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Hospice care

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

My husband allowed the hospice nurse to come. I didn't think he would, and I didn't think he understood it means no more treatment at all. In all honesty he cant have any so there is no point. So he has an infection from his drain, it has caused small undrainable abscesses to form. Basically they gave him antibiotics to take until the antibiotics no longer work anymore and he becomes septic. It won't be long after that. I am barely keeping it together, it's a bit easier right now because he is acting normal. other than his incredible weight loss you would never know he was sick. I don't want to know or even have anyone guess at a timeline there is a tiny bit of me that hopes the dr at the hospital is wrong and maybe the antibiotics will work. I am not fooling myself I know it most likely won't but maybe. I know should be grateful we had 11 years from diagnosis but I am angry.

abita's picture
abita
Posts: 1072
Joined: Dec 2017

I am so sorry. I wish I had more words to comfort you. My heart aches for you.

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

It hurts to read this. 

You go ahead and be angry. It isn't fair; none of it is fair. 

It doesn't matter how many years he's been in the fight, you will always want more, and rightly so. 

I do so hope that when the time comes, that it is without too much pain - but like you, I wish for that miracle. They do happen you know; so keep on wishing. 

Tru

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

I am so sorry for you and your family.  This is a damnable disease. 
Wishing you all comfort and peace 

Pam 

SandiaBuddy's picture
SandiaBuddy
Posts: 1189
Joined: Apr 2017

Such a heart wrenching situation.  I know no words to say.  But please understand we are on your side and ready to be supportive in any way possible.

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

It is always difficult to hit this part of the journey...I went thru it with my sister.  

May your dear hubby be pain free and know what a loving wife he has.

May you both have the most time possible together.

Hugs

Marie who loves kitties

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

Sorry and angry this is happening. I don't think you are fooling yourself by hoping for a good response to the antibiotic. I'm hoping for it too. 

Lily Flower's picture
Lily Flower
Posts: 254
Joined: Jul 2017

You're such an upbeat person, Ruth, always caring for your family and you have a beautiful one!  So it hurts reading this,  There's no fooling of hoping.  All it takes is a flicker of hope is what gives us the strength. 

DanNH's picture
DanNH
Posts: 155
Joined: Feb 2021

What is your husbands first name? I want to pray for him. Prayer and antibiotics are a powerful combination. Despare is the enemy of hope. I keep that message posted close by so that I can remind myself of that when things seem darkest.

Dan

beaumontdave's picture
beaumontdave
Posts: 1170
Joined: Aug 2013

I too am sad to hear this, doubly so because of what I remember of the time now nearing 6 1/2 years past. You and he have my thoughts and hopes for a profound improvement..........................Dave

worriedson714's picture
worriedson714
Posts: 327
Joined: Dec 2019

Praying for a miracle for you and your husband no one deserves it more 

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Ruth,  I would be angry too, most would.  Perfectly natural to feel that way after your husband beat cancer then have this happen.  

Get as angry as need be for peace to follow.

You all are in my thoughts and prayers.

myAZmountain
Posts: 420
Joined: Apr 2018

For you and your dear husband and you family.  Hoping he is comfortable as possible and finds some peace. 

Canadian Sandy's picture
Canadian Sandy
Posts: 721
Joined: Jul 2016

There is always hope and miracles really do happen. Prayers sent your way and May God bless you both! 

Kazenmax's picture
Kazenmax
Posts: 453
Joined: Feb 2016

Ruth, I'm so sorry for this. It's been a long fight. I can't imagine. Please take care of yourself. Sending you love and strength.

K

LindaK.
Posts: 506
Joined: Apr 2013

Ruth, I don't get on here much anymore, but I read your news and my heart sank.  I don't know if you have any updates since this post, but I know what you are going through.  It is tough, but no one can walk this walk for you.  If I could send you a hug and strength, I would.  

Linda

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

He is still fighting but getting very weak. He threw up blood today so I think the end is coming. I keep having meltdowns and had to stop in the grocery store to calm down. I am not ready to live my life without him. my heart is breaking slowly it's like torture. 

abita's picture
abita
Posts: 1072
Joined: Dec 2017

I am so sorry. My heart is breaking for you. 

beaumontdave's picture
beaumontdave
Posts: 1170
Joined: Aug 2013

It is an awful place to be, alternating between a numbing, robotic routine of doing what has to been done, and the moments where it comes to the front of your mind as to what is happening, anywhere and anytime, and you want to scream and wreck something [that's more me, I suppose]. Prolonged trauma like this does come with a cost later, I'm sure I had PTSD for quite a while. Know that after doing your best to be there for him, you'll need to look after you, even while or if you don't sense a problem. Enduring the moment is all we can do, I hope you find strength to deal with it all.....................................Dave

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

I've been thinking about you all so much.  Not being able to help/fix him has to be the worst torture as you said.

Losing two sisters to CF was just enough to make me go crazy with the helplessness I felt in the whole process.

Let those emotions out when they come, all of them.  It will help you get through this with a little more mental strength/clarity for the days to come.

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

You chose the right word.

You will never be ready, there is no 'getting ready' not emotionally. You may be able to take care of buisiness, but emotionally, it is a lost cause. 

Thinking of you and your lovely family. 

Tru

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

Are with you and your family 

p

Sestra17's picture
Sestra17
Posts: 62
Joined: Jan 2018

I'm so sorry Ruth.

LindaK.
Posts: 506
Joined: Apr 2013

Hi Ruth, my husband was on home hospice for about 3 weeks and then I had to take him to a hospice facility.  Home hospice here was a joke, they would come once a week and just type into their laptops.  Our daughter is a nurse and we could not care for him 24 hours/day. He was falling and we had to get some rest too.  Taking him there was the hardest thing I had to do.  Being there, however, was very comforting to me.  He was there 11 days, 7 days unresponsive.  The care there was like a spa, for both of us.  I could finally just be "the wife" and not the caretaker.  The only time I left in those 11 days was to go to the funeral home to make pre-arrangements.  I was in kind of a bubble, which helped me manage.  It is a sacred place to me.  One kind of funny thing, the home hospice people came and sat with me one day and just stared sadly at my husband. I told them to leave, they couldn't do anything for him there and surely didn't do much for him when he was home.  Thankfully, they left and didn't come back.  You and your husband can call the shots, As hard as it is, ask him what he wants so he feels in control.  

Linda

Twinzma
Posts: 237
Joined: Jan 2018

I am so sorry honey. I know that there are no words for what you are going through. I pray for a peaceful transition and for you to find peace. Please feel free to reach out to me personally. You can email me at my user name @ ymail.com. HUGS!!!!!

 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

My thoughts are with you and your husband.  I have been in similar situations with family members...

danker
Posts: 1282
Joined: Apr 2012

When hope ends, all we can do is Pray.I"m so sorry!

grammadebbie's picture
grammadebbie
Posts: 471
Joined: Jun 2009

Dear Ruth,  I am so sorry for the circumstances you are going through.  There is never enough time.  My Mama was 97 years old when she went to heaven.  The hospice nurses who came were ok.  The most important thing turned out to be having the ability to control her pain and her anxiety.  I know you are probably physically and emotionally exhausted.  It is truly a labor of love and you will not regret it no matter how hard it gets.  I slept with my Mama so I could listen to her breath and  be close if she needed anything.  My sister and I stayed with her and took turns.  I hope you have family that can help you.   You and your dear husband are in my prayers.

Debbie

 

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

I cant imagine how you feel but I am sure everything you feel is normal. I am sending prayers to you and your family. 

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