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I had no support, until I hired a private nurse on my own. The ALS center people were very concerned and always asked about my "state of being" but there was no physical assistance available at all. The visiting nurses we had offered to supply a PT and an OT who were available to come in but all they would do was explain to me how to do range of motion exercises and other things to help Liz. I didn't need more "instruction", I needed someone to do the work. I took care of Liz, four kids and worked a full time job and they expected me to do more? Liz was very understanding and I know she suffered much to try to relieve some the stress. I just can't believe there's no way out there to get some sort of assistance without hiring it privately.
 
pepsiman-
I'm with you there! I was shocked when I first learned that insurance does not cover home health care. I understand why a lawyer told us three years ago that getting divorced was the best financial move we could have made. If my husband qualified for Medicaid he could get home health care. I too work full-time with two kids (I couldn't imagine 4!) and am my husband's caregiver. He has been in a wheelchair with very little movement left in his body for over a year now. We have only 3 hours of home health care a week.

Reading all of the posts in this thread has been a roller coaster ride. It is impossible to judge someone's situation without going through it yourself. Unless you have been a PALS, you have no idea what they are going through. Certainly a PALS would be excused for an occasional rant or crying fit. Being a CALS has taken my daily stress level up about 500%. I don't blame my husband, but it does not change the fact that I am in constant physical and emotional pain because of ALS. It makes me a different person than I used to be- more likely to rant and cry. The one thing that everyone needs to recognize is that we are the ones who CHOSE to stay. We take care of our PALS every day without fail. We could be the people you hear about who leave their spouse or move away from their parents, but we are not. I may be crabby and emotional once in a while, but at least I'm there.
 
Hey... March 29th, that's my birthday. I'm going to make it a point to howl for all of my ALS friends! :-:wink:
 
In order for the Howl at the Moon Event to be its most cosmically powerful, it would be amazing if we could be out there howling at the same time! I'm not analytically talented enough to figure out what time it would be in Australia at 11pm Eastern time...BUT- anyone willing to try and figure out the best time to suit the masses?

Love this idea!
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Barry....would you please with sugar and kisses figure this out...pleasssseeee? mwah! Great idea Mel. Now we just need to get it on the event thread with your incredible photo! Dick you should snatch this photo for your new avatar :] I love HOWLING and so do the Monkey's!
 
11:00 PM EDT would be 2:00 PM in Sydney. I like the idea of grabbing that picture, Melody. With your permission, of course.

Dick
 
Ok, right now it is 10:14 pm Tuesday (Mountain Daylight Time) in Alberta where I am, 12:14 am Wednesday (Eastern DLT), and 2:45 pm Wednesday in Adelaide near Peter. So a simultaneaous howl would have someone howling at the sun! 8)8)
 
We can get Peter a pair or really dark sunglasses!
 
Rocmg, you wont regret how you feel now, you will look back and know- that was how you felt, but in the end you did everything possible and you are doing everything possible to look after your mum. I know I had my days where I would get very stressed out with the situation, and my mum always apologised to me - but as I told her, "I don't hate you I hate the disease - it's not your fault, it's the disease".

I have my mothers older brother who no longer speaks to me, and cousins who have told me they are happy they don't have to share my surname as it is so much easier to disregard me as family - I have NO idea why they feel this way - but I know I have nothing to feel guilty about as I did the best I possibly could to keep my mum around as long as possible. Can they say the same - definitely not! I had my doctor recently tell me what a great job I did and should not feel one ounce of guilt because I did the best I could, I and do feel that way - even with my occasional rant and rave, but I think it was more because there was nothing else I could do to make her feel better, or to stop this progression, you do feel useless as a CALS at times!

Now that mums gone, I wish I had spent more time, we will always look back on how we could have done things better, but know YOU ARE DOING YOUR BEST! Perhaps you need to speak to a third party about your feelings, as it may be they have built up and being your mums fulltime carer - she is the only one you can take it out on - my kids cop'd the worst of me! I tried to never take it out on mum, but not good for my kids.

The only things that matter is you love your mum, and your doing the best you can, even when that feels like you are beating your head against a brick wall. My thoughts are with you!
 
Hi Gethling,
Nice words and good advice.


Now Barry, re the times.
The best i can come up with is if we do it at say now it will be
about 9 pm here and early morning in US and Canada (about 3 or 4 am) but about
10.30 am in England.
So to make it fair for all, (i dont have any really dark sunnies) what about we pick a time, say 9pm local time. This means that the howling will go on for 24 hours.


cheers
Peter
 
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Peter, a 24 hour HOWL! lovely :] "I see the moon and the moon sees me"! Part of a nursery song that I sang to my three children when they were babies as we looked at the moon.
 
I love the idea of howling at the moon! sure beats howling at Earl!
 
ok so someone set it up? Are we going to howl at a certain time in our own little part of the world? Like I will at 10 pm the night of the 29th of March? So we all howl at the moon all day an night? Let me know the plan? Linda
 
Ok. I will work on it and post it in the EVENT thread with a RSVP :] I am researching "howling" and this popped up. I love it and thought that I would share it. Enjoy! Truly wisdom in it for us on our journey.

YouTube- Native American ~ Words of Wisdom
 
Loved that, I will show Rich when he gets home.. Hugs, L
 
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