Caregiving and Reality

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!

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

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.

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!

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!