Nov 19, 2015

Dementia – grieving before they are gone

Watching someone you love slowly withdraw from the pleasures of life, from relationships formed and change from the person you loved (and still love immensely) into all I can describe as a mere shadow of themselves … It may not be the correct terminology/language and I certainly don’t intend to offend, but how else do you explain it when your special someone can no longer have a conversation with you, and are unaware mostly of your presence?

The changes I’m witnessing have impacted me more than I thought possible. I know my grandma and I know her wishes – and this position I see her in today is certainly not one of them. My grandma’s diagnosis with dementia has made me understand that I never really could have imagined what my patients and their families were going through. I know my grandma and I know her wishes – and this position I see her in today is certainly not one of them.

My grandma’s diagnosis with dementia has made me understand that I never really could have imagined what my patients and their families were going through. It has given me a greater understanding of those exact losses, the pain and grief that the people I’ve cared for have previously talked to me about. I can say it’s much worse than I imagined, now that it’s happening to my dear grandma.

I still recall the day the Geriatrician diagnosed my grandma with mixed Vascular Dementia and Alzheimer’s disease. The news wasn’t surprising in hindsight. Never-the-less it was rather confronting and not easy to accept seeing the official words “dementia” scribed in her medical notes.

The last six months has seen a steady decline in her cognition, and the person I’ve always admired and looked up to is now finding it hard to engage with me. I desperately still want to ask for her advice as I always did, but I know she can’t find the words. The glaze over her eyes, symbolic of the wall between us, impacting on my ability to completely understand what she is going through. Some days better than others side-stepping in course with glimmers of hope and every so often flashes of her once previous cheeky self.

My grandma told us she never wanted to get to the stage where she was bed bound in a nursing home.

Sadly, that day has come.

With each decline I prepare myself for what lies ahead. The emotions are hard to fight and I’ve started to acknowledge that in fact I’m grieving before she is gone. Even though she is still alive, I’m grieving the loss of her abilities and independence, the loss of her cognition and the advice she always gave me, loss of hope, the loss of her identity and the many more losses I can feel but can’t explain.

Allowing myself to acknowledge that I’m grieving helped me to understand the strong emotions and intense sadness every time I see her. I’ve taken to blogging as an outlet to express these emotions, which I find helps me express the deep sadness I feel every time I visit her.

Grieving before death has taken place is actually a real thing, which may be something many can relate to after reading this. It’s called anticipatory grief.

Understanding Anticipatory Grief

Most people attribute grief as something that happens after a death, however as I’ve talked about it can often begins before death occurs. It can start from the time we learn that death from an illness or disease will occur at some stage in the not so distant future. It’s natural that we begin to grieve. It’s different from the grief that follows a death although many of the symptoms of regular grief similar- such as sadness, isolation, forgetfulness and depression. Anticipatory grief is just as much about accepting the many losses of the person’s former self as it is about accepting their future death.

The subconscious or conscious thoughts of accepting that death is imminent can bring an overwhelming anxiety and dread. I’ve spoken about the losses I felt for my grandma. Feeling these losses that can in fact make people feel a sense of relief once the person actually dies.

Beware of your feelings and acknowledge if you are going through anticipatory grieving it will not only help you make sense of it, but it might even help relieve your anxieties.

Please share with us your experiences of caring for a loved one, and the anticipatory grief you may be feeling. Or perhaps you have been through a similar experience some time ago and want to share….

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  1. Thank you for this Lauren. My Mum has just passed away, and I was wondering why I can’t cry. Doubtless it will come..probably when I’m least expecting it. Your article means so much to me. Yes, I’d been grieving for a long time. Although she wasn’t diagnosed with dementia, she was leaving us at 89, and wasn’t the person we knew and loved so much. She has left us to carry on with our own lives, knowing that hers was at an end. R.I.P. Violet <3

    1. Thank you Carolyn for your comment and I’m so glad that the article I wrote about my grandma helped you. It’s such a sad process to watch someone you love go through. All the best to you and may Violet R.I.P.
      Lauren Todorovic
      HelloCare Team

  2. What an excellent article, Thankyou Lauren not until you have personally been touched by Dementia do others know of this grief.

