Caregiving for Mom & Making Memories
Quick note - this blog post is off my usual topics - art, music, literature and inspiration. With my mom now on hospice, I’ve found it difficult to focus on my writing and keep up with this blog. It did lift my spirits to write this post, though, and I hope to get back to interviewing and writing about some of the incredible artists I know very soon.
I’ve been caregiving for parents for more than 15 years – first my mother-in-law who passed away from lung cancer. Then my dad who died from heart failure after a serious fall which broke his spine and shattered his shoulder. My father-in-law had diabetes for more than 40 years.
My very first serious experience with caregiving was the day my father-in-law, Mike, had his leg amputated due to the loss of circulation many diabetics face. This was followed by kidney failure, dialysis and a transplant, the loss of his other leg, heart valve failure and eventual replacement, loss of vision, and finally the heart and kidney failure that took his life. He was an extremely courageous man and I learned countless life lessons from him, and that experience.
My mom is the last of my husband and my four parents still living. Now that my mom is on hospice, it’s difficult for me to think about what my life will be like without her. There’s another part of this loss that is a bit more uncomfortable to talk about, but just as real. For years, I’ve had at least one parent, and their health, to focus on. Caring for them has become a part of my identity. So for now, I’m trying to focus on today and my mission to make my mom’s last days, last everything, as joyful and comfortable as possible.
My mother has lived in a nursing home near Flint, Michigan for a year and a half. The care she receives by the nurses, physician, CNAs and other staff is invaluable to a patient with something as debilitating as end-stage Parkinson’s and dementia. It's very difficult to lift her into bed or hoist her into her wheelchair. She requires two CNA’s for toileting. Her medication is given round the clock and the nurses do a far better job managing her myriad of pills than I ever did. I have found them to be a loving comfort to her, especially when me and my siblings are not able to be there. For that, especially, I will be eternally grateful.
However, no amount of skilled nursing care can replace the level or type of care I can provide to my mother as her daughter. Last week, I filled out a leave of absence request through the Family Medical Leave Act and turned it in to my employer. Part of the paperwork had to be filled out by the nursing home.
When the paperwork came back, I was disappointed to see that the lead nurse listed the reason I might need FMLA as this: “They may do it because it brings them comfort to assist in her care.” In other words, caregiving for my mother is for my benefit. This is particularly concerning because my mom is in one of the top nursing homes in Michigan and, overall, I consider the facility to be very patient-centered and progressive. I'm disappointed because this and other issues have made me realize that my mom’s facility does not fully recognize the value of the family member as a critical part of a patient’s health care team.
I know a bit about incorporating the family into a patient’s care not only because I honed my skills as a patient advocate over the past 15 years, but I work for Michigan Medicine in the Patient and Family Centered Care (PFCC) program. I recruit, train and coordinate patients and their caregivers to volunteer in our health system. Our volunteers courageously bring their stories and hard-earned perspectives into our work with the goal of improving the experiences and outcomes of future patients and their families. I’ve been fortunate to work in PFCC for the past four years.
When I am with my mother, I am able to focus solely on her care and comfort. The staff at Suncrest does an excellent job and their patient/staff ratios are high. Still, there is only one nurse plus 2-4 CNAs for the entire women’s dementia ward.
At this time, my mother can no longer advocate for herself. For instance, a few times when I’ve arrived in the afternoon, she will tell me she’s has had a terrible headache all day. She no longer understands how to utilize the nursing call button. I often disseminate and relay her symptoms to Suncrest staff who then work to alleviate them.
Between her Parkinson’s and dementia, there are times when she can eat regular food. Other times, she doesn’t even know how to use a spoon, or act like she recognizes what a spoon is. While the nursing home, per regulation, has put her on a soft/pureed diet, I have been able to work with her to get her to eat regular meals. I bring in her favorites – bacon, bean soup and, of course, chocolate. I can sit there and monitor whether she’s having trouble swallowing or is having one of her “good days.”
A few times, I have come into the nursing facility to find my mother has pocketed pureed food, meaning she holds it in her mouth, unable to swallow. Once, she had finished eating an hour before I arrived. The other time, I smelled something rancid when I kissed her cheek. It was food she’d been pocketing for two full hours that had turned sour. It wasn’t a life threatening situation, but my mom was definitely more comfortable after I helped her spit the food out, not to mention the potential for mouth sores.
In my work, I occasionally give PFCC presentations at our nursing orientations. One of the stories we tell is about a child who caught a medication error when she told the nurse her medicine smelled ‘funny’. Patients and families often lead to safer care. They can alert staff when something seems off, assist in turning to prevent bed sores, and many other things that can lead to a greater quality of care.
My mom frequently has uncontrollable body movements including restless leg, stiff arm movements and she clenches her teeth. I am able to help soothe these symptoms by re-positioning her in her bed, massaging her legs and using distractions (we've been having fun watching old movies with her, like her favorite: Breakfast Club!). One of the nurses I work with is launching a study in the surgical intensive care unit on the benefits of massage and oils. When she heard about my mom, she went home, researched which oils work best with Parkinson’s patients, and gave me an oil for my mom. These ancillary treatments, exercised with the permission of staff, can lead to better overall health and patient experience.
In addition to physical symptoms, my mother has suffered post-traumatic stress symptoms since she was a child, as well as anxiety her entire life. The emotional comfort I provide, even simply sitting with her and holding her hand, greatly improves her end-of-life journey. Her nurses have often commented on how much her emotional state improves when I, or another sibling, are there, helping to care for her.
I am fortunate that my siblings and I have all been on the same page with her care and we make all of the decisions regarding my mother’s care together. Most recently, it was at my request that she be evaluated for hospice care and, because we spend a great deal of time with her, it is often my family’s observations that lead to changes in her care plan.
I want my mother to have the highest level of care and comfort possible in her last days, and that will only happen with an increase in the amount of time I am able to spend with her. I hope I am able to provide the physical, emotional and mental comfort and care my mom deserves while also writing memories on her heart, and mine.