Dementia: Saying Goodbye Too Early

Photo by Paul Moody: Flickr


To my mom.

After my father passed away, my mother seemed to slip into dementia almost immediately. To be honest, at first I had no idea what was going on. I thought it was just grief, that she was just overcome with it, and time would help her to return to her old self. But as the weeks went by it was clear that something else was wrong, something I never saw coming. Many people think that when someone has dementia or Alzheimer's, they just forget things. Well, they do, but they also have personality changes. The person you once knew will act out in ways you can't believe and it is startling to see this.

My dear mother was one of the sweetest people you'd ever meet. She was caring and giving and sensitive. When the dementia set in, she would get very angry at me, and say things she would never have said. Things I knew she didn't mean, as we were very close and knew each other so well we could practically read each others minds. But even though you know they're not themselves, it still hurts. The forgetfulness started out slowly and then got worse, until she sometimes didn't know who I was. I was lucky enough to be living at home so I could take care of her full time. That was a blessing to me that I didn't have to put her in a home. As draining as it was, I was glad to have every minute with her I could and know she was being taken care of properly.

The thing that hurt me the most was her not knowing me, thinking I was a nurse or someone visiting that she didn't recognize. It's like you've lost them, but they are still there physically. It's saying goodbye too early. When my dad was sick, I also was lucky enough to be able to care for him until his last breath. They both passed away at home and I was with them until the end. But with my dad, we got to say our goodbyes. To say all the things you need to and know they heard you. To have that final goodbye is so important.

With my mom, I didn't get to do that. I would tell her things, but realized she wasn't comprehending what I was saying. The only glimmer of hope is that there are times when you feel they might "be there", even if just for a moment. My mom and I always told each other how much we loved one another and so I have to be grateful for that. But I would have loved to have been able to tell her one more time before she was gone and know that she understood me. I talk to her all the time and hope she hears me where she is now. I also always pray that in those last moments, she was "herself" and heard my final goodbye.

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Comments 16 comments

BobbiRant profile image

BobbiRant 5 years ago from New York

Good hub. This is a terrible disease and one that baffles modern science too. It does hurt families very much, even though they tell themselves it's the disease, it hurts them a lot. Thanks for sharing this important personal experience. Bless you.

catgypsy profile image

catgypsy 5 years ago from the South Author

Thanks so much BobbiRant. Thanks for reading my Hub.

Lucky Cats profile image

Lucky Cats 5 years ago from The beautiful Napa Valley, California

Oh, catgypsy, you have my heartfelt sympathy for the loss of your mother, prior to her passing and at her end. What a challenge; a heartbreaking challenge, to deal with loosing her before her passing. My father also had dementia which was worse at times; better during others. He often thought it was years earlier and I was a friend...not his daughter. He lived his last year at my home under my care. It is very hard to see your parents as debilitated, weak and dependent. They both were very fortunate to have you as a daughter; caring and by their sides. Bless you and thank you for this sensitive hub. Kathy

MarloByDesign profile image

MarloByDesign 5 years ago from United States

What a beautiful Hub.

Karanda profile image

Karanda 5 years ago from Australia

What a terrible time for you catgypsy. Take comfort knowing you were able to look after your mother instead of having to send her to a nursing home. Thank you for sharing your story.

catgypsy profile image

catgypsy 5 years ago from the South Author

Lucky Cats, thanks for your comments. Having gone through it with your father, you know what I mean. He was also lucky to have you his last year.

catgypsy profile image

catgypsy 5 years ago from the South Author

Marlo, thank you.

catgypsy profile image

catgypsy 5 years ago from the South Author

Karanda, that is one thing I am so grateful for. Thanks for reading my Hub!

Seeker7 profile image

Seeker7 5 years ago from Fife, Scotland

Hi catgypsy,

what a beautiful hub, even although tinged with sadness over your Mum. I lost my Mum as well quite a few years ago now, but I was able to say goodbye as she didn't have dementia.

