Category Archives: Dementia

YOAD—Alzheimer’s isn’t just for the old anymore

While waiting for a flight, I scanned The Times of London. The sidebar on page 14 read: “Dementia kills man, 40.” I was immediately troubled by how we continue to report dementia as a disease. Dementia is a general term for decline in mental abilities. Dementia happens because there is a brain injury or illness. The person mentioned as “one of the youngest reported to die from dementia,” had damage in his frontal and/or temporal lobes of the brain. That damage had caused the dementia, named “Frontotemporal dementia.”

brain_witelsonMaybe it’s because I’m in the field of aging and family caregiving that I want us to have a better understanding of diseases that cause life-altering dementia. I wish that more people understood these diseases, especially as we’re seeing more cases in younger people.

Young Onset Alzheimer’s Disease (or YOAD) is often misdiagnosed as depression or simply “change of life” issues for women. I interviewed a man on my radio show who struggled for years to get an accurate diagnosis. He started noticing changes in his mental capacity at age 39 and his doctors came to the same conclusion: he suffered from stress.

I personally know people with YOAD and it is incredibly difficult to be in public with them. We simply aren’t trained in how to respond to older adults with Alzheimer’s disease and we’re even less prepared to handle awkward conversations with younger people who have YOAD. I remember being in a fabric store with a friend who has YOAD. Someone approached her and said, “I love your jacket; where did you get it?” That was too much information thrown at her far too quickly. She couldn’t answer. I put my arm around her and said, “I remember when you got this jacket, but I can’t remember where you got it.” (My friend shook her head in agreement.) I know it’s your favorite.” (And she again agreed with a smile.) The inquiring stranger accepted that answer.

When you suspect someone is struggling to communicate or if you know someone has YOAD, be extra kind, but don’t treat him or her like a child. If they can’t verbalize, help them out in the most supportive way you know how.

Lost in a crowd of familiar faces

My dear friend Sylvia, who suffered from Alzheimer’s disease, was very agitated when I visited her at the nursing home. She was sitting in her wheelchair, banging it against the nurse’s medication cart. As I approached her I heard the nurse address her like this, “Sylvia you’re missing a shoe.” That meant nothing to Sylvia.

Later on, my dad tried to tell my friend, “This is where you can set your water glass.” Sylvia looked blankly at him and held on to her glass.

loneliness in a crowd copyEven though my dad felt that he was clear in his explanation, at a certain stage of Alzheimer’s disease sufferers can no longer follow simple instructions. We also can’t expect them to take part in or to understand our conversations, especially in large groups.

Part of what I do through my speaking engagements is help people understand what it’s like to be with familiar faces, but still feel totally lost in everyday conversation.

The closest I have been to understanding how Alzheimer’s disease can impede communication was when I was on a semester abroad in Norway. I remember one such time where I was the one completely adrift in a crowd.

A friend invited me to a party where I met a number of his friends. My Norwegian language skills were good, but nowhere near good enough to keep up with the rapid-fire conversations that were happening all around me. I felt lost, confused and totally exhausted by the end of the evening.

To top it off, I took the wrong bus to get back to where I was staying. When I finally arrived at my apartment, I was in tears. My roommate greeted me with, “We’re only going to speak English and tomorrow I’m taking you to the American Lutheran Church.” That’s how she helped me regain my footing and feel connected again.

I offer three ways to help you stay connected with a loved one who has Alzheimer’s disease and struggles to communicate:

  • Connect with your eyes—stand or sit at the same level with your loved one and look them in the eyes. Look at them when you’re talking to others, even if they aren’t able to contribute. Let them know that you see them and that they are included.
  • Slow WAY down—speak clearly and in short phrases. Allow pauses in your sentences and space for them to respond. Their response may come out in “word salad,” but nod and acknowledge them; don’t correct them. If they have lost most of their ability to speak, refrain from asking them questions that require complex responses.
  • Use touch—if they can’t form sentences, include them in the conversation by holding their hand or sitting close to them.

If you’re able to shift how you interact with a loved one suffering with Alzheimer’s disease, you also take care of yourself. You stay SANE* in a challenging caregiving world.

