My mother passed away yesterday, finally losing a battle against dementia that lasted more than 14 years.

Sydney October 2015

My mother has had dementia from when she was in her sixties. As her brain slowly and steadily failed her, I watched as she became lost in an increasingly unfamiliar world.

In the very, very early stages, I would wonder why she started to forget putting some ingredients in her cooking. Or why she would almost daily buy a plastic flower from the $2 shop. One day she drove to the shopping centre, then hitch-hiked home saying she couldn’t find the car. We found the car after a long search. Then I started to get phone calls at work from the place where she liked to eat lunch, with the owner saying she wouldn’t leave or had forgotten her purse or house keys. The owner would let my mum peel the peas for the dinner service until someone could collect her.

Things progressed very slowly until one day, a shop 3 kilometres from home called to say she was found tired and dehydrated, wandering the streets on a hot Summer’s day around noon. They found my phone number in her purse.

We were finally able to place her into a dementia day care facility, with a private nurse to collect her each day and supervise her until one of us got home. On rotation, my siblings and I all took it in turns to sleep at her house so she was never alone at any time. Despite this, she became lost in her own home. Urine puddles would appear in the carpet. Tablets she had hidden in her mouth for half an hour would appear randomly around the house. She’d often wake in the middle of the night and just start ripping things up. Other times she would dance and sing like she was a child again. Smells would alert me to rotting food hidden behind furniture – return of hoarding behaviour from when she was a young child in an occupied homeland in the era of World War Two. Her thoughts and speech started to deteriorate. Her incontinence worsened. She became unable to shower herself, brush her teeth or dress herself. I regularly browsed through home care aid brochures and websites. I changed jobs to be closer to her home in the event of an emergency. For as long as possible we wanted to keep her in her own home.

Then the paranoid delusions started and she would become aggressive. The threats against my life were distressing, but deep down I knew them to be harmless. Medications helped for a while but then the apathy and lethargy episodes started. Despite supervision, she would fall repeatedly, first breaking a wrist, then tearing tendons in her arms, and then sustaining a bleed in her brain. Conservative management each time. The medical specialist said she might live another 2 years.

Several months later and she slowly lost more and more of her mobility and could no longer feed herself. Yet other muscles continued to work well. She started biting and hitting her carers – one needing hospital treatment. Soon after, I took her to day care one day and I was asked into the office. Without notice or room for discussion, they told me to collect her at the usual time that day and then not bring her back. That was on her birthday. I had to take 3 weeks leave from work immediately to look after her at home until we found a vacancy at a nursing home.
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That was 4 years ago.

After a hiatus because of work, I took up regular photography again, as a diversion. I’d never taken dedicated street photographs before then.

mum

I have visited her almost daily after work at the nursing home since then, because I didn’t want her to feel alone, or more likely it made me feel better to think that she wasn’t alone, because in her mind she probably was alone. Did you know that the institutionalised elderly become more confused and agitated at night? The screams and yelling in a nursing home can be deafening. Most weeknights I didn’t get home till well after 8pm. She quickly became bed-bound, unable to move, unable to even scratch herself. Her arms and legs started wasting away. She had contractions in her hands, arms, neck and legs. She lost 15 kgs weight over 12 months. She was probably the only resident in the nursing home with all her own teeth – yet these were now all decaying and her gums swollen and bleeding to the touch. Her jaw was chronically dislocated and arthritic and she was on a special soft diet. She had a pressure sore which fortunately healed. Eye infections were a common occurrence. She survived several gastroenteritis and influenza outbreaks in the nursing home.

She started to eat significantly less several weeks ago, then started to refuse occasional feeds. Her bowel activity was decreasing and she often lost consciousness for hours at a time. I went to visit her two weekends ago and she had projectile green bilious vomitting. We took her to hospital where she was diagnosed with bowel obstruction. She may even have aspirated some of the vomit. She was dehydrated with failing kidneys.

There was no quality of life now although there is always quality of care. Appreciating the gravity of the situation, there was only one choice to be made. We had her placed onto regular morphine and sedation. The end thankfully came one week later. She was 76 years young.

