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mariasb

New member
Joined
Apr 8, 2013
Messages
9
Reason
CALS
Diagnosis
11/2012
Country
US
State
MI
City
Plymouth
My husband has been in and out of the hospital the past few weeks because of anxiety/mental issues. He had been on some anxiety meds but was still yelling a lot of nonsense mainly at night when we were trying to sleep. Our clinic advised us to take him to the ER to be evaluated. They prescribed an anti-psychotic med which helped some and because of the rapid progression of his symptoms and the dementia we were offered hospice services at home since I am alone taking care of him. Hospice has been wonderful and a lot more aggressive in ensuring his comfort and my ability to sleep so I can continue to care for my husband at home. His is on Ativan and morphine mainly at night and when needed during the day. Like this morning he cried and was a mess for two solid hours saying goodbye because he thought he was dying. Fortunately, his is not able to walk on his own and his hands do not work either so I don' t have to worry about him hurting himself. I have to decide whether we should discontinue to see the docs at the ALS clinic at Univ. of Mich. or continue. They are all about preserving life through feeding tubes and ventilators and sometimes when my husband hears those options he says that he wants them. Other times he is begging to die. Either way he is not thinking clearly because when I try to talk more about his wishes he will say something that totally does not make sense. The hospice docs will concentrate on comfort care if we go solely with them. They have encouraged me to take my husband off his other meds that may prolong life. I have not done that yet but am leaning in that direction. We have two daughters in college who both support not trying to extend his life because their father and my husband is already gone and we have been grieving for the past several months. I know that this horrid disease is responsible but I still struggle with all of this. If anyone out there has had to make this decision please help me sort this out so guilt doesn't take over.
 
You already know the answer in your heart! Go with it and you won't regret it. Will keep you in my prayers. Kim
 
I am so sorry for your situation and the tough decisions you have to make. I think you have already made the decision and just need confirmation that it is the right one. You have to take care of yourself too and your daughters are there to help you get through this. You are in my thoughts and prayers.
 
I agree, you go with your heart. I suggested to my dad when my mom was dying from Alzheimer's to take her off her heart meds. Hospice is right, in my opinion. quality is more important than quantity--for everyone involved. no guilt--think of what he would have wanted when he was not with FTD, back in the old days.

sending you a hug.
 
I agree.. Hospice can be your best friend. Now, we were terribly blessed with our neuro, who was about personal choices. And even though we officially were on hospice, he was always there to take my phone calls or answer e-mails. Two things to check... if the anti-anxiety medication caused problems, you might ask for a change of prescription. Atavan made Glen's symptoms SO much worse, but Celexa really helped. And make sure your hospice nurses know that giving up the psychiatric meds is not an option, for everyone's sake. Hang in there, and good luck!
 
Go with your guts, as the others have said. My PALS has FTD issues too, I got a prescription for him for Nuedexa, got it filled, but haven't started yet, because so far he still listens to some reason. But I know it is there if things become unbearable.
 
Rose, you should start giving him the Nuedexta. it is not an anti-psychotic just for bad times, it will help control emotional labiality and keep his emotions on even keel. My husband was on it and it was great. stopped the inappropriate laughing and crying that he could not control. made him feel better.
 
Thank you all for the information and support. Also for the info. on Nuedexta. My husband has problems with pills and our hospice nurse prescribed the two active ingredients in Nuedexta but in the liquid form. One is the active ingredient in cough suppressant and the other is quinid. I haven't started him on it yet but will today after reading the posts about it. Hospice is providing us with a volunteer to stay with my husband so I can get out sometimes. Tonight I am going to my first ALS support group meeting. I am praying that it is helpful and not too much of a downer.
 
Good luck Maria at the meeting. I had the Nuedexta compounded originally also. not quite as good as the perfectly manufactured one, but almost. that is great if you can get it in liquid form though.

Just getting out for a couple of hours will do you good. see if a friend can meet you for dinner after the meeting.! a break can make you a better caregiver!
 
Hi Maria,
I'm so sorry for the situation you find yourself in.

Like others have said I would agree that you have the decision inside you, and really only you can make that one now as your husband is not really able to do this.

I know if it were me (if I had the disease) I would choose only palliative care. My PALS said this at first but now even though he does not have FTD he goes quite up and down on what his wishes are. He says, it's easy to say what you want when you are healthy ...

I think that is a very valid point, but I also know that I would make certain choices. I totally support however each person making their own choice, I'm not saying others should make choices that I would make for myself.

You situation is very hard to live with, and your husband is suffering. I'm so glad you have hospice coming in and their assistance and advice on how to give comfort and support to him now must be a big help to you. I think the support of your daughters on the decision you end up making is a huge point too. It will help if you are all unified on what you feel is right.

Let us know how the meeting went.
*hugs*
 
Hi Maria, I just wanted to send you a message of comfort and support. You are not alone. Try to go to the support group whenever possible, I too was reluctant at first but then found them immensely comforting. I wish you lots of peace at this difficult time. You are in my thoughts.
 
I wish they had a support group where I live. Nobody around here even see to know what ALS is.
 
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