*Supported, Appreciated, Not Guilty and Energized, explained in my new edition of The Unexpected Caregiver

OMG I’m a Caregiver: Three Tips to Feel Appreciated

I never thought I’d be called at 2 a.m. to help my grandpa use the commode. Who wants to see their grandfather in such a vulnerable position? But I did it, and fortunately my grandfather was good at expressing his gratitude.

This isn’t the case with all caregiving. You didn’t ask for this new role and as one caregiver shared with me, “I do everything for my mom and my siblings can’t seem to find the time to help.” Wherever you are in your caregiving journey, old sibling rivalries often return, especially when taking care of Mom or Dad.

The second letter of my S.A.N.E. acronym, Appreciated, involves understanding that your family is not going to change now that care of a parent is needed. Be realistic and look at how your family functions (or doesn’t function). Don’t expect them to change their deeply conditioned behaviors; rather, manage your own expectations. Use these three tips to feel more appreciated:

  1. Let go of feeling you need to do it all. Allow others to help.
  2. Let go of the “shoulds.” Appreciate your own health and take time for you.
  3. Give up the idea of being thanked by others. Thank yourself.

 

 

No, You can’t do it by yourself: 5 Tips for Caregiver Support

 

My mom burst into tears in the middle of a restaurant dinner and instead of asking, “What’s wrong,” I was embarrassed. I thought, “Why can’t she pull herself together?” My mom had a disease called Huntington’s disease, which renders its victims incapable of acting what many call “normal.”

If you take care of someone with a disease that causes dementia, you are not living a “normal” life and caregiving is therefore doubly challenging. You may think, “He’s doing this just to drive me crazy,” when in reality the repetitive questions or unpredictable behavior are not malicious. You’ve known this person for years and now you are their caregiver—helping with daily tasks, while getting to know someone who is actually a very different new person.

Think of it this way: Do you ever get really frustrated at a vending machine when it won’t take your dollar bill? You straighten out the bill, insert it again, and it just keeps spitting it back, even though the bill looks fine? Your loved one may also look fine on the outside, but their brain is not working the way it used to. You need to find a new way of being with him or her, while you simultaneously figure out how to take care of yourself.

I know you want to scream. Some days you even yell at your loved one, but that only adds to your stress. This is why you must find support—a person or a group which allows you space to say all the things you simply can not say directly to your loved one. Being supported along your caregiving journey is the first step in being a S.A.N.E. caregiver—Supported, Appreciated, Not guilty and Energized. Start by finding support for yourself:

  1. Educate yourself about the disease so you know what to expect.
  2. Let off steam with a trusted friend.
  3. Set aside a half-hour a day to do something just for you.
  4. Join a support group (or start one).
  5. Find ways to laugh every day.

You know you would do anything to help out someone in your shoes. It’s time to take that same spirit of helpfulness and turn it inwards. Ask for help and let others support you.

I See that you’re suffering; let me provide relief

“When all is said and done, killing my mother came easily. Dementia, as it descends, has a way of revealing the core of the person affected by it. My mother’s core was rotten like the brackish water at the bottom of the weeks-old vase of flowers. She had been beautiful when my father met her and still capable of love when I became their late-in-life child, but by the time she gazed up at me that day, none of this mattered.”

The first paragraph in Alice Sebold’s novel, The Almost Moon, hit me in the gut. A frustrated daughter relieves her mother’s suffering while also setting herself free from the pressures of caring for someone who no longer recognized her as her daughter.

But this is a novel. This is not real life. As soon as I finished the book, I sighed and silently asked the unthinkable, “When will we see a headline about a daughter ‘relieving’ her mother of suffering?”

And then this article appeared. Is that what this is about? When we see a mother-daughter murder-suicide in the news, alarm bells ring. I discussed this with Dak and these are our thoughts in his words:

 

It’s just one case, right? It’s not like this is happening all over the place. This is not an epidemic. It’s just a weird thing is what it is. It’s an isolated incident, that’s all.

And yet, there is a whole lot of mystery to this that opens out into many possible worlds. This story offers very little detail. The authors won’t speculate. This one will.

I can imagine reasons for this happening from many angles.

The mother had a dread disease and no one would listen to her except the daughter who decided to act to alleviate her mother’s pain and then couldn’t live with herself.

