Families Faced Changes and Challenges in 2022
In the January/February 2022 issue of SSV Medicine, we spoke with three members of the SSVMS community about the effect dementia has had on their families.
Eric Williams, MD is a retired surgeon whose mother, Anthonia, had been diagnosed. His family had been working to maintain whatever connection they could with her before she slipped into the black hole of dementia. Karen Poirier-Brode, MD is a retired OB-GYN whose husband, Cal, had deepening dementia. She fell into the role of primary caregiver and fought the loneliness of finding the partner she’d known for so long was no longer there. Brandon J. Craig is the Communication and Partnerships Coordinator for SSVMS and his mother, Mary, had been diagnosed with early-onset dementia. He also found himself as the only viable option for her caregiving and had struggled to navigate the care system.
Each of these families experienced major developments in 2022. Late last year, Cal passed away from cancer. We checked back with Brandon and Dr. Williams for an update on what the past year has brought; their responses have been edited for length and clarity.
Are you still caring for your mother at your home?
Williams: She is in Florida living with my sister after some intense family discussions and is much happier. She survived a bout of pneumonia and was near death but recovered. She remembers all her children and turned 95 on Christmas Day.
Craig: She’s at Legacy Oaks memory care here in Sacramento. She’s much happier there than she was at my house and markedly better than when she was at a short-term respite stay over the summer. The story we crafted and that the staff has been reinforcing is that her dad found her a place to live with a roommate and that she’s getting to know everyone there at the facility for a couple of weeks before dusting off her counseling skills and being their onsite therapist. That’s working really well. She also thinks her roommate is her childhood friend, which is great. She’s been wanting to write the story of her life (everything she shares with us is decidedly untrue) but she didn’t have a typewriter, so my brother, wife, and I found one for her for Christmas. I’m hoping she’ll write something but I have no clue what it would look like.
How has the last year changed for your loved one?
Williams: My mother’s memory loss seems to have stabilized, though it is clearly not normal. She has less interest in eating and requires more support for her activities of daily living. She now requires a sitter 24 hours per day, seven days per week. She sleeps more and has shown interest and enthusiasm in fewer things. Her condition was made significantly worse by the development of pneumonia from which she has recovered.
Craig: In late September, we moved my Mom into the memory care facility. Her condition had been deteriorating at an alarming rate. My caregiver support group was shocked — cognitive issues that took years to happen for them would be months or even weeks for us. Over the summer, she’d spent about two and a half weeks in a short-term memory care facility — she would call us eight, nine, ten times per day crying because she was so miserable. Thankfully, in her current facility, she’s having a great time. She’s finally acknowledged the residents are roughly her age and is making friends. She was absolutely beaming when I saw her over the weekend and seems genuinely happy for the first time in years.
What impact has this had on you and the rest of the care team?
Williams: My sister with whom my mother lives now works fewer days to allow her to be available and other family members travel to her location to assist for periods of time. Not everyone in our large family agrees with the next best course of action and this is affected by not knowing how long this would last or can be sustained. Care is expensive and much of it is uncovered by medical insurance.
Craig: Her deterioration has been emotionally traumatic for me, if I’m going to be brutally honest. There are some mental tricks that I tried to help me work through this and, in retrospect, I have no clue if they helped or hurt. But it’s hard when your mother is looking right at you and you have to remind yourself that the mother you knew isn’t there anymore. She doesn’t remember who you are. She remembers she has kids but not that she raised them. It was difficult to hear the theories she’d create about everyone — theories that were clearly and decidedly false. In many respects, it was as if the woman who raised me had already passed. But she’s still my mother and I had to ensure she was getting quality care.
The stress of the situation started taking a physical toll on my own health. Mercifully, we were able to navigate before it became untenable, but that was then another thing that both my wife and I had to figure out.
The two greatest challenges are financial and maintaining family unity, neither of which the family is handling well at this time.
What were the biggest challenges for you? Where have you found support during this time?
Williams: The two greatest challenges are financial and maintaining family unity, neither of which the family is handling well at this time. It was very difficult for me to care for my mother as this sometimes meant trying to reduce anxiety, reducing the risk of self-harm and encouraging sleep in the face of intense relentless and sleep deprivation. The impact on sibling unity is surprising and disheartening.
