1. < Caregivers

Caregiving and Reality

Posted by anncgrl @anncgrl, Jan 23, 2017

It is 3 a.m. I am the primary caregiver of my husband. He is diagnosed with frontal temporal dementia. He lives at home and I am assisted by a program called CAPS which I qualified for thru DSS here in N.C. This program pays me for a certain number of hours a week to be my husbands caregiver. They provide a home health nurse, etc. But that is not why I am posting.
Today has been one of the days when caretaking has been real. By this I mean I have a big mess I am cleaning up in the bathroom. My husband is incontinent but often makes it to use an urinal which I empty into the toilet. He tries to make it to the toilet for bowel movements but his walking is not good and getting his shorts and depends down AND hitting the target usually ends up in a mess which is made worse by loose bowels. Forgive graphic detail please. I think being real helps me and others. So I am in the midst of that job when I hear my husband calling my name faintly. He had rolled off his bed and was on the floor in an awkward position and out of it because of his night medication and generally disoriented mind. I could not get him up because he could not help me so I put a pillow down, covered him with a blanket, remade his bed and waited until he had more strength. He is now sound asleep in bed with the rails up on both sides. He does not like those side rails but I told him it was that or he couldn't stay home. Not being mean just safe for him and for me. We can both get hurt in lifting situations.
When he needs to get up from sitting I use a gait belt and I often help him get to his bed. At night I often feel as if I have been lifting at the gym.
So, headed back to the bathroom to finish that job. The home health nurse said it is important for me to wash my hands thoroughly after anything to do with bathroom stuff. Those type germs are very dangerous. She scared me into doing what she suggested. lol
Keeping it real here at our home means patience, grace, acceptance, prayer, taking time for me and sharing with others. Caregiving is not for sissies and I learn something new all the time. In case you think I have it together...both myself and my husband see a psychologist, we are both on antidepressants and we butt heads quite often. I have cabin fever and he often doesn't know if it is day or night. YIKES!

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

Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 7, 2017

A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed somewhere to say it.

"Eight months today. I miss you so.

It’s not in the little things. Neither is it in the big things. It’s in everything.

Time has not touched the rawness of my wound.

You are still the first thing on my mind in the morning. Your love is the last thing I think about as I fight through the nights’ lonelinesses.

I miss you when I’m sad, because no one was as good at soothing my troubled soul as you. I miss you when I am happy, because you made our good times sparkle. I miss you in your Nightlight Song, passion for our family, Linners, Jumbles, Winstons, and in those things I truly never, ever thought I would.

Goddamnit…how I miss you!

I call you ‘my best half’, but you were always more than half of me. In our youth it was you who forged our way. When I was reticent, you led us to discover the bold paths to our future. In later years it was you who taught me steely courage, indomitable strength, intenseness of beauty, and the rock-solid depths in which our love was rooted. You taught me about pain no one should ever have had to endure, least of all you.

I have come to accept I will miss you all the days of my life.

That alone may well be the most valuable gift you ever shared with me.

True, undying, forever love."

REPLY
3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 7, 2017
In reply to @IndianaScott "A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed..." + (show)
@IndianaScott

A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed somewhere to say it.

"Eight months today. I miss you so.

It’s not in the little things. Neither is it in the big things. It’s in everything.

Time has not touched the rawness of my wound.

You are still the first thing on my mind in the morning. Your love is the last thing I think about as I fight through the nights’ lonelinesses.

I miss you when I’m sad, because no one was as good at soothing my troubled soul as you. I miss you when I am happy, because you made our good times sparkle. I miss you in your Nightlight Song, passion for our family, Linners, Jumbles, Winstons, and in those things I truly never, ever thought I would.

Goddamnit…how I miss you!

I call you ‘my best half’, but you were always more than half of me. In our youth it was you who forged our way. When I was reticent, you led us to discover the bold paths to our future. In later years it was you who taught me steely courage, indomitable strength, intenseness of beauty, and the rock-solid depths in which our love was rooted. You taught me about pain no one should ever have had to endure, least of all you.

I have come to accept I will miss you all the days of my life.

That alone may well be the most valuable gift you ever shared with me.

True, undying, forever love."

Jump to this post

@IndianaScott You've touched my heart, Scott. What a beautiful testimony to love (as it should be)! You and your wife were both blessed to have such a marvelous reciprocal relationship and you are blessed to be able to view it at a distance, if you will, and appreciate it for what it was. Thanks for sharing this with us. Teresa

REPLY
macbeth | @macbeth | Mar 7, 2017
In reply to @IndianaScott "A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed..." + (show)
@IndianaScott

A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed somewhere to say it.

"Eight months today. I miss you so.

It’s not in the little things. Neither is it in the big things. It’s in everything.

Time has not touched the rawness of my wound.

You are still the first thing on my mind in the morning. Your love is the last thing I think about as I fight through the nights’ lonelinesses.

I miss you when I’m sad, because no one was as good at soothing my troubled soul as you. I miss you when I am happy, because you made our good times sparkle. I miss you in your Nightlight Song, passion for our family, Linners, Jumbles, Winstons, and in those things I truly never, ever thought I would.

Goddamnit…how I miss you!

I call you ‘my best half’, but you were always more than half of me. In our youth it was you who forged our way. When I was reticent, you led us to discover the bold paths to our future. In later years it was you who taught me steely courage, indomitable strength, intenseness of beauty, and the rock-solid depths in which our love was rooted. You taught me about pain no one should ever have had to endure, least of all you.

I have come to accept I will miss you all the days of my life.

That alone may well be the most valuable gift you ever shared with me.

