CALS Roll call

[affected]

Gooseberry I've seen showerheads blow apart when dropped The roll out drawers sound like a winner and so practical.

Gem have a wonderful week and come home to a completed tilling job.

Barbie it's wonderful that you and your hubby can still work on some of the business stuff together. Better him editing photos than annoying your staff eh

 

[4tloml]

Quick check-in before turning in. Wish I could respond to each, but only getting on because hubby is sleeping. (His computer and he is always on it!) Driven ~2000 miles since Monday. Made it over the Rockies in the rain--I have never done any mountain driving, but this low lander did OK. Drive back over was easy. Road trips aren't so much. Lots of gear to load & unload each new location (arrived at the 5th one tonight). But tonight we're in Yellowstone & we'll be here till Friday. Then Cody, Glacier, Oregon and home. Still, we're seeing everything my PALS wants to this trip. That alone makes it fun and so worthwhile.

I'm missing dropping in here. Will have a lot of catching up to do when we get home. Not even sure yet when that will be. I suppose it will be when he starts missing the dog too badly to bear it!

 

[Mojoloco]

Hi I just joined your online community recently so I thought that I would add to the roll call. My wife is in good spirits even though she can't move from the neck down. The problem we are working on is the joint and back pain from only being able to lie on her back. She is in this position 95% of the time. The hospice nurse is helping. Morphine did not work so we are trying methadone. Her only sister and family are visiting and we had a houseful of my family yesterday and they saw me transfer her for the first time. She had a wonderful day. She is now open to having an aide come in for showering which will help. Her speech etc. is good, but is having major fasciculations in her whole body, one side at a time. When we went to our final als clinic a couple of months ago she pressed the neurologist for his timeline opinion and he said to enjoy our summer. I fear that when her breathing gets worse it will go quickly, as her limbs have. We are focusing on getting her comfortable in her PWC (back pain), so that we can get out and enjoy our summer. She has worked out her end of life plans, which gives her peace. She is donating to the Harvard brain bank. This week we are getting together with ALS friends we met last year in Wasington D.C. At the Advocacy Day . Thanks for listening and best wishes to all who work so hard to make our loved ones find help,peace and comfort

 

[avnl]

Just returned from Baltimore where we attended a naming ceremony for our newest grandchild. M not feeling well rose to the occasion. I even got to spend the night to give Lauren my step daughter some sleep and got up to do the night feeds with Miss Madeline.....a charmer. Yes I know pictures. 4 more posts to go before I can do specific attachments. I did set up some albums that can be accessed by the community tab of our past trip to Asia. Friend who hosted us in Western Australia here for a visit busy busy. Mass general visit with pulmonologist as M having issues...last visit he was 100 percent but having frequent choking. Gtube time? A lot for him to process as denial is his way of coping.
Good luck to those renovating....
Anna

 

[Nuts]

Internet has been out since last Thursday, and I can't even remember before that. It's good to be back! Hubby is now working from home fulltime, but his doc wants him to take 45 (and up to 90) days off completely to destress and reset himself to this new pace, so back to STD (it occurs to me that the old meaning I assigned to those letters wasn't nearly as bad as I thought it was...). We're headed to Vermont to see our youngest son receive his graduate degree. It's a 12 hour drive, so we plan two days in each direction. It'll be the first time traveling with the shower chair and the trilogy--each trip becomes a little more complex.
He wants me to bring the walker with the seat and roll him around with that, but it's not happening. His trunk is becoming too weak. He wants to share the driving, so I'll be ratcheting one van seat into the middle of the van and rolling out and back in to let him in and out, but that's not too difficult. The VA and LTC have both approved a home health aid, but we seem to be stuck in that twilight zone of not being able to get someone out here. The first company the VA picked hasn't hired anyone after 6 weeks and isn't keeping us updated as promised, so I've asked them to switch agencys. I'm ok, but am glad that we started when we did. At this rate, I'll be in serious need by the time we get someone in place. Right now, I want a nap (he was up every two hours last night, and I had several more wakups when the mask started leaking).

