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Diamonds to Dementia: Part 1 — 29 Comments

  1. We lost my mom last year. Dementia is a tough journey. Fortunately, mom was a gentle soul and only got angry a couple of times. As you know, they don’t lose everything at once, it’s a slow whittle of memories and abilities. My siblings and I laughed with mom about a lot of things. We cried together too.
    I am dedicating the novella I’m writing to her. It is a light touch on this heavy subject because it’s tucked into a cozy mystery. I think she would have liked it. It has some of the ‘events’ we laughed about. I hope you hold on to the happy times you had with your mom and family. I know they are precious.

  2. Wow!
    Very moving!
    My dad is suffering from dementia and dealing with him is very difficult.
    Congrats on writing about it.
    Rob Feller

  3. Cynthia,
    Hi!
    Thank you for your kind email.
    I’ll take some time off for good health.
    Best,
    Rob Feller

  4. We’re living in the throes of my father-in law’s dementia. A tragic end to a beautiful life, but we’ve no clue when the end will come, nor how to hope for the day. I needn’t tell you.

    I’m listening to my weary husband snore. I’ve a slight fever. Just responded to a dear friend’s notice that her father is fading, so she’ll be unable to attend the funeral of our other friend’s mother, who passed away with Alzheimer’s days ago. We’re in our early 60s. My parents moved into their own cottage on our grounds nine years ago and we lost him, at age 96, in April. This is not where we thought we’d be at this time of life! We’ve cancelled the trips.

    But “it is what it is” and so we live and love and learn anyway. And we laugh. Have to! So, despite it all, I have to share this bit of humor.

    While visiting my Father-in-law yesterday, he told me that he’d had a “delumptious lunch!”
    “Great!! Tell me!
    What did you eat?”
    As matter-of-factly as if speaking of a Rueben or Club, he said,
    “I enjoyed the BEST Dilemma Sandwich!”
    Then he asked if I’d ever tried one!
    “Yes sir! I take a little bite of one every day!”

    We are the sandwich generation, aren’t we? By midsummer we’ll be grandparents to 5 babies under 3 and somehow we manage to be fully and blissfully present with them and their dear parents.

    We’ve had to let go of small stuff and put mothballs in the dream drawer, but we’re living in the moment and hopefully teaching through osmosis that this is what love looks like.

    Your story is heartening!! I’ll buy the book & I thank you in advance for your grace and courage in sharing this poignant experience.

    Keep that image of the dilemma sandwich, elders crushing one end with their walkers. Children, fresh, at the other, pushing prams against us. We laugh to think of ourselves as the meat and gooey stuff oozing out the middle. Family feast, not easy, but still a blessing. Still, and always that.

    Best wishes!
    Vivienne Nichols

  5. This article is very good. My husband was just diagnosed with Alzeimer’s. I only have the part 1 article. Where can I find the other one?
    Kathy

  6. I would love to chat to you more on this subject. How do I follow your blog posts as it has no follow button on top like wordpress.
    My Mom passed with Alzeihemers and now I work as a carer for the elderly with dementia.
    Hoping we can connect.

  7. We are going through this with my mother. I wrote a piece about having breakfast with my folks, and how my dad was caring for my mom. You can read it on Facebook here: http://on.fb.me/1HiDfwl

  8. My mother died from dementia and other related illnesses last week. This article hits home. I admire your strength and courage in writing this.

  9. I imagine your short story above touches everyone who reads it. Thank you for sharing. Life can be painful and I’m thankful you remember the times you laughed.

  10. Cynthia-
    Thank you for writing such an insightful book on life with the family of an alzheimers patient. My husband and I take care of my father-in-law who is in his 7th year with this horrid disease. Neither my husband’s mom nor siblings participate because they “can’t handle it”, so it has become our sole responsibility. Reading your book helped ease the resentment i was carrying towards them for not visiting or sharing in the responsibilities. i also learned that i am a lot stronger than i thought. i hope writing this book helped you as much as it did me.

  11. I always find it helpful to read other people’s stories. I’m coming into my second year of being a Care Partner for my wife who has mixed dementia following stroke. I haven’t seen your book yet but it’s now on my reading list: thanks for your writing.

  12. Please read “Ma is back” by Brad Pittnan!! It is amazing what this non-medical person discovered with much effort. Since the book, some of it has been shown to have some scientific basis…. It is fascinating..

