Dementia -merely human.
“I think that the only reason people hold onto memories so tight for so long is because memories are the only things that don’t change, even when people change..” Unknown
This is a post that I have wanted to write for some time but my heart is still raw with pain. I’m comfortably numb as the song goes . No words I write can do justice to what this illness does to people we love.
We have had the plague
Chicken pox
Aids and HIV.
Cancer.
The new cowboy in town in Dementia.
He has all the traits of the best cowboy in town
A steady hand
A look that says so much but not something you can be sure what it is thinking
It is true to its word
It takes Pride in his work
A true perfectionist
It doesn’t mind who it consumes and takes out the process.
AGE : 15.
STATE: awake
LOCATION : Kitchen ( Gran’s home ) South Africa
Gran comes shuffling in to the kitchen
“Que ce qui pas?“
“Can’t sleep”
“I will make you a chamomile tea” in her French accent
She spent a lot of time and money putting me in rehabs and looking after me when I was growing up.
I am possibly the first and only person to have seen my Gran cry that I know of — I’m not proud but honoured she trusted in me.
AGE:18 years
STATE: possibly drunk or hungover
LOCATION: Gran’s Bedroom, France
Grandpa was not doing well. My Gran broke down.
All I could do was hold her.
She knew Cancer and Chemo was going to be the undoing of him.
He still tried to look after his ‘Trois filles’ ( me, Mom and Gran) until his last breath.
The greatest love affair ever! ❤
What a pair they made.
Grandpa got a massive contract with L’oreal in the 1950′ -1960’s . He was the main sales rep for promoting the Loreal brand in Africa.
They travelled everywhere
Madagascar
Zimbabwe
South Africa
to name a few.
Gran had spent most of her life travelling. Her father was a general in the army. Her step father was some sort of captain and she spent a few years in the cote d’ivoire and other places.
They had 6 children together
And two other sons who I don’t have pictures of. She was and still is the queen of the family.
So much elegance ,grace and charm. She suffered a lot of heart ache in her life. Lost love, her mother was jealous of her as were her two step sisters.
She was kicked out of her home when she was 16 years old and pregnant. She went on to become a femme de menage and a beautician to survive the streets of Paris..
When she met my grandfather she never had to worry about love or money again. Even when he passed on from Cancer. Her twin sons and my own mother are still after her.
The relationship she had with my mother was unbreakable- even now. My Gran still demands my mothers time and is happier when she has her to herself.
Alzheimers and Dementia does not discriminate.
A cold and bitter night in the U.K..
The Wind screeched out a name
A lady manages to fumble with the keys to a door and lets herself out.
Where is she going?
No shoes,
a flash of car lights,
Great big BULGING eyes
FLAP ,FLAP
a night gown whips around the lady’s ankles
She couldn’t live on her own any more. She was found walking the streets in her night clothes, by her carer ,at the time on the coldest night the U.K. had in 2013.
Gran in her new home – the first of three new care homes she would move to until the present.
This was a place with bells and whistles on. It was like a 5 ***** hotel.
In the few months she stayed here.
She was found sitting in bed drowning in her own piss.
She had spread faeces all over the walls and under her nails.
The home said she was ‘too much trouble’.
Funny, they didn’t have a problem with taking our families money for the few months she was there.
New home – two days until Gran’s 80th. Her twin sons came out to surprise her
DSC02325DSC02321
The day my Aunt died of lung cancer . My Mom got a call from her care home to stay Gran had broken her hip. She spent 12 days in a normal hospital ward.. Always calling out. Neglected.
WAS THIS WHAT SHE SAW?
We thought we were going to lose her.
Three nurses,
A granddaughter,
A daughter.
a sedative
2 -3 hours
a struggle
Another sedative
FEAR
SCREAMS
SWEAT
PORES
TEETH EXPOSED – FERAL
EARS POUNDING
THIS SOUND – my idea of Dementia raging in audio.
She couldn’t speak but she could scream and lash out.
I don’t think I slept for 2 days after that event.
Christmas 2009.
Gran in hospital . The last time she would ever walk
Gran loved to walk
Gran will never walk again.
11046586_10204261418029644_857127424023282605_n.jpg
She had to be moved to another home that could meet her needs. No fancy hotel .
Gran’s 81st birthday
I go see my Gran every week with my Mom. I take my daughter. I don’t want her to forget my Gran.
