Reflections on the life relinquished to care for a loved one

I decided to go out to lunch today, and as soon as I sat down I started reading Measure of the Heart: A Father’s Alzheimer’s, A Daughter’s Return Home, by Mary Ellen Geist.

The book starts with the author’s very brief recap of leaving a successful career as a journalist to return home and care for her father. The “unkempt hair, no makeup, and a look of exasperation” in her eyes and those of others who’ve done the same. Faces like her mother’s “that seem to say, This shouldn’t be happening to me. I don’t deserve this. This was supposed to be the best time in our lives…” “The daughters whose eyes I meet… Sometimes we look very, very lost. Almost as lost as our parents who have Alzheimer’s.”

And suddenly, I’m thrust back into those feelings, into having given up a career — a business in my case — and professional activities, professional aspirations, friends, my plan to adopt a child, on and on, all those feelings of loss. And that was before things got hard with my dad, when his memory was slipping significantly but he just needed some support.

Now that my beloved Daddy been gone almost 19 months, I still have no desire or energy to restart my business. I hit the brakes when he went into hospice, expecting for it to last a few months, but he lived for two and a half years, and closing out his house took more than a year. Starting again from scratch is a mountain I’m not ready to climb. I’m grateful for the opportunity to run The Purple Sherpa, though I wish the hard work came with a paycheck at times when I’m wondering how I’ll pay my bills — something I never wondered Before. (Something I’m grateful to find a way to answer every month, especially grateful since I know many others aren’t able to answer as easily.) I’ve moved to a home I love, I’m spending time where I want to, I’ve resumed an important professional leadership position that has been a decades-long goal. There’s much good in my life, but it’s unrecognizable compared to what it was and what I thought it would be. And it’s all tinged with loss.

Make no mistake: I would do it all again, every minute. The good, the bad, the hideously ugly.

But reading this has taken me back in time, left me in tears in the middle of a restaurant, tightening my throat too much even to swallow the garlic Parmesan fries I’ve been anticipating for weeks.

This is what people who haven’t been through this experience can never understand.

Dignity for a person who’s living with dementia?

​It is, hands down, the most popular image I’ve shared, with thousands of like, comments, and shares. I’m not surprised, because Teepa Snow‘s quote is a direct challenge to the often-expressed belief that dementia robs a person of who they are, makes them say and do things that they’d find humiliating, and leaves them essentially as an empty shell. A secondary belief is that the way we as caregivers and bystanders react to someone with dementia can give them as much dignity as possible despite the disease.

Honestly? Even typing those sentences makes me sick to my stomach. That’s how much I disbelieve those perspective.

Here’s what I do believe:

  • I believe that people who have dementia are still themselves, though they may not be able to express who they are in the way they once did.
  • I believe that people who have dementia retain intrinsic dignity, meaning that they are just as worthy of respect and self-respect as they ever have been.
  • I believe that people who have dementia say and do things that are out of character because the disease alters and damages the brain.
  • I believe that the “out of character” behaviors are no more humiliating than any other unpleasant by-product of disease. Falling to the floor and thrashing around for no reason might be humiliating; falling to the floor and thrashing around because of a tumor-induced seizure is not humiliating. A style of walking that would be embarrassing for someone with full physical capability loses any negative tinge for someone who is walking as best he can due to a disability.
  • I believe that the way we respond to a person who has dementia can affirm who they are or strip them of their identity.
  • I believe that the way we respond to a person who has dementia reveals the degree to which we feel they are worthy of respect.

I am sad to admit that there have been times when I was embarrassed by my father’s dementia-induced behavior. I was embarrassed when he yelled at someone working at the local Social Security Office when we were trying to get him properly enrolled in Medicare. I was embarrassed when he spoke with a friend and I saw their confusion because his words didn’t make any sense at all. I was embarrassed when his disinhibition allowed him to say things to people that he never would but for the disease. In each of those instances, I was embarrassed because I didn’t think my father was behaving appropriately and I apologized for his behavior.

And my embarrassment and apology meant that in those moments, I did not see him as worthy of respect–my reaction robbed him of his dignity. Typing that sentence makes me sick to my stomach, too.

As I came to realize that those and other behaviors (eating with his hands, for example) were driven by the disease, I realized that he was doing the very best that he could with his eroding brain. When he says or does things that aren’t appropriate according to our ordinary social mores, I might explain so that others can understand that we are seeing a disease in action, but I no longer apologize. My father is disabled, and his disability is not inconsistent with dignity.

So, what does it mean to treat a person who is living with dementia with dignity?

