Exhausted Newbie

[Momof4girls]

I have just discovered this forum and I am thinking this may help me keep my sanity! I am the primary caregiver for my father. In the last 7 days, he has been diagnosed ALS. We have spent 4 months of running from dr. to another test and on to another dr. Now I have brought him home from the hospital with a feeding tube & am feeling completely overwhelmed. I think I may be in over my head!

 

[vzandt]

Take a breath. Welcome to our club. It sucks to have to be here but these people will help you so much. It is overwhelming. But things do calm down a bit. Its a new normal. My husband has ALS. I am his caregiver. I am very sorry about your dad
You can ask questions...vent...laugh..and cry here. We are all in the same boat. We know what your going thru.

 

[momap53]

Welcome to the forums. So sorry about your Dad's DX. You'll find a wealth of info here in our archives and a great support network.

 

[ottawa girl]

Hello and welcome -

You're feeling overwhelmed - that's probably an understatement right? I hope you live nearby an ALS clinic where you can get information and get your Dad everything he needs. Sounds like you haven't had any time at all to "get used" to this new reality. (Not that we get actually get used to it...) The CALS here are phenomenal people - and are exceedingly knowledgeable. You will find help here.

You sound like a loving and devoted daughter- I wish you and your family all the best.

 

[WellsRuby]

Welcome to the forum and sorry that you find yourself here. This is a great group for support and lots of information can be found here.

 

[panguinjen]

Mom,
You are in over your head, but we are here to help! Glad your dad has his tube! In the long run it will make things easier for you...I can tell you that this group has saved my sanity daily, kept me from drowning in tears, makes me laugh out loud and gives me an anchor... Welcome, visit when you can!

Jen

 

[WellsRuby]

Well said Jen, exactly how I feel.

 

[HelenL]

We're all overwhelmed at times, but this place helps keep our sanity, knowing we're not alone, and making new friends who help us out on our journey. Welcome to the forum family, sorry you had to find us...

 

[Momof4girls]

Thank you all for the kind words. Don't know how much I will post, but just reading through some of the threads have answered some of the many questions. Sure there are many more to come! Dad is taking everything with an "It is what it is & We can't change it" attitude. I on the other hand, have gone from angry to just plain sad. Does the emotional roller coaster ever at least slow down? I'm not a crier very often & in the last 9 days I think I have cried more than I have in the last 10 yrs. He has spent the last 44 yrs. as an OTR truck driver. Now when he was ready to retire in a few months & spend his retired years fishing. This is the hand he's dealt. It just doesn't seems fair

 

[panguinjen]

It's not fair... Some, like me, cry every day (15 minute pity party), pull on our big girl panties and muscle through with the help of each other. Join us whenever you can, for lightness visit the tea table or whine and cheese in the off topic section....you can rant or rave there as well! Your dad's attitude is my hubby's attitude....

Jen

 

[Momof4girls]

Thanks. Think I'll have my 15 min. & then go do another tube feeding!

 

[panguinjen]

With planning, he can still go fishing.... Is his food formula? Are you using drip bags or syringes? If so, once his opening heals a bit and you have a routine in place, go fishing... What else is on his bucket list?

Jen

 

[momap53]

You are grieving. Your emotions will go up and down, back and forth. It's normal.
Some folks ask their Docs for an RX to help them cope.
Arrange for help early and try to take care of yourself.
Please join us here whenever you need to.

 

[Atsugi]

I'M A BIG FAN of anything that gets you through the nights. My doctors were very good providing anti-depressants and anti-anxiety meds. I kept a supply of 5 Hour Energy nearby and always had a pillow to nap whenever I could. I slept next to my PALS most nights, and kept a video baby monitor on her at all times so my son and I good hear and see anytime she needed help in the night.

Don't be shy. Post often in the Current PALS area, even if for no reason.

 

[Barbie]

You should call your local ALS association branch and have a caseworrker come out to your house to talk with you and your dad. they will be able to tell you about services available and loaner equipment. Lots of good and practical advice on this forum of course. Good luck to you!