She went from speaking two languages, walking, laughing, taking pride in her appearance to this person.
To be a person who would blanche if she knew what she was like now.
Maybe she does and that is what makes her so angry still. Yes, she screams and she can’t talk and she scares me sometimes because I don’t know what to do to help her; but she is still my Gran and she has a mental illness.
IT IS NOT HER FAULT!
Her home she lives in now has really put quality over quantity. It’s not a show home -.
The only people who have got my Gran to a place in her illness where she is probably going to be able to come to my wedding ceremony in June.
May is# MAKE MAY PURPLE month.
Across the world May is the month for creating mental health awareness.
Posted on Apr 5, 2022, in THOUGHTS and tagged Beliefs, Emotions, humanity, Life, Love, Relationships. Bookmark the permalink. 67 Comments.
Daisy in the willows 
My husband is a retired judge, part of his work was among those with Alzheimer’s, dementia and aging, you know the drill of guardianships, etc. He regularly visited nursing homes and played his guitar for the elderly, he never changed the songs when he went to the dementia units, without fail…when he played -instrumentally ‘Amazing Grace’ most would respond and sing or hum along…brings tears to my eyes when I think of it…thank you for sharing your experiences! Great post!
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wow! A retired judge- that is an honourable career. My favourite version of Amazing Grace is this one https://www.youtube.com/watch?v=ZoJz2SANTy. We played it at my Aunts funeral last year. She died of lung Cancer xxx thank you for the support xx
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Thank you again for the shoutout- terribly sorry about your aunt- yes, my husband was what they call a ‘probate judge’- wills, adoptions, guardianships for 20 years- he is still ‘active duty’ and does weddings often…I lived and reared children in the proverbial glass house! but all taken together it has been a wonderful thing…love the version of Amazing Grace! my husband plays classically and much like Chet Atkins..mostly instrumental, but will sing if pressed…ha!
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He sounds like a great man! I was lucky I got a good judge who over saw my own case when the Local authorities wanted to put my daughter up for adoption. He saw something and I fought hard to get her back. xxx have a lovely Sunday xx
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Hello
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Thanks for reading, Raymond. Much appreciated.
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Yes, it’s as you say: the fear of not knowing how to help. Just must be and nothing else…
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Indeed! it’s a twisted slice life deals us at times. Be and do -that is all we can do. x
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A very emocional post, and written from your very Big heart, dont ever change the way you are lots of love for you your family and your wonderful grandma
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❤ hugs Brooke xxxx
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Thank you for writing so emotively about your Gran. Daisy, my Gran, has dementia and… god, it hurts. I think it hurts us more than her at the moment because she doesn’t know she’s forgetting things. I can’t bear to watch.
My Grandad died six-seven years ago from, indirectly, America. In the end, he couldn’t swallow, couldn’t communicate, and we agreed to let him go, as long as he could have his last days at home. It took almost heaven and earth for doctors etc to let it happen, but I’m so proud we did right by him. I’m honoured that his last words were to me. I’ll never forget them.
People don’t know enough about dementia and Alzheimers unless they have directly experienced it through family etc. That needs to change. Posts like this will hopefully help people understand. When people are angry or violent, it’s not them. Dementia is an illness, just like any others. Your loved one is still there, just buried beneath layers of confusion and, potentially shame and fear.
Sorry, I’ve told my story and not yours.
Thank you for listening anyway.
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Now don’t you go apologizing for telling me we have some one and something in common. I’m so sorry about your Grandpa and Gran. My Mom always likens going to see Gran as having to mourn every visit. I know she is still there but she is so lost. Maybe you should do a post . There is this guy I follow who dedicated a lot of his time to getting peoples experiences with Alz and mentia out into the blogo sphere – I can always give you the his link and give him a heads up if / and if yo do it. 🙂
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Thank you so much, I’ll think of it. I’ve never really… got it out before, so maybe it would be good. I’ll need some serious mental preparation!
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Maybe just open up a word document or draft and just freestyle write. Don’t stop. Just let whatever is in your head no matter how bizarre spill onto the “pages” I think you have so much to tell and writin these kind of posts are liberating. Writing from the heart and having someone connect makes it worth it and makes it easier to do do the next time round. xx Give it a think
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Hi again Daisy. Since you employ the ghost so effectively, you probably know the story. My friend in Thailand spotted my reblog and sent me the whole story. Your friends might be interested. Okay if I post the URL?
