CALS Roll Call Continued

It's Wednesday again... I seem to be feeling a little better this week?! Although, I do seem to lack my normal motivation...

I have invited all of my pals family over for Father's Day. My mother in-law passed away in March so I think it will be nice to do something special for my father in-law. i think there will be about 20 of us.

Our Hawaii trip is next week starting on Friday. I am excited and nervous about the flights and pals mobility but hopefully it will turn out well.

Has anyone ever gotten anything in their eye while they were sleeping? I managed that Monday night. Had to make a little trip to the eye dr yesterday to get it removed. Geez, it was painful!

Hope everyone is hanging in there and possibly even having a good week?!
 
Hi there, just checking in....so tired....just tried hoisting my PALS into a hospital bed ( at his request) with breathing apparatus and all that goes with it, only to fail....not comfortable....so I have just set everything up again in our bedroom . It's just after midnight here in Australia. So ,I'm just going to crash. Just wanted to say to Tillie, I've been following your exciting week. So proud of you. Also, thanks to everyone as your posts really are comforting and feel ok to chat to. ( even at this hour) .hope you all get to snatch some time to yourselves this week. Oh, how I wish I was going to Hawaii! It has always seemed so exotic for me .Best of luck in your travels. Goodnight!
 
Happy Wednesday (I hope)!

Aussie, I so feel for you. Our ceiling lift died and I spent Monday night dismantling beds so I can move the hospital bed into our room because it's the only one the regular hoyer will work with (the hoyer won't lift high enough for our sleep number beds). I guess that's one way to get him into the hospital bed... I can only imagine making the move with all that equipment and then having to move him back. Sleep. What's that?

Sooner, I've had things in my eye, but never in my sleep. OUCH. Wishing you the best on your trip. Travel is a lot of work for CALS, but it can be an incredible gift at the same time. Enjoy!!

Scared, reaching the stage of accepting your PALS' right to make bad choices is a big thing. I used to make us both crazy trying to protect Matt. At some point I understood his need and made peace with the fact that I was not responsible for the result of some of his choices. I will pick up the pieces because his need to LIVE under his own terms is so great. I'm glad you are ready to make your own health a priority. I wonder if the first achievement doesn't make the second possible.

I'm having a LOVELY hour sitting on the dock, having a beer that one of the kids left in the fridge, and catching up with you all. My regular aid who stays all day on Wednesday got another job, so she was here for her daily two hours but then left. The aid they had lined up to replace her flaked out, (the agency nurse's words, not mine), but it looks like the replacement's replacement is going to take us on. I'm delighted. I like her immediately. She's up at the house and by now has let the physical therapist in and I'm soooooo comfortable just taking some time to myself instead of running errands. Someone is supposed to come out tomorrow to look at the ceiling lift that died--thank Heavans! To get the hoyer into the room I had to roll my bed up against my dresser. Well, almost, I left myself 6 inches to squeeze in. The carpet is also a killer. I swear, it's coming out as soon as I can bring myself to face work crews in the house again.

Love to all of you.

Becky
 
Well I suppose it is Wednesday once again,. The time seems to fly by so quickly , as we are so busy just living. My pal has had a rough few weeks with things that may be side effects of the ALS . First the blood clots , then gout , then a UTI and now sciatica . I know he is ready for all these other things to go away as any of them individually is bad enough but add them together on top of ALS , it's enough to drive one crazy. But he still has a positive attitude and I am glad to be here to try and help where I can . Trying to figure out how to get some relaxing down time, working 40 hours a week and being caregiver is about all I can do for now....I just have to be thankful for reading all of the experiences of you all here on the forum, knowing life continues and learning from all the comments , thanks to you all !
 
Becky, I am glad you are getting a chance to have a beer on the porch. I am sure you need it after dealing with the equipment failure. I hope they get it fixed soon.

Nealbob14, I hate to hear about all the other issues you PALS is having along with ALS. That is horrible. All of those issues can be painful. I hope they get better soon.
 
Nealbob, we've been dealing with sciatica since Matt went into the chair. There are meds, such as Gabipentin, but that one messes with cognition. If you are able to get him to a pain doc or a spine doc, they may be able to narrow down the source and do cortisone injections. Matt has had three, and each one helped a different area of pain. The next round (they last 3 months) will be ablations--those pesky nerves will be burned out, which should give us a year of no sciatica or joint pain. I can't imagine working 40 hours AND being a CALS. wow. Hoping you do find some relaxation.
 
