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I am sitting here at my computer waiting for dinner to finish cooking and thinking how tired I am of cooking and then I look over at my DH getting up, very slowly trying to walk over to his stack of papers with his head hanging down (he has no muscles to hold it up anymore) his hands are all crippled with his fingers only moving to a small extent while he struggles to pick up his papers and goes back to his computer to continue listing items to sell. And I am tired of cooking? Boy, that was a wake up call!
Think I'd best get over the pity-potty and be happy he can still eat anything and start loving making whatever it is he can eat!
Good Morning cyn.....I hope that you and DH have a good day to start the week. Do you have any appointments this week? That was sad but important insight you had last night when you were cooking supper and feeling sorry for yourself.....You have plenty of reason to feel sorry for yourself by the way......but when you looked at poor DH and how much he has lost.....and still trying to earn money with the damn listings.......My heart goes out to the both of you. May God bless you and make this time of trial....less arduous.
Good morning my bestest of friends!
Yes elston--it was sad but DH is not giving up! This week is his surgery on Wednesday. I know he is nervous and so am I. He has a great doctor that does nothing but work basically with ALS patients and feeding pegs so I am very confident in him--just surgery is always a risk so yes, I am concerned. DH has been doing pretty good with eating...not big quantities but at least getting food in his tummy and hopefully maintaining his weight after that 4 pound loss last week! I need to go and get the last minute necessities to have here in the house so we don't have to worry about getting to the store this week. I am suppose to have a nurse come by after we get home from the hospital to teach me how to care for the feeding peg....so that will probably be Thursday or Friday. It looks like a busy week here for sure. I hope to get the dogs yard mowed today if the lawn mower starts up after sitting the whole winter. BuBu will appreciate his yard getting cleaned up for sure. My neighbor is coming over Tuesday night so I can show her what and where to feed the cats and dog.
Big hugs back to you and Miranda sudcaro!
Location: Finally made it to Florida and lovin' every minute!
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Cyn, I'm sorry I haven't been around, but you and your hubby have been with me. Moreso, now that I know that his surgery is Wed. Extra good thoughts for you both. Love ya, girl.
I'm just doing my best to stay very busy so I don't think about the upcoming surgery. Getting ready to Mow BuBu's yard! Thank goodness the grass is coming up slower this year because the winter has been so cold but once it starts it will be mow, mow, mow. Thank goodness I have neighbors to help me out. I don't know if I could keep up the whole yard. My poor beautiful roses need weeding really badly and I just can't get out there to do it. Guess I just have to make time but I also need to work--and now I do both my work and a lot of my DH's as he can no longer pack items or take pictures. A few more hours in a day would be good!
I'm just doing my best to stay very busy so I don't think about the upcoming surgery. Getting ready to Mow BuBu's yard! Thank goodness the grass is coming up slower this year because the winter has been so cold but once it starts it will be mow, mow, mow. Thank goodness I have neighbors to help me out. I don't know if I could keep up the whole yard. My poor beautiful roses need weeding really badly and I just can't get out there to do it. Guess I just have to make time but I also need to work--and now I do both my work and a lot of my DH's as he can no longer pack items or take pictures. A few more hours in a day would be good!
You're doing amazingly, Cyn.... that's a lot of work even without everything you have to do with caring for your DH. Don't even think about the weeds, if you can help it, I'd say your taking care of YOU too, ie, enough rest, doing something just for your own enjoyment are right up there with taking care of DH- you know you'll get more mileage, so to speak, if you're well rested and your psyche is as up as it can be under the conditions. And I'm sure the neighbors who have offered to help are happy to do as much as you ask them to do, so don't be shy about asking them, rather than run yourself down into the ground trying to do it yourself. They see you trying so hard to keep up with everything yourself, and I bet they want to help you to take some of those burdens from you.
I wish we, your online supporters and friends, could do more to help you- be physically there to do it first hand, so to speak...
I had just wondered one thing, when I read your post about your DH not being able to hold his head up due to the loss of function in his neck muscles. Would a cervical collar help him at all?
I'll be thinking of you and DH, and praying for you- for every day and especially on the day of his PEG placement surgery. That'll be here, and over with, before you know it!
He did try the cervical collar and several other types but nothing works...not with the breathing problems and muscle weakness too around the neck and chest. It's just the way ALS works....
I did get the dogs yard done and was happy to do it but DH didn't make it easy. I spilled gas all over myself and the mower as I tried to fill the tank--this is pretty new to me and I'm a bit of a klutz it seems......DH got a little angry with me about it....my emotions are so---how do I say it--right there---and I feel emotional pain so easily today...so I am holding back the tears and just trying to get things done. I had to put air in the one tire so that required even more skills that I was not really born with but am working on. It's all a learning process so I find it hard to understand why DH thinks I should have been born knowing these things. Sigh......... I did a lot of this last year but he was able to help a lot more now it's all up to me and that makes it so different. Just a very emotional day for me today but I will pop out of it....
When my wife was still in a wheelchair, I noticed her head starting to tilt slightly to the right.
I bought one of those " airline pillows" ( I called it a horse collar......the wife laughed )
She wore that day and night until she died and nodded that it helped her a lot.
However, despite wearing it, her head kept tilting more and more to the right.
However, without it, her head would have been laying tight on her right shoulder.
You're doing the best you can and nobody should be giving your grief until they walk a mile in your shoes.
Go to an Ace Hardware or that type of store tell them you are looking for a kerosene wand/pump that is battery operated. It will be a long slender plastic tube with a smaller tube coming out one side to go to the mower gas tank. Stick one end in the gas can and the flexible hose into the mower's gas tank. Turn the switch on the handle & it will pump gas without having to lift the can. It works best if you can sit the gas can up on some blocks a tad higher than your gas tank.
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