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Yeah please do
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Stunningly beautiful. Thank you for sharing this wonderful story. My heart goes out to her, you and all the family. And to all who suffer through this.
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Thank you for taking the time to read it. You have a generous spirit . THANK YOU :0 X
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Reblogged this on Art by Rob Goldstein and commented:
May is mental health month and Alzheimer’s is also a mental health issue. Please read this finely written post and pass it on.
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Thank you so much for honouring this post about my gran. It is so generous and compassionate of your l love her so much
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Compassionate of you .
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In a sane world she is everyone’s Gran and is protected as much as possible.
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Heartbreaking…I’m so sad for her….
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It’s a horrible illness. Rob .
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To see how strong they were — and to see how time lays us low. The good news is she has you…and now she has the thoughts and prayers of those you touch with your blog. If we must suffer these depredations at least let us be loved.
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Indeed 🙂 x
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This made me tear up. Such a beautiful tribute…and an important message. Thanks for sharing Daisy. Your Gran is lucky to have you all.
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Thanks for reading xx
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It’s too much emotion in one post, Daisy! You made me cry. As a boxer, I always believed myself to be fit for my age, but your old man gave me points and won!
You know, in India we don’t have many care homes. Personally, I hate this idea. They may be helpless but are they really a nuisance, Daisy? That we banish them to a sanitized and star graded death house and visit them once a week when we are free? My dad was a truck driver. He loved me more than anyone in his own impersonal and rude style. My mom always hated me. They all live in our so much noisy madhouse. Someday, I’ll be shot by mistake, because people will think that I’m a bull. I’m a true Taurus, you see? A raging bull when upset.
You are so lucky to have them!
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Yes, I know the Indian culture look after your parents. The problem in the West like the U.K. is families move on -we don’t tend to stick together and remain as close. My Mother and My other Gran is a Taurus. I am a Scorpio and I think you have net your match 😀
I’m lucky that I was born into a good family and I treasure them all 🙂 thanks for reading Rakesh. Sorry about the emotion over load 🙂
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I was going to say “I actually have tears in my eyes”…but now I’m just crying. That was beautiful, and I so, so understand. My mom has Alzheimer’s and I’m living at home now to take care of her. She’s 56, it started in her late 40s but the doctors wouldn’t confirm the diagnosis because she was too young. She finally got the official diagnosis 3 years ago. I wrote this story I’d like to share with you if you have the time, before she got her official diagnosis.
https://serenasinclair.wordpress.com/2016/03/23/missing-memories/#more-8
I suppose it is my tribute, though I have written so many things about my mom. My uncle also passed away this year from Alzheimer’s. This is why your post got me crying. Both my maternal grandfather and paternal grandmother also died from Alzheimer’s. As did my great uncle and my great-grandmother. Thank you for your tribute, it was so touching, even if it brought me to tears, I am thankful to have read your story.
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It is so hard because you want the best for the person but also need to care for their safety. And, they don’t always understand. We experienced a bit of dementia with my mom before her unexpected death of heart failure. She would have been a terror if she hadn’t of passed. You aren’t sure if they are still “in there” or if they are comfortable or happy. So glad you still visited her because there can be lucid moments and you want to be supportive of her, in all that she is at that time. Thank you for sharing your experience.
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Seems like there are a lot of us experiencing this disease by our relationships. I will continue to visit Gran because I know that on some level she is still with us .She just seems very lost. Thank you for taking the time to read it and comment xxx
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As someone who also lost their grandmother to dementia, I am so, so sorry. It was so hard, and so painful, and I agree. Even when she thought I was a girl scout, or her daughter at times, or thought I was a princess (seriously, sometimes she would courtesy and get so excited) I know what you mean. I’m so sorry. And this was beautifully written.
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Hi Carla, aaaw bless her. My Gran flirts with the male staff at times. It is wonderful but heart breaking at thee same time. Mlotso f hugs for you xxxx thank you for the support xxx
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Hi there Daisy Willows. Thanks for this very touching story. I know it well. My wife passed this past February, in a long-term care home populated about 80% with dementia “patients.”
May I share your story with my online myalzteam.com buddies?
(I took to writing poetry to cope with the stresses. I post them at hwbrycewrites.com, if you’re interested. No matter what stage your loved one is at, I probably have a poem for that in my upcoming book “Chasing a Butterfly.” Forgive me if this is blatant advertising, but I would like to share my poetry with everyone because it does touch people. It comes from that hard place. Thanks for listening.)