  • Speak to a person who has dementia like an adult, not like a child. It may be necessary to use simple language or even to use gestures or images instead of words, but there’s an underlying respect for the life experience and perspective of an adult, even if that’s compromised by the effects of dementia.
  • Include the person who has dementia in the conversation. Tell stories about your loved one that you can enjoy together, but don’t talk around the person. One of the most embarrassing exchanges I was party to was when a friend visited very early in my dad’s disease progression and asked me how my dad was. I turned to my dad, asked how he was feeling, and he answered. Not catching the hint, the friend continued to ask me questions that should have been directed to my dad. I was embarrassed for the friend, not for my father. (And I experienced plenty of medical providers who spoke to me even when my dad was capable of responding — in which case my response was more anger than embarrassment.)
  • Whenever possible, get to eye-level with a person who has dementia. Standing over someone can make him or her feel intimidated, but sitting or kneeling so you’re eye-to-eye creates inclusion.
  • Listen to a person who has dementia, and don’t interrupt. Especially if language has been affected, it may be difficult for a person who has dementia to communicate. Take a deep breath, slow down your own reactions, and listen actively for the meaning behind the words.
  • Offer options to a person who has dementia. As the disease progresses, ask yes-or-no questions (“Would you like some lemonade?”) instead of asking an open-ended question (“What would you like to drink?”), but give choices when you can.
  • Help a person who has dementia with tasks, but don’t take over tasks she can accomplish. Break down the task into small steps, such as setting out the forks, then setting out the knives, then setting out the spoons instead of setting the table. Letting your loved one do as much as possible will help to maintain those abilities as long as possible and will allow your loved one to feel useful. That sense of being useful may be a component of one’s dignity.
  • Give positive feedback whenever possible. A person who has dementia may lose confidence in himself because of losses as the disease progresses. Encourage actions that will help to improve self-confidence and comment. My father can’t do a lot these days, but he loves to pet my dog, and my dog loves it, so I remind him how great he is at caring for Gracie.
  • Distinguish between words and behavior consistent with who your loved one is and words or behaviors that are the result of the disease. It’s hard, so hard, to remember that the outrageously nasty thing a loved one just said came from the disease and not from the person who loves you. And it’s painful when a loved one no longer cares about family photos or traditions. Remind yourself that it’s the disease, not the person you love.
  • Interact with your loved one as he or she is now, not as he or she used to be. The very best tip for dealing with dementia is staying relentlessly present to life today, letting go of what life used to be, and not anticipating what it will be. That’s a gift for your loved one and for yourself. I have cried more tears than I can count wishing to go back or fearing what may happen, and those times are absolutely wasted. When I can be with my dad as he is today without comparison to another time, we have the opportunity to connect and share some special moments.

There may be specialized instances of treating a person who has dementia with dignity (in bathing, helping with incontinence, and so on) but these general principles are a good start. What would you add? How do you respect your loved one’s dignity? And if you believe that dementia has robbed your loved one of his or her dignity (and you’ve waded through my arguments to the contrary) how do you work to restore that dignity?

How to help your parent deal with bad news. What to do to avoid getting stuck in the story.

My dad used to get stuck in negative stories. He would hear bad news — anything from a car crash that injured a local family to global tragedy — and he would take the story in, make it personal event if it didn’t actually affect him, and be unable to move on to another topic. I dreaded his finding out anything bad, because I knew he would be anywhere from sad to distraught. After trial and error, I figured out three steps to take that would help him either move past the news or at least deal with it in a way that would cause less distress.

  1. Stop the inflow of negative news.
  2. Reassure. Tell your parent that everyone is safe. Even if that isn’t true, you may want to “fibulate,” or tell the lie in service to the person you’re caring for. To my mind, it’s better for them to believe that all is well than to be frightened and unable to move through the fear. (And it should go without saying that you’re responsible for your parent’s safety, so you’ll be in the best position to take whatever precautions are necessary, if any.)
  3. Distract. Point out less alarming things and try to grab your parent’s attention elsewhere.

These steps are fluid, and you may need to move back and forth among them or be prepared to stay on one step for some time. Being prepared with these steps will help you to help your parent.
What works for you? Please comment below with any tips, ideas, or questions you have.
And please visit the Alzheimer’s Caregiver Minute Facebook page for inspiration and tips, then join the closed ACM Exchange Facebook group to find specific answers and guidance to your caregiving questions.

Laughing together…Alzheimer’s can lead to funny stories, too

We all have stories about Alzheimer’s, some funny, some tragic, some painful… And we need to laugh together as often as possible. For today’s Real Alzheimer’s Talk, I’m sharing one of my favorite funny stories.

Please share yours as well, either in the comments below, by joining our Facebook group ACM Exchange, or by creating your own video and tagging it with #RealALZTalk. We need to share our stories, so no one affected by Alzheimer’s feels alone and so we break the silence around dementia.