CALS Roll Call Continued

vltsra

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Wednesday, checking in...

Today was my PALS' first day out of the house in a month and a half. I have been trying to get him to the dentist to take care of an extracted tooth (he will get a bridge) and a filling since March. I've cancelled several of his appointments and my dentist friend came to the house on one occasion to help him with the temporary. Today he was able to slowly go down five steps to the entry level, and then out of the house with the walker down our outside steps. Luckily the steps outside are wide and gradual but I am looking at options to ultimately get him out more safely. I had backed the car in the driveway to make it easier for him to get into the car. Got him in, got the walker and the wheelchair loaded, and got ready to take off - so of course the Prius would not start. I could not even put it in neutral to get it out of the driveway so I could use his truck. I had just backed it into the driveway ten minutes earlier! Had to call AAA, who came and gave it a jump start and told me to drive it. So luckily I did get him out to the dentist and back safely but honestly, what on earth. I hope our next outing can be something that is a little more fun for him than the dentist. The Bipap is really helping him and he is doing better than he was a few weeks ago, but I've seen what the future will bring.

V
 

ARCG

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Leaving the house is never easy. I have become to expect nothing will go smoothly. My pals just was called tomjury duty, which means getting forms signed and submitted from the doctor, not a big deal under normal circumstances, but with so many things I have to do, just another hassle.

Starting him on a new med for cramps, hopefully it will help. I am entering a different phase emotionally. So little patience with mundane issues people complain about. Also realizing that everyone wants this to be over so I can go back to my ‘old self’ that they were so fond of, I will never be that person again and resent the pressure to ‘find time for myself’ It’s so crazy, I want to take care of my pals and shut out the world and it’s dysfunction. Healthy people don’t realize how fortunate they are. So just want to say to them, stop being so negative and appreciate you can get up under you own power and enjoy spring. Spread some kindness instead of looking for trouble.
 

ReginaS

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I am there too. I also just want to take care of my pALS. Time is limited. Outings are harder as even paved surfaces are bumpy and jerk his neck and head too much. So we sit on the porch. I don't even want to think about what other people think or worry about - it sure seems like I am in a different time zone. I remember the times when I got wound up about 'nothing' and it seemed really important. The perspective has really changed since ALS entered our lives. It's probably one of the benefits of ALS though I am very hesitant to even write this down... benefit of ALS...go figure.
 

lgelb

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People who don't have caregiving responsibilities of this magnitude will never fully get it. They can't.

And yes, ALS is its own time zone and country, I'm pretty sure.

V, glad you got to the dentist and at least did not break down on the road. But we hope to hear soon of an outing that is less frustrating and more fun!

Best,
Laurie
 

affected

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It's so true, everyone glances at us, finds the situation uncomfortable, so they look away fast and decide to just wait for the 'old us' to 'come back' when it is 'all over'. They certainly don't get it - we are never the same again, and it's not all negative that we are changed. It's a horrible way to change though.

V - well done, so many hurdles and I would have just wanted to melt do nothing when that car wouldn't start!

That's a great way to put it - a different time zone!
 

ARCG

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Messages
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Reason
CALS
Diagnosis
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Some good news, we seem to have my pals pain at night under control. I read about a mexilitene study and asked the dr. About that and after they did some more research they prescribed it and he has gone three nights without the pain and no side effects, fingers crossed.

My DD is home for summer and doing what she can to help, very proactive, it her heart is breaking to see him like this, as is mine, it is doubly hard to see my children suffer as well as him. I work hard to console everyone and give him the best quality of life but I wonder how much I can handle before my body just breaks down. Don’t get me wrong, I am grateful for the support others have offered me, it’s just so hard all the time, going from crisis to crisis.
 

wishmobbing

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Messages
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I get how aggravating it can be to be told to take care of yourself. It sounds like one more impossible task at times. People who want "you old self back' aren't necessarily against the change you're going through. Most times they want you to not be in that enormous responsibility and constant physical und emotional stress. They want you to be undamaged and save from harm. To be out of crisis mode.

But it's a dang crisis.

Not long after my PALS died I met a good friend and started telling him stories, like I always do, a bouncing flurry of hands. He right away smiled all over his face and called out "You work again!"
He felt instantly that the dark cloud that comes with worrying was gone. I'm not the same than before but I feel the same again.

I wish lots of strength to all of you CALS. You don't have to be patient with people who don't get it. Just remember that people who worry about you don't always find the right words. But you can always try to make them work. 'If you want me to feel better, get my car to the shop/my kids to the dentist/my groceries shopped..." ;)
 
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ARCG

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CALS
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Long day. Tried to make a nice Fathers Day for my husband, but just got him to bed. When I first put him down, he was fine, then complained he couldn’t breathe with the mask. So I changed it, made
sure the valve was clear, the tube was clean, etc. the numbers looked okay, after none of that worked I called and we spent some time on the phon adjusting the settings. Finally, he said it was working. Ironically the respitory therapist was just here on Tuesday checking things out. The gentleman on the phone asked if he was having anxiety and he said no, I don’t know, he has been more sensitive lately. Seems to resent if I pay attention to anyone but him, including the children. My DD is getting married soon and I wanted to put the dog in a kennel just for that weekend so Inwouldnt have to think about taking car of him as well as my daughter, husband etc, and my husband said no, he wants him here. I love the dog, but one weekend st the kennel (which he loves) wouldn’t be the end of the world. Sometimes Inthink my husband doesn’t get how much there is to do to keep everything going. It’s nit the individual task, it’s the fact there are so many different, sometimes conflicting tasks to manage. End of vent, I just can’t sleep
,
 

Narrowminded

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ARGC I’m so sorry. Going through that phase until the end is hard. I’m sure he wants to be there for DD, but at the same time is worried that you’ll forget about him. The dog is probably calming to him as it’s something “normal”. I agree about not having the hassle though.


Hugs
 

Jrzygrl

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I get you, ARCG. I have similar issues with my DH. SO many things to get done every day. Then all the big and little emergencies of ALS. Recently, DH has been on me to change the heater filters in the basement. Hello - it's 80 degrees outside. I will get to them, but have to prioritize. Groceries, laundry, dishes, bills - they're all waiting for me. Just keeping it all together is hard.

I would go ahead and make reservations at the kennel for the dog. I did so for mine when planning for my DD's college graduation. Long story short, he did not end up going, so I just cancelled the reservations. Maybe he'll come around when the day gets closer.

Hugs.
 

affected

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I agree - book the dog in, stand up for yourself in at least this little way. Don't do it in defiance, just in need.
 

vltsra

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CALS
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Sorry ARCG to hear of your difficulties! My PALS has been on BiPap 2 months, sometimes tells me he thinks something is wrong, but I check everything and can't find anything. One time the filter was wet so I turned up the settings and then when I changed the filter it was blasting!

Yes lots of conflicting tasks. Make the reservation for the kennel. You are allowed to vent here.

V
 

ARCG

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Wanted to post something positive for a change. Yesterday a couple of my husbands former colleagues came over to help with the outside work in anticipation of the wedding coming up. They called a friend to borrow his pickup and he came and stayed the whole day to help, even though he doesn’t know us. They did an amazing job. Pure kindness, without me having to ask. There is goodness in the world.
 

affected

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ARCG it's odd that so many people I thought were close scattered, and then random acts of incredible kindness came from unexpected places, from people either we didn't know, or hardly knew. I'm so glad you had one of these beautiful random moments :)
 
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