This is the cruelty of Dementia, from my personal experience. It is an all consuming disease that doesn’t just lead to death. It slowly destroys life. It was her disease but it affected the entire family.

Dementia incidence and prevalence is increasing in Australia and world-wide.

Thank you if you read this far. There is no need to press the like button, or make a comment unless you feel a strong need to.

This will be my last post for a while.

Etcetera Etcetera Etcetera

The Cruelty of Dementia.

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180 thoughts on “The Cruelty of Dementia.

  1. Tej says:

    LD,
    I feel for your loss but can sense that your mother is in a better place. What a credit to her to have brought up children that have grown into men with your character and values. This is the essence of compassion and the very fabric of society. I am honored to know you and wish you and your family comfort in this time of mourning.

  2. Very sorry to hear of your loss, Draco…I know all too well the cruelty of dementia, and you ‘lose’ the person you knew in stages, well before their death…. May your mum rest in peace, and you look after yourself.

  3. Oh Draco I am so sorry to hear all this. No one can never prepare you for such a loss; also if it was after long years of pain and damage. However, take comfort my dear friend in knowing that your Mom is now resting in peace without suffering anymore, she is in the arms of our Lord. My deepest condolences to you and your family. I will miss you here because I like your work very much. But you need rest and time for yourself now…we will be all here waiting for your come back! Sending you Love and Light and a hug…be well and keep taking beautiful photos. ❤ Carolina

  4. What a sad and nightmarish end for your mom and all who loved her. Bless you for your sweet, kind and patient care. Mother Teresa would say when you do these thing to the least of these you are doing it to Jesus. This was her mission and great joy in life: sheltering and caring for the orphans, the starving poor, the abandoned, the ill and discards from the streets of Calcutta. Remember your mom for who she was to you in her right mind. May your consolation be you live a no regrets life and have truly loved as God loves you: unwavering, tenderly, 100% in. It will take time to recoup from this huge ordeal and now your loss. There is a huge relief tinged with some sense of guilt perhaps that you’re glad your mom is gone. Just place her and your life and future in the hands of our Faithful Creator to do what is right. I pray the Lord fills your heart and soul and mind and body with His rest and peace. Blessings, Jan

  5. My grandmother passed away from Alzheimers. She lived with my aunt and on those summer holiday visits, I could only imagine how hard it must have been… for both of them. I never knew her well enough before the disease got her so I never got a chance to miss her… I just miss not having the chance to know her as everyone else did.

    إِنَّا للهِ وَإِنَّـا إِلَيْهِ رَاجِعونَ From God we come and to God we return.

  6. My thought are with you as I fear I will be heading down a similar path with my parents…the insidiousness of this disease is the toll it takes on the happy memories of the person who is now lost to you. Take care of yourself now.

  7. I feel a strong need to make a comment..I have always been afraid of a situation like this…It is strange… It is not like suffering a pain…The person sometimes is not conscient but I think that other times , when they are “awake”, they must feel terrorized…Like being in a closed and dark room without knowing where is the door…
    Then, that suffering goes to the family…I think you have done everything one person can do for a loved one… I think you were very right leaving her to go…And I think you need a lot of rest now… Take a lot of care…

  8. I’m so very sorry for you loss and for what you’ve had to witness and endure as your mother declined. You are obviously a good son, one that she was lucky to give birth to and to have loving her all these years. It sounds like the gift back to you beyond the obvious gift of life was the photography that you’ve turned to. That gift then also goes out to all of us out here who follow you….a connection from your dear mother to all of us…through you. May you find peace as you navigate through this most difficult time.

  9. I’m so sorry to hear about your heartbreak. You are a good son. Thank you for sharing this part of you. It gives your photos – which are so full of vibrant humanity – even more depth. Rest and be well, kind man.

  10. I am deeply sorry your mother passed away. I do understand how you feel; I too lost my mother to dementia 2 years ago. Watching the disease slowly rob her of her life was heart breaking, so when she finally passed I was grateful knowing she is in better place remembering the joys of a better life she once had.
    Sending positive thoughts your way.