True, undying, forever love."

Jump to this post

@IndianaScott

Thank you for posting these heart wrenching, but beautiful feelings. My heart goes out to you.

Macbeth

REPLY
Debby - @tavi | @tavi | Mar 7, 2017
In reply to @IndianaScott "A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed..." + (show)
@IndianaScott

A different aspect of the realities of caregiving....when it's over. Just my thoughts because I needed somewhere to say it.

"Eight months today. I miss you so.

It’s not in the little things. Neither is it in the big things. It’s in everything.

Time has not touched the rawness of my wound.

You are still the first thing on my mind in the morning. Your love is the last thing I think about as I fight through the nights’ lonelinesses.

I miss you when I’m sad, because no one was as good at soothing my troubled soul as you. I miss you when I am happy, because you made our good times sparkle. I miss you in your Nightlight Song, passion for our family, Linners, Jumbles, Winstons, and in those things I truly never, ever thought I would.

Goddamnit…how I miss you!

I call you ‘my best half’, but you were always more than half of me. In our youth it was you who forged our way. When I was reticent, you led us to discover the bold paths to our future. In later years it was you who taught me steely courage, indomitable strength, intenseness of beauty, and the rock-solid depths in which our love was rooted. You taught me about pain no one should ever have had to endure, least of all you.

I have come to accept I will miss you all the days of my life.

That alone may well be the most valuable gift you ever shared with me.

True, undying, forever love."

Jump to this post

@IndianaScott
Thank you for sharing your heart, your pain and your tribute to your wife.
Debby

REPLY
anncgrl | @anncgrl | Mar 26, 2017

Scott, thank you. I have been gone from this chat for awhile and have no idea why! I think I am losing it. LOL
Your words are so deeply felt and I appreciate your courage in the raw honesty. My thoughts and prayers are with you. I am sad for the loss in your life.

REPLY
NJLizz52 | @njlizz52 | May 25, 2017

thanks for your real life posting. I am wondering if having your husband in therapy is worth the time, energy and expense if he has dementia? My mother has Alzheimer's and can't retain anything longer than a few minutes these days. Whatever a therapist would recommend to her or what she might discuss would be lost in a vapor before end of the visit. Is he or you getting anything out of his psychotherapy? Just wondering. If anything, keep it up for yourself.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 25, 2017
In reply to @njlizz52 "thanks for your real life posting. I am wondering if having your husband in therapy is..." + (show)
@njlizz52

thanks for your real life posting. I am wondering if having your husband in therapy is worth the time, energy and expense if he has dementia? My mother has Alzheimer's and can't retain anything longer than a few minutes these days. Whatever a therapist would recommend to her or what she might discuss would be lost in a vapor before end of the visit. Is he or you getting anything out of his psychotherapy? Just wondering. If anything, keep it up for yourself.

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Welcome to Connect, @njlizz52.
Are you caring for your mother? Does she live with you?

REPLY
babykay | @babykay | Jun 27, 2023
In reply to @anncgrl "My husband has FTD which is a type of dementia affecting the frontal lobe of the..." + (show)
@anncgrl

My husband has FTD which is a type of dementia affecting the frontal lobe of the brain. As such the symptoms come and go and to a greater or lesser degree. We are told the lesser part will be longer and the greater part shorter as time goes on. That is probably already true but my nose is pressed up against the situation 24/7 so my ability to discern is cloudy at best. This is a quick rant cause I do need to try to clean that *^%%^ kitchen.

My darling husband is sleeping about 17 hours a day at this time. Sounds good in some ways but he begins to prowl around about 2:30 in the a.m. His medication makes him extremely out of it at that time of night. He gets up and then back to bed, then up and then sleeps on the sofa, up and then back to bed. Which would be great except he needs me in order to get around without breaking his neck. I have insomnia in a big way. This does come in handy for the night stuff but I end up not sleeping at all or only a few hours and nothing else gets done around this place because we are both kinda like zombies only I can walk and think and he can stumble and kinda think. O.K. forget the rant...this is beginning to sound hilarious to me rather than angry or sad or anything other than freaking hilarious. I know it isn't funny but humor helps so much and the picture of us up all hours of the night in our two states of mind trying to make some sense of things is pretty darn funny so no problem. I'm good Just needed to share.

And, by the way, trying to eat different is freaking difficult.

God bless each of you!

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I also have Frontal Lobe Dementia and my family is having a hard time dealing with me

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 27, 2023

@babykay I’m so sad to hear to hear that your family are having trouble dealing with you. Your dementia is NOT you. You are the same person you always were!
Maybe you could encourage a family member to join this group on Mayo Connect. There is so much they could learn. Assure them that they would be anonymous and even you would not know. You could even promise to never read the discussions!
https://connect.mayoclinic.org/group/caregivers-dementia/
I really worry about you and want the best for you. What are the problems that they are having problems with?

REPLY
1 reply
babykay | @babykay | Jun 28, 2023
In reply to @becsbuddy "@babykay I’m so sad to hear to hear that your family are having trouble dealing with..." + (show)
@becsbuddy

@babykay I’m so sad to hear to hear that your family are having trouble dealing with you. Your dementia is NOT you. You are the same person you always were!
Maybe you could encourage a family member to join this group on Mayo Connect. There is so much they could learn. Assure them that they would be anonymous and even you would not know. You could even promise to never read the discussions!
https://connect.mayoclinic.org/group/caregivers-dementia/
I really worry about you and want the best for you. What are the problems that they are having problems with?

Jump to this post

I forget things and when I ask for help when trying to balance my checkbook a certain family member threw my checkbook at me. They just don't understand

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