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QUOTE=JAH39;27099]Dave,
You are without question an inspiration for all PALS. I was going to send you a private message to inquire how you cope with your limitations. Now that you have shared your home life with us I would like to ask you several questions out where other PALS & CALS can also benefit from your past experiences.
1.) What has been your greatest challenge raising your children?
a.) I see my son being thrown up in the air or hugged by my friends and I think to myself, that should be me. How have you over come this scenario?
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Being able to hug or hold them was always tough because I always missed that. Like you said, tossing them into the air and catching them is something a Dad should be able to to do but since I never could I'm thankful that there was always someone around who could and did. We have to learn to accept the physical things that are impossible for us to do.
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2.) How do you communicate with your wife and children?
a.) When you are out of your home how do you communicate?
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Deb and the kids can read my lips extremely well so communicating with them isn't really a problem. If I'm away from home my laptop with E Z Keys is velcroed to the computer tray on my power chair so if I'm near an electrical outlet I can use my computer to communicate. If not, Deb or the kids translate.
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3.) I fear being an embarrassment to my son once he enters Junior High School & H.S. where there are more children and parents who do not know about my illness. Perhaps this fear is my own shallow immaturity showing through. However, a valid concern nevertheless. Did you experience this hurdle?
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If you're with your son through all his school and sports activities from the very beginning all his friends, classmates and their parents will be acquainted and comfortable with your situation. That's totally on you. It takes some guts to put yourself out there and risk some embarrassment but it's worth that personal risk for me. Like I said in an earlier post, the kids were like 3&4 or 4&5 when I became vent dependent so it took some courage to go to their first school activities for me and them. It paid off in the long run because by the time they were in Jr High and High School many of their friends had learned to read my lips and some were even brave enough to suction if Deb or the kids was busy with something else.
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4.) When Deb leaves for work do you have an emergency protocol if you require immediate help? Life line or similar?
a.) What happens if your vent were to fail while you are alone?
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Oh I'm very seldom totally alone if I'm on the vent. Occasionally Deb will run a short errand to the bank or out to get milk /bread and leave me alone but not often. Sometimes I can talk into taking me off the vent so she can run errands. I feel 100% safer off the vent if I'm alone because I can breathe on my own for an hr or more with no problem. Deb's afraid I will collapse a lung if I'm off long. I'm more comfortable off the vent when alone because if I'm hooked up and the vent malfunctions I'd be dead in 15-20 minutes. I know this from experience but that's a whole other story. LoL
When Deb leaves for work I have someone with me. It makes me so angry when I hear people say it costs $250,000-$300,000 to care for a vent dependent PALS at home. You don't need an RN CNA or any professional help. You can train anyone to help. This isn't rocket science or brain surgery! Luckily we have found carers who will sit with me for $30/day three days a wk and my father-in-law helps the other two days. My carer only suctions me a few time a day when needed and does laundry. I don't need to go to the bathroom or anything during the day. Well, I use condom catheters so urine needs emptied from my leg bag a couple time daily.I don't need nursing even though I'm on the vent 24/7. One girl who worked for us a yr had a 2yo daughter she brought with her. They ate here, done their laundry here and only charged us $75 for five days a wk. We helped her and she helped us. The girl we have now is between jobs and would rather be here helping us than sitting home doing nothing.
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I admire your choice to remain with your family and in their lives. I hope you do not find my questions to personal. I haven't seen many PALS post their home life challenges. I would like to thank you for expressing your feelings.
Sincerely,
Jeff
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Jeff, my life with ALS is an open book. I may still be alive because my purpose in life is to help other PALS who are struggling with things that I might've already overcome. Some people have told my family and I that we make living with ALS look easy. Well, it isn't easy but but I feel the good times by far out weigh the bad!