  11. I can’t press like. Dementia is a cruel disease, taking away the person you love long before they are taken away. You have been a good son. Now it is time for you to grieve, take time out for yourself and heal. You have suffered too. Thank you for sharing this, however painful it has been for you and the family, people should realise what a horrible insidious disease it is.
    Jude xx

    • There is no cure for dementia, and the medications currently available do little to slow the disease, in my opinion. Soon after my mother entered the nursing home, we made the decision to cease the dementia medications she was on.
      Thank you, Jude.

  12. The cruelty is unbearable for you, your mother, and your siblings. So much you had to go through, you have made many, many remarkable posts with beautiful photos adding song lyrics and thoughtful/insightful words to entertain us. Your have given us cheerful and encouraging comments and responses; yet you need support the most. How you manage to do it is beyond me… Our blog community will not be the same without you, we will miss you until you are come back. Do take care of yourself, Dragon.
    Thank you for writing this post. No need to respond my comment. See you later.

  13. I know this is one of the saddest experiences a family can live!

    Dementia is a cruel illness , not only for those who are suffering from it , but also , and even more, for all those who take care of the patient.
    Thank you for having the courage of sharing your tragedy with us , your post is so moving and reminds us of the afflictions of life…
    I wish you can recover soon from this terrible experience!

  14. M-R says:

    LD … You break my heart.
    It doesn’t break for your mother, because she knew almost nothing of what was happening to her – the one bearable thing about dementia.
    It breaks for you because your suffering is terrible.

    • Thank you, M-R. Medications don’t really work, they just treat symptoms, masking the decline which goes on unabated. It is terrible to watch, as with any terminal illness but it goes on for so long.

  15. Hi Draco, so sorry for your loss.
    And great words, really. This reminds me of a time a few years ago, as I had for the first time some experience with people with dementia. At the same I time I had little children at home. There’s a successful and imo great book from an austrian writer. He wrote a book about his father’s last years, but first an essay, translated “The old King in his exile.”
    One sentence he wrote in his essay was (I try to translate):
    “It is often said, people suffering from dementia are like little children – hardly a word about who renounces this metaphor; and that’s annoying.
    Because you can not possibly regress to a child, because it belongs to the essence of the child, that it develops forward. Children acquire skills, people with dementia lose skills. Dealing with children enhances their awareness of progress, dealing with dementia patients to look for loss. The truth is that age does not return anything, it’s a skating rink, and the biggest concern, which can make it a, is that it takes too long”
    (Original author+title: Arno Geiger, “Der König in seinem Exil”.)
    Take the time you need.
    Take care.
    AP

    • Thank you. To be a child again is to have a future – not so for dementia patients. More likely they don’t regress to being a child but rather lose their adulthood, and become dependent again upon others.

  16. Lignum, I know this all too well, and I am so very sorry for your loss.
    My mom was in the same state for 17 years before she passed away.
    Please know that my thoughts and prayers are with you.
    May the good memories you have of your mom, bring you comfort.

  17. May you have some peace now, as your Mother has. I lost mine when she 50…. just try to remember the good times …..my thoughts go out to you and your family, take care.

  18. I am sorry for the pain and suffering your mother and you have felt. No words I say can ease that pain however know that she is no longer suffering, you did all she could and I believe that deep down, near the end, the one thing that remains burning in the mind is the knowledge of a family’s love

  19. I have many emotions when reading this. First I am so sorry for your loss. Although your mother’s quality of life was progressively deteriorating and she is now at peace the loss of your mother is very difficult. I lost my mother this past February.

    I have a relative who was diagnosed with frontal lobe dementia last summer. She is 62. While reading this many of what you discussed is now happening to her. It is so so sad. This woman had a PHD and is now slowly failing at such a young age. They gave her five years last year when they diagnosed her. Her husband so far has kept her at home but it is becoming more and more difficult for both of them. The strain and resentment I see in both of them grows with each passing day.

    I don’t think there is anything more difficult for all the caregivers, meaning family and the Individual involved. Such a horrible disease.

    I am thinking of you and hope you only focus on the good and fond memories before your mother got sick and not on the person she was in the end as truly I’m sure that was not her and how she would want to be remembered!

    • Thank you, Liz. The loss is difficult although we have been prepared for it for a while. Still, the end was hard to bear and watch as the final days approached.

