Preaching to the Choir....

[shelleynshaggy]

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."

 

[hopingforcure]

You can always share with us. We get it.. I am having a time like you are now. Wish we could meet up and share. i think writing it, and sharing is therapy. I so hope that you have a lovely time in Disney.. Go make memories, enjoy, any churches, or charities in your area that would hlep with the costs. Could you talk to the Vet's office for a payment plan? Or maybe an anumal organization. I think anyone that would hear what your dealing with would help. I wish I could be a millionare if just for this forum alone. Ok let me make it a billionaire and maybe have enough to cure als.. I sure hpe your dad comes to his senses, and hopefully he will. You are a sweet lady, who si doing a lot, you are respected for this. My heart is with you, may you get some much needed relaxation.

 

[Zaphoon]

Shelley,

As a dedicated forum choir member, I read the whole thing and really feel your frustration in all you are going through. For what it's worth, I'm rooting for you!

 

[t34gib]

Go and try to have a good time at Disney. Make sure everyone knows that you are in charge and they cannot run in three directions. Take your time and enjoy it. I am an hour and a half away. Send an SOS if you need help. lol

 

[brooksea]

Shelley,

I read your whole post and hope you are able to go to Disney and have a good time.

It seems each of us are dealt with family members that either have no clue or don't care. I am sorry for what you are going through. I really hope your father will reconsider and that both your parents will put aside their differences to help y'all out.

Hope the sun will be shining and y'all will be smiling on your trip to Disney!

 

[BethU]

Hang in there. No solution, just hugs and prayers (and a good swift kick for your dad).

 

[Twinsmom]

Yet another choir member who read your entire note. No tidbits on how to handle it all...just continue doing what you're doing. Continue to make moments for your children, husband and yourself...And take your meds

Peace,
Melody

 

[kelly]

I read your note and am praying that you can find happiness at Disney. I understand you are doing it alone..and you have every right in the world to be frustrated, maddened, saddened, angered, overwhelmed.....and just plain numb. You have so much on your plate right now. I know that venting does not take the problems away..but it sure does help at times! Stay Strong.....take a deep breath...
Thinking of you!

 

[shelleynshaggy]

Thank you so much everyone - to get such a response so fast is really great. (Yes it did start the tears a flowin' - but that's a good thing!)

Dad I think is frustrated because he is having hip replacement in a few weeks. Whenever an expense of any kind comes up he freaks out - he is 74 - I think he believes he'll take his $$ with him. Not that I'm saying "spend it on me" - but we can't even convince him to go to in pateint rehab because it will cost to much! (I keep telling him - great then fall, break the other hip and you'll save a lot!) There is no reasoning with him - never has been - never will be. I seriously think he is developing a bit of dementia himself. Part of the problem is he & mom are in two total different stages of life - she is only 57 and still works 5-6 days/week.

The shock of Jim not driving so suddenly I think really got to him ... we keep making plans for these changes ... but they are plans for the future not NOW.

I think what pisses me off most is that of everyone in my family I think he should understand the most. He lost his 1st wife in their 20's to Lupus and his 2nd daughter shortly after. He KNOWS how it is to have a spouse (and God forbid a child) with a terminal illness while still having young kids. When his wife died he had 2 young girls to attend to - not easy for a man in the early to mid 1960's. I just feel that he should GET IT!

Thank you all for your responses - I REALLY appreciate them.

 

[indigosd]

Shelly, I am singing the chorus line! DW will be much needed MAGIC and escape :] Cj is so right-we ALL have genetic family that we wish we could divorce. Thinking of you and sending hugs. Kay Marie

 

[DebbieR]

Shelly,
So sorry for all your going through. Thinking of you and hoping today is a much much better day. Hopefully the trip to Disney World will give you the escape that you so need. Sending hugs!

 

[paleshia]

bring on disney! i will pray for sunny days and fun all around. you sure do need it. this is so tough. praying for you guys.

 

[crystalkk]

You can rant anytime...yes, I did read the whole thing.
Please enjoy your Disney trip, you could definately use it. By the way "there are no adults in disney"

 

[Al]

Yes I read it alll too. Feel free to rant when the need arises. We understand.

AL.

 

[DgtofTNfan]

I read it all too. Thanks for including me in the choir because really, I can't sing.
Thinking of you!