I lost my dad a couple of years ago to bladder cancer at age 86, but the truth is, he had already been quietly slipping away from us for several years into the twilight of Alzheimer’s Disease. More recently, I have watched my friend Sheri struggle with the challenges of being a full-time caregiver for her mother with vascular dementia. Neither of us are dementia authorities; we’re not even clinicians. But both of us have experienced the frustration of trying to help our loved ones navigate a medical care system that often seems ill-equipped to address the needs of patients with dementia.
As hospitalists, you care for frail and confused elderly patients every day, and I respect the challenging and stressful work you do more than you will ever know. I also recognize that many hospitalists are well-versed in dementia disease processes and that I’ll probably be talking about things you already understand far better than I do. But this time, I am not writing as a subject matter expert or even in my usual role as a hospital medicine quasi-insider, but simply as a loving daughter.
Here are a few things my friend Sheri and I hope you will keep in mind – and acknowledge to us – the next time you are caring for our loved ones.
- My loved one can’t answer your questions or tell you what hurts.
We both have experience with clinicians who insist on asking questions of our loved one with dementia, while ignoring or marginalizing us caregivers who are standing right there. When my father was admitted for a bladder biopsy, the pre-op nurse came over and started peppering him with questions, despite the diagnosis of dementia in his chart. “What’s your name? What’s your date of birth? What procedure are you having? Who is your surgeon?” While my dad was still able to understand and respond to basic questions, one of the behaviors triggered by his encroaching dementia was to go radio-silent in unfamiliar or uncomfortable situations. So Dad just looked at me, waiting for me to respond for him. I started to answer, but the nurse brusquely cut me off, saying “No – I’m asking him, not you.” I get it; she was probably required to try and elicit a response from him. But she might have done so in a way that was less threatening and more respectful of his mental state, and of mine.
My friend Sheri commonly encounters doctors and nurses who keep asking her mother Lois what’s wrong or where it hurts. You wouldn’t know it by looking at Lois or even from a cursory introduction, but her dementia is far advanced and she can’t understand – much less answer – such questions. Furthermore, just because our loved ones with dementia can’t tell you where it hurts, or may not even appear to be in pain, that doesn’t mean there isn’t a problem. While residing in a memory care facility, Lois developed a serious foot ulcer that led to hospitalization for sepsis because she was unable to tell the staff she was in pain and no one noticed her abscess. That’s when Sheri quit her job to care for her mom at home.
- My loved one can’t follow your instructions.
When our loved ones don’t sit up, turn over, raise their arm, or follow other instructions, it’s not because they are being recalcitrant. They either don’t understand what you are asking them to do, or they can’t connect your request with the proper body movement.
Oddly, they will sometimes do things for us that they won’t or can’t do for you. We want to be your partners in caring for our loved ones, so please take advantage of our experience and knowledge of their limitations and let us help you when we can. Sometimes it’s just a matter of being a little more patient, cajoling instead of demanding, and realizing that what worked yesterday won’t necessarily work today, so we need to try something different.
- My loved one isn’t a mean, uncooperative, or violent person.
Our loved ones with dementia are often unable to express themselves in acceptable ways. Sheri’s mother hates having people touch her, and when she feels trapped or afraid, she reacts violently. Sheri recently took Lois to the podiatrist and ended up having to throw herself across her mom’s legs because she was yelling, cursing, and kicking at the podiatrist who was trying to trim her toenails; my friend received a vicious knee in the midsection and a couple of bruised ribs for her effort. Please remember that our loved ones can’t help it – if they were in their right minds they would be mortified by their behavior, but it’s just part of their disease.
I encourage you to recognize and take advantage of my familiarity with my loved one and their particular manifestation of dementia. I clearly don’t know what you know as a clinician, but I do know my loved one and can often interpret their moods and behaviors better than you can. Again, I want to be your ally, not your adversary.
- Just because my loved one isn’t well groomed, it doesn’t mean I don’t care.
My dad was a career military officer and was always meticulously dressed and groomed. It distressed my mom greatly that as he descended into dementia, he stopped caring about his appearance. He wore his rattiest old clothes, refused to shave, and wasn’t particularly careful about toileting. He lost interest in most foods and dropped weight, so his clothes hung on him. We bought new clothes, but he refused to wear them. There wasn’t much my mom could do about it, other than – in extremis – refusing to leave the house with him until he had showered and shaved (and even that wasn’t always successful since he also lost interest in going anywhere).
I have known other dementia sufferers who exhibited similar behaviors and understand this is also part of the disease. Please don’t judge us. We love these people desperately and are doing the best we can to keep them safe and well cared for.
- My loved one needs me to be in the loop.
Because my dad couldn’t advocate for himself, I was keenly aware that I was his only voice. If you don’t talk with us about what’s going on, we can’t help our loved ones – and we can’t help you. With the technology available today, there’s no reason you can’t communicate regularly with me to ease my anxiety and help me fulfill my responsibility to advocate and care for my loved one.
- There’s still a human being in there, deserving of your compassion and respect.
Our loved ones may not be able to respond appropriately or comply with your requests; in fact, they may not be very responsive at all. But they are not sacks of potatoes. As family members, too often we feel as if clinicians have stopped seeing our loved ones as people because they are not able to interact “normally.”
Please treat my loved one with the dignity and compassion due to each of God’s creations, both when I am in the room with you and when I am not. To you, he may be just an unkempt, confused, curmudgeonly old man; but to me, he is my Daddy. You would want the same thing for your mom or dad under the circumstances.
I encourage you to ask me questions to learn more about my loved one’s story and who he was before dementia set in. It might help you to know more about the interesting life he lived, his experiences growing up as one of four children of a widowed mom in the remote California desert during the Great Depression, his professional life in the military and working for NASA, and his deep and abiding faith in God.
- Finally, please save some compassion for me.
Caring for someone with dementia is exhausting work, both physically and emotionally. The worst part is having to stand by and watch as someone we love slowly slips away from us, knowing there’s nothing we can do about it and fearful that the people to whom we are entrusting their care won’t treat them with the same respect and diligent attention that we do. So sometimes, we may snap at you, tell you things you already know, take up too much of your time, or be unreasonably demanding. We hope you will understand, and that you will forgive us.
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Here are a few useful resources for both family members and medical caregivers:
Changing a Culture of Care by Teepa Snow (Teepa Snow is considered one of America’s top dementia educators.)
AAFP Cognitive Care Kit Caregiver Resources (This page includes links to a variety of other websites with caregiver resources, including NIH and HHS.)