The tyrannical mother finally became weak enough for the abused daughter to overpower and kill. Then killed herself.

Sorrow at loss of being useful.
Sorrow for being a burden.
Without hope.
Interior demons hide in the dark and they look like competence to everyone else.
Despair. So many reasons for despair.
Why did she choose a gun?
A belief that there is a better afterlife.
The weight of living is too heavy.
Too much of a burden on the ones you love.
Too much of a burden on the country you love.
Loss of community to death, to convenience, to entertainment and long distance.

What are the solutions here? How do we feel when we read a story like this? I feel my mind reach out to try to comprehend what happened, but why? Do I think I might become a woman whose mother is still alive and have to face this situation myself? No. But I can imagine how it could have felt and I think it would have felt pretty bad. No matter what the story behind the people is, at least one of them was suffering and had no relief in life. We can moralize about her choice, but that doesn’t seem like a solution to me. I feel that it’s wrong to kill, but happy people have no reason to kill. A satisfied society is a safe society.

So these two…hey one of them lived to be 93. That’s some persisting. I don’t think people live to be 93 without figuring a few things out and my feeling is that she had a good way of coping with stress, one that worked. Her daughter made it to 60 and that’s saying a lot as well. (I know we’re not supposed to be impressed with how long we live now compared to the entirety of our previous existence, but I’ve been watching “Cosmos.”)

She was suffering and we were in no position to offer relief. I think the fear is that one day we will be suffering in such a way that we need help for relief and it doesn’t come, or it’s slow to come. What kind of help?

We seem divided from our heritage. We have social media instead of being social, and I think many of us are fooled into thinking that the two are equivalent. There will always be suffering, but what if we were so kind to each other and considered ourselves together as a body rather than individual and separated pieces that we all shared the suffering so it ceased being so awful to any one of us?

I think it’s easy to forget that there are solutions to our problems and they are going to be found whenever two or more of us gather together. Remember who told us to do that? Again here it is easy to get hooked into the story, but the story is alive in us. We are telling the story of ourselves right now. I know I’m not alone in preferring kindness to suffering.

Dak Gustal is a freelance writer and poet living in Randoph, VT. You may contact him at st.augustus@gmail.com

A new way to handle ‘badly behaved’ older adults

Tase them! This isn’t the first time a nursing home resident has been tased and it won’t be the last. It should cause alarm bells to be clanging in the hearts of everyone caring for an aging loved one. We aren’t given details in the report (I’m waiting for Paul Harvey to fill us in with “the rest of the story”), but it’s very disturbing to think that a professional caregiver felt it necessary to call in outside enforcement.

I’ve been in tough situations with residents. I recall Ann in a dementia care community I managed: she believed herself to be a nurse by day, thought she needed to free fellow residents by night. When our dementia care community’s water pipes sprung a leak and we needed to evacuate residents just after bedtime, Ann seized the opportunity. Read more »

I don’t need training. I know my Mom

What do you do when your mom has Alzheimer’s disease, your father denies it, and your siblings are of no help? Caring for a parent with Alzheimer’s disease has a steep learning curve. Yet may family caregivers feel they “should” be able to handle it—No training needed. You must ask for help. Read what you can get your hands on. Attend support groups. Instead of arguing with someone who has Alzheimer’s disease, use my favorite phrase: “You may be right.” And walk away.

I recently interviewed Pam Brammann, who provides training for family caregivers. She shared with me brain brain images (PET scans). First you see a normal, active brain compared to an Alzheimer’s brain. You see very little activity in the diseased brain. The second set compares a normal infant’s brain to that of someone with late stage Alzheimer’s disease. It becomes clear just why you can’t reason with someone who has Alzheimer’s disease—their brain is working at the level of a 2-year-old.

Normal Brain vs Alzheimer's Brain Late Alzheimer's Brain vs Normal Infant's Brain

As Pam explained in our radio interview, “If a two-year-old runs across the street, you don’t sit that child down and elaborate the dangers of running across a street; the child won’t get it. Same goes for someone with Alzheimer’s disease.” Reasoning with someone who has Alzheimer’s disease or other dementias doesn’t make sense.

Even if you think you know your Mom or Dad, you may not understand how the disease has changed their brain. Getting a little training to better understand the disease and just how you can handle the symptoms (or behaviors) will do wonders to keep you sane.

