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Thank you everyone for all those wonderful caring thoughts! I do feel each and every one of them! Actually last night was really good..DH did not require any Morphine during the night and even slept right through 'til morning (well 5am) and then I gave him some more morphine and anxiety medication. I have been reading on many ALS sites and several other caregivers have had the night time problems and said they leave the TV on and a light. For some reason it makes the person with the ALS feel more secure--it worked although at about midnight I turned off the light as the screen on the ventilator is quite bright so I decided that would be enough. Only problem is the tv goes off every so often to a horrible buzzing sound so I had to jump up quickly so it wouldn't wake my DH and turn the tv off and then back on but at least my poor DH did not require all those meds and he seemed more alert today. He is once again sleeping and still I know in my heart his body is failing him---what breaks my heart is I so wanted him to be able to at least get out of the house before this point. Maybe with prayers he still will...so I pray constantly! Hospice called me yesterday to let me know that there is no help for the cost of having my DH's transportation when he does pass to the place we have agreed to donate his body for testing. I have decided to talk to his son about this. I'm sure he can do at least that much for his father. Just talking about it kills me but I know it has to be done. His dearest friend that comes by 2 times a year called yesterday to ask if it would be okay for them to come by around the 10th of Sept. I told them please and yes! The lady from Hospice said it might be better if they could come sooner????? That is when I started letting the reality sink in. The ALS clinic wants to bring by the wheelchair my DH has been so excited about next week....now I don't even know if he will be able to use it now and just cried when they told me they were bringing it. To little to late.....seems like that is the story of ALS.
My neighbors brought me dinner again last night--They are so nice to me. I just don't know what to say except thank you. I am blessed.
Thank you everyone for all those wonderful caring thoughts! I do feel each and every one of them! Actually last night was really good..DH did not require any Morphine during the night and even slept right through 'til morning (well 5am) and then I gave him some more morphine and anxiety medication. I have been reading on many ALS sites and several other caregivers have had the night time problems and said they leave the TV on and a light. For some reason it makes the person with the ALS feel more secure--it worked although at about midnight I turned off the light as the screen on the ventilator is quite bright so I decided that would be enough. Only problem is the tv goes off every so often to a horrible buzzing sound so I had to jump up quickly so it wouldn't wake my DH and turn the tv off and then back on but at least my poor DH did not require all those meds and he seemed more alert today. He is once again sleeping and still I know in my heart his body is failing him---what breaks my heart is I so wanted him to be able to at least get out of the house before this point. Maybe with prayers he still will...so I pray constantly! Hospice called me yesterday to let me know that there is no help for the cost of having my DH's transportation when he does pass to the place we have agreed to donate his body for testing. I have decided to talk to his son about this. I'm sure he can do at least that much for his father. Just talking about it kills me but I know it has to be done. His dearest friend that comes by 2 times a year called yesterday to ask if it would be okay for them to come by around the 10th of Sept. I told them please and yes! The lady from Hospice said it might be better if they could come sooner????? That is when I started letting the reality sink in. The ALS clinic wants to bring by the wheelchair my DH has been so excited about next week....now I don't even know if he will be able to use it now and just cried when they told me they were bringing it. To little to late.....seems like that is the story of ALS.
My neighbors brought me dinner again last night--They are so nice to me. I just don't know what to say except thank you. I am blessed.
(((Cyn)))) glad to hear your DH had a more comfortable night and slept better last night- maybe that light and TV provides enough distraction so that he can relax a bit.
Just a suggestion regarding the transportation issue for your DH to the testing place- might it be that they would provide such transportation- perhaps send someone to pick him up? I ask that because my mother has similar arrangements for when it's her time, but their instructions are to call them and someone will come and pick her up. I'd hope they'd be happy to do that for your DH, it's an enormous favor that you and DH are doing for this place, perhaps a phone call there would be in order to see about this?
I know this all tears you up, Cyn, it's heartwrenching, no matter that you wouldn't dream of being anywhere else, to share your beloved's final journey. I know you know, but those who love and care for you are right there, holding you in our hearts and praying for you and your DH, and wishing you comfort and peace in these days, and the days to come.
Just know, too, that even when your DH is not conscious or seems unaware of what's around him, he still knows, feels and draws comfort from your love and dedication wrapped around him, and his deep love back for you. That's still there, always will be, and you'll both find solace and comfort in this shared love now, as you're able to, and in the days to come.
Sorry to read that Cyn. I so wish you had gotten better news. Don't forget we are here, we have your back, and will be there for you, always.
Big hugs.
Talking about news... Miranda's scan was perfect! We are so relieved! Thanks for the good thoughts everyone.
Cyn, we are holding your hand on this path you didn't choose to walk on. Just hoping one day I will get to hold your hand for real - oh how I wish I lived closer. In the meantime, I am sending you and your DH all the warmth I can to help you go through this hard time.
Big big big hugs.
Ditto what Sudcaro said and I'll add I'm so sorry it is speeding up so quickly for you I'm saddened with you. But for DH I celebrate he is that much closer to going home where he'll have a glorious new body and no more pain.
Sudcaro that is fantastic news on Baby Suds I'm happy for your whole family. Now may your family walk on a smooth path forward.
I am so sorry for your loss Thalle. Yes, once ALS takes it's turn downhill it seems to gain speed and things happen very quickly. With many I know it's undergoing any kind of surgery that seems to weaken the body and a person with ALS does not bounce back like a normal person. So having any surgery when you have ALS should be seriously discussed before hand as it will likely lead to the end even faster. With us my DH was rapidly losing weight so he had to get the feeding peg. We noticed decline in his body and health after that but figured ok we can handle this.....then the trache and that was the straw that broke the camels back so to speak. Had he known he would end up in bed on his back from now on he said he'd have never had it done. The doctors told him he had about 3 days to live if he did not get the trache and ventilator. He "walked" into the hospital to get the trach, was using the computer with his hands and now a month later his hands are curling up and although his legs are still pretty strong his abdomen muscles are gone along with the neck. That was the first to go since he has bulbar ALS. So even though some parts still work the main parts don't and I have been advised not to attempt to move him with the hoyer lift because of the ventilator--we'll see. So he can think, move his legs and arms, use his hands very little and lay in bed trapped inside a body that is dieing. Of course it creates terrible panic attacks which will eventually harm his heart so I must keep him pretty medicated and he sleeps much of the day. He was so sad he missed his car races on Saturday night--just cannot stay awake without the anxiety. I will live forever seeing that fear in his eyes. I just want to do my best to keep him comfortable and let him know he is loved. We talk about God a lot--I told him how lucky he is to be going where there is no more pain or tears. We cried together. This is the hardest thing I have ever done--I would never choose to do it, was not asked but will do my best. Over the last couple of years I have gained a lot of passion for other caregivers and have a much better understanding of what they go though and gained so much respect for them. Some have been doing this for many years.
As far as the aftermath, for me personally it will be a relief not to see someone I love suffer so much, not to worry constantly if I am doing things the right way, to know he is in a much better place and eventually I will join him there. No it won't be easy and a part of me will die with him.
Cyn, usually when I quote someone, I leave in only what I need to make my point. With this amazing post, I'm not taking out a single word. Anyone reading this would not believe it's written by the same lady who months ago doubted herself, felt incapable of doing anything right, and was so frightened she couldn't think straight. You have come so far. No, you didn't choose this path... but you have grown stronger because you followed it.
I'm sort of embarrassed that my words aren't as eloquent as the others, but the emotions are still the same. Sending good thoughts and prayers to you and DH.
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