Caregiving and Reality

Ditto. Sometimes the day gets so busy, I say "Shucks, I didn't even get a walk done." Then I remember I did go for a walk early in the morning and it makes me smile. The morning seems like it was eons ago.
Today is a lucky day. I'm going to go for a second walk right now in the falling snow.

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!

@anncgrl, my mom has been bedridden for about 13 months now and we use one of the air mattresses on her hospital bed. It does make it difficult to tuck in sheets (which she likes to play with), but she hasn't had one bed sore because the air is constantly moving in the air mattress. We were able to get the bed and mattress "free" when she was on hospice. When she went off, we purchased both pieces at a good discounted price. I highly recommend an air mattress!

Hi @anncgrl,

You'll see that I moved your message to this discussion group, as I noticed there was a bit of confusion with multiple messages; but all is good now!

I think it's a saving grace, when we can find humor in our everyday struggles.
With Frontotemporal Dementia (FTD) it is important for caregivers and families to think about long-term management issues, especially with difficult medical, financial and emotional challenges. I wonder if @ilene1, @donnajane, @lindabf, @mftucker, @sallysue, @pearlandpeacock, @kmkm, @macbeth, @tsoy, @annie33, would also join in here with some insight?

You are a brave and good spirited soul going through this !! I have one who is 3.5 yrs into frontal lobe damage. After his carotid stroke 3 parts of his right frontal lobe were affected. He was so nasty that a psychiatrist was sent to evaluate him. No cooperation. I try to realize that these are still the good days. I see his anxiety and unease in new or different situations. A noisy, crowded restaurant for example. I give thanks I can be at his side to calm, reassure and just plain love him. We had 20 good years. I am grateful and pray for strength and peace for all of us, we truly are in this together! I applaud your bravery and humor!! Take care, you are his caregiver and the wind beneath his wings.

I can't tell where you moved me although I assume it is the FTD discussion group. Please move me or let me know if I need to make any changes that will work better.
I think I have adjusted to a long stretch of ups and downs. I know the future will bring increasingly difficult challenges. Every professional we have met who understands FTD is clear on that point. A couple of doctors have been tender towards me. Their empathy told me more than words about the future with FTD. I suspect my life is being impacted deeply at this point but it all feels normal I have listened to talks on YouTube, read medical reports online and been told by our doctors that the progression is awful for both of us. I find the most difficult part, by far, is the slow loss of my husband mentally and emotionally. He tried his best to seem his old self last week when we went to see one of his doctors. I thought I would burst into tears. Being powerless to stop this progression takes my breath away. I choose not to stare at that part and to focus on this moment and then the next moment. Anyway, that is enough for this post.

Much love to each of you.

I admire and applaud your brave and upbeat approach, choosing to make lemonade from lemons. I too have a frontal lobe injured spouse but choose to be grateful for those good moments and memories. Presently I am searching in Sarasota, Fl for a Neuro specialist in this particular form of dementia. Wish me luck. We have some brilliant physicians here, but I need the right brilliant one!

I'm here for you but don't have a lot of insight. I am at a plateau right now with my sister . Plus she sleeps like a rock at night. We need to count our blessing for the things that go well and accept the struggle trying new things to solve our problems. People are very helpful on this site that's for sure.

I was in a chat last night that was only with people who are caregivers for people with FTD. It was an interesting time, to say the least, and I came away from it realizing that most of us struggle to find any medical help that includes a clear understanding of what we are encountering on a daily basis. I applaud your search for a brilliant neurologist. I have not met such a one yet. We are fortunate that my husband's primary care doctor seems to have a full understanding as does my primary care doctor. The neurologists basically told us, after the diagnosis (another story by itself) that there is nothing further they can do to help us. They meant in terms of a cure or facilitating a regression or even a stalemate. There are, of course, many recommendations for exercise, organization, socialization, etc. My husband is not interested in any of those things. He is not mad about it either, thank goodness. I find the AFTD website to have much information, resources, etc.
My husband sleeps about 17 hours a day and is also at a plateau right now. I agree with sallysue when she says acceptance is the key.
God bless you in your search and please stay close to us.

Thank you so much. It's so good to communicate with others rowing the same boat. Will let you and everyone know when I locate a Neuro specialist who can relate to this "new normal" world we are living in.