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I’m so sorry for your loss. I can’t imagine the pain – well I can imagine – it scares the hell out of me . My own partner is sick and well…..
let me just say that we are getting married in June and life is testing me with the whole sickness and in health vow. I can advertise your book on other social media website like FB and twitter and linked in -if you wish. I don’t mind – just write a small blurb or synopsis. I am glad to help others. I would love you to read this letter that a fellow bloggger friend of mine wrote -her mother became ill in her 40’s but the doctors only diagonsed her with Alzheimer and Dementia in her 50’s. It mad me cry here is the link https://serenasinclair.wordpress.com/2016/03/23/missing-memories/comment-page-1/#comment-385
I will give her the link to your blog. I dont mind you sharing my story but please read Serena’s story too. He words do her mother and this alwful illness so much justice.
YOUR BLOG ADRESS SAYS CAN’T BE FOUND! THE APPROVAL OF USING MINE OR SERENA’S STORY ONLY STANDS IF I CAN CHECK OUT YOUR WEBSITE. I AN’T AUTHORISE THIS AT THIS POINT IN TIME BECAUSE THE LINK YOU USED SAYS NOT FOUND 🙂
Take care
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Hi Daisy. I’m trying to get this out for you. Think I’ve figured it out. Sorry the link turns out to be re an old blog site I abandoned. It is simply http://hwbrycewrites.com/
(can’t see how to make that a link)
I’ll post your url on my facebook and in myalzteam.com site
Thanks for this.
–Herb
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Hi Herb.
I was able to get to your page with this link. I understand so much more now. Thank you for you passion and devotion I’ve liked your FB . I’m having a daughter free night tonight so we are watching movies and chilling. I will have a good look at your blog and what you do asap. THANK YOU!
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You have a beautiful family. I remember the home where we had placed my father in law. It was top notch. Very nice on the inside. However, they almost killed him with their neglect. He went into the hospital and I was the only one who could get him to eat – and it was little snack cakes at that! I told my husband that I refused for him to leave the hospital and go back to the place that neglected him. We found a little place that was nothing nice to look at from the outside. Very basic! But it was clean and they cared. We would visit once a week too. Gosh darn we miss him. Hug your Gran for a little longer the next time you see her. Thank you for bringing attention to this horrible disease.
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It is an abomination of humanity of what goes on in care homes. We did the same for my gran – The place is no 5 * spa but the people care and entertain ans pamper and love the people they care for . I’m shedding a tear for you. Sometimes it is hard to sit with her and time can go by slowly but what you just said about how you miss your father – in law puts it all back in perspective. I still have a Gran to visit every week. I will hug her longer when I see her next .THANK YOU for sharing your experience. I’ve learnt something that I would never have learnt if it were not for your comment. XX
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It is so hard to just sit there. My mother-in-law was a singer when she was younger. She and her two sisters were a trio who had 7 records and toured with the USO. Such a long time ago. lol I was able to find on Youtube where people had downloaded their songs. I would take my tablet when we would visit FIL and pull up their songs and play them for him. It was at a time where he didnt really know us or even himself, but he recognized his wife and her sisters. He would become a little agitated, probably because he could not express himself, but it was so nice to see that he remembered. Even if only for a minute! I am so glad that I can help through my experiences. xoxo
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Yeah, I agree the agitation may just of been your father in law saying I know this music. I remember something about it. Music is a powerful medium for healing and connecting on all levels. XXXX
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A beautiful but emotional post. I have such a soft spot for the elderly having watched and cared for my own family members. They are beautiful people trapped in their condition and it is so sad. Your family is lovely. I love the fact that you, your daughter and your mom visit your gran each week. That is so special. Hugs to you for being you. x
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Aaw Lynne – thanks for the hugs – straight back at ya xxx
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Quite touching. I used to work in nursing, mostly nursing homes, and the occasional Alzheimer’s ward. I even worked at the state mental institution for a week or so. I travelled as a backup for many facilities in the area I lived at the time. It is sad to see loved ones begin to lose it when there are healthy memories still in mind.
People always wonder, is it hereditary? Is it passed down? This to causes a certain amount of unwanted, even unwarranted, fear and pain. I’ve learned it doesn’t have to be troubling, as my dad struggled with a form of dementia from the time I was a small child. He functioned, but we never quite knew in which mode, which seemed to be many.
