CALS Roll call

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It's so wonderful to read about everyone's adventures, and a gift to be able to share the hard times. Our internet is still on and off--I've now decided it's the modem and a new one is supposed to be on the way. Between that and the forum being down I've had a bit of seperation anxiety :) Hubby is taking some time away from work (short term--we'll see if he restarts from home after a rest). I put the work computer away so that he doesn't see it when rolls into the living room. Our string of visitors continues (it is summer on the lake, after all), but in smaller groups which is best for us these days. This week's visitors include a high school friend of our daughter who makes a living making memory videos. He'll spend a couple of days interviewing hubby and then edit them into something that we will treasure forever. They leave Friday and our eldest son and grandkids return. Not being able to set off fireworks or take the boat out on the lake to watch the big display was tough on my darling, but the grandkids have been asking about grandpa's fireworks so my son will "assist" and we'll do them this weekend. I'm so grateful to them--

This morning I'm posting from the waiting room at the Honda dealership, where the wifi works and no one needs anything from me. Daughter is there and the aid arrived 30 minutes ago, so I have no guilt. It's rather wonderful. I'm so glad you are all here, because no one else would understand how I could be excited about taking the van in for servicing :)
 
Still here, not much has changed over the last few weeks. I am so glad to read of everyone's travels. The 4th was quiet. Things are in a pattern that I can handle right now so it works.

Hugs to you all
~Kaye
 
Great to see the updates rolling in, love you all and I'm still floundering around here too.
 
...excited about taking the van in for servicing :)

That's a big 10-4, Nuts. We really do understand the joy of getting away for an hour. It's very necessary.
 
In Denver and heading home in a couple of days. Going to need a new car when I get there. Mine decided to die just before we left. The Trip has been great and Steve has loved it. Its been quite tiring for him though. We will see how it goes. I am doing okay!
 
Enjoy your break Nuts, even if it's only a short one.
Live Gem
 
Nuts, hope you enjoyed your breathing hour at the Honda dealership. Those moments where we aren't on high alert are pretty precious!

Gooseberry, hope the rest of your trip goes smoothly and you both are loving the sights.

Gem, you're a whirlwind! I feel like I'm still recovering from our trip and we've been home days now.

We leave again in 2 1/2 weeks for an Alaskan cruise with a group of friends and family, and Jeff spent time today planning our next road trip and researching RV rentals so we can take the dog. Accch! But I'll be ready by then. He really loves getting away and it's such a joy to see him so happy! It was nice to be able to share our pictures here--thank you for your kind remarks.

Tillie, glad you're back safely. Hope time with family was precious and happy.

Poppies, thoughts are with you as you negotiate that tricky balance of meeting everyone's needs. Please take care, though, and negotiate yourself into that equation.

Laura, Alana, Jeanau, glad to see you here--thinking of you and all our friends yet to check in.

Good week to all.
 
Hello fellow club members-
I have not checked in for a while. My wife Becca has had some changes in the last couple of weeks. Her breathing has weakened and she has confusion, aphasia and paranoia. She's aware of the symptoms and agrees that it's caused by the disease and CO2 buildup in her blood. She sleeps for a couple days straight, then has a couple of better days. She started Ativan yesterday and that really seems to help with the paranoia.
I was told by an ALS researcher that FTD and ALS are intertwined. You can have FTD for years before ALS-- or the other way around. Kinda like which came first, the chicken or the egg. She has always had mental health issues, which runs in her family, and the disease and breathing problems exasperate everything. She has made her end of life plans and will donate to the Harvard brain bank. Her strength inspires me as well as the people who are helping her. Her hospice team couldn't be better.
The good news is that she still has her sense of humor and we appreciate the time that we have together. She also let an my respite aide help give her a shower yesterday. That's a huge step for her. :)
She is a complex person with a complicated disease and I love her and feel honored to be able to help her. Thank you for listening. Mojoloco
 
Thanks for sharing Mojoloco. Your touching words honor your relationship with your wife.
 
so proud of all the Cals here...so much love. (and yes, I am talking about you!)


