How much longer?

[affected]

Nancy and weavie

When I first met my Chris in the early days he said to me very seriously - when you are on your death bed the only thing of value you possess is your memories of happiness you gave to others.

His first wife died of cancer when she was only 41, 8 years before ALS took Chris.

I tried to encourage his children to be as involved as possible - not just because I needed help, but more because I wanted that to comfort them once he was gone. I didn't want him to suddenly be gone and they be left with regrets that they stayed away.

In the last few months 2 of them did come see him more often. I know they will be so thankful of that now.

But none of them really 'helped'.

So when I see any CALS here that are the children of a PALS I want to just hug you all to pieces and tell you to do everything you can as you will carry it with you the rest of your lives! I don't mean you have to wipe bums or icky stuff necessarily, but be there, be involved, give your time cheerfully and willingly.

Weavie how is your mum?

 

[weavie]

That is exactly how I feel about it Tillie - no regrets. To know I have done all I can at the time, I hope will bring some comfort when all this is over. When I knew mum's voice was slowly failing I said to myself I would ring and speak to her every day. I did that until just recently when she is now unable to talk. I still call and speak to my dad every day so she knows I have called. I am also not far away from them, so visit as often as I can and help with everything as much as I can. I have one sibling, an older brother. It upsets me very much to know he makes little contact and does nothing to help, not even to see how mum is. He had no idea mum was having her PEG tube changed on Tuesday, but it got the better of me and I asked my dad to let him know (in case she didn't make it through the procedure.)
Mum is about the same and dad is doing a great job with the new PEG feeding system. I will visit them again in the morning.
Sometimes I wish I could do more, but I am in the 'sandwich years'. Working full time to pay for the education of my 2 teenage daughters and trying to help look after my parents. My husband is very supportive, I am lucky.

 

[dalvin]

It is good that you are able to help out, however much you can. I made the decision not to allow my son to be my care giver because he has two toddlers and a new born to take care of and I know that eventually caring for me would mean neglecting those little ones. If they were older, perhaps teens, it would be a different story but I won't allow my grand babies to be neglected. However am allowing other family members to fill the role. Guess what I'm trying to say is it's good that your children are old enough that you can be a help, God bless you