Friday, March 6, 2009

Mom's Journey With Alzheimer's

Do you or any of your friends have a parent with Alzheimer's? What I'm sharing in this article would have been helpful for me to read prior to experiencing the drastic shift in my mother's lifestyle a couple of years ago. I never expected to have such an emotional roller coaster.

Mom lives in a life care campus that has various levels of care. She was living in a garden home, completely independent other than interior and exterior maintenance and one meal a day at the communal dining room.

Keeping a schedule becomes impossible.

One of the first things I noticed was her confusion about what she had planned. I had a couple of her friends comment that she was not showing up at arranged times they had planned for dinner. Mom has kept a calendar for years where she writes anything that is planned and notes about what has happened. She's always been on time for any appointment, even early. For her to miss appointments was not a good sign.

When I was going to pick her up for one of her medical appointments, she would get confused as to what day we would be going and leave me numerous messages asking why I hadn't arrived. This would also occur on the actual day of the appointment. She would be confused as to what time of day it was so would call me wondering when I would be there.

Anxiety builds with the confusion.

I tried to solve this problem by calling with just enough time for her to get ready for an appointment. We didn't talk about what day the appointment would be. This would make her anxious also because she wanted to know in advance when she would be going somewhere.

For a long time she knew she was confused and was upset by that. She liked to be in control of what she was doing. This definitely felt like lack of control and loss of her independence. By her own decision, she had already given up driving. We never found out why, but suspect she had a close call that scared her and didn't want to be in an accident.

Self-care deteriorates.

When I started seeing a sink full of dirty dishes and clothing stacking up on her clothes rack, I could see that her habits had certainly changed. She has always kept an immaculate kitchen and took good care of her clothing.

She stopped going to the dining room and chose to eat snacks at home instead. Her choices for meals were not nutritious. When we shopped, she wanted to buy various carbohydrates. Generally she would have had nutritious meals at the dining room. We didn't realize for a while that she was not going because she said she was going. When I checked with the dining room, I found out she hadn't been there for weeks. The only time she had gone was when I was there for a visit.

No longer could we rely on her taking her prescribed medicines. In discussion with her physician, she decided to start her on Aricept, an Alzheimer's med. We knew with this additional med to take that she would definitely need to have someone see that she took her appropriate medications regularly. The service of having someone deliver meds was available where she lived and it helped her to stay on her own for a longer time. Mom resented the interruption to her sleep when the person arrived. I felt reassured that someone was also checking in on her on a regular basis.

As time went on, Mom would not even be dressed when I arrived for a visit. I would need to help her shower and pick out her clothing. And sometimes it was even a struggle to convince her that she needed a shower. In the past, Mom was always fresh out of the shower, dressed to a T, and waiting for me when I would arrive for a visit or to take her to an appointment.

Those months of watching Mom's decline and working to give her the care that was appropriate at each stage were extremely stressful. I found it difficult to keep focused on my business and to feel passion in any part of my life. With skillful counseling and coaching, I developed strategies for rekindling my passion and getting the focus back in my business. I knew that I had to take care of myself in order to be there to support all the aspects of my life and business.

After six months of various strategies to support her to stay independent, my siblings, Mom's physician, and I made the decision that Mom really needed to be in the Care Center division of the life care facility. This was a difficult move because Mom was very attached to all the collection of family furniture and endless mementos of her full life.

We have surrounded her with family photos, recognition plaques she was awarded over the years, and hand work done by various members of the family including her mother. It was important to Mom that the family would appreciate the cherished belongings. My sister and brother and I sorted through her home, making sure that nothing was discarded that was part of our family heritage. We worked with all the family to find out what each person would like to have from the home. I took countless photos and posted them on the web so that family from Alaska to Washington, DC could view and choose items that had meaning and memories for them.

Mom is well cared for and still appreciates our visits. Days and times and location are foggy for her, but with a very structured schedule, she seems peaceful knowing what will happen next and that her needs will be met.

I'm able to be there for her with an open heart because of the steps I took to restore my resilient spirit.

If you're dealing with Alzheimer's or other challenges in your family and need some support in creating strategies for coping with all aspects of your life, look for more posts detailing what I've done and what could help you stay centered, strong, and loving.

1 comment:

Fatma said...

It must be really difficult to see a beloved parent go through such changes.

Thank you for sharing how you walked through this. I am glad your Mum is in a safe place and cared for and that you could connect to your spirit during this time.