Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific group and discussion is warranted given the challenges dementia can present to caregivers.

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.

@joey333

Thank you, Scott, I appreciate it – that's a very good idea. : ) I had one of our teens at the family doctor the other day and mentioned Tom's diagnosis. I told him what I saw with regard to MCI not always progressing to dementia (only 50% or so). He didn't look as hopeful and said it is more like 60%. So, we just wait and see? Is that what all of you guys had to do as well? Tom doesn't have any family history of dementia (that we know of), but the neurologist said it could start with him.

Jump to this post

Good morning @joey333 I hope this finds you as well as can be expected on this new day! We are having freezing rain here, so a good day to be by the computer early on!

In my wife's family there was no known dementia prior to my MIL. There is so much that has yet to be discovered when it comes to how the brain works, especially when the brain has been damaged. Good thing research is continuing!

All we could do was take life one day at a time. As the son of an alcoholic father this was a fairly comfortable mantra for us to follow since I had been doing it for years. That said, easy to say, not always easy to do! There were many periods of plateaus and times of tiny changes as well as times of significant degredation.

Many in my MIL's family were in denial over the disease for the early years and while this may have helped them feel better about their Mom's situation, it also resulted in much quality time being lost, discussions not being had, and opportunites gone. While the disease was different with my father, I was lucky enough to have made my peace with him before he died. My sisters never did and now have many things that will never be resolved for them.

We all just never know! One day a year ago I awoke having had a stroke. A month ago I was diagnosed with skin cancer on my nose and cheek. One day at a time for sure in our home! I take stock of my 'condition' only once a day during my morning walk with my new pup, then put it away to live the day, but also knowing in the back of my mind it is on my 'to do list' tomorrow..

Strength, courage, and peace!

Liked by verilee1776, joey333

REPLY
@IndianaScott

Good morning @joey333 I hope this finds you as well as can be expected on this new day! We are having freezing rain here, so a good day to be by the computer early on!

In my wife's family there was no known dementia prior to my MIL. There is so much that has yet to be discovered when it comes to how the brain works, especially when the brain has been damaged. Good thing research is continuing!

All we could do was take life one day at a time. As the son of an alcoholic father this was a fairly comfortable mantra for us to follow since I had been doing it for years. That said, easy to say, not always easy to do! There were many periods of plateaus and times of tiny changes as well as times of significant degredation.

Many in my MIL's family were in denial over the disease for the early years and while this may have helped them feel better about their Mom's situation, it also resulted in much quality time being lost, discussions not being had, and opportunites gone. While the disease was different with my father, I was lucky enough to have made my peace with him before he died. My sisters never did and now have many things that will never be resolved for them.

We all just never know! One day a year ago I awoke having had a stroke. A month ago I was diagnosed with skin cancer on my nose and cheek. One day at a time for sure in our home! I take stock of my 'condition' only once a day during my morning walk with my new pup, then put it away to live the day, but also knowing in the back of my mind it is on my 'to do list' tomorrow..

Strength, courage, and peace!

Jump to this post

One day at a time is my mantra…..sometimes one minute at a time.

REPLY
@providence1960

One day at a time is my mantra…..sometimes one minute at a time.

Jump to this post

@providence1960 TRUTH! Pure caregiver truth!

REPLY
@IndianaScott

Good morning @joey333 I hope this finds you as well as can be expected on this new day! We are having freezing rain here, so a good day to be by the computer early on!

In my wife's family there was no known dementia prior to my MIL. There is so much that has yet to be discovered when it comes to how the brain works, especially when the brain has been damaged. Good thing research is continuing!

All we could do was take life one day at a time. As the son of an alcoholic father this was a fairly comfortable mantra for us to follow since I had been doing it for years. That said, easy to say, not always easy to do! There were many periods of plateaus and times of tiny changes as well as times of significant degredation.

Many in my MIL's family were in denial over the disease for the early years and while this may have helped them feel better about their Mom's situation, it also resulted in much quality time being lost, discussions not being had, and opportunites gone. While the disease was different with my father, I was lucky enough to have made my peace with him before he died. My sisters never did and now have many things that will never be resolved for them.

