FTD Fronto-Temporal Degeneration
Non-Alzheimer's type dementias present and are treated differently. FTD is commonly misdiagnosed, causing more frustration. Share your story!
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Shirley C said...
8 days ago
Hello Everyone-I haven't posted anything in a while. Last post was about my husband's Worsening behaviors. Anger, threats, and taking off from the house on foot. Tried adjusting meds, and having go to "The Club" adult day care the 4 days a week they are open. Nothing helped and I just couldn't handle him anymore. Had to call 911 to help me get him back home (after having to find him first) several times. He would say how he wanted to punch "that cop" in the nose or how he could "take him down". Raised his fists at me while I'm driving, or trying to jump out of the car, on and on with son living at home (Williams Syndrome). Calling other son out to fight when son found him out walking and said "Dad get in the car and let's go home". Had to at the final straw have him transported to the Dr.,s office and then he was referred to ACE unit (Acute Care for Elderly). He was there for a week seeing another doctor. When time to be discharged the doctor asked me how I felt about him coming home and I said that I honestly can't do it. He said FTD is very difficult and the anger issues with my husband are very much associated. I got a lot of help and support from the Social Workers and the Memory Care Facility that has "The Club" arranged a spot for him in one of their homes. He has been ther for 3 weeks. Thankfully it is a place he is familiar with and he can still go to The Club 4 days a week. The issues have started to re surface though in the past week. So much more to this than I'm posting about right now. Just an update and will be keeping in the loop. Past month it was very difficult. Hope to hear from you
An anonymous caregiver said...
8 days ago
My husband has been symptomatic for frontal lobe atrophy for over seven years. The symptoms have increased so slowly that it was quite a long time before we recognized and admitted that permanent changes were apparent and dramatic. My husband's symptoms began as weakness in his legs and back. which caused him to stumble and fall. He also had confused thinking. The symptoms would be worse at times and then much better. Never a return to normal but enough of a shift that describing his symptoms and getting an accurate diagnosis proved to be challenging. During this time we were at a loss to understand what was happening. After a diagnosis of Parkinson's was proven inaccurate by the neurologist we were left with little hope of a diagnosis. Meanwhile the symptoms were progressing with periods of time when things seemed to be getting better. And so began hospitalization after hospitalization and rehab/nursing home visits to strengthen my husband's legs. Doctors have told us that the good times will occur less and less often and the hard times will last longer and worsen. At this point many of the emotional and memory symptoms are also in play. He spent two two weeks eating very little and drinking very little. Now he is hungry and thirsty but not for foods he use to enjoy. He sleeps about 18 hours a day. I am home or close by. He wears Depends and goes through times when he feels the urge to urinate and times when he does not feel it and wets the bed. I need to work about 20 hours a week to supplement our income but I cannot because the level of care needed fluctuates so dramatically. I am seeking assistance through DSS and a program called CAPs which will pay me to be a caretaker of my husband and provide support services. My goal is to keep him home as long as possible.I have long since failed to pay attention to our business matters unless they are critical. I don't have the emotional energy.and I will clean up the mess when my husband passes. I have grieved the loss of my husband's company. We can talk and have a laugh but he is often lacking in empathy or sentimentality. This journey is incredibly difficult. I pray that each family coping with all the insanity finds some peace of mind. More to come later... ' '
I have a dilemma - will DH who is showing signs of dementia and in the process of getting diagnosed, benefit from attending a Carers Support Group with me to learn about his Mum's condition and how to help her?
This would be solely to deal with her issues, not his -unless he felt like sharing ... Unlikely at this stage (although I would benefit I'm sure!!)
They seem to have different forms and he doesn't see her in himself! Or will it be harder for him?
Although I believe he has the bvftd component of no self awareness.
With MIL likely to be diagnosed with mild-moderate dementia pretty soon based on the mini mental assessment and what we've been witnessing I am tempted to start attending a local Carers Support Group WITH DH.
He is interested in helping his Mum. Although some things he can't grasp - 'if she needs to learn to use a walking frame we'll just MAKE her learn how - drive it into her .... It's important etc'. Even though I've explained that sometimes the part of the brain that learns new things doesn't work like that any more.
Coming from someone else it has always been more effective!
I'm so torn, but want to do what's best for both of them. I think DH would benefit from the information.
Thanks in advance
Today was "interesting".
We started getting Mum in Law tested because she has started losing her balance. We know she has dementia of some sort and she is getting more frail this year. Recently she has started falling, or nearly falling. So start the tests.
Today was the general over 75 test with mini-mental and she failed the short term memory stuff - couldn't recall 3 words, or repeat them back, couldn't copy an image of 2 shapes and couldn't write a short sentence (we picked "my name is ..".) She named items as they were pointed out, knows they day and date though.
Also has blocked ears which we are now putting softening stuff in, for syringing next week, plus eye tests and blood tests tomorrow. Then referral to a fall clinic in the near future .... She's happy and not at all aware of what the test was about. So calm and placid.
Unfortunately (or fortunately?) DH didn't come in with his mum for the testing, he took his dad to a coffee shop. So now he says she didn't do so well because of the pressure of being tested! And that the whole family has that problem! Ack.
he's all about " making her learn" to use a walking frame. 'Well, she'll just have to learn. We'll drive it into her'. double ack!
I've tried explaining that the part of her brain that learns new things isn't working so we can't force her to learn something - it might just upset her and make it worse .... He just can't understand it because of his cognitive issues
Last night DH and I had the weirdest conversation - I felt like I entered thr twilight zone!
We had a lovely dinner out celebrating his birthday and our 22nd anniversary (defacto) which is later in the week.
He held my hand and said he was sorry for being a bit difficult over the past 2 years and that now things will be better.
He has NEVER apologised ever and it is the first time he has recognised things might have been even remotely difficult for me! wow - I was stunned, said thank you and have been waiting for any reverting to 'normal' - all has been good today!
I even heard him telling an old school friend about his 'memory problems' today - quite openly.
I'm enjoying the moment - not sure what to make of this change at all!
This poem is dedicated to all of us who are in this boat Thank you guys for helping me write again x (hugs)
The Long Goodbye
When one of two becomes the soul keeper of memories shared no longer
When one grows up, while one grows down intimacy fading a life together stolen
A shrinking, eggshell covered world of swings and roundabouts snakes and ladders
Mental potholes and minefields
But music makes me happy and ocean song soothes for a while embrace the moments of calm while you can
Nancy said it best
The longest goodbye © 2016 Katherine Buchanan
Thankyou everyone X
Shirley C said...
2 months ago
I haven't posted in quite some time. Husband has FTD. Diagnosed about 2 1/2 years ago. Update-now having delusional thoughts, bizaar accusations example-Ipushed him out of the car as we were driving. Also threats of beating the s### out of my 42 year old son with Williams Syndrome. Has 4 times taken off from the house (not wandering) but some imagined event. I've called 911 twice. One time said he wanted to punch the officer in the nose. Today again-police called and said he wanted me to pick him up. Thank goodness my other son went with me. Last time it took me 1 1/2 hours to get him in the house. He said he didn't know where he was going-maybe a bridge to hide under. I told him ther are probably some not very nice people there and he told me then he'd probably have to kill someone. I'm a wreck. He is not safe to others or himself. Dr put him on Seroquel. I'm seriously thinking about Memory Care. He goes to a Day Program at this particular Memory Care Facility and does better on those days (while he's there). Anyone experience this type of behavior? I'm on edge and numb all at once. Thanks for any input
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