It isn't Wednesday, but I am checking in. I am feeling super overwhelmed and a little depressed...got a lot (too much) going on all at once and I just cant handle the pressure anymore. work is very intense right now, and is spilling over into my personal life. husband is doing ok, but very needy constantly which is exhausting. I can't figure out anyway of making things easier right now--I so want to just get away from everything and have someone else take care of me for a while! for now, I just have to keep dealing with work and the problems and issues which I hope will dissipate in the next couple months.

With my pals, IDK, his constant needs is just so wearing on me right now--probably because I already feel overwhelmed. :(

I hate whining about my problems...it doesn't solve anything and it doesn't make me feel better...

I got really mad at my son yesterday. I work full time and support the whole family and everyone knows it has been stressful lately. I got off work yesterday, went grocery shopping, came home brought the groceries in to the kitchen and then went to the bedroom to get my husband out of bed and was taking care of him. my son got home and went in the kitchen, saw the groceries on the counter and went up upstairs to his room. I got hubby up and walked into the kitchen to get him a drink and called for my son to help me with the groceries. his response was "I am tired, I just got home from the gym". well, I popped my top. gee I wish I could go to the gym. gee I wish I could sit around all day and enjoy my summer. The garbage was full and stunk, the sink was full of dirty dishes and the dishwasher was full of dirty dishes, groceries had to be put away and dinner still had to be cooked, then husband still had to be fed and then back to the bathroom for his care. it was already 7 pm and I was so hungry myself I felt faint. I yelled at poor sonny boy and he came down stairs and put groceries away, took out the garbage and loaded the dishwasher and started it. (of course that meant that after I cooked dinner I would have to unload and reload just to catch up). well, he is not such a poor sonny boy (he thinks he is of course) but for Pete's sake! open your eyes! I should not have to yell about any of this!
 
Mojoloco, thanks for posting. You're quite brave.

Barbie, I feel for you. Teens are the worst years, because we expect that our kids CAN help out, but they rarely live up to our expectations. I was the worst; I had nothing to do with my parents. When Krissy was pregnant, all I could think was "Please God, don't let my kids be like me!" My prayers were answered.

If there is anything I can do, just let me know. I'm close by in Winter Park.
 
Gee Barbie you yelled at your sunny boy?

I have a CALS friend who brought her son of similar age up short recently, maybe maori broads living in oz do particularly good snaps? She dumped dishes and pans into his bed and some of them broke. Then she added the beer bottles that were hanging around and emptied the ashtray for good measure.

Apparently he's been a model of behaviour days straight so far!

As to the other stress - do you still have a carer that sleeps there some nights? Can you make some kind of break for yourself - put all your stress energy into devising something? I hate how much energy stressing takes up! It's always when I look back on a time I'm stressed that I realise how much energy it took that could have been poured into something else.

Hugs Mojo, keep talking here xxx
 
House guests and getting back into a routine after visiting with my family in Virginia. M was in Provincetown taking a writing workshop. He loves it up there. As always, he said this was the best class yet. Weeding, and helping my 91 yr old father in law get used to his new apt in an elder care facility!
Anna
 

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avnl where did you take that photo?

Some of my most favourite flowers - lilies and daisies. It is stunning.

Strange days for me - Thursday I went to a meeting and it looks like I've been made a quite lucrative work offer doing what I love (I've not worked enough since Chris passed as I just can't get back into the rat race, and much of the work I've done is stuff I don't like).

So I've been feeling quite chuffed about what that will mean for the next 6 months or so during this contract.

But last night and tonight I watched some episodes of the new Game of Thrones and ended up in tears that Chris isn't watching them with me, being stunned by events and deaths and talking about it all afterwards. I'm OK, but missing him like hell.
 
We needed to replace our man hole cover in the ceiling today, BJ though he had his Dad's old cutter for cutting gyprock down in the shed, I asked him if he wanted me to go with him to be on the safe side, no I'll be right ,I will go down on the ride on mower, yep he lost his balance in the shed and fell, bruise and grace to his forehead, pulled muscle in right shoulder and a bruised left collarbone. Another lesson learnt, I will go with my gut feel from now on, and BJ has decided it's computers and reading from now on. Glad he didn't pass out as our shed is about 100 metres from the house so I wouldn't have heard him if he yelled. I learnt how to cut gyprock another blue job....I think I will have to start calling my jobs mauve jobs instead of pink jobs for girls and blue jobs for boys.
Love Gem
 
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