We all just never know! One day a year ago I awoke having had a stroke. A month ago I was diagnosed with skin cancer on my nose and cheek. One day at a time for sure in our home! I take stock of my 'condition' only once a day during my morning walk with my new pup, then put it away to live the day, but also knowing in the back of my mind it is on my 'to do list' tomorrow..

Strength, courage, and peace!

Jump to this post

Scott, I am so grateful for the time you take in your thoughtful responses to me. You have endured/are enduring much. Your words and your walk are a beautiful testament to waiting/watching and taking things one day at a time. It is difficult for me to let go and trust, though I know it is all I can do. I am a planner and organizer – I want to know if this will turn into what I am concerned it may be so that I can "plan" and take action. I suppose, too, part of that is being concerned our older children will think me overexaggrating and off my rocker! I don't want to cause Tom undue stress either. There is much unsettled in my mind and I don't even have my thoughts all in order or clear for that matter.

REPLY
@joey333

Scott, I am so grateful for the time you take in your thoughtful responses to me. You have endured/are enduring much. Your words and your walk are a beautiful testament to waiting/watching and taking things one day at a time. It is difficult for me to let go and trust, though I know it is all I can do. I am a planner and organizer – I want to know if this will turn into what I am concerned it may be so that I can "plan" and take action. I suppose, too, part of that is being concerned our older children will think me overexaggrating and off my rocker! I don't want to cause Tom undue stress either. There is much unsettled in my mind and I don't even have my thoughts all in order or clear for that matter.

Jump to this post

Hi @joey333 I hear you here! I don't believe I ever had a day where my thoughts or things were in order from that first day my wife's neurosurgeon looked at me and said "so…you're her caregiver here?" Scared the hoohaa out of me for sure and I don't think I ever did respond to him from the fog I entered. Caregiving is a time when for the first time in my life I came to accept 'good enough' rather than seeking the perfection I always strived for, especially in my professional life.

If you haven't seen it you might find this piece I wrote of interest:
https://socialmedia.mayoclinic.org/2018/06/01/the-choice-and-challenge-of-being-good-enough-a-caregiving-story-experts-by-experience/
I tried to point out how I came to embrace 'good enough' for almost a decade and a half. Plus now that my stroke took the sight and hearing from my right side I have to embrace it again. Especially when it comes to certain things requiring more depth perception than I can muster such as cleaing mirrors (weird, eh?), nighttime driving, and threading a bleeping needle.

While it may sound defeatest, as a caregiver my plan was always to plan for a worst case scenario and then be pleased if it was something less. I also came to understand that caregivers are often not fully understood by even those closest to us. As a result I always just said to myself 'the care of my wife comes first', and while a few understood, there were times many did not, which sometimes even included our adult children (38 and 41).

The second half of my work career I spent as a major gift fundraiser for an international child/family development nonprofit. I grew thick skin at being told 'no' so many times, but that hardly prepared me for many of the comments I received as a caregiver. Seems it is one of those jobs loads of folks who aren't caregivers seem to believe they know all about and feel free to give their two bits! I was often accused of 'seeking attention' when I would simply respond honestly to the question "how you doing?". Again, I began to prepare for the negative comments and was pleased if I didn't get one 🙂

Personally I believe caregiving is a form of love. At times it is grinding, consuming, and doubt-filling, but never doubting one's love.. It can morph into something undoable for any human, but not undo the love. It can deplete one's physical and emotional energy, but never drive one's love to empty. It is a journey unlike others.

Sorry I carried on a bit too much!

Strength, courage, and peace!

REPLY
@IndianaScott

Hi @joey333 I hear you here! I don't believe I ever had a day where my thoughts or things were in order from that first day my wife's neurosurgeon looked at me and said "so…you're her caregiver here?" Scared the hoohaa out of me for sure and I don't think I ever did respond to him from the fog I entered. Caregiving is a time when for the first time in my life I came to accept 'good enough' rather than seeking the perfection I always strived for, especially in my professional life.

If you haven't seen it you might find this piece I wrote of interest:
https://socialmedia.mayoclinic.org/2018/06/01/the-choice-and-challenge-of-being-good-enough-a-caregiving-story-experts-by-experience/
I tried to point out how I came to embrace 'good enough' for almost a decade and a half. Plus now that my stroke took the sight and hearing from my right side I have to embrace it again. Especially when it comes to certain things requiring more depth perception than I can muster such as cleaing mirrors (weird, eh?), nighttime driving, and threading a bleeping needle.

