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Thalle sorry for your loss I'm sure you were thankful your mother didn't suffer longer than she did.
cyn great post I am 'hearing' more power in your voice today chin up just keep moving forward we can't change but we can charge ahead. Fabulous insight today very proud of you and give DH a hello & hug from me please.
Sudcaro don't you sell yourself short you've been a remarkable caregiver as well on this long tiring journey your family has had to endure. Great job lady.
The doctor decided we are going with a small amount of Morphine under Dh's tongue every 2 hours for pain. That's a lot of hours at night but I'll figure it out. They suggested I wait until he wakes up and then give it to him as it takes effect faster then a pill in the tube. I'll probably give that a try since he will be needing his anxiety medication every 3 hours so maybe we can do them together...hopefully. I think it will be early to bed for us tonight. My poor critters just cannot figure things out--first they lose their room, then we are up all hours of the night and they still cannot go outside and just a lot of changes and my critters are creatures of habit poor babies. But they will adjust just as we will. The nurse said my poor DH looks much weaker today.... But since he is on a vent and feeding tube it's hard to tell how he really is. Just a guessing game and all I pray is he doesn't suffer so I keep him comfortable now.
Dear cyn.....so much to deal with and to accept! It really sounds as if DH is losing his fight with als....or maybe is winning.....depends on your point of view.
My mother had a relatively fast turnaround, it was five months from the start of everything going downhill (in a serious way) to the funeral. I do not know if I would be strong enough to deal with the aftermath of ALS, you are a very intensely powerful person to deal with that.
Im sorry sweetie,i really am....
Its very hard watching..... ESPECIALLY WITH SOMEONE YOU LOVE!!
The doctor decided we are going with a small amount of Morphine under Dh's tongue every 2 hours for pain. That's a lot of hours at night but I'll figure it out. They suggested I wait until he wakes up and then give it to him as it takes effect faster then a pill in the tube. I'll probably give that a try since he will be needing his anxiety medication every 3 hours so maybe we can do them together...hopefully. I think it will be early to bed for us tonight. My poor critters just cannot figure things out--first they lose their room, then we are up all hours of the night and they still cannot go outside and just a lot of changes and my critters are creatures of habit poor babies. But they will adjust just as we will. The nurse said my poor DH looks much weaker today.... But since he is on a vent and feeding tube it's hard to tell how he really is. Just a guessing game and all I pray is he doesn't suffer so I keep him comfortable now.
God bless you and your DH, Cyn....... (((((Cyn and DH))))))))).
You're a beautiful, strong and wonderful person......
If any of you folks have Netflix watch the movie called So Much, So Fast about Stephen Heywood's journey with ALS.
I did learn a thing or two, ALS was (in 2006)/is called an "orphan disease" until there are enough afflicted with a disease there is no funding for new meds or clinical trials. For 9 years they were using the same drug with nothing new coming onto the market. His family started their own research foundation so they decide to be proactive & fight it now their foundation is the biggest in the world.
Quote:
In 1999, Stephen and his brother Jamie founded ALS TDF, the world’s first non-profit biotechnology company, now widely recognized as the leading edge in a new breed of institutions that are changing how treatments are developed for disease. Today, ALS TDF is the world’s leading ALS research center and has defined new standards for quality and effective research.
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.
Acceptance is the hardest part to achieve. It can also be the start of healing in a way for the care giver. It sounds like you have got to that point. Our hearts, thoughts, and prayers are with you and your DH. About the only thing you can do now is keep him as comfortable as you can which you are doing. Is there any type of music he really likes? Maybe playing some low in the background will help. He might hum along in his mind especially to songs that remind him of good times.
When my BIL was diagnosed with ALS his wife (my wife's identical twin) ask privately how long he had. The docs said he had the rapidly developing type and maybe 18 to 24 months at most. They told her that was the best kind to have for him and her both under the circumstances. He made it about 13 months.
You and your DH have dealt with this much longer than that. Him fighting and you caring for him. I think you both are heroic in this long struggle and you have done your very best. Don't ever think you haven't. My heart goes out to both you and him.
I admire you for how you have cared for him all this time and still keep going.
I think there is a special place in heaven for both of you for enduring such trials of earthly life.
Cyn, I couldnt reply but I had been thinking of you. Its sad to know that DH will now require 2 pills every 2 hours, apart from everything else that he is taking. Tight hugs to you. I can only imagine the stress you must be going through.
CTscan for the Sweetpea today. It's going to be a long day!
Fingers crossed that it's a good report!
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. But since he is on a vent and feeding tube it's hard to tell how he really is. Just a guessing game and all I pray is he doesn't suffer so I keep him comfortable now.
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