There’s a big myth out there that dementia causes the people who live with it to be anxious when it’s actually a whole bunch of other stuff that, in most cases, lies behind the words and actions they use to communicate and that those around them find challenging.
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Someone asked me this question on Quora. I thought it might be useful to share my reply here as well so others might be helped with the information.
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How difficult it is depends in large part on you, the care partner.
If a care partner is devastated and grieving over the fact the person they love who is living with dementia doesn’t recognize them, I think she or he will find it much more difficult and stressful to provide good, loving, compassionate care.
On the other hand, if the care partner can let go of his or her ego, and understand that being recognized by name or by face is really not that important, then I believe he or she will have a much easier time as a care partner. She or he will be less stressed, more relaxed, more loving and compassionate, more open to going with the flow, and more able to find joy, happiness and fun.
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Instead of physically and chemically restraining people like my mom, who wanted to keep going despite living with Alzheimer disease, we need to find ways to help them “dance,” whatever dancing means to them. If and when we don’t, we are killing them just as surely as we are killing the creativity of our children in educational systems that put them in boxes, make them sit all day, stifle their curiosity and force them to obey senseless rules.
Systems should be made to fit people. Not the other way around. Here’s the powerful and inspiring three-minute story of the little girl (the full talk is below the short clip):
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Empathy and sympathy are two different things entirely, says author and researcher Brené Brown. The former fuels connection and the latter drives disconnection according to Brown.
“Empathy is feeling with people,” she says.
In the short, charming and spot-on video below, Brown cites nursing scholar Theresa Wiseman‘s four things we must do to empathize:
See another’s perspective
Avoid judgement
Recognize emotion
Communicate all of the above
I’m sharing this because empathy is a cornerstone of relationship-centered dementia care. We need to get into the space and reality of our person who lives with dementia, and to empathize with him or her in order to provide the kind of care she or he needs and deserves. Easier said than done, I know!
Have a look and listen:
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My fb friend mary missy taylor issued an invitation. Here’s what she said:
“We live in turbulent troubled times. And it’s easy to be swept up in all that is dysfunctional, uncertain, and frightening. I propose to write a list of twenty things I love and challenge friends to do the same. Your format can be a numbered list, or something more creative such as a poem. For those who wish to participate, please encourage a friend or two you know to do the same. Let’s spread LOVE today.”
Here’s my list:
1 ) my sky tonight (pictured above), and all the others before and after it
2 ) the generosity of a “stranger” i met for five minutes a decade ago who believes that when we invest in girls and women, we invest in changing the world for the better. This stranger has since regularly gifted me with inspiration, hope, faith, love, courage, determination and passion for no reason other than we are all connected and somehow instruments of the universe
3 ) stepping outside and hearing the sound of chickadee wings as they fly to and from the feeder by the window
7 ) wood burning in the fireplace I’ve been lucky enough to sit in front of on winter nights for the past five years, and which makes me think of Joan of Arc every time.
8 ) the heart beat and hard beat of driving rain against my bedroom window panes this morning before dawn
9 ) pulling brown-eyed susans out of the front garden with my frien naisi just after the rain stopped, knowing she will transplant them in her garden and remember me ever autumn when they bloom
10 ) baked salmon with mustard glaze and broccoli with lemon and butter accompanied by bourgoigne aligoté
14 ) the joy of writing rhyming poetry that pops into my consciousness and then drops onto a page or a keyboard like pieces of a jigsaw puzzle
15 ) leah bisiani’s take on being a care partner: “Together, the care partner, the person requiring care and those who care for them, should join as one so that life continues as they all desire and deserve. The gift of life isn’t singular nor one way, because we all have the opportunity and the privilege that comes with caring for each other in a way that enhances the experience. Love does conquer all and living with dementia can never diminish true love. No condition ever does. Just so poignant and touching.”
16 ) the ripple effect
17 ) amazing women who stand on stages everywhere and tell their worldwide stories of tragedy and triumph, tears and fears and thus create cracks and fissures that let the light in and cause healing to begin
18 ) the tick tock tick tock of my mother’s antique clocks marking time, still.
19 ) lists, especially ones like this one, this one, and this one that help care partners transform their experiences
Everybody gets mixed up, loses things, forgets stuff, sometimes feels confused, and gets lost. It can happen at any age — seven or 70. We all need help, support and looking after sometimes, and boy, you sure realize it when you’re alone.
I wish my mom were still around to look out for me. Or maybe she is, but just from a different place…
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Living with dementia is hard. I know because I know people who live with it and they tell me so. And I saw first hand how hard it was for my mom.
Being a care partner to someone who lives with dementia is also hard. I know because I did it in various ways for a decade, and I read real-life accounts about how difficult it is for other care partners everywhere every day.
Sometimes people living with dementia and their care partners feel or think they are worse off than those on the other side of the coin. But are they? And if they are, does it really matter?
Living with dementia is excruciatingly difficult on everybody: the people who live with it, the people who live with the people who live with it, their families, their friends, and their communities. Everybody. Dementia is tough on everybody.
I get frustrated sometimes because we don’t need to make this dementia rough patch into a no-win argument about who has the shorter end of the stick. No one does. No one is worse off. It’s shitty. Life is shitty. We’re all in it, and it’s shitty. As well as joyful.
Just because someone expresses the fact that she or he is having a hard time, doesn’t negate YOUR hard time. It just means every-fucking-body is having a hard time.
We could have been the mother, farther, daughter, sister, or brother of someone killed in a square in Mogadishu today. Or the parent forced to send his child to sea alone in an unseaworthy boat because that’s the only one-in-a-million chance that child has to survive, only to have him drown on the way to potential safety. Or the young Rohingya mother who watched her baby being burned alive after soldiers threw him into a fire. And then she was raped. The rest of her family was murdered; somehow she managed to escape.