While it may sound defeatest, as a caregiver my plan was always to plan for a worst case scenario and then be pleased if it was something less. I also came to understand that caregivers are often not fully understood by even those closest to us. As a result I always just said to myself 'the care of my wife comes first', and while a few understood, there were times many did not, which sometimes even included our adult children (38 and 41).

The second half of my work career I spent as a major gift fundraiser for an international child/family development nonprofit. I grew thick skin at being told 'no' so many times, but that hardly prepared me for many of the comments I received as a caregiver. Seems it is one of those jobs loads of folks who aren't caregivers seem to believe they know all about and feel free to give their two bits! I was often accused of 'seeking attention' when I would simply respond honestly to the question "how you doing?". Again, I began to prepare for the negative comments and was pleased if I didn't get one 🙂

Personally I believe caregiving is a form of love. At times it is grinding, consuming, and doubt-filling, but never doubting one's love.. It can morph into something undoable for any human, but not undo the love. It can deplete one's physical and emotional energy, but never drive one's love to empty. It is a journey unlike others.

Sorry I carried on a bit too much!

Strength, courage, and peace!

Jump to this post

I look forward to reading your article, Scott – thank you for the link! : ) I am afraid I do care too much about what others think, especially the kiddos (big and little alike). Your example of patient endurance and perseverance are admirable and a very good example. Oh, that ugly perfectionism, it rears its ugly head within me way too often! I can see from your writing alone how much benefit this particular caregiving will benefit the growth of my own soul. I was just videochatting with my daughter-in-law and the babies! It was good to be able to talk things over with her – she does listen and has some medical background as well. I must scoot as I need to pick up one of the teens.

REPLY
@IndianaScott

Hi @joey333 I hear you here! I don't believe I ever had a day where my thoughts or things were in order from that first day my wife's neurosurgeon looked at me and said "so…you're her caregiver here?" Scared the hoohaa out of me for sure and I don't think I ever did respond to him from the fog I entered. Caregiving is a time when for the first time in my life I came to accept 'good enough' rather than seeking the perfection I always strived for, especially in my professional life.

If you haven't seen it you might find this piece I wrote of interest:
https://socialmedia.mayoclinic.org/2018/06/01/the-choice-and-challenge-of-being-good-enough-a-caregiving-story-experts-by-experience/
I tried to point out how I came to embrace 'good enough' for almost a decade and a half. Plus now that my stroke took the sight and hearing from my right side I have to embrace it again. Especially when it comes to certain things requiring more depth perception than I can muster such as cleaing mirrors (weird, eh?), nighttime driving, and threading a bleeping needle.

While it may sound defeatest, as a caregiver my plan was always to plan for a worst case scenario and then be pleased if it was something less. I also came to understand that caregivers are often not fully understood by even those closest to us. As a result I always just said to myself 'the care of my wife comes first', and while a few understood, there were times many did not, which sometimes even included our adult children (38 and 41).

The second half of my work career I spent as a major gift fundraiser for an international child/family development nonprofit. I grew thick skin at being told 'no' so many times, but that hardly prepared me for many of the comments I received as a caregiver. Seems it is one of those jobs loads of folks who aren't caregivers seem to believe they know all about and feel free to give their two bits! I was often accused of 'seeking attention' when I would simply respond honestly to the question "how you doing?". Again, I began to prepare for the negative comments and was pleased if I didn't get one 🙂

Personally I believe caregiving is a form of love. At times it is grinding, consuming, and doubt-filling, but never doubting one's love.. It can morph into something undoable for any human, but not undo the love. It can deplete one's physical and emotional energy, but never drive one's love to empty. It is a journey unlike others.

Sorry I carried on a bit too much!

Strength, courage, and peace!

Jump to this post

I do not know how you do it Scott, but you have hit the nail on the head again with this answer to Joey. Settling for "good enough" frees up so many things. Who are we trying to please anyway, and as my dear mother used to say," give it a lick and promise". We need to give ourselves permission to not be "so perfect". We have more time for happiness and fun things, plus we are more fun to be around for the others in our lives. I love everything you said, including the last paragraph.
To catch you up on my personal problem with lumbar back pain. I will be getting a follow up MRI on the 14th and from that, my pain manager will try to determine what is making the pain so much worse. Maybe a ruptured disc? And then what coarse of action to take. The lumbar injections did not touch it. Always with hope…… and,@IndianaScott, yes, strength, courage and peace.

