[hkohlman]

hi all its been awhile since u have seen a post from me. Very busy I have been. For those of you that dont know me here is a quick update.

I am a caregiver. My Dad is 65 years old and has had the death sentence disease for about 1 year now. Every day is different at this stage. Until today he was housebound for 20 days because he could not do stairs anymore. We built a ramp over the weekend just in time for the phone call that my Moms mom my grandma died today. So here we are a ramp and not sure how it would work. We brought in the wheel chair because walking wears him out so much. He was not very happy that we had to use it of course because he is so stubborn. The wheel chair and ramp was great until we went to get him in the car. What a pain that was. OH and of course all his equipment to manage at home still had to be taken also. All I know is they need a larger car to fit everything. well I am a mess right now so I guess I better go. I think this will be a long week ahead.

hope all of you are better than me right now!

Bye Heather

[paula B]

Hi Heather,
Sounds like its time for your family to get a van. Sorry about your Grandma.
Take care and good luck

PaulaB

[♥ Al]

Hi Heather. Try to remember one day at a time. Looking at a long week will surely make it one. One day at a time is more manageable and not nearly as depressing. Try to do something nice for yourself even if it's only to take 15 minutes alone and get yourself an ice cream. Take care.
AL.

[Frizzel]

Hi Heather. You were heard that it's tough for you right now.

Yup, start looking for a van. We found one for $1000 with a lift. It's a 1992 and with some elbow grease, cleaned up pretty darn good. Even bought a 4 wheel drive scooter at a yard sale that fits right in. I didn't want to use our insurance for a chair that I may not be able to use in a couple of years. Als' suggestion! Thanks Al! So this is what we decided.

There are so many emotions with this disease...sometimes we need breaks from each other.

I like the idea Al gave of an icecream or possibly a lemon aide with ice tea break. (that's what I like Al) For me, I like to know I can still do some things. So friends and family drop by for my muffins or cake.

Can you find a way to be honest with how he's acting toward you and your family while still hearing that you know he is struggling with his own stuff around the ALS? I use to tell my dad when he'd stay onery, "I'll be back when you've had time to grump out." THen I'd give him a hug and leave for a while.

Our daughter told me to sit down and tell her what I wanted done (she cleaned out my closet) so she could get it done faster. So I sat, she cleaned and we chatted. That was hard for me at first but it worked for both of us in the big picture.

Good job caring for your dad Heather!

[lunarruna]

Hi Heather...
See under Events Section about the ALS conference in Missoula, if you are interested...other Montana folks on this site too now!
Good Luck with your recent trials....Beth

[hkohlman]

Hey everyone, thanks for the great support. Just a update for you!

The docs are clueless about my dads progression. They are taking it one day at a time also.

My sister lives outside of Denver. She contacted the ALS foundation there and has learned that they will help us out since she lives there and can pick up and deliver what we would need to borrow. They are loaning us a moterized wheel chair so we dont have to use the insurance or pay for it ourselves. This is really good news since montana has no ALS foundation to speak of yet.

Hey Beth, I heard of the missoula event but will not be attending. I will be staying with my dad that weekend so my mom can go to Bozeman and care for her dad. I have met some of the others from montana.

Take care all of you! As annie would say " The sun will come out tomorrow"