When my friend, Debra Kostiw, Certified Master Dementia Strategist, asked me to join her in role playing for her educational series on dementia, I thought it would be one of those fun bucket list things. Since then, playing the part of a person suffering from dementia has grown from a few videos to several, with more to come. Talk about being type-cast!
Debra has a You Tube channel, https://www.youtube.com/@answersaboutalzheimers and, if you are caring for someone with dementia, even one visit will give you a mother-load of information and help.
She is currently loading her TikTok site @debrakostiw with videos of Yours Truly experiencing all manner of confusion, anger, and difficult behaviors. One viewer of the clip where I’m about to get behind the wheel of the car commented about my “demonic laugh” when I discovered the keys and made for the garage.
I had a great time yesterday joining Debra in a video for her You Tube channel, where we discussed why it’s so hard being a caregiver. We covered several topics that I think would help caregivers at every stage of caregiving.
So instead of my usual blog about caregiving issues, I’m sharing the link to that video this week. https://www.youtube.com/watch?v=UIrhSE68zYQ&t=40s
I hope you find it helpful, and if you do, please share it with others.
Sue, this video is wonderful! The two of you have set so many caregivers free with your acceptance of their unwillingness to take on this heavy mantle.
I often said as my husband’s life withered from pancreatic cancer that I was grateful that my role in his caregiving was short and intense. This sounds counterintuitive but I had lived for over twenty years as in ICU RN. I could deal with intensity as long as it was short-term; I still marvel at how you were able to care so well for Gene for so long. I was on top of every little piece: pain control, hygiene, MD visits, you name it….and yet I had many moments of self-doubt and weakness.
Speaking of doctor’s appointments, one of my biggest sources of stress was ensuring we made it in time for his visits at Hematology-Oncology, which was across town from our home. Many times after washing Bob up, giving him something he could tolerate eating plus his meds, applying his TED stockings, etc., we would be all set to go…and then he’d have to use the bathroom. In our home, there is no bathroom on the main floor so he’d have to use a commode which took a while, plus then I’d have to clean it. This resulted in many near-miss appointments, car rides that bordered upon speeding plus colorful words as I cursed the traffic. As a nurse with a bit of OCD over making sure I’m on time, I found these trips almost unbearable. I needed the reassurance and advice I’d receive at these visits, and I was so afraid we’d miss this. My poor dear husband would attempt to help me out by cautioning me to take a deep breath. He was doing his best to take care of me, which made me feel terrible. I was the nurse, I was SUPPOSED to be the strong one!
When Bob eventually was placed on Hospice care, I can appreciate how the staff not only helped me care for Bob, they supported me. I learned so much from these patient ladies and eventually was able to hold his hand as he drew his final labored breaths.
Caregiving is difficult! Sue is also a nurse, yet she also called upon the Lord frequently to provide her strength. One would never wish to be placed in this position, but each person has to decide what works for them to provide the best care possible.
Thank you for sharing, Cathy. I, and all who read this, can certainly relate. I also had mad rushes to the doctor’s office because Gene did not share my OCD need for punctuality.
I think you handled the acute phases better than I would. Like Rosalyn Carter said, there are 4 kinds of people: care givers, people receiving care, future caregivers and future people needing care. The situation is universal,so it’s about time caregivers received the help they need.