Wait until you retire to travel

Good thought, but doesn’t always work. How many times have you heard stories about your neighbor who put off travel until retirement, only to be met by a stroke and have to give up his dreams to travel.

My maternal grandfather waited. And then his Huntington’s disease spoiled his dreams of a retirement full of adventure.

In The Unexpected Caregiver, I provide creative suggestions of how to physically travel and also mentally travel from the comfort of your own home. Add to my suggestions the ideas of Thomas P. Stern of Assisted Vacation. Whether it’s Alzheimer’s disease or physical issues, the Assisted Vacation team will build a travel vacation that supports both caregivers and care receivers. Read more »

Songs in my head

I think in song lyrics. I open my laptop and the words to a Bahamian lullaby pop out of my mouth: “All my files Lord, so-oon be open.” This just happens with me. And yet if you sit beside me in church when I have the words of a hymn in front of me, I’ll sing different words. My good friend Emily chuckles and says, “How can you get the notes so right and the words so wrong?”

Music has always been a part of my life. It’s something I can share during a presentation or at the bedside of a Hospice patient. When I worked in a dementia care community, I used song to greet the residents. Music can be used to shift moods, to acknowledge sadness, to release anger, to embrace happiness. As a family caregiver, you can use music to connect with your parents. Instead of listening to “their” music or “your music,” take turns. My dad and I dance to Madonna and Frankie Valli. Instead of telling your kids or grandkids to “turn off that noise,” engage with them. What is it about the beat, the words, the band that they enjoy?

IMG_2513More than just enjoyment, music can also be used to help someone who has suffered a stroke to relearn how to speak, a person with Parkinson’s disease to improve their posture and reduce pain, or a patient in Hospice to leave a song legacy. I welcomed back Melissa Hirokawa, M.M. MT-BC, Neurologic Music Therapy Fellow, on “The Unexpected Caregiver Radio Show,” where we focused on using music in stroke therapy. Melissa clearly loves her job and shares delightful stories of how her work has improved the lives of those elders to whom she gives care. Our previous interview focused on how music therapy supports the family caregiver. Both interviews are upbeat and insightful.

Whether you engage a music therapist, use songs to connect with your loved one, or like me, think in songs, let music support your on your caregiving journey.

Reconnecting with Mom and Dad

How do you reconnect with Mom and Dad? Even if one of them has a disease that causes dementia? It is often a challenge, especially when we’re trying to do something “special.” Family issues get in the way and we get frustrated. Your parents may not move as quickly as you do and you get irritated. When they don’t hear you (and you don’t understand them), tensions rise.

But I’m talking about reconnecting with them and not doing anything special. I recently interviewed Dr. Victoria Sweet, author of God’s Hotel. Dr. Sweet worked for over 20 years at San Francisco’s old Laguna Honda Hospital, a giant chronic care facility for the city’s destitute and ill. At one point in the interview, she said, “There’s nothing like presence and giving someone space.” Another reminder of the importance of being with someone vs. doing for someone. Dr. Sweet used to sit on the bedsides of her patients and listen. Or at times, just sit. It is that simple. But you must let go of the to-do list or the notion of doing something special.

Showing up is half the battle, but when you do, allowing someone space to express themselves—to cry or to laugh—is priceless.

Of course there are other ways to actively reconnect with your parents (and that is exactly what I talk about in The Unexpected Caregiver). Bring in a picture, a children’s story, a memento, and hook into your parent’s memories: “Tell me about this handkerchief, Mom” or “What is special about this book, Dad?”  Be gentle if there is memory loss. Reconnecting is not about the correct answer, but is more about sharing stories.

And don’t forget to hook into your parents by just sitting beside them, connecting through silence. Silence is, after all, golden.

To just BE in the DOING time of year

“What we know matters, but who we are matters more. Being rather than knowing requires showing up and letting ourselves be seen” (Brené Brown, Daring Greatly)

Being rather than doing also requires presence. It’s easy to do, do, do—go, go, go. It’s much more challenging to sit quietly and listen.

One of my favorite holiday stories is the year I spent with my mom and dad—just the three of us—and we ate a Totino’s peperoni pizza. Read more »