Nealbob, we've been dealing with sciatica since Matt went into the chair. There are meds, such as Gabipentin, but that one messes with cognition. If you are able to get him to a pain doc or a spine doc, they may be able to narrow down the source and do cortisone injections. Matt has had three, and each one helped a different area of pain. The next round (they last 3 months) will be ablations--those pesky nerves will be burned out, which should give us a year of no sciatica or joint pain. I can't imagine working 40 hours AND being a CALS. wow. Hoping you do find some relaxation.
 
Hi ya'll. wow, so many new names and faces that I don't know. sadly, so many same stories though...I think about the forum fairly often and how much help and love it gave me for so many years. I am so happy to see it is still functioning so well. You Cals in the thick of this--you are amazing heroes even if you don't feel like one. when I look back, I can't even believe the stuff I did that I never even batted an eye at. I know you guys are doing those things too.
 
My fellow warriors, kings and queens alike...

I haven't posted in this thread for a couple of weeks at least, but have been reading it all. There is so much happening with you all, and I am grateful for the updates here. It's a great thread for us.

I'm travelling OK, every week is a bit different, I still have ups and downs, but I am starting to feel myself get a little stronger each month as I move through my third year without Chris.

I just can't answer every post here in detail, and am worried I will miss someone if I try to catch it all up. But feel every piece of progression, every frustration and every little joy or victory. I can't imagine being a CALS without this amazing place of family and acceptance.

Please do start a new thread if you have a specific concern, but just reporting on the events of a week here is really important too. You are all more amazing than you probably realise xxx
 
Thank you...

I should not post in the evening as this is when I am at my lowest ebb. Come tea time I am a complete zombie, mind you I shouldn't post at anytime of the day as I feel so down, it's just evenings are when I am worn out. Not worn out because of too much work, worn out through sheer frustration, I don't seem to have much to live for right now. I know this will end one day and I do not wish for that day to come. I need to sort out my head, that's what I need to do.

I have had it worse than what is happening in my life right now, a lot worse so I do not know why I am finding it so difficult to cope now that things are easier than they were some months ago. I handled those days OK so what is making me feel like this, I have no idea.

Julie is not talking or walking, she just sits there trying to do her book puzzles, I say she is trying as over the past week I have observed Juklie getting all the answers from the back of her books, she seems to be unable to complete her Sudoku or crosswords now without 'Cheating' every answer or solution from the back of her books. This is a minor thing but just another observation of her deteriorating mind.

Julie is down 6 stone 5lbs (43lbs / 93lb) and what seems to bee losing 3 lb a week now. She can do nothing for herself, is bowel incontinent many times a day, unable to get up out of her chair without a helping hand and is really unsteady on her feet when up. Everything is running away now...

Dave X
 
I am so sorryv Dave and this is beyond cruel. I know there is nothing I can say that will make this easier. You are such a wonderful husband and caregiver. I admire you ability to share you darkest times and I am sure you don't even know what am inspiration you are and how much you are helping us all here. I wish there was something I could do to make this easier.
 
Dave I totally understand why you feel worse now though you do not think times are as hard. it has to do with catching your breath and having time to think. I feel for you brother. and please, if you feel you don't have much to live for that you seek professional help at once--I mean a therapist for you and perhaps anti depressants. your wife needs you now and you will have a life after this, I promise.
 
Wednesday morning here, the winter is about to hit us here - no snow of course where I live, but apparently we will feel the snow off the mountains down south. Probably make some of you who live with snow every year laugh, I don't even ever get frost on my property.

Hope you CALS are managing this week and can say a quick hi and raise your hand or else do start a thread to talk about anything happening xx
 
Not much new here to report. Got frustrated with some of DH's family over the weekend but we got that cleared up. Managed to get his loner computer connected to his Bluetooth speakers and he is enjoying music he plays through YouTube for now. Once he has his own, we will get more things going. All this computer work continues to help his sleep, which in turn helps mine. Hugs to all!

Sue
 
It's Wednesday again... Almost forgot. It's been super busy for me.

Had my PALS family over for Father's Day which was really nice. That was about 22 people including my 5 sweet grandbabies. I really enjoyed seeing everyone.

I took my mom in to have a pacemaker yesterday.

Friday, we leave for Hawaii. I am hoping to relax a little while we are there.

On a not so good note, PALS has his MDA Clinic appointment this afternoon. A little more weakness in the legs, weakness starting in his hands. Not much talking left. Pulmonary function test showed more decline. I am not sure what the numbers meant but they acted as if they weren't good. My PALS says he isn't having any trouble breathing or shortness of breath? The respiratory therapist said the dr likes to do the calculations so I may have to wait a bit to get the percentages. When he sucked air in, they said his best was 29 and when he was blowing, he only got one reading because their machine battery died which was frustrating but the number was 1.1. Does that mean anything to anyone?

Hope everyone is doing well!
 
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