Tag: loneliness

Family, Poetry, Real life

6 priceless gifts you could give people living with dementia (and everyone else for that matter!)

My Alzheimer's Story

These gifts are inexpensive (they don’t cost dollars and cents, so everyone can afford them), and yet priceless (because of the fact they can’t be bought, and must be given from the heart). Even better, they can be gifted all year round!

Please consider giving one, several or all of these gifts this year (and always) to people who live with dementia in your family, your community and around the world.

Respect

You could treat people who live with dementia like the human beings they still are no matter what “stage” of the condition they are living with. You could treat them like adults, not children. You could respect their wishes, wants and desires. You could believe their lives still have value, and you could demonstrate that belief in the way you interact with them.

Love

You may have been told that people who live with dementia become empty shells. But that’s not true. They are people with rights and needs just like the rest of us, and they need to be loved just like the rest of us do. Share your love.

Time

You could give them the most precious gift of all: the gift of time. Carve out a space in your busy life and go to visit someone living alone, or someone who rarely gets visitors even if they are living in community. Once you get there, sit and stay awhile. You don’t have to do anything – just being with someone is often enough.

Understanding

People who live with Alzheimer’s disease and other dementias are widely misunderstood, stigmatized and marginalized. If each and every one of us took the time to educate ourselves and to really understand what’s going one with people who live with dementia, and what causes them to behave the way they do, we would all be a lot better off. If you haven’t already begun learning, start educating yourself now.

Compassion

Imagine what it might be like to be experiencing brain changes in which your memory and your ability to understand the world are shifting in ways that make it hard for you to navigate reality. Imagine what it might be like to experience stigma and isolation, to have other people take control of your life. Imagine what it might be like to walk in their shoes, and then give the people you interact with who are living with dementia your compassion and understanding.

Advocacy

People who live with dementia are often treated like objects, like pieces of furniture, as if they are less than human. Many are unable to speak up for themselves. We need to be their voice. We need to ensure that they are treated with dignity, and that they get the care they have a right to. When you see people who live with dementia being neglected, abused or treated in ways they shouldn’t be, SAY SOMETHING! And then keep advocating until things change.

These are gifts that money can’t buy, but that we all have the capacity to give.

Please give generously.

13+ needs we share with people who live with dementia

alzheimer annie invites you in

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

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Family, Poetry, Real life

alone: a heartbreaking poem by 89-year-old lilly who lives with dementia

My Alzheimer's Story

September 8, 2019: “Do you want me to read you the really sad poem I wrote last week?” Lilly* asks.

“Gee Lilly, I don’t know,” I say. “Not if it’s really sad.” I’m feeling a little melancholy myself.

“I’m gonna read it to you anyway.” Lilly has a mind of her own, no doubt about that! She and I have been playing Scrabble on Sunday nights for about year. I go to her place sometime between 7 and 8 p.m. and we play for an hour and a bit. She tells me the same stories over and over as we play, and I listen like it’s the first time every time.

Lilly is a fine Scrabble player, and I lose about as often as I win. She also has a great sense of humour, and is generally pretty positive despite her many physical challenges including spinal stenosis, which keeps her hunched over, in pain and using a walker.

I’ve come to learn quite a lot about Lilly, who will turn ninety on Valentine’s Day 2020. She has six children (a seventh died a few years ago), and ten grandchildren. Great grand twins are expected in November, and Lillly is determined to live until they’re born.

Lilly’s family members call and visit often, and although I’m not there to witness it, I’m certain at least one of them is in touch each and every day. She has other regular visitors, including me, and she goes to a full day adult program (which she adores), on Mondays, Thursdays and Fridays. She has LOTS of contact with family, friends, and support workers. But sometimes, because of her dementia, Lilly forgets about the abundance of social interactions she enjoys, and she feels lonely as we all do from time to time. When that happened last week, Lilly, who is a great poet and writer, put pen to paper.

As she read me the poem she had written, tears came to my eyes, and at the end, my heart broke with despair. Lilly gave me permission to share her poem (with a few tiny tweaks by yours truly):

alone

©2019 Lilly & Susan Macaulay

alone

i haven’t had a visit
i haven’t had a call
it really seems my family
doesn’t care at all

this is a special weekend
too bad that they don’t see
i’m lonely and I feel
that no one cares for me

i’m old now and I guess
i’m a bother to them all
but oh! how I am wishing
that one of them would call

i do not like the message
their silence seems to send
it comes through loud and clear:
they wish my life would end

Please don’t forget people who live with dementia, even though they may forget you. Call often. Visit often. Hold their hands in yours. Hold their hearts in yours. Tell them you love them over and over and over again, especially when they may not remember what you have said. It means the world to every one of us, young and old, living with a disease or not, to feel we are loved. 

* Not her real name.

©2019 Lilly & Susan Macaulay. I invite you to share my poetry widely via this post, but please do not reblog or copy and paste my poems into other social media or blogs. Thank you.

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

don’t mourn me long

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Life & Living, Love, Poetry

i’ll be glad when christmas is over

My Alzheimer's Story

Christmas isn’t all it’s cracked up to be for many people who, for whatever reason, find themselves alone or feeling alone. This poem is about the grief, sadness, and despair that many, including myself, may experience. If you feel like this, you may find some comfort in knowing you are not alone at this time of year or any other time of year for that matter. Difficulties are part and parcel of the human condition.

In the end, all things pass. And there’s hope in that.