  13. Just found all this today! Water in the desert. Husband (vet/vet pathologist…so bright) had a Grand Mal 4 years ago. Within a month he started turning on me. Had never done that before. He’s had so many absence seizures, and at least 4 Grand Mals. Years before he had had several concussions. Missed a year of work as Vet Path. 4 years ago, our whole life changed. A year ago he left me. It’s been a year of hell and blessings for me. A mixture. But, I have not had time to even know what ‘fun’ is. Had to move. Nov 17/15 storm major damage to my ‘new’home. Everything off to storage, then restoration. Everything came back in a landslide. Like 2 moves in 1 year. Husband cares, but avoids me completely. We were married 11 years. He’s going for flat-out divorce, and has been malicious, and mischievous. Pulled a real stunt with my income tax returns. Took a couple of years to get that $ back. We had been so close. Did not see this coming years ago. One more thing, he’s still driving inspite of the seizures and the many petit mals.(Even had an unexplained car accident. I have no doubt what happened.) His neurologist says he hates to take his DL away. A neighbour of mine has a husband with absence seizures, who almost got her and grandchild killed at an intersection 2 wks ago. She’s gone to her daughters for break. Nerves are shot. So are mine. Hit a major depression in Dec. One step away from psych ward, dr. said. (He’s pulled too many cunning stunts.) On meds now. Doing okay. On overload and overwhelm right now until renos are complete. (I had to move, our home was sold…next door.)

  14. I oversaw my mother’s Dementia journey for 8 years. A strong independent woman who was a widow from age 49, my mother could not and did not believe anything was wrong with her. She did well until about 88 (before that I saw her confusion from out of state as meanness as my siblings did also) from not understanding the disease. I lost my mother 2 yrs ago and miss her very much as she was a very loving mother and taught me many things, most of all about Jesus Christ. I am still healing from that and other journeys but I have much compassion for those suffering and those who are attempting to care for those who have these Brain diseases. She lived until 96. I will probably have the same issues as she and her mother, but as a patient with chronic pain and heart disease, I do not anticipate living so long…that’s OK…Heaven awaits!

  15. I work in a memory care center with Alheimers, Parkinson’s, Dementia, and of course other issues like cancer etc. It is my true love and passion to be there especially for those patients who never have family visit them. They are truly special people and yes the work is extremely physically demanding at times but the rewards and hugs are well worth it. I try to make family and patients smile as this is such a trying time in their lives. I’m sure your book will help so many feel not so alone. 😀

  16. Just lost my own mother two weeks ago it’s hard cos u think u could do more but u slowly come to realise You can.only.help as.far as you are .allowed.to

  17. My husband started developing early onset Alzheimer’s in his late forties, when our daughter was 12. Five years after diagnosis he doesn’t recognise his daughter or me … I’ve just had a novel published in Australia for teenagers struggling with their parent’s diagnosis – https://julialawrinson.com.au/julias-books/for-teenagers/before-you-forget/ Thank you for writing your book. The world needs more understanding of the terrible stress this puts on families.

  18. My mother passed away 3 years ago from a heart attack caused by dementia. We were lucky she stll knew us when she passed and could still participate in some activities, although going to a store became an ad adventure, she would shop lift and so you had to watch her carefully. It was like a game to her. One of the hardest decisions is how to deal with with death. My mother had a strict DNR, which she insisted on. While my mother in law also a dementia victim was probably kept alive way pass her time, because those around her would not let go. I don’t know which is right, but it is a conversation that you need to have

  19. My mother in law lived with us for years with dementia. It is sad the toll it takes on a relationship you have to hang on to a sense of humour to survive. Drinking my morning coffee my MA in law walked past me in her dressing gown with every piece of jewelry on which was considerable. (She was on her way to the shower) She reported me to MY Doctor for holding her prisoner….and starving her. My Dr rang and urged me to think about relocating her as she actually meant me harm. As I hung up the phone from My Dr she came into the room and asked me if I could trim and perm her hair with a deep breath and a word to my husband I excused myself to go for a cool off walk.Just some of the moments that dementia bring into your life you never think you will face in your lifetime. I believe the people who need care are the carers as in many cases the damage to them and their relationships is often permanent. I admire anyone who can write about this subject as it helps the people who are caring for a family member who can no longer function on a day to day basis. I wish them luck and a sense of humour.

  20. Thank you for this blog. My mom now has Vascular Dementia and Dad died in 96 with Early-onset Dementia alz type. I am 55 and have been told I have early onset. My dad was 58 and I am 55.

