Roxanne Kusske
Forum Replies Created
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I would have made my husband use a voice bank, I would have made him use the eye gaze machine, even though he didn’t like it. Because in the last few months he was alive, communication was a nightmare! He was a stubborn man, he didn’t want to fight the disease, so it was a constant guessing game of what he wanted/needed. I had to watch his eyes look at things to figure out what he wanted, or just keep asking him questions. A lot of unneeded frustration, anger, and tears were a daily thing for both of us, especially him. I miss that stubborn man; diagnosed 8/2019, passed 11/2021.
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I too enjoyed reading Rick’s column’s/stories. I will miss reading them. Thoughts are with his family.
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I made a “she” shed out of my garage! Which was no easy task as my husband did body work and painting out there, but I managed with the help of family and friends. My husband sleeps in his recliner in the living room, so I made our bedroom my own! I spend my “free” time decorating, arranging, re-arranging, and then enjoy the spaces, all in between my husband’s calls (banging his backscratcher on his side table cuz he can no longer speak) for care. Doing this is destressing for me.
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Thanks ladies! Sometimes I just want to throw my arms up and say “I’m done”! But I could never do that to him.  So it’s good to have more help now.
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Just started my husband on Hospice yesterday. He isn’t close to dying yet, although I don’t know for sure; but we need help and they are there in any way we need. He refuses any type of life saving options, i.e. feeding tube, oxegyn, etc. So I get to just watch him die a most unpleasant death. Fortunately Hospice will be there to make him comfortable, and give me support, when the time comes.
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My husband was diagnosed in August of 2019. He made his 55th birthday and Christmas, but he doesn’t think he’ll make it through the winter. I think he’ll be around for at least another year, but he keeps getting weaker and weaker. He refuses to have a feeding tube or breathing machine, and just wants to go naturally. He doesn’t have a need for those things yet, but doesn’t want to prolong any of this. So it’s hard to try and keep his spirits up sometimes, and it’s hard to keep going with a smile on my face for him, but I do because he would give anything to not have to have me help him, to not have ALS. The other day he had a dream that he got up and walked across the living room floor; I almost broke down crying then. But to answer your question, I take care of myself by getting my nails done every 2 or 3 weeks, by always having projects to do around the house, and my husband and I have been going through all of his things and giving them away a little at a time, to friends and family. I want him to have a say in who gets what, and getting this done now will make it easier for me when he is gone. We have been married 32 years. My daughter is pregnant with our 3rd grandchild due in July, so I’m excited but my husband, well he doesn’t think he’ll be around. It’s very depressing sometimes, but I tend to be a bit of an optimist, which seems to help me through all of this.  Oh my goodness, now I’m rambling! Thx for letting me vent! 🙂
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Our Neurologist and also the ALS specialist doctor’s were very empathetic when discussing my husband’s ALS diagnosis.
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We recently took out our tub and shower and built a walk in shower, and will have a little removable ramp to go over the lip and push my husband’s commode/shower wheel chair into the shower. Just need to re-paint the walls and ceiling above the tiling, and then we can use it. I’m so excited that he finally, after several months, gets to take a shower… no more sponge baths! 🙂
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My husband took the Riluzole for about 2 weeks, and was constantly tired and nauseous, so we decided it wasn’t worth that, to only live an extra couple months, after the disease is in it’s late stages.
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Congratulations!