CALS Roll call

[smoochiegal]

Ah Tillie,
You are a gem! We are blessed to have you here.
I, too, have been struggling. My hubby has had a rough week, he's frustrated, angry, quiet, demanding, all rolled into one.
Tonight my son had his confirmation at church, I was gone for about 4 hours. PALS brother was here with him. I had left lasanga in the fridge for them for dinner. I got home at 8pm and he had not had dinner yet. His brother said he asked him 17 times if he wanted dinner and hubby kept saying no.. but guess what? The second his brother left, he wanted dinner! ARUGH what is it? Why does he feel like I am the ONLY one who can do his stuff for him. I was tired when I got home, been fighting a cold and a headache for a few days I was driving home relieved that I would not have to feed him and only had to do bedtime routine when I got home.
I feel tired and kind of unappreciated actually... maybe it's time for me to take another holiday!
thanks for the roll call....
Hugs,
Cheryl

 

[affected]

Oh Cheryl, I feel your pain!

It was the same here, Chris would complain bitterly he did not need a babysitter, then would allow his kids (and I couldn't get them here often at all) to do nothing. Then I would be run ragged late at night. His kids probably felt that it was easy to look after him, after all they did next to nothing

Respite sounds like it is in order!

I know that's easy to say. I only ever had 2 times when Chris went away to visit his sister in the first 6 months and on return from the second visit he went downhill very fast. Then one time he went into palliative care for a pain management regime for 5 days. That wasn't respite exactly as I still went in each day to do his personal care, though it was amazing what they achieved with him. Sadly, as soon as he came home he refused to continue the regime and we were back to worse than where we had started.

I finally organised 5 days respite with funding I received as I was beyond exhaustion. He was furious, but I had it covered for paid carers to be there 8 hours per day in 2 shifts, and 2 of his children took a week off work so would be there as well, and between the 3 kids there would be 2 of them there overnight each night. I hired a holiday house only 20 mins drive away with assurance if anything was wrong I could be there fast. Sadly he passed away 7 days before I was due to go ... It's ironic though that for me to have 5 days off it was going to take that many people to care for him and no one would have been doing my work nor caring for the property ... Well he didn't need that many people, it was more to try and make him feel safe.

I believe there is a mix of things behind the certainty that only we can give them their care, and they all have their roots in fear.

Tired and unappreciated seems to be a hallmark for so many CALS

That's where I love it when PALS here talk of their concern for their CALS, reminds me we aren't always overlooked

 

[CruelFateCALS]

New to group. Hope everyone is having a good evening. Husband with ALS is snoozing but I'm wide awake. Short background......husband had 2 neck surgeries then finally diagnosed ALS. Probably had 2 years before that terrible day in 7/2013. Used cane for year, had to retire, ok by himself thru 2012. Too many falls, went to walker. Even weaker, I took FMLA stayed home most of 2014. Found care sitter , went back to work late November 2014. Just lost sitter. Finding one that doesn't cost an arm and a leg is near impossible. Family member helping for now. Find myself overwhelmed more often than not. Work family is super supportive, help make several home adaptations for free. Hard to ask for help but know I have to. What he goes thru is terrible and I feel guilty when I complain. Hoping this group will let me vent,cry, relax and find my strength. I'm a giver/fixer and I know I can't fix this. He has chosen no treatment and every day wishes it will be his last. Guess I'm just hoping to share and draw from others strengths. Hate seeing the sympathy in people's faces and can't talk without breaking down but I can cry and type at the same time! Lol. Thanks for listening. I better go grab a few minutes of sleep. Tomorrow's another day.

 

[Gembead]

Welcome CFC, please feel free to vent , cry, laugh, and relate stories, we will be here to hold your hand and give advise if. We can.
With love
Gem

 

[Annie's Phil]

You are very welcome here, CruelFate. Everyone here truly understands and will in sincerity listen and support you in whatever way possible.

Grace and peace to you.
-Phil

 

[Nuts]

I'll add my welcome, CruelFate. I can't imagine going as long as you have without this group!

It's wonderful to see everyone posting. I think perhaps quiet begets quiet around here...

Tillie, this thread triggered something in me. I wound up venting on a political issue on FB and I think it opened the floodgates. It helped to write about something other than ALS--to care about something other than ALS. Balance...what a concept!

