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.

babykay | @babykay | Jun 28, 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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Try to be patient but I know that it must be hard on me. Prayers your way. Marilyn

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Teri | @tsc | Jun 28, 2023
In reply to @babykay "I forget things and when I ask for help when trying to balance my checkbook a..." + (show)
@babykay

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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That's terrible and mean, @babykay. Do you have a close and trusted friend who can help you?

The Alzheimer's Association has a help line that I've heard is good. It operates 365 days of the year, 24 hours a day, seven days a week. 1-800-272-3900. Maybe they can offer some suggestions.

I take care of my husband who has Alzheimer's Disease, symptoms of which I first noticed about six years ago.

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larryg333 | @larryg333 | Jun 28, 2023

@IndianaScott -- Loved that post, Scott.

Thanks alot for making me cry tears of joy this Wednesday afternoon.

/LarryG

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joyd3 | @joyd3 | Jul 3, 2023

Anncgrl, instead of hurting yourself trying to lift your husband have you tried calling your local fire department? They will come out and help get him back into bed. Just tell them it’s not a life emergency but you can’t get him up. The other forum I’m on several ladies have mentioned having to do that. One lady said she had called so many times that knew her name and just what she needed.

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larryg333 | @larryg333 | Jul 4, 2023

@joyd3 -- Does your local fire department charge you for that type of visit?

/LarryG

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1 reply
joyd3 | @joyd3 | Jul 4, 2023
In reply to @larryg333 "@joyd3 -- Does your local fire department charge you for that type of visit? /LarryG" + (show)
@larryg333

@joyd3 -- Does your local fire department charge you for that type of visit?

/LarryG

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Larry they do not because it’s not a life threatening call. We actually live out in the county and they are very nice people. One of the guys told me his grandfather has Alzheimer’s and truly understands what so many of us are going through.

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robertkem1 | @robertkem1 | Jul 5, 2023

Thank you for being real as my journey with my wife will travel down a similar road with her Frontal Temporal Lobe dementia.
You account is graphic but helpful for me to think ahead as to my future as caregiver for my wife.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 5, 2023
In reply to @robertkem1 "Thank you for being real as my journey with my wife will travel down a similar..." + (show)
@robertkem1

Thank you for being real as my journey with my wife will travel down a similar road with her Frontal Temporal Lobe dementia.
You account is graphic but helpful for me to think ahead as to my future as caregiver for my wife.

Jump to this post

Good morning, @robertkem1 My daughter’s father-in-law was recently diagnosed with Frontal Temporal Lobe Dementia. This loving man had been showing signs of withdrawal contrary with his usually dynamic and emotional involvement with family and friends. Finally his wife was able to encourage him to see his doctor and after a subsequent trip to Mayo, he had a diagnosis.

But just because it now has a name, hasn’t changed the sad outcome of this debilitating condition. The impact it’s having on his wife of 40+ years and family is devastating. She’s in mourning for the loss of her husband even though he is still with her. He can function fine with daily activities, shopping and even travels solo. But there is no empathy or emotional reactions at all…going through life like an automaton.

I’m so sorry to hear your wife has this condition as well. There seems to be very little known about the whys and whats, making it difficult to be able to find caregiver support from other loved ones going through the same feeling of helplessness and loss.

The doctors and therapists have suggested therapies to help slow the cognitive decline such as speech therapy, memory reinforcement and have offered to enroll him in a trial program. Getting him to accept has been an ongoing challenge to the frustration of his family.

Is your wife working with a therapist?

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gizzmo | @gizzmo | Jul 18, 2023

My son is a fireman and they get called to do lift assist a lot for people needing help. n fact I just needed it once a few weeks ago I just couldn't get my husband up and sure couldn't hurt myself trying then what would I do? They were super nice and said call anytime that is what they are here for.

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katrina123 | @katrina123 | Jul 18, 2023

Oh My Goodness!
Is this what I have to look forward to?
How long did it take for your loved one to go from diagnosis to being incontinent?

I am so sorry for you that you are going through this. I can't imagine what it must be like.

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