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.

marye2 | @marye2 | Jul 18, 2023
In reply to @IndianaScott "Hello @anncgrl Nice to e-meet you here. I am sorry to hear of your caregiving travails...." + (show)
@IndianaScott

Hello @anncgrl Nice to e-meet you here. I am sorry to hear of your caregiving travails. You are totally correct! Caregiving ain't for wimps and it is often overwhelming when conflicting demands all fall on the caregiver at the same time. Seems to happen all too often!

I was one of the secondary caregivers for my MIL who had frontal temporal dementia and the primary caregiver for my wife for 14 years while she fought brain cancer, which gave her many dementia-like symptoms. I am not a medical professional in any way, shape, or form so what I say I only say from the perspective of a fellow caregiver.

In our case we did a couple of things around the stage you are at. First was to get a hospital bed to help contain my wife. We did one of the air mattress variety and while she was very upset at first, we had the hospice nurse tell her it was 'doctor's orders' and she accepted it. Made a huge difference and kept her safer by far.

One of the other things we did was introduce adult diapers and cut down on the layers of clothing. Easy on, easier off was my mantra. I also introduced drip pads on the floor next to the bed and in front of the toilet. Our hospice folks provided them for us by the packet and they were a godsend for easier clean up.

I heard the same warning from our nurses and kept hand soap on every sink, hand sanitizer on every counter. Still have bottles of the stuff hanging around the house, but no one who visited ever got ill nor did I. Caregiving is tough, caregiving when the caregiver is sick is nigh near impossible, so good for following that advice!

I am writing this at 3 am --- I still am up most nights as my body clock hasn't given up my caregiving routine yet. My wife has been gone 6 months now, but my GP says having been on a goofy schedule for so long it might take me quite awhile to reset my clock because I don't want to take any sleeps aids of any kind.

Remember this: "Courage does not always roar. Sometimes courage is the quite voice at the end of the day simply saying 'I will try again tomorrow.'"

Sending peace, strength, and courage!

Jump to this post

I feel you on the incontinence. I deal with a lot of poo. My husband is willing to wear the depends, but they do not have the padding in the back where he also needs it. However--for sleep, visit a Sleep Doctor. Mine hooked me up with Dr Michael Brandner who helped me with cognitive therapy! Over time, my schedule had gotten peculiar, so this was a relief. I kept a diary (he provided a spreadsheet) and we analyzed it from there. I am now fine the great majority of the time. https://www.youtube.com/watch?v=4yJL8PNqykE

REPLY
1 reply
pattyinal | @pattyinal | Jul 23, 2023

Annegrl, I am SO sorry. It’s for certain that a care partner’s work is never done. I do have a few suggestions that may or may not he helpful.
I found Sensi disposable briefs to be far more absorbent than any I could buy locally and my husband, who was very resistant to being changed, NEVER once got a rash or sores. His skin remained very healthy. I ordered them from Amazon, worth every penny.
Regarding the loose stools, I know several people, including my dad, whose medication was the culprit there, especially Aricept. I encourage you to consult his doctor.
And, when my husband fell and we couldn’t get him up, and didn’t have help, I called the fire department, explained that it was not an emergency but did need help if someone was available, they sent a team out at no charge.
Blessings to you. This group and local support groups, possibly through your local Area Agency on Aging, can be a lifeline. Reach out.

REPLY
1 reply
msealey | @msealey | Jul 24, 2023
In reply to @marye2 "I feel you on the incontinence. I deal with a lot of poo. My husband is..." + (show)
@marye2

I feel you on the incontinence. I deal with a lot of poo. My husband is willing to wear the depends, but they do not have the padding in the back where he also needs it. However--for sleep, visit a Sleep Doctor. Mine hooked me up with Dr Michael Brandner who helped me with cognitive therapy! Over time, my schedule had gotten peculiar, so this was a relief. I kept a diary (he provided a spreadsheet) and we analyzed it from there. I am now fine the great majority of the time. https://www.youtube.com/watch?v=4yJL8PNqykE

Jump to this post

I buy guards and put them in the back of the Depends. Helps with leakage of the poo and even helps with urine depending on how he’s sitting or laying down.

