A Caregiver’s Perspective…on Slow-Developing ALS with FTD
Partners in FTD Care
by Miki Paul, PhD, psychologist, former caregiver of husband who had ALS with FTD, and facilitator of the AFTD phone support group for caregivers of loved ones who have ALS with FTD
I lost my husband years before I lost him.
Chuck and I were living our dream life, spending weekends at our cabin with our dogs. But over the course of four and a half years, my gentle, even-tempered husband began exhibiting mood swings, personality changes, and cognitive difficulties. He became frustrated easily and was quick to anger; his ability to empathize or feel compassion disappeared. A formerly confident man, he became insecure and fearful, accusing me of having an affair when I was a little late coming home from work. He had trouble concentrating; tasks that he used to be able to do without thinking (using a remote control, turning on the windshield wipers) now took significant effort. Holding a job became impossible; he was fired seven times in four years. Chuck neglected his hygiene, often going days without showering. He started speaking slowly, his voice sounding soft and thick. A friend asked if he was drunk.
A large, physically strong man, he progressively became weaker, unable to open his usual ice tea bottles, carry luggage or lift up pans from the stove He could no longer take long walks due to leg weakness. He slept more, and lost 25 pounds without even trying.
I felt confused, anxious, and helpless. Who was this man? What happened to my sweet husband? I begged him to see a doctor. It took literally years for him to agree.
Eventually Chuck was diagnosed with ALS with FTD. I was heartbroken, because I knew it was a death sentence (he died just 16 months after diagnosis). Yet even though this was the worst possible news I could ever imagine, I was relieved that his changed behavior was not willful, but rather the fault of his disease. Keeping this in mind was critical as the disease progressed.
ALS with FTD is the cruelest of diseases, relentless and unpredictable. Watching Chuck wither away in mind and in body, trying to get him to drink thickened liquid (which he hated), and seeing him gasp for air was extremely upsetting and nerve-racking. I thought being a single parent was the hardest job in the world, but it turned out being a caregiver to someone who has ALS with FTD is even more challenging. I grieved for the loss of Chuck’s quick wit, his intelligence, his reliability, his friendship. He could no longer be my rock, so I became his.
Early on, I promised him I would keep him at home. So I scaled back my workload to 12 hours a week and hired reliable home-care providers (after firing a few) to assist my husband while I worked. I became his advocate, scheduling and accompanying him to all medical appointments (by then he had 10 different providers, including an ALS neurologist and a separate FTD neurologist).
The daily grind of caregiving duties exhausted me – once, I determined that I had completed 31 care-related tasks for him in a single day. I helped him with toileting, grooming, dressing and eating. I had to learn how to work all of his equipment, from his BiPAP machine to his lift chair to his wheelchair van – a steep learning curve for my non-mechanical brain. I was also responsible for organizing and administering all his medication. On top of that, I had to make all the household and home-maintenance decisions by myself, as well as medical decisions on Chuck’s behalf. It was incredibly stressful.
Caring for my husband was a privilege, a heartache and a burden — he relied on me for everything. I knew I needed support, and attended support groups for both FTD and ALS care partners, but I met no one else who cared for someone with both FTD and ALS. I felt so alone. I begged AFTD and the national ALS organization to start a national phone-based support group for caregivers with this dual diagnosis. In the months before my husband died, I was able to participate in the new group a few times, which made me feel so grateful. The group was a ray of sunshine for me; I felt so desperate to connect with others going through a similar experience.
My caregiving experience changed me, and taught me much about myself. I became more organized, more assertive (on behalf of both my husband and myself), and better at time management. I learned to give up perfectionism, to be more patient, to stay in the present moment, rather than project into the unknown future. I learned I am more resilient than I ever imagined. I learned my body could become stronger.
I learned that a caregiver must care for oneself as she cares for another. I planned for two much needed respites for short visits to my daughters and my grandchildren, which helped me cope. I received much appreciated stipends for these respite breaks from AFTD to help cover the costs of hiring in-home caregivers. Having some fun away from the sadness at home was critical for maintaining my personal well-being. I realized that I could not do it all without saving some energy, care and love for myself, so I learned to make time for myself without feeling guilty.
The cure for despair is hope. Even though my husband had two terminal diagnoses, I hoped for a new treatment or cure — if not for him, then for future generations. Donating his brain to science was at least a step towards one of those possibilities.
Throughout his journey, I hoped for a peaceful death for my husband while maintaining hope for my own future, even one without my beloved. Fifteen months after my husband died, I relocated to a different part of the country, near family, to create the next chapter of my life.
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