  21. I’m on year 8 with my mom. Relocated back home after promising NEVER to return because of her. GOD has a way of changing your mind. This is an awful disease. The same strong woman who I THOUGHT made my life miserable is now childlike and withering away and needing help.

  22. Cynthia thanks so much for sharing your story. I completely understand the complexity as a carer myself for my 78 year old mum who has mixed dementia. She’s living with me now and that is a joy but it’s the behaviours of other siblings that are causing us both a great deal of stress and heartache.

  23. I see this everyday as a worker in long term care. It is devestating to the families. We have a couple and the husband is the one with dementia. She thinks it is just anger. I try to explain it’s not. But to often the spouse doesn’t understand.

  24. My husband passed of Lewy body- Parkinson’s//Alzheimer’s he had it 12 years. So hard to see him deteriorate. He has been gone 7 yrs now and I still miss him so. I was his sole caregiver. The last 3 yrs were extremely difficult. I had to pray real hard to make it thru each day. I loved him so much, we were married just short of 52 yrs. I still long so much to see and hear him again. He was such a funny, kind, loving man. He loved to tell jokes and the last 2 yrs of his life he no longer rememberd them, that was real hard for him. My children lived a distance from me so they weren’t so much aware of how bad it was getting till he had a stroke and couldn’t live at home anymore. This is such a terrible disease. All the Alzheimer’s association did was send some print material. They hopefully are doing more to help and or refer those who need help to someone who will help assist you . Most medical insurance company’s do not reimburse all the finances you spend in their care and it is extremely difficult to find assisted living for men, no one wants to take them.

  25. My father also has Vascular Dementia. He retired at 50 due to heart problems and so has been retired for 33 years. During this time he has had a stroke and was knocked down by a bin man (refuse truck). He had mobility issues and also skin cancer. His type of dementia is one where the language goes first (speaking). This has been apparent for some time in his speech but my dad took great joy in Calligraphy (learnt when he had to teach himself to write again after the stroke), but that has gone and so has reading.

    Everybody says that dementia is a terrible disease, and I think that’s true for the number 1 carer, but that is not entirely my experience. My father has always been a deeply unhappy and volatile man. As a child I found his absolutely terrifying. Now he looks at the world in wonder and has moments of joy, and does very funny impressions of Cecil Beaton talking to the Queen. He decides he doesn’t like people who are bores and so has taken against his former best friend, he won’t let one of my brothers in the house and told a cousin who turned up four hours late exactly what he thought of her. He far prefers dogs to people ( we were never allowed a dog) and talks to them rather than their owners. He was asked to draw pictures of triangles at Memory Clinic but decided they looked like bishop’s mitres and so he drew faces underneath them all. (They wrote in his report that he was uncooperative, but if you can’t amuse yourself…) He wants the Christmas tree up even though it is July. He doesn’t know my name but he says ‘Eight’ when he sees me and I know that he is talking about the eight books I have written. He is obsessed with kingfishers. He spends hours peeling a piece of fruit so that the peel comes off in in a single piece and this makes him very happy. He has spent the past two years copying out long religious tracts obsessively and cutting stories out of the newspapers. Now he cannot do either of those things he is sanding all of the furniture down and doing very strange garden projects, like bubble-wrapping the cherry trees. Six months ago I took him out to lunch. He could not longer cope in a restaurant and a restaurant could no longer cope with him. I am not sure what his reality is. I can only hope it is not too terrible.

    Dad grew up in care after his mother died when he was one and a half, and then his four-year old sister died in care, so he has always said that he will never go into a care home. Mum wants make this possible but she turns 80 next week and is finding Dad impossible to manage. When I was last there, he used a 6-month supply of bug killer in the 5 minutes her back was turned, damaged the paintwork in a room she has just had decorated, got compost all over his best trousers and dug up her favourite plant from the garden insisting that it was a weed. She says that other people complain that their partners with dementia just sit there staring at the telly, and she says to me in tears, ‘Why can’t he do that’ and when I said to her that I didn’t think she meant that, she disagreed and said that she did. Mum has her own health issues. She was told to ask for help when the time was right but now she has asked for help and has been told that there are very few dementia nurses and that the waiting list is 2 years. It is her I feel sorry for. I do what I can but I have never had a good relationship with either parent and it is strange for me to be so involved in their lives, but I am the only one who can do it because I live close by and don’t have a full-time job.

    My very best to all of you in this thread.

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