Published on July 17, 2020
Caring for a Loved One with Cancer and Dementia
I’ve known my dad for 43 years but have only developed a more-than-surface-level relationship with him in the last two. He was a great dad in many ways, but we lacked an emotional connection. Sadly, the disease that opened the door to us finally having a deeper relationship is also stealing him away.
My dad has vascular dementia. And Alzheimer’s disease. He also has spinal stenosis, which confines him to a wheelchair. And last summer he had eight weeks of radiation for skin cancer.
As recently as February 2017, when my brother suggested I visit, my response was, “By myself? What would we talk about?” If I could have skipped ahead a few chapters in the book that day, I would have been surprised by what I saw. My dad’s failing health and my divorce were about to cause our life paths to converge.
Less than a year later, I moved to Chicago, became my dad’s power of attorney, and started making medical decisions with and for a man I loved but never really knew.
Dementia Creates Challenges for Care Partners
My brothers and I cared for our mom during her battle with breast cancer, but this is different. My mom was always Mom. Right up until she passed away, she was the same kind, loving, pleasant woman she had always been.
My dad is not always pleasant. A man once known for his outgoing personality and joke-telling skills, the dementia often makes him anxious and angry, sometimes distrustful. He latches on to ideas and obsesses over them, lashing out at anyone unable to see life through his lens.
He was impressed by the radiation-oncologist who treated him last year. So was I. The problem was, when the eight weeks of brachytherapy ended, he was adamant that this doctor take over all of his medical care. He implored me to set up appointments to discuss his other health issues and became frustrated at what he saw as my unwillingness to help. Repeated attempts to explain were futile.
Had my dad not had dementia, the man who flew helicopters in Vietnam and graduated with an M.B.A. from Harvard Business School would have understood why a cancer specialist could not also be his urologist, cardiologist, neurologist and primary care physician. Sadly, the version of my dad with memory loss couldn’t make that connection and was unabashed in expressing his frustration. It was a rough couple of weeks.
When Someone You Love Has Dementia, Live Their Truth
One of the kindest things anyone has said to me recently is, “You have my permission to lie.” This gift came from the geriatric psychologist working with my dad.
We were discussing situations where my dad asks for help with something that isn’t happening. For example, he went through a phase where he called late at night, convinced he had been kidnapped from his care facility, and asked me to call 911.
When I tried bringing him back to reality by asking about items I knew he could see from his bed — a photo of my dog, his favorite hat, the calendar on the wall— he would agree, yes, he could see those things but said “they” must have stolen them to confuse him. And then he would accuse me of being on “their” side.
After reading “Creating Moments of Joy Along the Alzheimer’s Journey,” in which the author, Jolene Brackey, explains it can be kinder to lie to people with dementia if telling the truth will make them feel worse, I tried a new tactic. One she calls “living their truth.”
The next time my dad called for help, I agreed to call the police and promised to stay by my phone. From 9:00 pm until he fell asleep after midnight, he called every 10-15 minutes for updates. I rehashed make-believe conversations I wasn’t having with dispatchers and said help would be there soon.
The next morning, he had a smile on his face when I arrived, and he said, “The police never came, but everything worked out. I was able to get back here on my own. I can’t thank you enough for all of your help last night.”
Now, when faced with the decision to live his truth or mine, I consider a question Brackey poses in her book, “What is the most loving thing to do in this moment?”
If You’re Caring for Someone with Cancer and Dementia
I don’t have all the answers, and I still make mistakes, but here is my advice if you are in a similar situation:
- Trust yourself. You will have to make decisions for your loved one. If it’s your parent, sibling, spouse, best friend — you knew them before they had dementia. What did they value then? As long your decision is made in love and good faith, it’s the right one. Trust yourself to make it.
- Forgive yourself. You will make mistakes. You will get frustrated. You will say things you wish you could take back. But you will also have beautiful moments and witness depths of strength and compassion you didn’t know you had. Forgive yourself on the bad days — this isn’t easy.
- Take care of yourself. Self-care isn’t a luxury, it’s a necessity. Take breaks, ask for help, set boundaries. By taking care of yourself — even if it seems selfish — you will be better equipped to be the care partner your loved one needs.
I don’t know how much time remains until my dad forgets who I am, but I hear the clock ticking loudly. His doctors have explained that because he has both vascular dementia and Alzheimer’s, it’s difficult to predict how things will progress.
On his good days, he is grateful and kind. We have conversations we should have had years ago, and I see him now, really see him, not just as a dad, but as an imperfect and fascinating human being with his own hopes, dreams, achievements, disappointments, regrets.
Dementia forcing us together while slowly tearing us apart is a Trojan horse filled with hidden blessings. When the day comes that he no longer knows me, I will be at peace. The relationship we are cultivating in this season of life will carry us through the next one.
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