 

[affected]

ROLL CALL DAY AGAIN

@ 4tloml wow the trip sounds awesome but so much work. It will be great to hear the tales and see some pics when you get home!

@ Mojoloco it seems to me you are doing a great job of settling into the reality of this disease.

@ avnl it sounds like you need to discuss what he wants to do about a PEG, don't let it just drag on. If he doesn't want a PEG then you need to make strategies, if he is going to accept one then get it in as soon as possible!

@ Nuts I nearly needed a nap after reading all your stuff! I'm so glad hubby is at home and you are working towards getting more help in place.

I'm slowly having more and more weeks where I'm feeling like I am moving forward and retain some focus. It is a relief to me to feel that I'm on a more steady upwards path rather than a randomly up and down one. Still have lots of grief, but it is changing.

Now HANDS UP, just one line is fine so we know you are out there

 

[cheerleader]

Still here- and hoping Smoochiegal and some of the others who are near the end of the journey ( not really- as Tillie can attest, the end of suffering for our loved ones is the beginning of a new and different pain for us!) will check in and let us know how they are doing. This caring community is one that remains important to me- wonder if the day will come that ALS doesn't remain a part of our lives, even though we are no longer caretaking?

 

[gooseberry]

I am here. Trying to pack for vacation, a house remodel, work, and secure living arrangements for when we get back from vacation. I could do nothing today but sit and read when I got home from work. This weekend will be crazy and a ton of appointments next week before we go. .I keep telling myself to.breathe.....I have been grinding my teeth in my sleep. Ending up breaking two fillings so I had to het a mouth guard. That will be in next week. Ugggghhhhh.

 

[tripete]

Cheerleader, is it easier at all? I keep hoping that for my wife life will get back to some sort of normalcy for her when I am gone. I do not know what else to hope for?

-peter

 

[cheerleader]

Pete, the answer is yes, life falls into a new rhythm- but each day I start toward "his chair" to share something funny or interesting. I look for humor and signs he is there and find them regularly! (Like when my basement flooded, ruining most of my Christmas stuff, could hear him complaining about having to haul WAY too much stuff up every December- and decided he was the cause of the flood! Lol). Surrounding myself with positive, caring people who uplift ones spirits and keeping busy have helped. And as I read the forum, take in thehumor, trials and tribulations, can reaffirm that he is at peace and not suffering as some of you are. That helps, as do the unasked for tears. Someone called those tears " Memories falling from my eyes." Your wife WILL be fine. Having years with a great man who loved her WILL get her through. Hugs to you. Donna

 

[Annie's Phil]

Still here as always. Getting everything ready for a new little flock of chickens. Lots of fond memories of getting our first flock of chicks a few months before Annie's diagnosis. It was her project and so I'll always associate them with her.

 

[Amandagall5]

Here..
Appointment today at the VA ALS clinic. I'm thinking it may be the last one we go to. We have hospice now, and all the equipment necessary so what else can they do?
Amanda.

 

[Barbie]

Amanda we stopped going a long time ago when it became apparent that it was just a watch and wait waste of time.

I am feeling blue today--my best friend is losing her husband. I mentioned her a while back--been a real rock for me and her husband was diagnosed with cancer in December. he has gone down hill so fast in the last month, and the docs think he only has a week or so left. my god, I stopped over this morning and it broke my heart to sit and hold his hand. I have been friends with him for 20 years now... my dear girl friend has been in denial I think for months and all this is hitting her so hard she is a mess.

I told her about the IIWII and that is really helping her accept.


so the forum has been quiet lately, hope it is just from the summer time blues? If you are out there reading and new--tell us your story. we care!

 

[Grumpy'sWife]

Hi all, still here...although very tired. Grumpy is holding on. He continues to lose weight and is starting to talk of letting go. In his words, he is sick and tired of being sick and tired. All I can do is be here for him and try to keep him comfortable. We are blessed with a great hospice team surrounding us.
Hugs to you all
~ Kaye

 

[gooseberry]

I think its been quiet because we don't hear from Dalvin and Clearwater Al anymore....bigmark has no one to really aggravate! .