REPLY
Kim Webb | @mrjohnwebb | Jul 24, 2023
In reply to @pattyinal "Annegrl, I am SO sorry. It’s for certain that a care partner’s work is never done...." + (show)
@pattyinal

Annegrl, I am SO sorry. It’s for certain that a care partner’s work is never done. I do have a few suggestions that may or may not he helpful.
I found Sensi disposable briefs to be far more absorbent than any I could buy locally and my husband, who was very resistant to being changed, NEVER once got a rash or sores. His skin remained very healthy. I ordered them from Amazon, worth every penny.
Regarding the loose stools, I know several people, including my dad, whose medication was the culprit there, especially Aricept. I encourage you to consult his doctor.
And, when my husband fell and we couldn’t get him up, and didn’t have help, I called the fire department, explained that it was not an emergency but did need help if someone was available, they sent a team out at no charge.
Blessings to you. This group and local support groups, possibly through your local Area Agency on Aging, can be a lifeline. Reach out.

Jump to this post

Thanks for the terrific info. Just to clarify, did you mean “Seni” briefs?

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marye2 | @marye2 | Jul 24, 2023

I'll have to look into those. thanks for the advice.

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katrina123 | @katrina123 | Jul 24, 2023

This topic is very scary to me. My husband is not having incontinence issues but if he does it could be very dangerous for me because I have a serious primary immune disease. I am trying to not think about it and just take one day at a time but it is so difficult. My husband was diagnosed with Alzheimer's with hallucinations 4 months ago.
I am so sorry for what you all are going through. It's heartbreaking.

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labgirl | @labgirl | Jul 29, 2023

I thought that my situation as caregiver/spouse/companion was tough, but reading about your experiences breaks my heart.
You are doing all of the right things and have gone above and beyond what most of us could tolerate.
May God bless you with strength, internal peace, and relief from some of the challenges you face. Keep praying.

REPLY
anncgrl | @anncgrl | Jul 29, 2023

I have been absent from these Mayo Clinic groups for a long while. My husband passed away on July 2019 while in our local hospice house.
COVID came and went and life got weird for me as it did for most of us.
Four years after Robert’s passing and I am still recovering physically from years of caregiving.
I will never be able to adequately express my gratitude to each of you who replied to my post. I continue to participate in a Facebook group related specifically to caregivers of people diagnosed with fronto-temporal dementia. I want to share what worked for me during the years Robert was alive. I learned more in chat groups than I could possibly learn from doctors, etc. God bless each of you!

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 4, 2023
In reply to @anncgrl "I have been absent from these Mayo Clinic groups for a long while. My husband passed..." + (show)
@anncgrl

I have been absent from these Mayo Clinic groups for a long while. My husband passed away on July 2019 while in our local hospice house.
COVID came and went and life got weird for me as it did for most of us.
Four years after Robert’s passing and I am still recovering physically from years of caregiving.
I will never be able to adequately express my gratitude to each of you who replied to my post. I continue to participate in a Facebook group related specifically to caregivers of people diagnosed with fronto-temporal dementia. I want to share what worked for me during the years Robert was alive. I learned more in chat groups than I could possibly learn from doctors, etc. God bless each of you!

Jump to this post

@anncgrl I’m so sorry that your husband died. I can really understand your exhaustion from caregiving. You’ve connected with a Facebook caregiving group, but could you also stay with this group? I’m sure you have lots of advice and suggestions for this group.
Will you think about it?

REPLY
clkurth | @clkurth | Aug 5, 2023
In reply to @anncgrl "I have been absent from these Mayo Clinic groups for a long while. My husband passed..." + (show)
@anncgrl

I have been absent from these Mayo Clinic groups for a long while. My husband passed away on July 2019 while in our local hospice house.
COVID came and went and life got weird for me as it did for most of us.
Four years after Robert’s passing and I am still recovering physically from years of caregiving.
I will never be able to adequately express my gratitude to each of you who replied to my post. I continue to participate in a Facebook group related specifically to caregivers of people diagnosed with fronto-temporal dementia. I want to share what worked for me during the years Robert was alive. I learned more in chat groups than I could possibly learn from doctors, etc. God bless each of you!

Jump to this post

Now it’s time to take care of yourself, making YOU a priority. Your husband would want this for you.

Blessings 🙏

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