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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.

Teri | @tsc | Feb 25, 2022
In reply to @maestro20810 "My husband passed away last month from Alzheimer’s. The thing that will stick in my mind..." + (show)
@maestro20810

My husband passed away last month from Alzheimer’s. The thing that will stick in my mind for the rest of my days happened a month before he died. He had been put on trazodone to help him sleep. But the first three nights he was on it had the exact opposite effect - he was up most if not all night, wandering around the house. On the third night, he was in the bathroom, where he actually zipped the commode lid off and then wanted to remove the tank lid. I feared he would drop it and it would break and I had to physically block him from it. At some point during this, I had had it. I lost sight of the fact that he was not doing this to make me mad. And that’s when I screamed, “I hate you!” It was the reaction of a child mad at her mother because she won’t let her have a piece of candy, not an adult. Now I have to live with this.

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@maestro20810 My husband has Alzheimer's. I noticed changes in him four years ago and we received a diagnosis in 2019. So far, I've been fortunate. He has a good disposition and sleeps at night. He's been out of the house for a month as he broke his hip, had surgery, and was in rehab for a month. He comes home today and will need someone with him 24/7. That starts with me.
Please don't beat yourself up over a remark made in anger when you were at your breaking point. Odds are your husband forgot it. The care and concern you gave him through the years speak volumes over one remark made when you were at you wit's end. Your husband knew you loved him. Take some breaths, remember all the kindnesses you showed him, and forgive yourself for being human. I wish you the best.

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raebaby | @raebaby | Feb 26, 2022
In reply to @maestro20810 "My husband passed away last month from Alzheimer’s. The thing that will stick in my mind..." + (show)
@maestro20810

My husband passed away last month from Alzheimer’s. The thing that will stick in my mind for the rest of my days happened a month before he died. He had been put on trazodone to help him sleep. But the first three nights he was on it had the exact opposite effect - he was up most if not all night, wandering around the house. On the third night, he was in the bathroom, where he actually zipped the commode lid off and then wanted to remove the tank lid. I feared he would drop it and it would break and I had to physically block him from it. At some point during this, I had had it. I lost sight of the fact that he was not doing this to make me mad. And that’s when I screamed, “I hate you!” It was the reaction of a child mad at her mother because she won’t let her have a piece of candy, not an adult. Now I have to live with this.

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I found myself doing the same thing; at that moment it is impossible to act in a calm manner. My husband certainly forgot all about it quickly. We are just human. I'd say bless you for caring for him and be easier on yourself. We when signed on, full of love and hope for the future, we never could have seen this as our future.

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Julie Chitwood | @billchitwood | Feb 27, 2022
In reply to @maestro20810 "My husband passed away last month from Alzheimer’s. The thing that will stick in my mind..." + (show)
@maestro20810

My husband passed away last month from Alzheimer’s. The thing that will stick in my mind for the rest of my days happened a month before he died. He had been put on trazodone to help him sleep. But the first three nights he was on it had the exact opposite effect - he was up most if not all night, wandering around the house. On the third night, he was in the bathroom, where he actually zipped the commode lid off and then wanted to remove the tank lid. I feared he would drop it and it would break and I had to physically block him from it. At some point during this, I had had it. I lost sight of the fact that he was not doing this to make me mad. And that’s when I screamed, “I hate you!” It was the reaction of a child mad at her mother because she won’t let her have a piece of candy, not an adult. Now I have to live with this.

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Don't burden yourself with that. At sometime we've probably all said or at least thought the same during a fight. And if he even understood it at the time it would have 'floated away' and been forgotten. It is so hard to stop and think, 'this isn't really him talking/acting, especially when there are more good days than bad.

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janet7 | @janet7 | Mar 13, 2022
In reply to @tavi "@kmkm Welcome! I am in the same position as you are -- except I'm caring for..." + (show)
@tavi

@kmkm Welcome! I am in the same position as you are -- except I'm caring for my spouse. Looking forward to sharing experiences and ideas with you!

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I am also caring for my husband with Dementia. I need to vent and relate to others so I don’t feel like I am alone and scared.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 14, 2022

Hello @janet7 Welcome to the Mayo Connect community! Glad to have you here and with fellow caregivers in this discussion. I am Scott and I was my wife's caregiver for 14+ years. I found this community much as you said about yourself "alone and scared". Caregiving certainly imposes a significant amount of isolation and seeing our world collapse down to a very small universe of meeting the needs of our patient/loved one. I love Connect since I can read, respond, and post whenever and I feel a part of a community that understands real caregiving.

