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Laura in CA

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Jun 16, 2008
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Reason
Loved one DX
Country
US
State
CA
City
Irvine
Thank you everyone who replied to my plea yesterday! (Intro/need advice). I saw dad and stepmom last night and they are already planning for the stay at my house. I guess I didn't give him much choice :-(
Dad had a few questions about logistics and I do think that his concern was about imposing on our lives more than necessary. When I explained that I have friends and neighbors nearby who can help and that it really gives me a sense of security, and that my life will be less disrupted this way, I think he felt better about it. I can't really be sure how he's feeling but in any case, there was no discussion about whether this is what we'll do but rather how we're going to do it. He had some questions about logistics and my family's daily schedule. He was worried about him being too loud at night (coughing, clearing his throat noises) and waking the kids. My stepmom also mentioned how his chair has gouged the doorways and woodwork in his house... again I think just concerned about imposing on us. If the worst that happens while he's in my care is that we gouge a few doorways with the chair, then I think we're doing well!
Imagining going to his house to care for him scared me, whereas planning for him to come to my house makes me a little nervous but mostly I'm looking forward to it. It will be chaotic but I am glad to spend the time with him and I really like that he'll have the time with my kids. Plus they just make him laugh all the time and I think that's got to be good, right?
To answer about my sister she is going to help but not the whole time. She works full-time from home but her office is 10 minutes from my house, so she can help me with dad half the day then go into her office the other half of the day and will stay with us several nights. Her kids are older than mine and can stay in after-school care until her husband gets home. Her house doesn't have a private room for him to stay downstairs; my house is one-story, so my house just made more sense.
It made my heart break when you mentioned that there are several PALS here who don't have any family to help with their care. I guess I just never thought about it. I have always said that if there was a "good" way to have ALS (which we all know there is not) then my dad has had the best possible time of it. Until he stopped eating, his friends would take him out to lunch often, which meant they had to drive his wheelchair for him, feed him and take him to the toilet themselves. (He now has control of his own chair). I have thanked them several times telling them that dad is lucky to have such good friends, and they just dismiss it like its no big deal. It is a big deal, many people don't have friends like that ever in their lives and he has several. And he is especially fortunate (I hate to say that considering the circumstances) that my stepmom is willing and able to care for him herself. She is retired, extremely organized, physically strong, and just very determined. Its unbelievable what she does on her own for him every day. Even though the reason she's traveling is to visit her own father who is sick, I hope she does get a bit of a break on this trip.
They did get the Tobii working yesterday and spent a few hours with the sales rep training, but when we fired it up last night it wasn't reading his eyes so he couldn't use it with me. But, it looks like by the time he stays with me he'll be a bit familiar with it, which is great. I think he's looking forward to just being able to read and play games again, not to mention communicate. I know its not the same as conversation, but its a lot more than he can do right now.
Also stepmom is trying again with hired help. Someone is going to come in and see how we do showers and if she's willing then they'll hire her to do that a few times a week. I told dad I want to start coming one more day so he can get two showers a week (really lately its only been one per week) but he doesn't want me to have to come another day.

Sorry this is so long, I guess i feel like I found an oasis in the desert beng able to talk to other people who actually have an idea of what its like. No friends or family or even my husband really can know what its like to help care for a PALS unless they've done it themselves. I've often thought if we video our shower sessions to show how we do it my family and friends would be very surprised at what it takes!
Thank you again, Laura
 
It IS a big deal, the wonderful way your dad's friends have helped him but he must have deserved such good friends!
Well done, you are fantastic. all of the family as wella s your dad will enefit from this. Your dad is lucky to have you
Love
Irismarie
 
I just had to amend my "until he stopped eating" to "when he was still able to eat"... that bothered me, its not as though he made a choice not to eat...but I don't know how to edit my posts yet!
 
Laura-

It's great that things are working out. Sometimes people (read men) need to "mull things over" after the inital "knee-jerk reaction". He is seeing that you have thought this out & are ready to take it on!

Since you feel your Dad's & step-mom's concerns are that this will disrupt the family, or cause damage to your home, be sure you are always aware of this & don't overreact to any "casualties". Keep your focus on what is important; yes, making him laugh all the time is good! It is a life lesson for all of us- what is really important?

So, take a deep breath; know that it will be hectic for this period of time, but know that you CAN do this; it is nothing that you haven't done already.
And, it can be a tremendous lesson to your children- this is family, this is love!

I guarantee, your Dad will know he is loved; and, I guarantee, you will reap more than your Dad!
 
Hi again Laura, I am so glad things are working out for you and dad. What mare said is right on the money. Try and keep the laughs coming, and try not to overreact to any issues that come up. You are such a good daughter, and your dad must have done a great job himself in the parenting department to have raised two such wonderful girls! Not to mention the totally awesome friends he has! He must be quite a character! When are they coming? Please let us know how things are going.
Hugs, Kari
 
YEAH! Here is for a wonderful and uneventful week!
 
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