My siblings and I agree that to serve our mom, we won’t pursue things we believe will extend her life. There are so many times when this creates an internal struggle for me. When my mom was declining and refused to eat, I struggled with the notion of giving her Ensure. There were other benefits like avoiding skin tears due to malnutrition so we brought in a variety of flavors to see if mom would even drink these meal replacement shakes. I didn’t want my mom to be hungry so I have used a rule that what she is being offered needs to bring her pleasure. That simple question has helped me navigate several choices recently.
Before my mom was in the wheelchair, she would constantly be walking around her community. Being able to move about as she wished gave her control. It took her a while to adjust to being dependent on someone for everything from sitting up, to dressing and toileting. In the beginning she would yell “Wait, wait,” in hopes of at least commanding the pace of her movement. She eventually began to thank everyone who was helping her move and lamented at the fact of being so dependent on someone else for everything.
One of the benefits of the hospice care were visits from a social worker. She shared with me that my mom has expressed feeling depressed over the loss of control. I was sad, but also happy that my mom confided her feelings with someone. I know she’s lonely and it’s difficult for her to understand what occurred to land in her the current community. I have explained it all to my mom in varied ways different times. First to fulfill my golden rule of always telling mom what’s coming and discussing the options with her, then as she has asked questions.
I saw how much stronger my mom’s been getting and her personal daily assistant (PDA) has been encouraging her to transfer herself giving her back some control. The doctor ordered three physical therapy sessions. I must say, we were not sure mom would comply when it was time to do the exercises and work with the therapist. She did and within two weeks I saw her walking down the hallway supported by her PDA.
On my last visit a walker appeared in her room. On my visit today, I found my mom sitting in the living room of her community without her wheelchair. She then proceeded to use it to go all the way to the Activity Room. She was slow and needed to sit down once, but she did it.
The choice to move my mom to this new community has brought wonderful results. My mom is adapting and has actually been improving. I never thought I would have good news to share about my mom, but things have been getting better.
The diagnosis is frightening and brings so many unknowns. The only fact that I seemed to latch onto early was “things will never get better.” I am happy to have to eat my own words. Gulped.