REPLY
@virginiatc

I do not know how you do it Scott, but you have hit the nail on the head again with this answer to Joey. Settling for "good enough" frees up so many things. Who are we trying to please anyway, and as my dear mother used to say," give it a lick and promise". We need to give ourselves permission to not be "so perfect". We have more time for happiness and fun things, plus we are more fun to be around for the others in our lives. I love everything you said, including the last paragraph.
To catch you up on my personal problem with lumbar back pain. I will be getting a follow up MRI on the 14th and from that, my pain manager will try to determine what is making the pain so much worse. Maybe a ruptured disc? And then what coarse of action to take. The lumbar injections did not touch it. Always with hope…… and,@IndianaScott, yes, strength, courage and peace.

Jump to this post

Thank you for the kind words, @virginiatc I love your mother's saying! Mind if I use it in the future?

It's early here, weird weather — high of 52, raining, but a low forecast of 9! Very strange, but at least I don't have to shovel rain!

I hope you have a good, solid day and good luck with the MRI on the 14th. Valentine's Day and a dear, friend of old's birthday, so there should be good vibes along with you in the machine as you groove to its weird tunes!

As always, strength, courage, and peace!

Liked by joey333

REPLY
@IndianaScott

Thank you for the kind words, @virginiatc I love your mother's saying! Mind if I use it in the future?

It's early here, weird weather — high of 52, raining, but a low forecast of 9! Very strange, but at least I don't have to shovel rain!

I hope you have a good, solid day and good luck with the MRI on the 14th. Valentine's Day and a dear, friend of old's birthday, so there should be good vibes along with you in the machine as you groove to its weird tunes!

As always, strength, courage, and peace!

Jump to this post

You are quite welcome,@IndianaScott, and of course you may use anything from my posts now and in the future. Mother was full of sayings and bits of wisdom that can only come from a very hard life and challenges that would make a grown person cry. As an adult, when I would start a project, I stayed with it, if it took me all day and night to complete. She stayed with me on one occasion after I had my last child and she watched me and then said, " The day will come when you will be able to lie down next to your work." The day HAS come and I understand completely. You can use that one too, if you so choose as she had to have heard it at some time herself.
It is 27 here and raining and freezing on the roads. There is snow on the ground too. No school, again. Lots of those kind of days this last two weeks. (Michigan)
Thanks for the kind words for the 14th. Sending valentine wishes to you and all, who are on this site with us.

REPLY
@virginiatc

You are quite welcome,@IndianaScott, and of course you may use anything from my posts now and in the future. Mother was full of sayings and bits of wisdom that can only come from a very hard life and challenges that would make a grown person cry. As an adult, when I would start a project, I stayed with it, if it took me all day and night to complete. She stayed with me on one occasion after I had my last child and she watched me and then said, " The day will come when you will be able to lie down next to your work." The day HAS come and I understand completely. You can use that one too, if you so choose as she had to have heard it at some time herself.
It is 27 here and raining and freezing on the roads. There is snow on the ground too. No school, again. Lots of those kind of days this last two weeks. (Michigan)
Thanks for the kind words for the 14th. Sending valentine wishes to you and all, who are on this site with us.

Jump to this post

Back to you and all those here!
Scott

Valntine

REPLY

Scott, I am not even going to ask you how you did that but it is lovely, and an uplift to my day.

REPLY
@joey333

Thank you, Virginia, for sharing your story with me. I am touched at your tenderness and your willingness to share with me and also filled with compassion for you and your dear husband and your daily walk. It seems surreal to think that we could be there someday . . . especially given that Daddy is the sole breadwinner and we still have six children under the roof. Our youngest just turned seven.

Jump to this post

You are welcome, Joey. I have been reluctant to reply to this post as I really don't know what to say, that I have not already said. My dear, you have been dealt a different hand than I was. First of all, my husband is 17 yrs. older than me. We were both retired, the children grown and most were married and living in other places, when my husband's symptoms starting showing. My husband was very active and never looked his age, and still does not. (95 yrs. full head of thick hair, the envy of our doctor!) Since we are so much older than you and your precious one, you may need advise from some who have had a similar road to travel. I also feel compassion for you and what you are going thru. I will always be following your posts and if I can help in any small way, I would love that.

