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Amandagall5

Active member
Joined
May 9, 2015
Messages
34
Reason
Lost a loved one
Diagnosis
12/2012
Country
US
State
OK
City
Midwest city
Here's the story,
My husband was prescribed baclofen 10mg 3x a day for spasticity ( he felt like his body was freezing up especially at night). He wouldn't take the morning dose so his doctor said it wad ok to take one at lunchtime and two before bed. Until yesterday that was what he took and has not been complaining of spasticity for a couple months, so all was ok there. He does have a problem with his right leg stiffening and straightening and his foot coming off the footpad on his wheelchair. This happens about every five minutes or less, each time I have to bend his leg to put his foot back in place. I have done this so much against such resistance from his leg that my arm and shoulder are starting to hurt. So yesterday we saw his neurologist and I asked about the leg. The neuro said it was because the muscles in his leg had too much tone and increased the baclofen to 15 mg 3x day. My husband all of a sudden is refusing to take any baclofen at all, saying it makes him feel bad. This I don't understand since he has been ok all this time up to now. I am so mad and frustrated with this, it seems that he knows better than his doctor, and doesn't want to make things any easier for those looking after him.
He was approved for hospice care today and the nurse is visiting tomorrow to go over things with us. I plan to tell him or her about his stubbornness.
He makes me want to scream sometimes.
Why won't he try to help himself by taking the medicine?
It's no good asking him why he's being like this, he will just say that he doesn't want to talk about it.
Sometimes I just want this to be over already.
Sorry, thanks for listening.
 
Oh Amandagal5,

My heart aches as I read your post. This sounds just like my husband. As a matter of fact, at his memorial service our sweet hospice folks referred to him with terms of endearment being "stubborn". We were able to laugh with warm hearts as we remembered his adamant stance on a number of things that were to his benefit but which he refused to give into only to agree later.

I don't know what to tell you other than as difficult the struggle is having to contend with his stubbornness my heart goes out to you and I wish I could do it all over again and cherish every single moment good or bad...with the opportunity to appreciate the bad.

Please DO NOT apologize your feeling and your exhausted body deserve a break and should be respected. God be with you and your husband.

Sending hugs and prayers your way.

God bless...
 
>Sometimes I just want this to be over already.

me 2 ...
 
Amanda,
Upping a baclofen dose or just taking it over time can cause feeling worse, fatigue, dizziness, nausea and all that.

If your husband does not load up on caffeine much, he might try tizanidine, a similar drug but more tolerable for some, esp. at higher doses. Low-dose gabapentin might help as well, or can be used in combination.

For his feet coming off the footpads, we put a single blocks of foam (like the kind used in mattress pads) across both footpads so Larry's feet sunk in and were more comfortable. He wore socks, no slippers or shoes, for more immersion in the foam. Massage of the underside of the foot and both sides of the toes, or whatever feels good to him, when he wakes up should also help, preferably also before bed. He might also like a low-voltage heated mattress pad if he gets cold. Deeper sleep helps a lot with comfort during the day.

As far as telling the nurse about his "stubbornness," I doubt that would lead to anything positive. Please remember that there is very little your husband controls, that is important in his life. This is one such thing. You have supported how he wants to live, and if he is ready for hospice, it is time to support the way he wants to die. There are options other than baclofen, which may not be the best option anyway. Don't spend your last months together arguing about drugs, but try to find the things that make you both happy.
 
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