CALS Roll call

[affected]

I don't think we meant don't clean the house period lololol
Well I know that isn't what I meant ...



Tillie

 

[kikkai]

Haha, I think I understand what you meant... not necessarily 'not clean at all, whatsoever'...

 

[affected]

I let my home care workers do most of my house cleaning. It was very strange for me to have someone else doing it! But Chris wanted me to care for him. I also had to work (mostly from home) to pay a huge mortgage, and 14 acres to look after.
So I chose to let these wonderful staff do my housework, as that freed me up to look after Chris and work the little I could. As he progressed, in the last months they had to step up and do more as just his basic personal care took around 8 hours a day.

But I reckon if visitors are coming, let them chip in, don't race around cleaning up to give the impression that you are super woman. Let them do a lot of stuff, so you can spend time with your PALS and maybe even enjoy some company. Also let them cook, again let them know how much you appreciate being able to have more time with your PALS and that their visit is a help to you.

So much better than stretching yourself even thinner. Most visitors won't even realise how much you have to do if you just sit them down with a coffee and do it all

 

[gooseberry]

Luckily company that comes to our house know where to look for my list. I always do groceries but outside jobs, cleaning, laundry, painting, tree trimming, etc make the list. Sometimes it is a simple thing like taking my son to school so I can sleep in....whatever will help. It is the only time I really get a break.

 

[gooseberry]

Tomorrow is wednesday and if I dont post now I will probably forget. Steve has had a good week but I ended up at the cardiologist. Need to have some testing.

To all the cals out there:Take care of yourself,,,,

 

[affected]

Big hugs gooseberry, don't underestimate the stress of being a CALS.

I hate when people say - you need to take care of yourself, and, are you getting any breaks. Drove me insane when said by people who weren't offering to make that happen.

Yet it's so true.

 

[gooseberry]

That is my issue Tillie. They tell me I need to exercise more and lose weight like I dont know that. But no real help is offered. Steve doesnt want home health but after we talked last night I am hopeful that he understands only wanting me to do everything is not an option.

 

[sunnysierra]

Wednesday again, how does that keep happening so soon? ;-) Chris had his third (since diagnosis) trip/fall/ankle sprain yesterday when his foot went in a hole. I was unloading hay from the truck and he was supposed to be standing/supervising and couldn't keep himself from trying to lend a hand. Broke my heart when he was on the ground moaning and saying, "I can't do ANYthing." I need to do chores like that in the morning before he's awake. His ankle was very swollen last night. We have a contractor coming over today to look at what needs doing for the VA grant remodel. The house is a wreck but has been for the last few months. I can't seem to catch up with it all. My pet peeve for the week is the people with the IFs. If you pray enough, miracles can happen. If you read this book and follow the author's advice Chris will get better. The author cured his own ALS. If you take this supplement, if you have your fillings removed.....the list goes on and I'm sure you've heard them all. I think people don't know what to say or how to be with terminal illness in our society. What I have loved about this week was sitting on a bench with a friend. I had just told her about Chris' diagnosis. She took my hand in hers and said "I don't know what to say." We sat there on the bench, not needing to say anything, my hand held gently in hers, tears allowed to flow, loving compassion in her eyes. It more than made up for the If comments of the week. May each of you be graced with such moment throughout your week. Kathleen

 

[sunnysierra]

Gooseberry, I need to exercise more and lose weight. I'm not even that busy yet with caregiving and have difficulty finding the energy. I know that after a few weeks of consistent exercise I will then have more energy, but just the starting of something feels so challenging right now. I know I need to get in the best shape of my life for what is to come. My physical therapist just gave the okay to do some walking so that is what I will do. If I write it here I will do it. I have an elliptical in the house so when I get the okay for that I can exercise even when it is dark outside. I hope all of your tests come out on the positive side. Kathleen

 

[djbailey]

Just checking in. Still around but eyes are tired this morning. Was up 13 times, according to my Fitbit, during the night trying to keep PALS settled in. Just about the time I start to go back to sleep, up I go again. Then my three dogs do not let me forget when it is time to eat. I swear they can read the clock and at 6:55 every morning they let me know, it's time for them. I will say they are my companions and comfort when your love one can no longer move or talk.

 

[Nuts]

Happy Wednesday. This is my third attempt at a post, so let's hope I get it done! The snow is melting and it's much warmer today, so I put on my rain suit and washed the van. It was soooooo nasty. I only have time because the aide is here all day today and I really enjoy being able to get out and do things. I've also done some sewing and will go back to it soon. I opened the back seam in Matt's sweat pants way back--now I'm splitting them through the waist and adding flaps and Velcro. The rest of the family has given up on the sewing they kept asking me to do for them, thankfully, so maybe I'll soon get through the "work" sewing and get to have some fun.

Becky

 

[Janis J]

Douglas and I have had a good 2016 so far, after a very difficult 2015 and a horrible December. We finished another batch of house renovations this month. His medical team has ordered a power wheelchair, a computer/speech-generating device with eye gaze controls, and a Hoyer lift. He tells everyone that he has recovered his zest for living. When friends offer to help we thank them profusely and tell them what we need. We're getting in lots of hugs while we still can, although that means I wrap his arms around me and he hooks fingers together.

We both know that things will get difficult again, but it's wonderful to have some breathing space right now.

 

[texastc]

Happy Wednesday to you all! Lovely sunny day in west Texas with a forecast for 70's over the weekend. Calls for some fishing!!

 

[gooseberry]

It is Saturday and had big plans for decluttering and putting up Juliens curved shower rod and new showerhead. But apparently I am not to do anything physical and just relax this weekend. Time to call in our 80+ yr old reinforcements.

 

[gooseberry]

Changed my avatar a couple of days ago because it feels like the hammer keeps dropping and I am getting beat into the ground. Need some happy news!