However, I've looked after people and their families for many years who have suffered from many forms of dementia. And you are right. It's not just forgetfulness but the swing of personality to something that seems foreign to the person you know and love. For many of my elderly people, it was a complete regression back to childhood, it was frightening for them and their families.

A fellow nurse and good friend - Maureen - looked after her Mum, who had suffered from dementia for many years. When her Mum died, I went to see Maureen to give my sympathy. She was sad, but as she said to me "I lost my Mum years ago when that horrible disease took hold of her." But Maureen suffered further by guilt trips. She was releived to see her Mum at peace at last, but felt guilty about it, as she would wonder if it was the same as wishing her dead. And then she had the bereavement of loosing her physically. It was a terrible time for her and I think your wonderful hub highlights so well the pain that family members suffer as well as the sufferer of dementia. Thank you so much for sharing this hub and I'm sure this will help to support others as well as give insight to people who may not know what is involved.

catgypsy profile image

catgypsy 5 years ago from the South Author

Thank you so much Seeker7. There is definitely that fine guilt line between being glad someone is out of their misery, but feeling like you wanted them to die. But we know that's not the case, so I hope your friend found peace with it. Dementia is slow and sneaky and hard to deal with, but I'm glad you thought my hub might help people.

Minnetonka Twin profile image

Minnetonka Twin 5 years ago from Minnesota

I can't imagine how tough that is to have a parent not remember who you are. I am so glad that you got to be there for both of your parents and they didn't have to go into a home. Your mom is in heaven now and hears everything you say. She is saying "Thanks" and "I love you." God Bless and thanks for sharing your story about this terrible disease.

catgypsy profile image

catgypsy 5 years ago from the South Author

Thanks Minnetonka. I talk to my mom all the time, hoping she can hear me. I like to think she can. Hope all is well with you.

Hyphenbird profile image

Hyphenbird 5 years ago from America-Broken But Still Beautiful

Hi catgypsy. I believe at the moment of crossing over that people know. She knew your love and dedication and knows it even now. Bless you dear one.

catgypsy profile image

catgypsy 5 years ago from the South Author

Hyphenbird, thank you. You just brought tears to my eyes and filled my heart with comfort. Bless you.

leni sands profile image

leni sands 5 years ago from UK

catgypsy - I felt every word. We are currently caring for my partners elderly parents, his Dad is 90 years of age and Mother is 91. Dad's dementia started a number of years ago, very slowly it began to dawn on us - he now has full blown Alzheimers and like your mother, he thinks his wife is the cleaner, cook, housemaid - someone who takes care of him. He is constantly wondering how he came to be here in the house he has shared with his wife for sixty years and thinks he was brought in a van when he was asleep. He thinks his son is the one that brought him here and wonders when he is going home to the house he lived in until he was four years old!! He doesn't even know my partner is his son and is constantly asking his wife who the young people are that come to visit. Young? We are in our early 50's! It is so sad that after a full and activity life such a disease can come along and wipe away all those memories - stealing away such a life. As for his wife, my partners mother, the sadness in her eyes is heartbreaking - 60 years of marriage and to what end! Her face speaks a thousand words without one utterance. All lost - she soldiers on, taking good care of the man she married 'in sickness and in health till death do us part' and says as long as she can take care of him she will.

We try to keep an eye on them both, we check in on them twice daily and telephone them at night before they retire (which is usually about 9 o'clock if she can persuade him to stay up and watch a little TV) otherwise he is after going to bed much earlier then waking up in the middle of the night to begin a new day. Sometimes when he falls asleep in the daytime when he wakes he thinks it is breakfast time again and the day becomes a regular groundhog day.

Thank you for sharing your hub, your memory. You were (and still are) such a caring and loving daughter - your parents were very lucky! Voted up useful, awesome and interesting.

catgypsy profile image

catgypsy 5 years ago from the South Author

Leni, thank you so much. I just read your hub and it reminds me of so many things that went on with my mom. It is such a very heartbreaking disease, especially to the people taking care of them. I know what you are going through and my heart and thoughts are with you and your family.

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