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Tokahfang

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Jan 31, 2010
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791
Diagnosis
07/2009
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US
State
VA
City
Richmond
Dear Caregiver forum,

My needs are relatively light, and my husband and sister share them as schedule permits. So far that has put most of it on her, and she seems to be doing well. My progression has been pretty fast for a PLSer for the last 6 months or so. When it sped up we had an ALS scare, and that was very tough on my husband. We are over that now as my symptoms have stayed in upper motor neuron land, and things had settled down.

The consequences of my increased immobility and ongoing voice loss have hit him very hard these past few weeks, and me using my speech device to avoid critical overtiring broke him today. I was wondering if you might have ideas about how I can support him in this time. There isn't much I can make easier on care, I am still transferring myself and doing my own personal care. He is just taking it so much worse than I am, and I desperately want to help.
 
You are so incredibly sweet to worry about making your caregiver more comfortable! You need to focus on things like avoiding critical overtiring and stress. Talk with him and explain this to him. Maybe he should take some medication - example Ativan. My husband is the PALS in our family and I'm the CALS. He is taking everything much harder and more personally. Maybe that is just the nature of a man?
 
Beky,
I hope that this has improved and that you both have found some peace. You sound like my Web, always so concerned about Matthew and I and puts our needs above his own. This is the giving and sharing of love. Is it possible for you to write him a love letter that tells him how you love him? Web and I still leave one another little unexpected love notes in the most unexpected places and times. Love to you brave soul.
 
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It is... easier for now, I think. My assistive devices are catching up with the PLS again, and that helps his outlook. He is not much of a reader, he often doesn't remember anything he reads (say, in an email) but I will try to think creatively. Unfortunately, his emotional fortitude hasn't actually increased, so this calm won't survive another dip.
 
Beky-
It is so hard, for both sides.

Just another angle to consider- men are intuitively "problem solvers". When we (wives) talk about a problem, or in your case just typing - which he perceives as a problem- they want to "fix it". They think that is their job. When they can't fix it, it contributes to feelings of failure. It is just something that you have to talk through, give it time & patience.
Just an idea.?. Hope it makes sense.

I do not mean this in any derogatory way to the guys; it is a "Mars/Venus"thing! IMHO
It is what we love about you guys! ;-)
 
I'm afraid I relate to your husband. I wish I could give you advice, dear one. I know your struggles are more than enough for you to worry about. Perhaps this is just part of his journey. Even though we are on the path together, we must each one have our own experiences.

Perhaps we won't take another dip well. But I bet he will find a new normal in each stage. Perhaps in each day. I'd imagine his heart is broken. Is he sleeping well? Talking to a Dr. is a good idea.

I will keep you all in my prayers.
 
Beky-
It is so hard, for both sides.

Just another angle to consider- men are intuitively "problem solvers". When we (wives) talk about a problem, or in your case just typing - which he perceives as a problem- they want to "fix it". They think that is their job. When they can't fix it, it contributes to feelings of failure. It is just something that you have to talk through, give it time & patience.
Just an idea.?. Hope it makes sense.

I do not mean this in any derogatory way to the guys; it is a "Mars/Venus"thing! IMHO
It is what we love about you guys! ;-)

it is excatley how i feel i cant fix it and want to so bad , and i do know none of us can fix it , but it still hurts that i cant
 
Thank you all for the encouragement! He has pre-existing depression that has ruined his sleep since 2001. He could (and has) slept more than 12 hours a day and still been tired, he doesn't get a lot out of it. He sees his doctor regularly, and they tinker with his meds when needed. He is on amphetamines that keep him awake during the day, and that helps a little.

When we got married, we knew about his depression. We didn't know the name of my disease, but we did know that I had an insidiously progressive neurological problem. Our first dance was with me in a wheelchair. I was super capable, able to keep house and care for my sister's newborn as a fulltime wheelchair user. We had a concept that it would continue to get worse, but at that rate I won't have been needing a powerchair for at least a decade. When we got the HSP diagnosis, we were both happy. I had reached the end of where that progresses to, and was learning to bop around with impaired hands. It was a really tough time when the progression not only continued, but sped up crazily. He hasn't been the same sense. I was a wheelchair user before, but aside from an uncluttered floor I didn't need anything special from him. I did the chores, the cooking, the packing, and disappeared on vacation to camp occasionally. At most, I needed help reaching things on occasion.

There was something of an implied contract when we got married. He would do the brute labor and work to support us, and I would take care of all of the home stuff and things that required consistency, like budgets. I would butress him mentally, he would fill in my physical gaps. I feel like a complete dud on my end, instead of helping him live with depression better, I am making it worse.
 
Haven't all of our implied marital contracts been broken?!? On both sides!
 
Heh, I suppose so. But it still eats at me!
 
Beky, "For better or worse, in sickness and in health..." You could not promise him what is totally out of your control. You're obviously very creative and try hard to help not only yourself but those within your sphere. For what it's worth, I don't believe it's possible to love and get through this (whatever form of "this" you have) without the temptation at least of feeling guilt. Every choice has its downside. This "guilt" is on the part of both patient and caregiver. Just love him as you obviously do... and meanwhile keep on doing the best you can do. I will pray for you two.
(((Hugs))), Ann
 
My father passed away with als. He constantly had concerns about us. He was so unselfish as I called it. I could not beleive how he was constantly worried about us and how he did not think of himself the entire time. He was an awesome dad. It sounds like you are awesome to. It just shows how great your character is that you would think of others with your situation.
 
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