BlogHer - dementia - Comments

Alzheimer's, Dementia, CJD, and Cancer

MLOKnitting — Sat, 14 Nov 2009 23:32:04 -0600

My grandfather died physically healthy but a victim of Alzheimer's. My family made the same mistake as most - thinking that home was the best place for him. Decline tends to be much slower in well-structured facilities. It is heart-breaking to see so many families make that same mistake and hasten the decline through denial of the patient's needs.

Sadly, one of the greatest satirists of our time, Terry Pratchett, has early onset Alzheimer's and his latest book Unseen Academicals shows where some of his thinking processes have weakened. It doesn't have the sharpness of his previous books. It is truly one of the saddest things to see.

One of the things about dementia is that it also includes most prion diseases. They are on the uptick. I have known 3 people who have died of CJD - and I live in Michigan, not the UK. The decline is so fast that there is nothing that can be done. I know that some of the same drugs being used for Alzheimer's are being used to treat CJD. Sadly, both can only be diagnosed via autopsy.

The mention of cancer by several commenters has me wondering if there might be an effect from chemotherapy drugs that may trigger dementia in old age - since "fuzzy thinking" is part and parcel of what is now termed "chemo brain." My grandfather was a coal miner and had been exposed to many hazardous materials. I wonder how many Alzheimer's victims had environmental triggers that we don't know about.

Sorry if this seems a bit scattered, but the realities of this disease are devastating and even when faced with it most families do not cope well. Most prefer to deny its realities instead of accepting what is necessary for the patient.

MLO / Melissa

Books, Movies, Games, Ovarian Cancer, and Life in General at http://www.mloknitting.com/

Thanks!

Willful Woman — Sat, 14 Nov 2009 14:48:30 -0600

Thank you for writing on this. I'm always interested in diseases that affect the entire family and I can't think of another one that does in quite the same way that Alzheimer's does. I'm especially interested in women's health and this is quite a fascinating intersection of the two. Women, so often being the main repository for family memory and tradition, have so much responsibility (at times a joy, sometimes a burden) in that sense. What happens to the family when the wife/mother/grandmother loses her memories? Who steps up and how?

Always a... Willful Woman @ www.besidethestonewall.com Visitors always welcome! Bring your stories to share!

My Mom

SpinDiva — Tue, 10 Nov 2009 18:44:00 -0600

It has been a sad process and for me even harder because I live so far away from home. My mom is in the Dominican Republic and my dad, along with another family member, help keep her safe from herself. She used to love to clean her house, top to bottom with a hose; she loved to cook for my dad; she loved to entertain; and mostly she loved being with her grandkids...my kids. Now she only really remembers my two oldest. She has been on Aricept for a few years and it has helped to slow down the effect and her memory is pretty much the same, her mood is more manageable; but we know that there is no cure and while she may live another 10 or 15 years, her memory will continue to deteriorate and that makes me very sad. I will see her in a few months...can't wait!

Thanks for raising awareness to this devastating mystery.

http://www.familyinshape.typepad.com

Actually that is interesting

redheadedjen — Tue, 10 Nov 2009 13:33:18 -0600

Actually that is interesting because my Mom is very concerned about getting breast cancer meanwhile her brain is dying.

family history

DarryleP — Tue, 10 Nov 2009 12:26:34 -0600

When I was battling breast cancer, I used to joke and say my goal was to live long enough to get Alzheimer's, since I had watched my father and grandmother succumb to it. Now that I've survived 14 years, and there's still no cure, Alzheimer's is no joke.

http://blog.darrylepollack.com/2009/05/memories-like-mine/

http://blog.darrylepollack.com/

I agree...

Catherine Morgan — Tue, 10 Nov 2009 10:12:21 -0600

I agree that Alzheimer's has become a catch all for diseases causing demintia. The truth is, Alzheimer's can only be 100% confirmed from an autopsy.

I was told that my gradmother had Alzehimer's over 15 years ago, after she died from bladder cancer. She clearly suffered with some form of dementia, but I've always questioned the Alzehimer's diagnosis. Unfortunitally, due to her age and knowledge that she passed from bladder cancer, there was never an autopsy.