P.S. I’d never heard The White Cliffs of Dover until I sang it with Mom after she moved out of the big red brick house on the hill. I thought it the perfect finish for this poem.

i’ll be glad when christmas is over

by punkie 2017

when christmas is over
i won’t have to pretend
to feel jolly and bright
when I’m empty within

i’ve no brothers or sisters
my family’s all gone
there’s nothing but darkness
where once the sun shone

what’s that you say?
be of good cheer?
how can I? who would?
i cry through my tears

my friends all have children
or parents or cousins
get-togethers to go to
sometimes by the dozen

but i’m not invited
to join in their parties
with ribbons and wrapping
and stuff hale and hearty

i wish i were happy
with all that I have
instead i feel lonely
forgotten and sad

but don’t get me wrong
please don’t be mistaken
your pity’s unneeded
as i’m not forsaken

no I’m not alone
oh no not at all!
there are millions more like me
someone’s neglected to call

those who give care
with little support
“we don’t have the time!”
their families retort

old folks in bad places
that none go to see
seems they’ve become
unwanted debris

homeless on streets
in boxes and sheds
without any blankets
or even a bed

people flee their own countries
escape in small boats
then drown by the thousands
because they don’t float

the seasonal spirit
to some is a bottle
or the comfort that’s found
in the folds of a brothel

like everything else
this too shall pass
just as happiness ends
the sadness won’t last

so don’t worry, don’t fret
it’s just the holiday blues
all will be fixed
in the year that is new

our hopes they ring out
like bells on a sleigh
the path will be found
with a will and a way

things may have changed
by this time next year
though the dearth of much promise
fills my heart with cold fear

perhaps if i write
dear santa a letter
next year he’ll deliver
a world that is better

so yes, I’ll be glad
when christmas is over
as i look forward and back
to the white cliffs of dover

 

©2017 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

https://myalzheimersstory.com/2015/12/23/an-alzheimers-dementia-christmas-story/

https://myalzheimersstory.com/2017/12/06/santa-claus-lives-with-dementia/

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Care Partnering, Inspiration, Life & Living, Videos

when i get muddled, i sure wish she were here

My Alzheimer's Story

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…

 

https://myalzheimersstory.com/2015/08/30/we-all-go-through-rough-patches-heres-one-thing-that-helps-us-get-to-the-other-side/

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Care Partnering, Resources, Tips, tools & skills

20 questions to ask yourself if you’re wondering whether or not you should visit someone who lives with dementia

My Alzheimer's Story

This week a new subscriber sent me an email, which said in part:

“My mother has dementia, and I went to see her a year ago. She got violent with me and verbally abusive. I took it personally and I haven’t seen her since. However, I have been sending cards and items of clothing in hopes to cheer her up. I was just told that she has 6 months to live, so I’m flying back down there the beginning of October.

Until I saw your [BANGS video] today I have been sitting here petrified and in total dread. Now I’m starting to feel empowered and not so scared. I feel so guilty for not seeing her this whole time. I hope our upcoming time together goes well, and we create some memorable last memories. With your advice I think I can make this work.”

I don’t know if this person’s mother lives in a LTCF or not, but the email made me think of all the people with dementia who live in LTCFs, and who don’t have visitors for whatever reason. Many who remain in their own homes or in the homes of their care partners also do not get visits from family members and friends. This tragedy made me think of 20 questions people may want to ask themselves when they wonder whether they should make the time and space to visit family members and friends who live with dementia.

Here are the 20 questions:

  1. How does it feel to feel lonely? When do I feel most lonely? What do I want when I feel lonely?
  2. How does it feel to feel loved? When do I feel loved? What makes me feel loved?
  3. How would it feel to never see my family again? How would it feel to never see my friends again? What is it like/would it be like to feel abandoned?
  4. How important is touch to human health? How important is touch to me? How important is touch to the person I know/love who lives with dementia?
  5. What does it mean to be connected?
  6. How important is connection to human health? How important is connection for me? How important is connection to the person I know/love who lives with dementia?
  7. How does it feel to be bored? What are some ways to alleviate boredom?
  8. How important is it to human health to be active and engaged? How important is it for me to be active and engaged with life? How important is it for people who live with dementia to be active and engaged with life?
  9. What are the benefits of visiting people in hospital for the people who are being visited? What are the risks?
  10. What are the benefits of visiting people in hospital to the visitor? What are the risks?
  11. How do I feel when I see someone I like/love who I haven’t seen in a long time?
  12. What might stop me from visiting someone I know/love who lives with dementia? (Make a list of as many things as you can think of.)
  13. What lies behind the list of answers to question 12? What emotions might play a role in my answers?
  14. What would happen to me if I became isolated, bored, disconnected, lonely, and unloved? What might happen to others in similar circumstances?
  15. What am I grateful for? What am I angry about?
  16. What is important to me? What is my purpose? What constitutes living?
  17. How has the person I know/love who lives with dementia impacted my life? Has my life or well-being ever depended on them? In what way?
  18. What do I want the person I know/love who lives with dementia to know about the way I feel about them? Have I told them? When and how? Have I shown them? When and how? What did that feel like for me? If I haven’t told them, why not?
  19. Is it important that the person I know/love who lives with dementia recognizes me? If yes, who is it important to?
  20. If the person I know/love were to die tomorrow, would I have any regrets?

Sometimes questions are more powerful than answers; I hope these are helpful. I think it’s also important to remember that we can’t control others’ behaviour and some people will choose to distance themselves no matter how much we might wish them to be involved (more on that here).

Links to other sets of 20 questions here.

https://myalzheimersstory.com/2020/02/16/20-questions-to-ask-yourself-when-someone-who-lives-with-dementia-wants-to-go-home-or-tries-to-escape-wherever-they-are/

https://myalzheimersstory.com/2016/10/14/20-questions-to-change-the-direction-of-dementia-aggression/

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