  3. I too am experiencing this grief and the agony it brings as I watch my beautiful husband dissapear ..he has Lewy body dementia so along with vascular dementia he also has Parkinson like symptoms and it is heartbreaking to watch his struggles and I cannot do anything to alleviate his suffering…I have recently had to put him in full time care so that adds another whole range of emotions as it certainly wasn’t part of our plan to grow old together, let alone his diagnosis..yes grief is definitely a part of the process prior to their passing, as we watch them slip away on many levels..

    1. Denise, I too am going through the same with my husband. He had to go into care 2yrs ago, I looked after him at home for 3 yrs. it is so so hard. i have made a couple of friends who’s husbands are in care, this helps as they truly understand. Thank you Lauren for your article, how true it is…….a dripping tap and looking at a shell of the person they once were.

  4. I can totally relate to this article. My husband passed in 2013 from Dementia, after 10 years of decline. He was mute for 4 years and bed-bound in a nursing home for the last 3 years. I spent many of those years grieving his loss of self, and our special relationship. We were both Gemini’s and shared the same birthday, and were married for 48 years. He was a professional artist and university art professor. Because of this we have many of his artworks to see every day, which gives us much joy. We helped him continue to draw/paint until his last day. We do not grieve now, but celebrate that he continued to do what he loved. My daughter and I have a Facebook page dedicated to this and often give talks to share this positive aspect of caregiving:

    1. He sounds extremely lucky to have had an amazing family and wife like you Martha. Your page is fantastic.

  5. It’s hard watching your love one change into a person you don’t recognise, my husband was diagnosed with early onset dementia, frontal lobe, Alzheimer’s when he was 60, he is 64 now still lives with me but every day I see little changes, might be they way he gets angry with silly things might be the way he talks like he was younger all his old memories he holds onto, I’m grieving the lost of what should have been for us what the disease has taken from us no loving contact anymore no future as we had planned it’s robbed us of our retirement together our income and us growing old together, I’m getting help with my grief and I would recommend anyone going through this also to reach out

  6. Thanks for giving a name to what I’ve been feeling for several years. My mother is 98 1/2 and lives with my sister in California, while I am across the country. She sleeps most of the time, seldom talks, and doesn’t recognize me anymore. I miss her vibrant personality, her unconditional love and support, her sharp sense of humor. It is difficult to process the emotions I feel, given that she is still alive. I can’t bring myself to go see her.

  7. Your article about your Grandmother is exactly what I am going through with my 100 year old mother. My friends who have lost parents do not understand because she is still alive. I lost my father 30 years ago and that was so much easier. I have a 24 hour caregiver for her in her own home. I visit every other day and always come home exhausted. So hard to see this wonderful woman who no longer has a clue who I am. The worst day of my life was when she told me she has one daughter but she never comes to visit. That daughter is me. It really helps to read stories from people going through this.

  8. Thank you all, it nice to finally see people besides myself have seen what Dementia does to your pride and joy. My name is Melissa and I lost my precious mother to this disease also. I’m still greaving. I lost my mom last November. She was the most wonderful smart woman in the world to me. Always taking care someone else . I took care of her at home for alone time. But there came a time I couldn’t and had to do the unthinkable and put her in a nursing home. I would go visit and try to reminisce with her all the good memories we had and it seems one day she couldn’t talk, walk, one complete a whole sentence. I hold so much anger against this Disease. I miss her everyday!

  9. I want to thank you for explaining what so many of us feel and will feel. I hate what this disease has done to my mother. who all her life has worked hard and loved us to the moon and back. it breaks my heart to see her as she is thank youonce again

    1. That’s exactly how I feel. I wish i could take some of my mother’s pain, she has cancer and was diagnosed with dementia about 10 years ago, and has been in care for 4 years. I hate to see her suffering and fading away, bit by bit.

    1. Thanks Lauren. I was diagnosed 2years ago with Mild Cognitive Impairment, which may or may not lead to Altzheimers. My past memories have all but disappeared, however, I’m still in pretty good shape 🙏! I’d just like to say, please be as you were with your Grandma, She Will notice if you change, believe me! Laugh, joke around, tell her your troubles, smile, tell her how much you love her, everything just like it used to be! God bless you both😏


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