifestyle therapist to be a guide during the initial conversation with their children. After that, the LT helps them all problem solve ways to write productive and supportive emails to each other.
- The LT teaches James and Carrie techniques to help Mary dress that allows them to do less work that might harm them physically or emotionally. For example, picking out entire outfits for Mary and placing them on a chair next to her bed so she sees it first thing in the morning. That way, she can begin getting dressed before James and Carrie need to go in there.
- The LT assesses James' work station at home and suggests ergonomic adjustments. The LT gives James a home exercise program to help him improve his posture as he works and teaches him pain management/massage techniques to help him relieve tight muscles.
- The LT provides education on how migraines can be stress-related. The LT teaches Carrie stress management techniques such as deep breathing, squeezing a hand ball, and using a tennis ball or Theracane to relax tight muscles in the neck and shoulder areas. Carrie tries each one and lists the ones that she likes so that she has an arsenal of tools to draw upon when she feels her stress climbing up.
James and Carrie will create a schedule of caring for Mary that both parties agree upon.
James and Carrie will speak to their children about the financial and emotional situation at home.
James and Carrie will learn energy conservation techniques to use in Mary's care to prevent burnout.
James will experience at most 5/10 back pain each day.
Carrie will experience two or fewer migraines a week.
Do you know any caregivers? Ask them to tell you their favorite, their worst, and their most typical caregiving stories. Give them a hug, tell them to sit down and take a break, and thank them for all that they do!