CALS Roll Call Continued

I found it easier to anticipate one event at a time. Like, do breakfast before figuring out what's next (except for hard deadlines like outside appointments and repairs). If the NP comes and you are still doing breakfast, so what? Very little is more important than exercising what control you can to pace yourself, esp. when you are exhausted.

Hope you are getting some rest tonight.
 
Outstanding pic, MJT! So glad you could make that happen.
 
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Mary- how was today?
 
Much better..Thank you for asking. Did go out to the beauty salon. My son came and got his dog. I love the dog but he does wake me up at night. One night he wanted to be fed at 3 a.m. My husband slept through the night last night which is a good thing. I stopped trying to give the secretion meds at night unless he is having a problem. I am exhausted when I don't get a full nights sleep.
 
Mjt. Love the wedding.
Mary. Thinking of you.
My husband has a board he writes on. Instructions for me. I just wish that once he would write, i love you. Nope. Instructions.
 
Tomswife, my husband was the same with just writing instructions. It always made me so sad. He had FTD so I know put wasn't his fault, but it still sucked. One time I asked him if he still loved me, and for 2 days in a row he wrote "I love you" on his board to me. It made me so happy. I'm glad I took pictures of those writings.
 
So glad you got through that rough one yesterday Mary and today is better.
I have to say it: doggone? hooray!

I have found I am need sleep so much more than I ever realised. No wonder deprivation is used as torture!
 
I talked to non profit here that offers palliative and hospice care. We are at the palliative stage . I think the nurse will be helpful. We dont have a nurse now.
Also filled out the very difficult POLST form. Defining Tom's future with boxes left checked and unchecked on a green form. :(
 
I hope Palliative care can be of help. We have palliative care write some of PALS non ALS prescriptions. They have been good about this. We have the POLST taped to the wall. I am not even sure if it is what he actually wants. Ours does say to transport. I don't think PALS knows what he actually wants.
 
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My PALS and I tried to discuss the minutiae but gave up. He has a Healthcare directive and signed DNR, but there are still murky scenarios. I hate ALS.
 
Tom smiled at me. Usually he has a vacant stare. Watches TV. Listens to an audio book. But does not relate to me at all, other than as his caregiver. As his caregiver he writes me notes on his scribble board. But he does not relate ti my otherwise. I get very lonely and I dont know how to reach him.
 
I'm so sorry, Tomswife. Maybe he is so sunk in his own sense of futility and sadness he just can't relate outside himself. Sending hugs - you are doing an amazing job as this horrible disease has come at you full force so fast. Hope you'll get more smiles.
 
I am sorry. At least today he smiled. I don't know the signs of FTD. This has come on both of you so quickly. Seems like yesterday you were driving together along I-95 and visiting the art museum. And didn't you drive along the Hudson together? It is a good thing that you were able to take those trips and can treasure those memories.
 
If his breathing is as poor as it sounds, the buildup of CO2 can cause him to be tired, vague, headachy, unable to concentrate etc
You may find an increase in some quality of life once he has bipap help.

FTD usually starts before the ALS and most PALS have fvFTD (behavioural variant). I have information about this but you have to go to my profile and dig as I can't post the link.

I am guessing his breathing is possibly causing a lot of issues. Doesn't make it any nicer for you on the receiving end I know
 
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