      Everyone thought she was too young to get dementia, yet as you have noted with your own relative, this is not uncommon. There is a lot of frustration in the early days, but a point is eventually reached when the anger and frustration of the sufferer subsides into apathy or is forgotten, and resentment from the carers turns to a feeling of guilt and regret. It is not uncommon for the decline to be drawn out as it was for my mother, sadly.

  20. I’m so very sorry to hear. My dad is 94 and suffers from dementia. He used to be very switched on and in great physical shape until dementia hit him. The decline is massive and fast in his case. My thoughts are with you.

  21. my parents in law went a similar path. Both of them were considered to suffer from the alzheimer disease, a certain form of dementia. very, very sad thing. I feel with you in both emotions: the lost and the relief, that suffering is over for her.

  22. Dear Draco such a sad and brave post for you to share with us. It breaks my heart to think of all the years you and your family have struggled with such a terrible decline and that you still shared so much of your artistic photography with us. Thank you for letting us know why you won’t be with us for a while. I will miss your inimitable views of people doing what people do and I will look forward to your return when you are ready to join us again.

    • Thank you. It was a very slow process, which accelerated greatly towards the end. I’d always thought the best we could hope for was for her to pass away suddenly in her sleep.

  23. BookOfBokeh says:

    I too have stood over a parent listening to the rattling breath of a body shutting down, watching sadly as a once vibrant and strong personality waited to die. You find yourself, out of love wishing it would come sooner rather than later and urge them on with gentle suggestions of, “It’s OK. Let go.”

    You told your mother’s, and your, story with great gentleness and honesty. Thank you. It was very, very moving.

  24. I am so sorry about your loss; my dad passed away last month, and I’m still trying to find my place in a parent-less world. All of my good thoughts and best wishes are with you, and I look forward to your return to the blog.

    Your friend,
    Melinda

    • Thank you, Melinda. I appreciate your kind thoughts. I remember your series about selling your parents’ possessions. I wondered when that would happen to me and it is harder than it sounds. My sympathies for the recent loss of your father – I haven’t been in touch much with blogs I follow over the last few weeks/months. I guess we’re both adult orphans now.

  25. My father died last week. He was 86. Reading your painful account of your mother’s descent suggests to me that I should be grateful that, at least, my father’s suffering was brief. I don’t know if that is callous or just honest. I am sorry for your loss, as I am sorry for mine. I am terribly sad, but also glad that the pain is over for them.

  26. Thank you for sharing your world with us. I too watched my Grandma who stayed with us in our home until she passed. Spot on regarding slowly destroying life.

  27. My condolences to you and your family. I’m terribly sorry for your loss. You don’t have to reply to my comment, I understand. We shall see you when you’re ready to come back. In the meantime, take care and God Bless.

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  29. Lignum, you are not alone in your suffering. My mother went through the same disease and I know your pain. No words can comfort you or replace her, but I do wish you love and peace. Her journey is complete, take care of yourself now.

  30. Dear Draco,

    My sincere condolences to you and your family. I am saddened to hear of the loss of your mother, not only in her passing, but also in who she was as the dementia progressed.

    There’s nothing I can say to make things any easier for you and your family right now. Though I only know you through your blog, I am here for you if you need to get things off your mind or just for some banter.

    I hope you are looked after and surrounded by loved ones during this time.

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  32. I could only hope that my son would do as much for me, but I so wish that he never has to. It leaches all the joy out of life. Thank you for sharing. Take care of yourself, Draco.

  33. That’s a very distressing account of all your poor mother and you and your family have been through, but I appreciate you taking the time explain these things, so many people shy away from even talking about the horrors of life, and there does seem to a lot of horrors.

    You have my total sympathy and also understanding of what suffering of this kind is like to endure. Both my parents have passed away some years ago now, it was horribly distressing time for me and my brother during their illnesses. My mother had chronic rheumatoid arthritis and later developed a brain tumour. All that combined with some catastrophic care and inappropriate medication, and doctors who didn’t seem to care at all, it was an eye opening and devastating time. My mother also lost herself, lost her true personality, although a lot of that was due to drugs. I was devastated to lose my father only a few years later, but relived his illness didn’t go on for years. So I can to some extent understand how you feel in all this. You must be mentally exhausted?!!

