shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
I know that I am preaching to the choir on this - but I have been in a rut for awhile now and need to get it off my chest - I am running short on people to turn to here so I am hoping just getting it all down will help.
ALSO - I KNOW THIS IS HORRIBLY LONG - I DON'T EXPECT YOU TO READ IT - JUST NEEDED TO GET IT OUT SOMEWHERE!
First of all, despite our denial, we have realized Jim is not doing quite as well as we would like to kid ourselves. My mom and I thought we saw improvements - that mirage was shattered at the recent ALS clinic visit. Though the immediate progression of his FTD has seemed to slow his ALS is now picking up the pace.
He is still upset about his not being able to drive - he wants retested. I have stopped explaining to him that he didn't fail a driving test - there is no retest and the fact he cannot strap our 2 year old into a carseat is proof enough he can't drive. I have been somewhat successful in arranging rides for him & the girls but it is the loss of freedom - he is going stir crazy.
I feel like I am slipping back into a depression - but not even that - I am numb, almost emotionless. I missed a day of my meds and felt more "alert" but I was jumping off the handle at every tiny little thing. I feel like I just want to cry and that would help to relieve some of this - but the well is dry for right now.
My sisters, one of my biggest supporters are bogged down in their own lives. One lives 6+ hours away - and the other just had a baby on Wednesday - they both have a toddler and an infant now and husbands who are away a lot with work.
My BFF of almost 20 years went to dinner with me to day and let me mope all over and actually talked things out with me. Of course the well sprung a leak and a few tears formed - but then they stopped. She is one of the people I can count to "unload" on. I was a terrific dinner date - NOT.
All this I could probably get over - but then there is Dad. He and my mom are not getting along and I am pulled into the middle. I have always been mom's "favorite" - that is not a secret even to my own sisters - they are twins and had each other - I had mom. Even as adults this stands true. So automatically my dad is pissed at me because he is mad at mom! He no longer wants Jim and I to move in with them. He has always been selfish (even in good times) and I'm not just saying that because I'm mad. Not to air all their dirty laundry too - he is just being an complete a$$. :twisted::roll:
We are getting ready to go to Disney next week - and I feel overwhelmed. Quickly I have realized I am the only adult going on this trip. The excitement I had at the beginning is starting to wane - as I realize the "reason" for this trip. Just in the month since Santa brought our gift I have watched Jim become more week and more limited in his motion. He sometimes struggles just to lift Ruthie, our 2 year old. He no longer is arguing with me over the need for a scooter at the park.
He keeps bugging me about my daughter Mikayla's 6 yr birthday party (her birthday is the week after we get back.) He wants to have it Saturday which is not realistic for me - I work Saturday evening. Between him and the kids worrying about birthday parties and gifts I want to scream (and Ruthie's isn't even until April!)
So as all of this is going on - I realize my dog has an eye issue - she has to have surgery Wednesday which is going to eat up a what was supposed to be Disney money - and of course even though I have "pet insurance" on her - this is not covered. I can't NOT do it - she will loose her sight and probably her eye - and it is something that is correctable - just can't come at a worse time.
Here's to hoping that the Magic of Disney will sweep me away - that there will be no "adults" our trip and I can enjoy myself with out all this baggage for just a week. I am hoping I can leave my worrying behind and just live in the moment for 1 week.
Sometimes (like now) I envy Jim that - not having to worry about it - let someone else do it for me!
SORRY this is so long - and if you made it to this point bless you. And yes I do feel slightly better. I just wish I could force a good cry and relieve some of this "tension."
ALSO - I KNOW THIS IS HORRIBLY LONG - I DON'T EXPECT YOU TO READ IT - JUST NEEDED TO GET IT OUT SOMEWHERE!
First of all, despite our denial, we have realized Jim is not doing quite as well as we would like to kid ourselves. My mom and I thought we saw improvements - that mirage was shattered at the recent ALS clinic visit. Though the immediate progression of his FTD has seemed to slow his ALS is now picking up the pace.
He is still upset about his not being able to drive - he wants retested. I have stopped explaining to him that he didn't fail a driving test - there is no retest and the fact he cannot strap our 2 year old into a carseat is proof enough he can't drive. I have been somewhat successful in arranging rides for him & the girls but it is the loss of freedom - he is going stir crazy.
I feel like I am slipping back into a depression - but not even that - I am numb, almost emotionless. I missed a day of my meds and felt more "alert" but I was jumping off the handle at every tiny little thing. I feel like I just want to cry and that would help to relieve some of this - but the well is dry for right now.
My sisters, one of my biggest supporters are bogged down in their own lives. One lives 6+ hours away - and the other just had a baby on Wednesday - they both have a toddler and an infant now and husbands who are away a lot with work.
My BFF of almost 20 years went to dinner with me to day and let me mope all over and actually talked things out with me. Of course the well sprung a leak and a few tears formed - but then they stopped. She is one of the people I can count to "unload" on. I was a terrific dinner date - NOT.
All this I could probably get over - but then there is Dad. He and my mom are not getting along and I am pulled into the middle. I have always been mom's "favorite" - that is not a secret even to my own sisters - they are twins and had each other - I had mom. Even as adults this stands true. So automatically my dad is pissed at me because he is mad at mom! He no longer wants Jim and I to move in with them. He has always been selfish (even in good times) and I'm not just saying that because I'm mad. Not to air all their dirty laundry too - he is just being an complete a$$. :twisted::roll:
We are getting ready to go to Disney next week - and I feel overwhelmed. Quickly I have realized I am the only adult going on this trip. The excitement I had at the beginning is starting to wane - as I realize the "reason" for this trip. Just in the month since Santa brought our gift I have watched Jim become more week and more limited in his motion. He sometimes struggles just to lift Ruthie, our 2 year old. He no longer is arguing with me over the need for a scooter at the park.
He keeps bugging me about my daughter Mikayla's 6 yr birthday party (her birthday is the week after we get back.) He wants to have it Saturday which is not realistic for me - I work Saturday evening. Between him and the kids worrying about birthday parties and gifts I want to scream (and Ruthie's isn't even until April!)
So as all of this is going on - I realize my dog has an eye issue - she has to have surgery Wednesday which is going to eat up a what was supposed to be Disney money - and of course even though I have "pet insurance" on her - this is not covered. I can't NOT do it - she will loose her sight and probably her eye - and it is something that is correctable - just can't come at a worse time.
Here's to hoping that the Magic of Disney will sweep me away - that there will be no "adults" our trip and I can enjoy myself with out all this baggage for just a week. I am hoping I can leave my worrying behind and just live in the moment for 1 week.
Sometimes (like now) I envy Jim that - not having to worry about it - let someone else do it for me!
SORRY this is so long - and if you made it to this point bless you. And yes I do feel slightly better. I just wish I could force a good cry and relieve some of this "tension."