Craig: The biggest challenge for us was pregnancy. My wife and I had intended to have a child prior to my Mom moving in with us. After a lot of heart-to-heart discussions, we decided that we couldn’t put our lives on hold indefinitely and kept trying for a child, knowing that it could potentially take years to happen. It didn’t take years. At the time of this writing, my wife is 33 weeks pregnant. But we had to figure out how to keep the stress as low as possible for her.
I have had a large and expansive support structure including my wife, friends, coworkers, a caregivers’ support group, and my therapist. My wife has been the ultimate partner and stood together with me as a team. My friends have listened, taken my wife and me out one at a time so that we could keep coverage at home, and actually pulled together funding for a short-term respite over the summer. My co-workers at SSVMS listened to me vent nearly every day and, not only have they never complained about it, they’ve jumped in and helped wherever they could. The support group and my therapist have completely validated my concerns and emotions throughout the whole process, have offered help where appropriate, and have simply listened when all I needed was to talk.
What do you wish you could say to people who haven’t had these experiences?
Williams: To people who have not had this experience, I would say do not place yourself in the position of primary caregiver. This helps neither you nor your loved one. It is not the type of care they need or you can provide. When you can be with them be a son/daughter/significant other. You and they can live and sleep easier at night in that situation. Do not put your life and theosophy around you on hold. This too is what Supreme Court Justice Sandra Day O’Conner discovered when she retired to take care of her husband who developed dementia.
Craig: The system is broken. My wife and I struggled severely despite having every possible advantage when my Mom moved in with us: space in the house, two incomes, no kids, both work in medical societies, both have understanding and flexible employers, both have loads of contacts in the medical field, both are great with paperwork and forms, both in good health, both speak English as a first language, and on and on and on. And we absolutely struggled. Physically, emotionally, financially struggled. The system to get care for dementia patients is shattered and I don’t know how someone who works multiple jobs to make ends meet, someone who has children to care for, someone who has to find all of their resources in a different language, I don’t understand how they can be expected to navigate this system. Dementia patients are falling through the cracks and majorly impacting the people who love them. The people who have to be a full-time nurse on top of all of their other responsibilities instead of being the patient’s spouse or child or whatever. Everyone needs to understand that the demands placed on caregivers are extreme and they have to do all this while undergoing constant emotional trauma. Help them out however you can. Listening goes a long way.
Dementia patients are falling through the cracks and majorly impacting the people who love them.
What do you wish you could say to your loved one with dementia?
Williams: To my loved one I would remind them of my name, how I enjoyed the things which we did together and the things which they did for me even without me asking. At every instance I would have patience, caring, and love. Those words are as much for them as for myself, I suspect.
Craig: I miss you. I love you. I wish you had more of an opportunity to get to know your first grandchild. I’ll do my absolute best to raise them with the same love that you provided for us. I wish I had taken more advantage of learning your story when I had the chance.
How has this experience changed how you see yourself and the possibility of developing dementia? How has it changed the conversations you have with your loved ones?
Williams: The possibility of developing dementia is now so much more real. The initial imperceptible failing of memory now holds more significance as it may be a harbinger of worse things to come. I now question my choices made regarding the many days of insufficient sleep.
I have had a very open and direct conversation with my wife and each of my three children. I have reminded them that should I develop dementia they should not place themselves in the position of sacrificing their lives or that of their families or each other for my care. There should be no guilt as we will speak to the fullest extent possible should such a condition present itself.
My mother has dementia, her mother had dementia. I know this doesn’t mean I’ll necessarily have it, but it’s only human to think about what it could look like.
Craig: This is something I struggle with. My mother has dementia, her mother had dementia. I know this doesn’t mean I’ll necessarily have it, but it’s only human to think about what it could look like. I fear that I’ll become a burden for my wife and still-unborn child. We’ve had discussions as to what I’d like to happen in those situations and how to avoid becoming a burden. I’ve also found myself asking my dad more and more stories about when he was younger than I ever had before. I’ve heard that signs for dementia can start as far as 25 years prior to diagnosis. If that were the case, she’d have had signs starting when she was 41. I’m 33 now. It weighs heavily on my mind.