    I found when my mother died it was therapeutic to do things I’d never done before. I occupied myself with all kinds of day trips, took up writing, it made me realise how I hadn’t really been living before. When my father died I got into art and discovered it was amazingly relaxing, definitely helped heal my mind. It takes a while for the trauma to leave though. The memories seem to remain, but they are far less painful years later.

    I really hope you can find some peace and also enjoyment in life again very soon. Glad to hear you are taking a break, you certainly need one, but will be pleased to see you return.

    And thanks so much for the advice on the cameras, very much appreciated, I think I’m near to finding the right one. I hope this coming year is a good one for you, in ways you might not expect.

    • Thank you for the kind thoughts, Suzy. I ‘m very sorry to hear what you went through as well. I guess we’d all like to pass away quietly in our sleep after a long life, but the reality for most is quite different, and this has flow-on effects to our families.
      I necessarily had a highly structured life before my mum’s passing, and now a lot of time has been freed up. Now to work out how to use it best, as you learnt to do.

      I’m glad to have been of help in your camera search.

    • Caregiver extraordinaire? No. Going to a nursing home after work is almost nothing compared to giving care at home, as you would know. You’re the extraordinary one, Sheri.
      Since my mum’s passing, a lot of the structure I built into my life has disappeared. I followed rigid timetables which no longer are needed. I’m learning to use that free time again. It’s a strange feeling.

      • Don’t sell yourself short, my friend. Do you know how many individuals placed in nursing homes never have one visitor from a family member or anyone else.
        I understand the strange feeling. It will likely be there for a good long time. Know you did the right thing by visiting your mother, she knew you loved her by your being with her when you didn’t have to and that says volumns. Be kind to yourself.

        • Thank you very much, Sheri. Yes, a few of the residents in my mother’s nursing home did not get any visitors in the time my mother was there. A sad situation.

  34. She always knew, at some level, that you were there for her. I’m so sorry for your loss and for what both you and your Mother went through. You are a good person. Take good care of yourself,
    Elisa

  35. Such a powerful and sad post ~ but also one that shows a love and tenderness of a son’s love for his mom. I think you brought a lot of hearts with you with your words and wish you the best during this time. Life, for as beautiful as it can be – will always contain such sadness. Take care.

  36. Dear Draco,
    thanks for sharing! It was especially interesting for me as I deliver a long lecture and run two workshops in Switzerland next week. It’s in one of the most advanced (private) Alzheimer clinic in Europe (Sonnweid in Wetzikon near Zürich). The lecture is about incontinence and dementia – it’s symbolism and how psychoanalysis sees it. Unfortunately it’s in German, otherwise I would have send it to you.
    All the best from Merry Old England
    Klausbernd

  37. Thank you for this informative post on dementia. It was very moving and emotional for me. I read everything to the very last end. You truly loved and cared for your mum and that’s what really matters. In a way I’m glad she can finally rest in peace. My sincere and heartfelt condolences on the loss of your dear mum.
    May her soul rest in eternal peace. Amen!

  38. I feel the pain you went through while your mom was going through this with you and your family. Something like this is never one person’s disease it affects everyone that is involved. You cared and loved your mom and in the end that is all that matters. She knew you were in there in her own little way.It is good her pain is over now.

  39. Draco, I have just now seen your post and am so saddened to learn of your mom’s long decline and passing. I could feel your pain and despair through your heartfelt words. The love and support and compassion you and your siblings provided your mom over the years was a wonderful gift to her, and certainly, knowing you did everything you could for her is a source of comfort now that she is gone. Thank you for sharing your story. Sadly, it’s one many of us are becoming or will become all to familiar with.

    I can only assume one of the pair of hands in the photo is your mom’s. It sums up so poignantly the journey you and she were on and brought tears to my eyes. A treasured image indeed.

    All the best to you, Draco.

  40. This post touched me deeply. My aunt has Alzheimer’s and I can relate to much of what you said. It is very very hard to watch someone you love disappear before your eyes, and that is after they have become a total stranger. Thanks for sharing your experience and hugs from my heart to yours on your loss.

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