Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 1, 2018

In reply to @hopeful33250 "@harriethodgson1 Are any of your talks available online?" + (show)

Hi @hopeful33250 @daisy2011 and members of this incredible group,

@harriethodgson1 recently wrote a lovely article for the Experts by Experience series (Mayo Clinic social Media Network). I hope you enjoy reading her insights about caregiving as much as I did:

A Nothing Day: Self-Care for Caregivers – Experts by Experience https://socialmedia.mayoclinic.org/2018/07/06/a-nothing-day-self-care-for-caregivers-experts-by-experience/

Teresa, Volunteer Mentor | @hopeful33250 | Sep 1, 2018

Thanks, @kanaazpereira for directing us to this wonderful article. The ideas are real gems! I love the concept of a "Nothing Day" and the ways in which Harriet uses her Nothing Day are precious!

Teresa, Volunteer Mentor | @hopeful33250 | Sep 1, 2018

In reply to @debbraw "Hi @daisy2011 - I'm Debbra. My husband was diagnosed with Mild Cognitive Impairment, which seems to..." + (show)

@debbraw
I have heard from many friends who say the loneliness was such a difficult part of this disease. One friend said that she and her husband (he has dementia) now eat in front of the TV since they cannot have their usual dinner conversations. I suppose it is all a matter of continued adjustment to the changes but yet you have the memories of what used-to-be.

Scott, Volunteer Mentor | @IndianaScott | Sep 2, 2018

In reply to @hopeful33250 "@mbabkk Could you tell a little more about these "medicated patches"? Are they specifically for dementia..." + (show)

Hi @hopeful33250 and @mbabkk I am not sure if this is what was being referred to as /medicated patches', but I know in my wife's case. late in her disease journey, the doctors prescribed some of her medications both in patch form and creams, rather than pills or liquids. In one case they (the pharmacy0 also were able to compound four medications together into a suppository. As my wife's mental condition deteriorated, I was impressed with the various methods of application her doctors came up with!

Strength, courage, and peace!

Debbra Williams, Alumna Mentor | @debbraw | Sep 2, 2018

In reply to @kanaazpereira "Hi @hopeful33250 @daisy2011 and members of this incredible group, @harriethodgson1 recently wrote a lovely article for..." + (show)

Thank you @kanaazpereira - I LOVE the idea of Nothing Day! I'm going to share it with the other group I'm in: Living with Mild Cognitive Impairment. I really appreciate you highlighting it.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 2, 2018

In reply to @IndianaScott "Hi @hopeful33250 and @mbabkk I am not sure if this is what was being referred to..." + (show)

@IndianaScott
That is wonderful, Scott. I'm sure they were able to provide her more medications that way. I'm glad that you shared that.

Harriet Hodgson | @harriethodgson1 | Sep 2, 2018

Thanks for sharing my article.

Debbra Williams, Alumna Mentor | @debbraw | Sep 2, 2018

Harriet @harriethodgson1 - I LOVED your article. I think its really going to be a big help to others in the MCI group. Thanks for that very relevant and insightful piece.

Debbra Williams, Alumna Mentor | @debbraw | Sep 2, 2018

In reply to @hopeful33250 "@debbraw I have heard from many friends who say the loneliness was such a difficult part..." + (show)

Thanks @hopeful33250 - Yes, you have the memories of what "used to be", but they are memories. The cruel and unforgiving part of this disease is that you've lost what "used to be" and you've also lost "what might have been" in the future. At least for me, that can set me up for a full scale melt down if I dwell too long on it. I understand your friends adaptation to dinner in front of TV. We do that frequently, and when we go on trips, I turn on NPR or Pandora - because I miss those long car rides where it was easy to chat and plan for the trip and just connect. I think that's why it is doubly important to maintain time with friends and other family members to fill that gap and not feel so isolated. I remember not too long ago recalling what it was like many years ago for the short time I was a stay at home mom with an infant. What a joy it was when I had a chance to get out among people and talk to adults... That's kind of where I am now. And at the same time, my heart just breaks for my husband because on some level, he recognizes that he too has lost "what used to be" and what "might have been."

mary2017 | @mary2017 | Sep 2, 2018

In reply to @debbraw "Thanks @hopeful33250 - Yes, you have the memories of what "used to be", but they are..." + (show)

Hugs, I understand what you are saying, my husband seems a little better since his doctor addressed the low hemoglobin issue, but sometimes he is very forgetful.