What a difference a year makes

shelleynshaggy · 10-27-2009, 10:35 PM

Just looking back at the last year -

Today my hubby and girls were out raking leaves and playing in the piles and I realized - that was the start of this incredible journey.

Tough in hindsight his FTD symptoms started 2-3 years ago, a year ago was the "eye-opener." While raking leaves Ruthie (then 18mos) ran out into the street in front of our neighbors car. Jim didn't react - he just stood there with that blank look (anyone who has dealt with FTD/dementia knows the one.)

That day I insisted he go to the doctor. - The rest as they say is history.

I watched them laughing and playing wondering what next fall would bring. So many changes so fast. I often feel as though he is already gone - gone is the man I married - a boy has taken his place, a 3rd child in many ways.

Today we were folding clothes - he can no longer decide which clothes go to which child. "Honey - who gets the 3T pjs?" "Honey who gets the size 6 jeans? (Never mind they are as long as my 2 yr old is tall!)

Just thinking "out loud" thanks for "listening"

BethU · 10-27-2009, 10:47 PM

It is so hard. There really are no words of consolation. Just ... hang in there.

shelleynshaggy · 10-28-2009, 12:09 AM

Strangely enough, this was an endearing moment - a year ago I was ready to divorce him - if not kill him. Now I understand why he does what he does (or doesn't do). I still have moments I lapse into why can't he or didn't he..... But gone is the tension between us. I see he is trying. He tries to do his best - I love him got that. Gone is the constant "I need to do X,Y,Z or why didn't he do them?" Now I appreciate sitting and watching them play - letting the dishes or laundry sit on one of the last nice days of the year in order to make a memory playing with the kids. The chores will always be there - these moments won't.

(P.S. remind me I said that the next time I am stressed out!!)

Katie C · 10-28-2009, 12:39 AM

Shelley. Sending you lots of hugs. You and I have shared such a similar journey. We too were so close to splitting. It's so frustrating talking to counsellors, therapists (in our case even a dementia specialist!) who just don't get it.. because they don't really know what they're looking at. I actually moved out of our bedroom and into the downstairs room... because something never exactly felt "right" about what was going on.

I know what you mean about the endearing, childlike qualities that come along with the frustrating, childish ones. At least we found each other to remind us that those sweet moments always follow no matter what odd thing they've done that makes us nuts!!

handinhand · 10-28-2009, 12:19 PM

Oh, you both are so caring and loving toward your partner... It is so sad and so sweet to hear what you have to say about them. HUgs to you both , Linda

Gelthling · 10-29-2009, 02:31 AM

I know what you mean about the blank stare - we get it from mum fairly often these days. I'm glad your hubby still plays with the kids - mum gets extremely annoyed by mine as she hates them moving things and is always pointing at me when they pick things up - all three are 4 and under. This week, they were running past her chair in the lounge room and she just went balistic! This is not the Nan they had only a year ago!! Unfortunatley,this disease causes alot more difficulties than just the physical - it's the emotional as well!

Keep the memories flowing girls!!

sjpowers51 · 11-08-2009, 01:25 PM

I was searching for someone who is also dealing with the FTD (which has been found to be more common then originally thought). My husband seemed to be becoming more and more introverted for a number of years before the dx. I look back now and think, wow it makes so much sense!

He is child-like and ODC but fortunately for us he is sweet and so good natured. I do worry about how he will deal with any sort of assistive devices such as PEG or, IF we decide to go that route a trach? We tried bi-pap and he just couldn't adjust. His judgment is not good as you can imagine. Has anyone dealt with the FTD and assistive device adjustments in a patient with this "dual dx"?

Katie C · 11-08-2009, 02:07 PM

Glen had his bipap for about a week, and actually seemed to be sleeping well with it. We found a mask that he could actually remove himself, so he was very calm with it on. Unfortunately, when they downloaded the info to find settings, etc, there was nothing on it. She said it HAD to have been leaking. Well.. I checked it for leaks and found none but I'm just the dumb spouse, right? What do I know. So she added a humidifier unit... that very day is when my mom started to go downhill, and the thing travelled around in my car for a week because I couldn't be home long enough to help glen with the machine. We have an appointment for a week from Friday to start over. I'll let you know how it goes.

sjpowers51 · 11-08-2009, 07:22 PM

Thanks Katie,

I am looking forward to hearing back from you. It makes me so anxious that I am not doing everything we can. And selfishly, it became a fight between the bi-pap and getting much needed sleep!...

I work fulltime tho am taking 2 hrs a day now FMLA but we still need to sleep right?

Katie C · 11-08-2009, 10:11 PM

Yes... we ABSOLUTELY still need to sleep. Glen & I have separate rooms, dating back to the days before the FTD diagnosis when I was ready to move out.. but where does one go with 2 Golden Retrievers and a cat? When he started using the bipap, I would stay upstairs until he fell asleep then had a baby monitor set up in my room... the bipap got to be like white noise, but I wake up right away if it stops or changes.

Do what you need to do to take care of yourself!!! We cannot be caregivers if we are not well.