#Ftd dreamy days how to

#Ftd dreamy days how to

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 helped him with toileting, grooming, dressing and eating. 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 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). 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. He could no longer be my rock, so I became his.Įarly on, I promised him I would keep him at home.

I grieved for the loss of Chuck’s quick wit, his intelligence, his reliability, his friendship. 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. 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. Keeping this in mind was critical as the disease progressed.ĪLS with FTD is the cruelest of diseases, relentless and unpredictable. 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. I was heartbroken, because I knew it was a death sentence (he died just 16 months after diagnosis). It took literally years for him to agree.Įventually Chuck was diagnosed with ALS with FTD. Who was this man? What happened to my sweet husband? I begged him to see a doctor. He slept more, and lost 25 pounds without even trying. A friend asked if he was drunk.Ī 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 started speaking slowly, his voice sounding soft and thick. Chuck neglected his hygiene, often going days without showering. Holding a job became impossible he was fired seven times in four years. 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. 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 became frustrated easily and was quick to anger his ability to empathize or feel compassion disappeared. But over the course of four and a half years, my gentle, even-tempered husband began exhibiting mood swings, personality changes, and cognitive difficulties. I lost my husband years before I lost him.Ĭhuck and I were living our dream life, spending weekends at our cabin with our dogs. Instagram fashion influencers over 50.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