There are far worse things than living with dementia or being the care partner of someone who lives with dementia. We are lucky in so many ways. We should be counting our collective blessings. Let’s maintain some perspective, and create some space for more joy to honour those who don’t have nearly as much as we do.
End of mini rant.
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Being a dementia care partner to my mother who lived with Alzheimer disease was one of the hardest things I’ve ever done. It was also one of the most rewarding. Like millions of others worldwide, I was drafted into the role knowing nothing about dementia or even about being a carer. I learned a lot over 10 years.
Here are 15 essential qualities (in no particular order), that I feel a care partner must either possess initially or acquire during the process of caregiving in order to survive being a care partner for any length of time:
Courage: the ability to do something that frightens one
Determination: firmness of purpose; resoluteness
Compassion: sympathetic pity and concern for the sufferings or misfortunes of others
Flexibility: the quality of bending easily without breaking
Creativity: the use of the imagination or original ideas
Stubbornness: dogged determination not to change one’s attitude or position
Kindness: the quality of being friendly, generous, and considerate
Resilience: the capacity to recover quickly from difficulties (see Huddol video below)
Stamina: the ability to sustain prolonged physical or mental effort
Empathy: the ability to understand and share the feelings of another
Strength: the capacity to withstand great force or pressure
Energy: the strength and vitality required for sustained physical or mental activity
Gratitude: the quality of being thankful; readiness to show appreciation
Patience: the capacity to accept or tolerate delay, trouble, or suffering
Guts: toughness of character
Some of these may seem contradictory, but I feel they are in fact complementary. What do you think? Which might you “delete?” What might you add?
C. Stuart-Cole, whoever she or he is, is clearly brilliant. She or he has captured in this insightful and provocative drawing that is at once simple and complex, as well as heart breaking and motivating, the essence of how the work of millions (and it is literally millions) of care partners is devalued and under-appreciated. I know it will resonate with care partners worldwide and so I’m sharing it so each and every one will know that C. Stuart-Cole gets it. And I get it. And the care partner community everywhere gets it to.
Carers: you may be one E short, but what you do matters more than you will ever know. Thank you.
My plea below was answered, and somehow Caron Stuart-Cole found me on January 1, 2018. An auspicious beginning to the new year. Her Facebook page is here.
I tried to track down C. Stuart-Cole after I stumbled across her/his work somewhere online, but so far without success. Do you know her/him? Do you know someone who knows someone who does? I would love to find this talented artist and thank her/him for this awesome piece of understanding, and get her/his official permission to keep it on my blog. Can you help me find C. Stuart-Cole?
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Photo credit: Caters News Agency via The Daily Mail UK
“I think I’m going a little squirrely,” Mom used to say when I “misbehaved” in my late teens and early twenties.
I drove her crazy. I stressed her out. Maybe you react in the same way to someone you know who is living with dementia.
When we’re stressed, we feel out of sorts: our heart rate increases, we breathe more rapidly, our blood pressure goes up, we go into “flight, fight or freeze,” we manifest all kinds of unhealthy and uncomfortable symptoms.
On the rare occasions that mothering me got the better of her, Mom got stressed. She felt like she was going a little nuts. My guess is every dementia care partner feels the same way from time to time, maybe even all the time if their situation has spun out of control.
The Centre for Studies on Human Stress developed a “NUTS” mnemonic to explain what’s going on when stress sets in and things go squirrely.
NUTS, which encapsulates a universal recipe for stressful situations, comprises four main “ingredients:”
No wonder care partners–both those who live with dementia and those who are sharing their journey–get stressed and anxious. It’s normal. It’s expected. It would be abnormal if we didn’t get stressed.
Care partners without dementia are thrust into completely new “careers”. We’re drafted into playing parts we never would have dreamed of auditioning for, but here we are in supporting roles not knowing the lines or even the plot. As the disease evolves in our loved ones, we face unfamiliar twists at every turn.
Many care partners, including myself, never cared for anyone else before they began caring for a loved one with dementia, and most have no previous experience with the myriad forms or the diseases that cause them. We deal with things that often seem random and unpredictable – and we do it every day, sometimes for years and years, sometimes for decades. Who wouldn’t be stressed? It’s normal.
We question our own competence because we constantly feel like we’re failing. Successes are hard to identify in “dementia land” where we wage a never-ending losing battle against insurmountable odds. We’re in the trenches, and there’s no way out. Do we get stressed? You bet. It’s normal.
At the same time, people who live with dementia likely experience even more stress than we, their non-dementia care partners do.
Living with dementia is a completely new experience for them, as it is for us.
Many are justifiably terrified in the early stages, and in the later stages everything must feel strange to them all the time. They may or may not recognize the people around them even when they’ve seen their faces over and again – the hundredth time may be just like the first. Imagine meeting dozens of new people every day, day after day, for the rest of your life… How stressful must that be?
Their world becomes completely and totally unpredictable – everything is unknown, everything is chaotic from one minute to the next. Their own behaviour, moods and emotions are as much a roller coaster to them as they are to us. Nothing can be explained. Most things are confusing.
If that’s not enough, we speak about them as if it not they’re not there when they are; we treat them like children; diminish them by using pet names and terms of endearment; infantilize them; tell them what to do; take away their independence; and punish them for behaviours that would be considered acceptable for anyone else in similar circumstances.
What must their stress levels be like, simply by virtue of the fact that they live with dementia? How much more difficult must it be for them to cope as the disease progresses? No wonder they get anxious – It’s a normal response to the challenges they face.
One thing we can do as dementia care partners is take steps to reduce our own stress so we are better equipped to deal with it in those who live with dementia.
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My Alzheimer's Story 