I often vented here, too! We need to be able to do that, especially during those times of uncertainty, when we are overwhelmed by all the conflicting demands of caregiving, and, for me, those times of worrying if I was making a 'correct' decision on care, what needed to be done, etc.

I'm happy to answer any questions you might have. I know every patient, their disease, journey, and the work of each caregiver is unique, but by sharing we can ease our burdens and help each other with suggestions, hacks, and often most importantly giving you a place to vent freely!

Strength, Courage, and Peace

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Julie Chitwood | @billchitwood | Mar 14, 2022

Being able to vent really helps me. And a sense of humor!

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 14, 2022
In reply to @billchitwood "Being able to vent really helps me. And a sense of humor!" + (show)
@billchitwood

Being able to vent really helps me. And a sense of humor!

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It sure does, doesn't it @billchitwood One of the many benefits of Connect!

My wife and I really struggled with our house and ironically our HOA as well! I almost lost my stuff the day they called me and complained that the car one of my wife's nurses drove that day was not 'appropriate for the neighborhood'!

I hope your pending move and its related issues go well!

Strength, Courage, & Peace

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2 replies
Julie Chitwood | @billchitwood | Mar 15, 2022
In reply to @IndianaScott "It sure does, doesn't it @billchitwood One of the many benefits of Connect! My wife and..." + (show)
@IndianaScott

It sure does, doesn't it @billchitwood One of the many benefits of Connect!

My wife and I really struggled with our house and ironically our HOA as well! I almost lost my stuff the day they called me and complained that the car one of my wife's nurses drove that day was not 'appropriate for the neighborhood'!

I hope your pending move and its related issues go well!

Strength, Courage, & Peace

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The other day Bill got really mad at me and I couldn't figure out why. After asking a few questions he blurted out that I no longer did as much for him as before. Considering I was now doing more I asked him just what it was that I wasn't doing? He couldn't think of any thing and then said in an injured tone - 'I pee and poop for myself. And I take my own shower!'
I did keep from laughing as I assured him that he had always done those things for himself and I was so glad that he still could manage them. At that he smiled and went back to fighting with his computer.

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 15, 2022
In reply to @billchitwood "The other day Bill got really mad at me and I couldn't figure out why. After..." + (show)
@billchitwood

The other day Bill got really mad at me and I couldn't figure out why. After asking a few questions he blurted out that I no longer did as much for him as before. Considering I was now doing more I asked him just what it was that I wasn't doing? He couldn't think of any thing and then said in an injured tone - 'I pee and poop for myself. And I take my own shower!'
I did keep from laughing as I assured him that he had always done those things for himself and I was so glad that he still could manage them. At that he smiled and went back to fighting with his computer.

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Good day, @billchitwood We take our victories wherever we can, right? Glad that elicited a smile. Your story brought a memory to my mind.

During one point in my wife's war, after she'd been in a coma for a few weeks, she could no longer swallow. The hospital staff brought on the Thicken. My wife so hated how intensely sweet it was that she swore off anything sweet after that. A couple years later our daughter was visiting and brought a small container of my favorite ice cream for me (Graeters black raspberry chocolate chip). After our meal, our daughter pleaded, over and over, with her mom to take just a tiny taste. My wife finally relented and said she'd lick the spoon. Both my daughter and I burst into tears at the incredible smile that spread across her face. Truth be told as I typed this I cried again at the memory. It was one of the last smiles I ever saw on her face and was worth more than a king's ransom.

Strength, Courage, & Peace

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1 reply
Julie Chitwood | @billchitwood | Mar 15, 2022
In reply to @IndianaScott "Good day, @billchitwood We take our victories wherever we can, right? Glad that elicited a smile...." + (show)
@IndianaScott

Good day, @billchitwood We take our victories wherever we can, right? Glad that elicited a smile. Your story brought a memory to my mind.

During one point in my wife's war, after she'd been in a coma for a few weeks, she could no longer swallow. The hospital staff brought on the Thicken. My wife so hated how intensely sweet it was that she swore off anything sweet after that. A couple years later our daughter was visiting and brought a small container of my favorite ice cream for me (Graeters black raspberry chocolate chip). After our meal, our daughter pleaded, over and over, with her mom to take just a tiny taste. My wife finally relented and said she'd lick the spoon. Both my daughter and I burst into tears at the incredible smile that spread across her face. Truth be told as I typed this I cried again at the memory. It was one of the last smiles I ever saw on her face and was worth more than a king's ransom.

Strength, Courage, & Peace

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So glad your daughter persisted. Smiles are the most wonderful things. So missed them with everyone wearing masks!

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