Archive for the ‘death’ Category

Living With ALS – New Moods

Posted: September 15, 2015 in ALS, death, Marriage, Uncategorized
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I have written about the fear and anger of loving someone with ALS, but I never imagined the many, many moods that would attack. I went through crying, anger, grief, disbelief and denial. Now I find myself in protective mode, mama bear, wanting to make sure my man has all he needs or wants. I am taking care of legal issues, to make sure all his wishes are granted.

Bring on the legal forms, the Living Will, the Do Not resuscitate forms. No burial, no funeral, make sure he goes to the ALS society research foundation for study. (His wishes) They handle it all at no cost to us. Unpleasant, things I don’t want to think about. But my love for him pushes this to the back of my mind, I want to make sure he does not suffer, or deal with these stupid details. I want his days filled with family, good food, drink, music and the yard he loves.

How long will he be with me? No way to tell. It could be one year, or it could be three, five or ten! No matter the time, he will NEVER have to deal with the law, choices or suffer due to technicalities. I will make sure all his wishes are legally in place. I will fall back on crying and grief once I know he can live what he has left in peace. That could be tomorrow. At my age I am not prepared to lose my mate of thirty-two years, but I am damned if I will let him suffer one legal problem during the time he has left.


My last post dealt with my husband getting tagged with ALS. I was all over the place with my emotions. Grief, anger, pain, back to anger. He is a GOOD man who never caused harm and he does NOT deserve to be taken out this way. Then today, like a tidal wave, thoughts of what was to come slammed me against the rocks.

I haven’t worked outside the home since 1992! I have CMP, bulging discs and degenerative disc disease. I live with chronic pain, weakness, fatigue, numbness and mental fog. My hubby and I worked out a life that fit us. I shop, cook and take care of the kids schooling, paperwork for their medical care, their social life, our social life and more. He, works for a wage, services the car, pumps the gas, cuts the grass, fixes leaky pipes and deals with the cable company. Put aside the mechanics of life and there is more. He is the first to take my hand when I walk. He is the one who sees if I am upset, sad or in pain. He gives hugs, he makes it ok on days I can’t get out of my chair to cook. He pushes me to listen to music or watch a favorite movie to take me away from the pain. He reads me, he gets me, I get him. We can summon each other to hand out a napkin at dinner with a hand gesture lol. Drives the kids nuts that we talk without words. Thirty-two years together!

What the hell am I going to do if he leaves me? ¬†How will I take the pain out of his leaving from his shoulders? I don’t want him feeling guilt for leaving me. Yet I am in a panic over his leaving.

He will lose his job, hence our medical insurance, income. We owe on the house. I can’t lose the house. I can live anywhere but I am raising grandkids, still in school who need the stability. I can’t cut the grass with a push mower! If a pipe breaks I know how to fix it, but I am physically unable to do so anymore. Hell, my car is twenty years old, if it dies, I can’t buy a new one without his income. I can’t take kids to band practice, they may have to give up band and I won’t be able to pay for uniforms etc.

In full flop sweat here, when I should be focusing on how to be there for my mate. I will be there for him. I guess I can panic all I want, but I will be damned if any of this will taint the time he has left. I will deal with it later. Just another rant from someone dealing with the monster that is ALS.