It's been well over a month since I've posted here. I want to write positive, happy things. I want to say I'm giving Luther the best care, the best life. I can't do that. Each day is slow, long, tiring. It's so cold. It's quiet. We can't get out. So I don't write. There isn't much to say.
We leave for Florida in less than a week! That IS exciting news. We're both hoping for new perspective, new energy. Just being warm. Luther's been cold since last year - he never got warm this summer in Minnesota.
The following are little snippets from other caregivers. I'm in a couple online support groups. I find them very helpful; it's good to know there are resources out there for support and advice. At times, though, it's heartbreaking and a bit scary to look in to a crystal ball and see the future. These were taken from the last month.
From others:
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Think I'm going crazy. I really beginning to wonder if I'm strong enough.
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Does a PALS being "ready" to be called home have any impact on when they pass? My mom told me today that she is ready and then proceeded to give me a few funeral details. She is completely dependent but her breathing is still good. Isn't breathing what "gets" them? I just feel so bad for her and so helpless, she's just laying there waiting to die.
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My pALS passed away in December. My faith for his healing never failed, but God had other plans than the one I cried out for. I would have championed as long as it took to save him but instead we lost this battle and he drew his last breath with me by his side. He is safe in the embrace of Our Saviour Jesus and so I rest in the fact that I will one day see him again. Our young children and I are grieving our loss and are truly devastated. I had hoped that together we could have found a cause for this illness, something that our pALS shared in common that brought this illness on. Thank you for all for sharing your journey and providing insight and help where you could. Be blessed.
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I am so sorry for your loss. My husband was convinced that wasp therapy was the cure. We spent the summer before he passed catching wasp and stinging him in his muscles. I really do believe it helped some. It is a long story, if you ever want to compare notes you can pm me.Thank you for your heartfelt words. If I had more time I would have continued with the honey bee stings following the protocol on Healing Lyme with Bee Venom Facebook group. I have such confidence it would have made a difference...my pALS just ran out of time time...
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Need some advice please. Mom battling terribly with urine incontinence. She is using nappies (diapers) but keeps on getting a feeling like her bladder is pulling. These spasms are becoming extremely painful. She tried a catheter last week which only resulted in loads of pain. Perhaps damage from catheter caused inflammation of urethra? There is some fresh blood in nappy. Tested urine for infection, all seems clear?? She has constant tribe flow that we find difficult to keep up with. Change her nappy constantly.
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Sorry for posting so much today. My husband has been having so many secretions lately. I'm constantly doing the cough assist and suctioning. Is this just the progression? There just so much mucus.
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Taking care of an ALS patient is like taking care of a baby that never grows up...sigh.
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Hospice - Tomorrow we are entering into hospice for my wife, my pals,my love. This step, this final step Is what we need so badly right now. A few months ago, my wife would have nothing to do with it - now she is ready, she knows where she is and the road ahead and she knows we need help. And she is scared, not of death, but of the dying process, and the loss of clarity of mind that morphine could bring.
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It's not good when you realize, as you're getting your PALS out if bed, that you're already sick and tired of the next 14-16 hours and they haven't happened yet.
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OMG! I heard something & went running into our bedroom! There's my PALS laying on the floor with poop everywhere! His caregiver (AM shift for: bathing, etc...) is freaking out & says: "His legs aren't working"! I run to the guest room to get the hoyer lift - come back into the room & the caregiver turns around bumping my coffee cup all over my jewelry on the dresser! In the mean time my PALS is laying in feces & is having a very hard time breathing!
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I know every pals is different but how do we know when we are near the end?
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