Thanks for sharing your story Jen.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

Thanks for sharing your story...

Catherine Morgan — Tue, 10 Nov 2009 10:00:44 -0600

Thanks for sharing your story. I think it is wonderful that you were able to chronicle those five years in words, and that some day your child will be able to benefit from those words.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

Dementia

redheadedjen — Tue, 10 Nov 2009 09:51:52 -0600

Alzheimers is only one form of dementia. My mother suffers from what primarily is Front Temporal Dementia, which doctors know very little about. She is 61 and has had the disease for 10 years. In my blog, I talk about my Mother, among other things.

Alzheimer's seems to be the catch all disease when it may be another form of dementia.

Thanks Virginia.

Catherine Morgan — Tue, 10 Nov 2009 09:50:09 -0600

Thanks for the links Virginia...I'll check them out.

Contributing Editor Catherine Morgan
at Catherine-Morgan.com and Women4Hope

It is refreshing to see people talking about Alzheimer's

erstellen — Tue, 10 Nov 2009 08:29:31 -0600

In 2003 I left my job and life in Los Angeles to move south and take care of my Grandmother as she battled Alzheimer's. Being her caregiver completely changed and then defined me as a person. She passed away a month ago and grieving has consumed me totally. Which is weird because this disease is associated with a "long goodbye". And even though I said goodbye to a part of my Grandmother daily for years and years, when she did pass away I began to really mourn the loss of her that I never could while she was alive.

I wrote about my time with my Grandmother as a parallel to chronicling my battle with infertility. There was a beautiful 6 month overlap where I got to be a Mother and a Granddaughter.

I hope more people can share about their experiences with this disease. Here is a link to over 5 years worth of posts that I wrote. Some are happy, some are tragic, but this was our life together: http://creatingmotherhood.com/category/alzheimers/

Calliope

Gary

Thankless Job — Thu, 10 Sep 2009 20:42:01 -0500

Hah!

Thanks! I really appreciate your support!

Gary himself nixed the laptop idea. He's our in-house tech support and he says he just can't spare the kind of time it would take to teach Maw even the very basics of computer use.

But I promised to invite Maw's sister (and family) up here for Thanksgiving. She seems satisfied with that for now.

Thankless

No he's not

Denise — Tue, 08 Sep 2009 13:41:04 -0500

I'm reading!

I don't have a single answer for the loneliness, not one single answer. But maybe setting her up with a Facebook account would help. It couldn't hurt... could it?

~Denise
BlogHer Community Manager

Flamingo House Happenings

Yep! Caregiving Aint fer sissies

zazupitts — Sat, 29 Aug 2009 19:07:34 -0500

Hugs to you! I have met the same shock, too, when I became a housemate with my elderly parents. It was like plunging into a new world -- much like the shock that a first-time mama feels when coming home with a newborn infant, I'm sure.

And trust me...after a whila, your son WILL look around and acknowledge that caregiving takes a lot of oevos (as we say in Arizona). Remind him (when he tells YOU what a man should be like) that a man's job is to protect and provide for the fragile.

My little niece watched us take care of our elders, and participated in the caregiving process. I'm sure that experience will imprint her with the model of love, mercy and grace. Your son will learn the same lesson, as well.

Living in Caregiverland

www.Caregiverland.com

Great advice, Zaz.

Nordette — Tue, 18 Aug 2009 15:11:36 -0500

I don't see the point in having a fit. You're so right about the calm voice. I gag easily, but try my best to dash from the room if I'm going to have a gagging episode. I'll make a point to drop by your site.

Nordette Adams is a BlogHer CE & you can find her other stuff through Her 411.

BlogHer - dementia - Comments

Alzheimer's, Dementia, CJD, and Cancer

Thanks!

My Mom

Actually that is interesting

family history

I agree...

Thanks for sharing your story...

Dementia

Thanks Virginia.

It is refreshing to see people talking about Alzheimer's

Recommended reading

Gary

No he's not

Yep! Caregiving Aint fer sissies

Great advice, Zaz.