It is the loved ones/caregivers who bear the deepest burden and suffering.

DarrenKeith

 I lost my father after an incredibly long battle with Alzheimer's about 15 months ago.

Wanting to help others finding themselves in the same horrible and overwhelming situation, I wrote an essay about the experience, which was just published.

I wrote it not only to tell my story, but to raise awareness, provide insight and resources, draw attention to the signs and red flags of Alzheimer's (there are many people at this very moment who have a family member with dementia and do not even realize it), and to offer a glimpse into how Alzheimer’s can affect not only those afflicted with the disease, but — almost more importantly — their loved ones, because it is they who bear the deepest burden and suffering. 

Above all, I want to help people navigate the devastating journey of caring for a loved one with Alzheimer's. 

Here is a quote from Greg O'Brien, author of On Pluto: Inside the Mind of Alzheimer's

"Excellent piece, Darren. Excellent! Hoping as many people as possible will read your words. You have great insight, a gift the world needs to hear."

I hope you will read the essay and would be eternally grateful if you can share it in any capacity possible, so it can help the countless people out there affected by this horrific disease. 

Thank you and all the best,

Darren Keith

The essay (Click on this link below or copy-and-paste it into your browser):

https://medium.com/@contactdarrenkeith/living-with-alzheimers-efccf45e410b

Kenzie56

I just read your essay and immediately sent it to my adult son and daughter. My husband is in the advance stage of mixed dementia and your article nailed it. When you and your family are going over Niagara Falls, it is a challenge to appreciate and understand each family member's perspective and experience. Thank you for sharing your experience so that we can use it to enlighten others and also to feel validated regarding our own emotions at the different stages of this journey.

abc123

Dear Daren, Thank you for sharing this with us! It shocks me how little people know about this disease. I have a friend who really thought there was a cure for early onset disease, a pill! Don’t we wish! 

Sincerely,

abc123

Crushed

hot link

https://medium.com/@contactdarrenkeith/living-with-alzheimers-efccf45e410b

Crushed

Nice piece.  My mother died of and with vascular dementia .  But the pain of losing my wife to early onset Alzheimer's has been infinitely worse.  That is what your essay does not and could not cover. 

Ed1937

Darren, thank you for this. It should be eye opening for many people.

David J

Darren, I just read your excellent essay, and I intend to send it to others who may benefit from reading it. You hit so many of the issues, emotions, and realities of AD and other dementias. 

I completely understand your mother’s difficulty seeing that the husband she knew and loved had already gone. It is so hard for a spouse to come to grips with this, particularly in the throes of 24/7 caregiving. It was only after my wife was in the MCF that I internalized this. 

Thanks for for writing this essay. 

David

Pam BH

Thank you for this heartfelt essay. It says it all. I will share and have printed it out to make copies for computer illiterate friends who have limited ways to gather information on this horrible disease.  May you have peace.

Jo C.

A beautifully written piece, breathtakingly crystal clear in its presentation without a single false note.

I shall save and share this writing and say, "thank you," to Mr. Darren Keith; thank you very much for caring enough to come here and give this loving gift to all who are fortunate enough to come upon it.

While reading this I was able to clearly see the significant differences of the LOs journeys with dementia in our own family.  My MIL and GMIL both had Alzheimer's and were the sweetest, dearest ladies during their journeys with dementia right to the end.   A blessing. Each had about a six to eight year journey through that sad valley.

My step-dad had a 20 year history with Alzhemer's.   Amazingly, he had a badly affected short term memory and badly skewed judgment, but somehow retained the ability to know who we were, who he was and to know where he was.   His was a very slow moving disease process.  Right to the end of the last couple of months, he could still dress himself if clothes were set out; he could shower with standby assistance; he was almost always still continent; he could feed himself, and he was placid and easily pleased.  Not much in the way of irritation, but his judgment was shot to pieces so we had to be careful to ensure that he stayed safe and did not get willy-nilly into trouble.  Many blessings in his unwanted sad journey.

None of these three were wanderers.   Another blessing.

Then my mother, a different story altogether.  She was diagnosed with a behavioral variant of FrontoTemporal Dementia.  Alzheimer's on steroids.  The bombastic fury, the agitation, the plundering of finances, important documents; photograph albums, other belongings and so much more.  Dreadful delusions drove the train, the anger issues and ranting went over the 24 hour continuum.  Lashing out in fury, she lived in the hellish circle of a damaged brain run amok.  If we were driven to distraction, imagine what it was like living inside her head feeling all of that.  Blessings, not so much.   Care aide assistance became impossible; she was too much to manage.  Our good dementia specialist prescribed Risperdal which helped, but the disease continued to advance and much of what Darren has written came to pass.

My feeling is; despite the multiple family members who suffered dementia, it would seem to me that it would be far, far worse if this was happening to a beloved spouse.  Far worse.

  Though all of those LOs have now passed, I continue to feel comfort from other's sharing here in this wonderfully supportive AlzConnected.

Again, thank you Darren.

J.