Hubby got into the pool at Duke with one of their PTs--what a wonderful experience! He was so pleased to be able to move his legs and "walk"! He exhausted himself and slept the rest of the day, but the swelling was GONE from his feet and legs the next morning, and he got the official thumbs up on getting into the lake this summer (once we get some sort of lift to get him into the water). I loved the ramp and water wheelchairs, but somehow I just don't see that happening... If anyone is considering getting their PALS into the water, the wet vest was wonderful. Pricey, but I think this plan will beat wearing compression hose this summer.
I'm also looking forward to getting into the water without feeling guilty

 

[MaxEidswick]

>Hoping this group will let me vent,cry, relax and find my strength.

welcome!

 

[Barbie]

welcome Cruel fate! you have joined a great group of people who really understand what you are going thru. Oh nuts, I wish my husband would go swimming! we have a pool but early on me and my son tried to get him into the water with a life jacket on and he freaked out. will not even consider it now. I still get in and love to float around--no guilt for me!

Stephanie, you are amazing! my gosh you do so much. I still would love to meet up with you one day since we are only an hour apart!

Cheryl, I am with you on some respite! I would LOVE to take some. I am definitely planning on going to a wedding in NC this summer for a long weekend so that may be it for me. but right now I would love to go to the beach for a weekend with some girlfriends!

 

[affected]

CruelFate sounds like you'd better start posting here on a regular basis!

Nuts I love it, some balance for you and some water exercise for hubby. As things finally cool down here just a little, the water weather will start to build up there for you

Barbie, still excited about your night time worker!
Maybe it means you can consider some respite?

 

[Barbie]

Oh I hope so ! keep your fingers crossed

 

[rosec]

I am still here, Tillie!

My hubby is very against seeing people as he doesn't want anyone seeing him this way.

I can relate to that. Early on my hubby was like that too. He loosened up after an year or two. Now he loves to have company. We celebrated his 60th birthday in Feb, inviting all the friends and family who have made an effort all these years to visit him, and help us in many ways.

Why does he feel like I am the ONLY one who can do his stuff for him. I was tired when I got home, ....

I can relate to that too. Hang in there....

 

[Nuts]

Barbie, if you could get him to try the wet vest, I think it would be a whole different experience for him! Maybe having the therapist take Matt in the first time gave him more confidence than he'd have had with me. I would love to have a pool, but we'll make the lake do. I may have to put up ropes and signs when he's in the water to keep the speeders away from the dock!

 

[affected]

Hey Rose, great to see you put your hand up

I'm so glad your husband was able to change his mind on the isolation, it must make a huge difference to the quality of life for you both.

The wet vest sounds great, I remember reading up on them some time back when one was mentioned. I've seen some great pool hoists too - some even just allow you to lower them in a chair into the water. On hot Florida days at least he could be a bit submerged while you swim. Or maybe you find a swim on your own a little break now ... :shock:

 

[CruelFateCALS]

Evening or rather morning everyone,
Thank you for the welcome mat. Today was a better day. Had to take off work as no caretaker yet and off the next two days to keep searching. Sent emails to a couple of nearby community colleges hoping some nursing students might need a few extra dollars. Like some of you, I think he's better for others and waits till I get home for most tasks. My brother coming over today to see what he might be able to do. He's on disability and bored so hoping they can keep each other company for a few.
I'm scheduled for a "phone session" with therapist this morning to vent or whatever. Have to say, first time for that.
Better try to get in a few winks. Can't tell you when I last had a good eight hours. Lucky to get 2 or 3 on and off.
Again, thanks for the warm welcome and hugs!

 

[Mandyintn123]

(raising my hand).. here and dont want to have to be but cant think of another place to be among people who know what we are going thru.. i know some of my first posts were kinda just thrown out there after going thru obstacle after obstacle.. STILL going thur them..but you guys have been great at helping anytime i have had a question and i am so grateful..... Mom had her g tube placed last monday.. sent home same day and luckily my sister pulled some strings to get her into the ever illusive nutritionist today... finally got the trilogy on friday .. (settings are too high so mom wont wear it ).. says it hurts... called respiratory company of course they have to have a order from the dr to change it.. called dr.. of course the dr on call isnt comfortable writing the orders to change it ..so hopefully today they will get it done

other than that .. i cant seem to shake this overwhelming guilt of not being able to do more..of not being there more... my dad is doing what he can but he is still working some.. i work full time my sister works full time along with demands of our families.. I wake up each day terrified that my mom is dying

thank you all for being here .. for allowing us all to lean on eachother