Riding the roller coaster
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Dear Gail,
I am glad your friends and family are there to help and support you through this trying time. My heart goes out to you and your dear children. Being at his side and keeping him as comfortable as possible is the most important thing you can do for him now. My thoughts and prayers are with you and your family.
Hugs,
DarlaThanks everyone for your thoughts and insights. My husband took another downward turn yesterday and so my mother picked them up early from school and brought them to me. In as gentle a way as I could, I broke the news that not only was their father not going to make it, but that he was no longer responding very much. I watched their hearts shatter, and my 11 year old son let out a visceral cry that ripped me to my core. They got themselves back together though, and each had their time with him to say farewell.
His immediate family was here all day yesterday and my closest friends have been rallying around me as I now hold his bedside vigil. Of course nothing comes easy…pain and anxiety meds seem to be doing their job but he now has a fever and we’re just doing our best to keep him as comfortable as possible. I just keep praying that somehow his journey will get easier..
GailGail….love the picture of your beautiful children. Thanks so much for sharing this great day with us. With all that’s going on you truly are superwoman and make well thought out decisions. You should be proud of yourself.
Hospice personnel is great, but sometimes they need to nudged a bit (or more.) Don’t hold back from speaking up. Watch closely and make sure your concerns are addressed.
Your husband should receive absolute all around comfort care.
His anxiety can be lessened with medication.
There is a time and place for bedpans.Stay strong, dear Gail, you have a ton of support coming your way.
Hugs and love,
MarionGail,
I am also glad you were able to make graduation day special. Love your photo.
I am so sorry your family is going through this exceptionally trying time. You have taken the
lead with courage, wisdom, selflessness and sensitivity, and most importantly, devotion
to your husband. I can tell you from experience that having you at his side throughout this
Illness matters more to him than you may know. You are doing your absolute best, and you are doing an outstanding job. You will get through this. I am sending loads of positive thoughts
your way today, plus a big virtual hug!Debbie
Dear Gail.
Thanks for sharing. The picture of the kids is so sweet and I’m glad it was a good day for all. Unfortunately, I agree with you that it is time to tell them what is truly going on. It does break my heart too for what you are and will be going through. You need to do what is best for you and your family and if others do not understand, that is on them. I’m glad that you have hospice to help and support your decisions. Thinking of you and the family as you deal with all of this.
Love & Hugs,
DarlaGail,
The picture came though and I’m happy to hear you had a well-deserved day. However, if you want to be with your husband at night, that is where you should be. If his family can’t help you achieve this, it could also strain your relationship in the future.
My heart is with you and you family today and in the future. I am so sorry.
Catherine
Today’s graduation was wonderful. I had a whole day with the kids, from graduation to lunch with their friends to a pool party and then a class party at a sports center…they had a blast. I’ve tried to upload a picture of the grads for you to see.
The end of the day, for me, was filled with anxiety. I learned that the treatment for ammonia was making him feel like he had to go to the bathroom, and since he seemed better they had him go a few times, but each time took more energy from him and by the end of the day he was depleted and scared. His family doesn’t want to understand that the best thing they can do for him is to stay with our kids so I can be at his side at night. He’s a 49 year old man and needs his wife at his bedside at night, not his mother.
Maybe I am feeling selfish, but despite my best attempts not to let them get to me it has.
Today I will tell our babies that their father will not be coming home. It breaks my heart but I can’t have them keep thinking there will be an improvement while he slips from our grasp. I want them to have the chance to spend time with him, and am grateful that the social worker at the hospice center will be close by for support. I know we’re never going to be ready, but I don’t want them to be surprised.
Thanks again for listening.
GailGail…..a great solution to a difficult problem! The fact that your husband may be able to return — once his confusion settles – is excellent news. In the meantime you can focus on tomorrow’s long awaited graduation. We would love to hear all about it.
Thinking of you and sending tons of good wishes your way,
Hugs
MarionHi everyone,
Thanks as always for your feedback. He did decide with his hospice nurse to move to in patient hospice today. We are also treating his system as if we got a reading of high ammonia (they don’t typically do bloodwork like that at the in patient facility) and are monitoring the swelling carefully.
I’m still holding off on telling the kids until after graduation on Wednesday but did tell them that we would postpone their graduation party since it’s just too much to plan right now. They were very sweet about it and didn’t give me a hard time.
The doctor said if it is in fact the ammonia level then we should hopefully see some improvements in the next 24/48 hours and can decide if we want to think about him coming home at some stage or if he will stay there.
Best
GailGail…it’s likely your husband is suffering from Hepatic Encephalopathy, a buildup of ammonia in his brain, related to end stage disease. It’s a quite common occurrence with our patients and can be extremely taxing on the caregiver.
As mentioned by the others you neeed help, either from a 24 hour caregiver or, as much as you don’t care to do so and for reasons well understood, you may need him moved to a facility such in-house hospice.
It appears the confusion can come and perhaps yesterday’s episode won’t repeat for a while. No one really knows.
Given the fact your husband is retaining fluid you would want to discuss with hospice personnel restriction of salt intake.Remember, if and when it should occur and your husband in a confused state not manageable by you, don’t hesitate from calling 911.
All my love,
MarionGail,
With respect to your husband’s decision making or behavior, one of things that took a long time for us to realize with my mother’s cancer was how badly her body was being polluted and how big an effect that had on her mind. She can cancer but she also had all the drugs too, but the worst thing was probably her body being polluted by her liver. All the liver functions backing up into her system.
She had external drains put in to help get the bile out of her system, and these drains have to be swapped frequently because they get clogged. Every time they got clogged she’d get worse and we’d feel like the end was here, but once the drains got swapped out and the liver functions got removed from her system, she became a lot better.
Your husband’s body is just riddled with stuff that’s not supposed to be there. And as an outsider I don’t think we can relate to what that’s like.
Best to your family.
Dear Gail,
I’m so sorry things have gotten to this point. I agree with Catherine. There is no right or wrong to this. Just take a deep breath and do what you feel is best for all of you. Take care and know that you and your family are in my thoughts as you travel this road that none of us wanted or expected to ever be on. You can do this. We are all behind you and ready to support you in any way that we can.
Hugs,
DarlaDear Gail,
We lost Dad in Feb and we were fortunate that he went down hill very quickly at the end. Mom had hoped to keep him at home, but at the last week she realized she was not physically capable. Our home hospice nurse warned us he would be failing soon, but it happened so quickly that it was difficult to get round the clock help in place. We had a few days with someone coming in overnight, but then we did move him to in-patient hospice. Mom agrees, it allowed her to focus on being his wife rather than his care giver.
I think there is no one correct decision, but I agree that you should ask what to expect moving forward and investigate what your options are, and how long it would take to get in home or in patient care.
Lots of hugs coming your way,
CatherineDear Gail,
I am so sorry you and your family are going through this. It sounds like today was really scary. I know your kids only have a week of school left. Will it be better or worse to have them home more? I imagine some of both. Do you have any family or friends that can help you in a scheduled manner, either staying with your husband or your kids? I know that you will need breaks and I bet there are people that want to help you. Keep asking questions of the nurses and doctors. Hopefully they can give you information about what to expect going forward. Know that I am thinking of you all,
Victoria
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