It is a matter of wanting to change. Dad never really wanted to. He was always controlled by fear of his past. I did, and have never dealt with any of the symptoms my dad and his mother displayed. I’ve had practically no mental or physical illness whatsoever. It did take a break with the past and a change of heart though. 😉
Thanks for sharing. I know it’s tough, but reconciling reality is a part of facing it, and facing it is a step forward in making critical choices that lead to overcoming in this life and the one to come.
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Wow! You have done quite a lot in your life time so far. It has to be hereditary and part environment. Well , my Gran can’t talk and is not present most of the time. It is tough but I can’t run away from the facts. It is what it is 🙂 I sense you believe that you can keep your genetic make up under control by your environment – interesting. I suppose health has to be a persons top priority before they can even think of helping others. Tough judgement call to make but it has kept you healthy . 🙂
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I probably sound like a broken record, but it was a spiritual judgement call. The last time I saw my dad, he was in one of his religious fear moods and was going to convince me to follow his religious inklings by putting a large kitchen knife in my back. That wasn’t happening. I walked away. He would have to keep his religious fear to himself.
I’m a little different in this sense. I don’t believe so much in genetic makeup. It plays a part, yes, but it is more spiritual than physical in nature.
All things within the DNA got there by way of action in regard to spirituality. Just because an ancestor develops diabetes due to poor eating habits doesn’t mean every one down the line has to deal with diabetes. The same way it got there, is the same way it can be removed.
I’ve found this spiritual route tremendously effective. I don’t have to deal with my ancestors issues. I can and I have reversed them time and again.
I do stay very healthy, but that too comes from a spiritual stance and not the other way around. We just mirror who we are inside.
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See my Gran never did stuff like that. I understand wholly now why you had to make that line in the sand. I suspected you believe we are a product of our environment . I suspect their is a lot of research on how the brain operates on a spiritual level – I’m talking the kind of spiritual level you talk about in your blog. The brain is a powerful machine. There are all these statistic saying we don’t even use 10% of our brains. I am sure when a person goes down the path your have forged -something scientific happens in the brain – some chemical is released. The sub conscious and the un conscious are brought forth to our reality and that makes the brain a stronger tool with how we deal with life and illness. Effectively you seem to have taken conscious action and with that comes awareness of what you feed your mind ,body and soul and this is bound to keep you healthier because you are aware 🙂 interesting stuff ART! You always challenge my mind. I love it!
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Incredible Daisy. Thank you for sharing.
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:). Thank you for reading Tikeetha xx
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Reblogged this on and commented:
I am re-blogging this post because it moved me to tears. I lost my grandfather two years ago to Alzheimer’s and it was heartbreaking to watch. More needs to be done for mental health awareness. #makemaypurple
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T U so much x
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This brought me to tears as I watched this happen to my grandfather. He passed two years ago.
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Oh I am so sorry , Stephie xx If I could give you a hug right now I would . So sending a virtual one out. It’s a horrible illness. xx Sorry to bring up bad memories. Thank you for the re blog xxxx
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Thank you 🙂
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Very moving tribute to a lovely woman. Thank you for sharing all the wonderful photos of your family – you’re a handsome bunch! And for shining a light on such tragic conditions – dementia and Alzheimer’s disease. Wishing you peace and love, Meg ❤
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Hi Meg. Thank you. I haven’t done her justice tbh . Thank you for your support of my posts and caring enough to read and comment 🙂 xxx you will never know just how much I appreciate it.
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You are most welcome!
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Its not easy to see the person you love and have known for so long is changed…not knowing who you are at times. It breaks my heart. xoxo
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mmmh. So true……. Thank you for reading. I know it is not exactly a barrel of laugh post. 🙂 sincerely appreciate your support x
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Eclectic composition! Love this tribute!
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THANK YOU! Thank you for taking the time too read about my Gran and commenting too 🙂 You are a gem.
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This post made me cry. So moving xx
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Sorry.. It is a hard post to write thank you so much for reading it. It gives my Gran some dignity that Dementia has taken away from her. I hope others will get this post and care 🙂 She means so much to me. Family, friends and health – the big three values in my life 🙂
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I don’t have much money. But I will make a donation of a 10 quid today to Dementia UK.
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Oh wow! I’m crying now.. THANK YOU.
Bless you! I will catch up with you later – thank you 🙂 LIFE has timed appointments for me today .
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