REPLY

Thanks for your response, Virginia, I do appreciate it. Tom is ten years older than me. I want to say that I feel guilty to be involved here on the site, honestly . . . let me explain. I wonder if I am "borrowing trouble" (a saying a friend shared with me one day – her husband battles with cancer). It wasn't in relation to our present situation. We don't have a diagnosis beyond MCI, but the changes I have observed in him over the past number of years have me believing it won't just end here with MCI. I feel confused about my feelings!

REPLY
@virginiatc

You are quite welcome,@IndianaScott, and of course you may use anything from my posts now and in the future. Mother was full of sayings and bits of wisdom that can only come from a very hard life and challenges that would make a grown person cry. As an adult, when I would start a project, I stayed with it, if it took me all day and night to complete. She stayed with me on one occasion after I had my last child and she watched me and then said, " The day will come when you will be able to lie down next to your work." The day HAS come and I understand completely. You can use that one too, if you so choose as she had to have heard it at some time herself.
It is 27 here and raining and freezing on the roads. There is snow on the ground too. No school, again. Lots of those kind of days this last two weeks. (Michigan)
Thanks for the kind words for the 14th. Sending valentine wishes to you and all, who are on this site with us.

Jump to this post

I am a "Yooper Girl" as I was raised in the Upper Peninsula of Michigan (eastern side – the Les Cheneaux Islands – south of Sault Ste. Marie). I remember shoveling so much snow!!!! : ) When our eldest was two Tom and I moved north with him and lived there in the home I grew up in. We lived there for the next nine years and we welcomed our second through fifth babies there. Then, Tom took a job with the federal government and we were bound for Northern Virginia. Tom is a native of Richmond so we thought we were coming home, but NOVA is not really like the rest of Virginia! We have been here ever since. Our eldest and his young family moved north this past fall (missing the babies!) and are in the Gaylord/Grayling area.

REPLY
@joey333

I am a "Yooper Girl" as I was raised in the Upper Peninsula of Michigan (eastern side – the Les Cheneaux Islands – south of Sault Ste. Marie). I remember shoveling so much snow!!!! : ) When our eldest was two Tom and I moved north with him and lived there in the home I grew up in. We lived there for the next nine years and we welcomed our second through fifth babies there. Then, Tom took a job with the federal government and we were bound for Northern Virginia. Tom is a native of Richmond so we thought we were coming home, but NOVA is not really like the rest of Virginia! We have been here ever since. Our eldest and his young family moved north this past fall (missing the babies!) and are in the Gaylord/Grayling area.

Jump to this post

Good morning @joey333 A Yooper, eh? I traveled a fourteen state region across the Midwest for my final (paying) job and Michigan was one of those states. I worked from a home office while my organization's HQ was in Richmond!. I return to RVA often to visit my bff who lives in Charlottesville and still works in Richmond. I live about 100yds south of the Michigan border where Illinois, Indiana, and Michigan collide. One of my favorite donors lived 'off the grid' in Watersmeet, my wife has family in Iron Mountain, and long ago a segment of my family were hard-rock miners in Ishpeming and Marquette, where my favorite pasty store is still in business and thankfully ships! As a youngster my family of origin took the common, at that time, two week summer vacation. We lived in Cleveland and would make the two day drive to what I thought was truly heaven on earth, a log cabin on the shore of West Twin Lake in Lewiston, Michigan! IIRC it was pretty close to Gaylord, where we went to shop for groceries! I am awash in nice memories! Thank you for sharing!

Small world aside, I believe you should NOT feel guilty at all about your feelings! Not in the least! We, who are closest to our 'patient' are the one most likely to see changes, large, small, and tiny. I could tell the smallest of changes in my wife because I was with her the most. This is just being in touch with your loved one on a bit different level I think. Also being alert to changes is natural I believe as are mixed emotions for caregivers! For me love is always a bit of a Gordian knot and only more so when our loved one has any sort of medical issue. I'd just say you are being vigilant!

Hang in there and I send continued strength, courage, and peace!

REPLY
Please login or register to post a reply.