hubby is so weak hospice now says to keep him in bed

numb

24/7.   He is eating but not like he used to. Has had a fever and peeing blood clots for 4 days now, they prescribed antibiotic but it's not working, most likely the suspected bladder cancer.

Hospice went from saying he was doing great a week ago to saying looks like he is "transitioning" and saying it could be weeks????? : (

He  is still talking (and yelling at me when I change his bed etc)  but his eyes look "lost" sometimes, he has has some deliurum.   

Have never seen him so weak even after hospital stays for serious conditions like sepsis.

The past couple years he has gotten worse in that he tells me he hates me, he wishes I would leave, he has swung at and a few times hit me. When I try to explain I'm changing his clothing so he does not get sores (he is continent alot) he does not understand. There have been days when I have lost love for him, when you hear someone tell you to leave etc everyday it wears you down.

I know it's the disease. But it still hurts my heart. 

We have been married 42 years, he is 79 and I am 62.   We have three wonderful children and two grandsons.    Have been trying to slowly tell them things are progressing and my heart is breaking for them. 

Hospice suggests we put his bed in the living room does everyone do this?  

God Bless

Joydean

Numb, I’m so sorry for what you and your family are going through. This disease is the most horrible thing ever. What it can do not only to our love one but the family. Yes we know it is the disease that causes them to say and do the things they do, but it does still hurt! If we didn’t care so much it might be different. We can’t turn our heart off and on.  Please take care of yourself. You are in my prayers and your family. God will give you the strength to do what you have to.

SusanB-dil

Hi numb - i agree is is not 'him', and you and all of us know it is the disease.  and no, that doesn't make it easier when you love them and they are hurtful.  ((hugs))

MN Chickadee

How often is he getting his pain medications? Is it possible to hold changing etc until 20 minutes after you give him the pain meds? The last few days we found every two hours right before needed to repositioning and mess with my mother was the best outcome, because turning her caused great discomfort. She wasn't verbal at that point but I am sure she would have been yelling if she could. I am so sorry for what you are both going through. Of course it wears you down. Once it is over I hope those rough edged memories fade and the good ones shine through. If hospice says he is transitioning I would get ready for it to be sooner than weeks. They kept shortening the timeline for us. The day they said mom was transitioning they said maybe 2 weeks. The next day they said one week. I could tell that was BS just looking at her. The third day they said a few days.  She died the following day.  I was not there 24/7 but most of each day and never noticed some of the signs of active dying, and I was looking. She didn't really get the mottling or fever. Her pulse did go way up which is indicative. I don't know if some hospice nurses  just have a hard time telling the family how little time they may have or if they truly believe what they are saying. Or maybe sometimes those generous timelines are correct. In any case, I would encourage your kids to come now and tell him what they need to. Especially if they are out of town, now is the time to make arrangements if it's important to them to see him. It is such a difficult time. Each moment and day is agony. Once my mother was transitioning I desperately wanted her to pass, to get it over with, to release her from suffering, to make it all stop. Yet I did not want to say goodbye. I wanted it to come and to never come. He is lucky to have such a caring spouse. Take care, I will be thinking of you.

numb

thank you all for your caring replies.  Thankfully my kids all are local and see him every week anyways. Tomorrow is our grandsons 10th birthday so my daughter will have it at my house so my hubby can be included.   I asked him about moving the bed to the living room told him he can watch TV with me etc he said he does not want to be a spectacle when people come over .  Asked him if he want a tv in the bedroom he says he does not care.

Waiting for hospice nurse to call she was going to make a special visit today just to see how he's doing. Hopefully get some more info from her. 

jmlarue

I certainly wouldn't move your DH into the living room. He has a valid point about receiving unwanted attention. He's been vocal about not wanting your attention or care, so moving him into your living space under your constant watch would probably be very upsetting to him. Also, I'm not sure that having your grandson's birthday party in your home is really the best decision for either your husband or your grandson. Of course, I don't know your family dynamic, but I can't imagine it would be easy holding a combination death watch and happy birthday celebration for a child. Like I say, I don't know your family dynamic, but I can tell you that my mother refused to let her grandchildren visit her in the last couple of months of her life. She was adamant that she didn't want them to remember her that way. Perhaps, your husband feels differently? You know him best.

mommyandme (m&m)

How’d the bday party go? 

As far as moving the bed into the living room… I’m not there yet as I can still get my LO out of bed but I have considered this realistically.  I’ve decided that I will leave her in her bedroom.  She already has a tv in her room.  If I was you, I’d get a tv for your husband in the bedroom.  

The reason for my decision is I know my LO likes to be alone at times and gets tired of me always in her space.   I have a comfy chair in the bedroom for anyone that visits and I can always add more seating.  I also thought about how I’d like the living room to be a living room for my own sanity. 

I’m sorry for your journey as I am for all of us.

abc123

Dear Numb, I'm thinking of you today and wondering how you are holding up. How is your husband doing? I hope your grandson had a nice birthday celebration. Please let us know how you are doing when you have time. We are all thinking of you.