I'm Sorry, But I'm Just So Sad

wolfen
wolfen Member Posts: 1,324 Member
in Head and Neck Cancer #1

I think the reality of my hubby's situation has just hit me real hard tonight. He sleeps fitfully as I sit by his bedside, mostly mumbling parts of drugged dreams. He can't sit up to urinate, so I hold the urinal for him as he lays. When awake, he is coherent. He sees what the near future holds. Social Services called today to say that PT is recommending an Extended Stay facility upon discharge. She's given me a list of nearbys to check out. I had to be honest & tell her that although I want him home, I can't get him up. It appears he'll need intense PT if he's to walk again. All this and then the ever growing cancer is just too much. He's in no shape for another chemo. I'm just afraid time is running out. His cardio was in tonight, but he's always been a man of few words, sort of aloof. I would cry, but no one would hear. Like our poor Vivian, I am alone with my thoughts.

Thanks for listening,

Luv,

Wolfen

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    You

    I am so sorry to read the news.  My thoughts and prayers are with you and your hubby.  I am in the same situation but right now my husband is doing good but can see the changes starting.  I think all the time about how much longer before he starts going downhill and what will I do.  You and Vivian have been so strong and all I can do is hope and pray that I will be able to do what you both of you have done and continue to do.

    Wishing the best to you both -- Sharon

  • katenorwood
    katenorwood Member Posts: 1,912
    #3
    peace to your heart

    Wolfen,

    I hear in your words all the frustration and weariness of this situation.  I may be a bit bias as I worked at a long term care facility for years.  Don't fear them, they are not like they use to be.  And for heavens sakes girl do not beat yourself up !  You can do more good by having the staff there to do his heavy cares.  My heart hurts for you and your husband.  Remember if you do go this route, you are still his PRIMARY caregiver and always will be !  Hugs and all my thoughts are with you Wolfen !   Katie   

  • osmotar
    osmotar Member Posts: 1,006
    #4
    Friends

    Wolfen ... If want to go to lunch or just talk some time give me a call I'm right here on the west side in Buckeye.

     

    linda

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    wolfen, u've been thru so

    wolfen, u've been thru so much.  i don't know how u stay so strong.  i'm sorry ur hubby needs to be in an extended stay facility but that sounds like ur only choice.  it breaks my heart that u r alone.  u and ur hubby continue 2 b n my prayers.  hang in there and take care of urself also.  btw, how is ur infection?  are u feeling better?

    God bless u, wolfen.

    dj

  • NJShore
    NJShore Member Posts: 429 Member
    #6
    Wolfen

    Wolfen,

    I wish there were words, I wish I was nearby, I'd come and sit and listen and bring you coffee and sit some more. I am hoping that if you need to choose the long term facility, maybe he could rehabilitate to point he could come home. And if you doctor allows, he could come home for day trips until he might be ready for more.

    Life is so unfair, and I hope that you get your miracle. We are going to say enough prayers for him and wish the best of thoughts for you.

    Today you have my hugs, and love...

    Kari & Dan

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Absolutely NO reason to be sorry....

    Reality sucks....the huge life changes that we may think about in passing when we're in our 40's and 50's....but they seem so far away....then reality rears it's ugly head, sits in our laps and there is no escape.  It is scarey and sad!!  Honey, if you were able physically to care for him, I know you'd move heaven and earth for that to happen....your love for your man has shone thru at every hairpin turn, every day, and every night.  The kind of intense PT he needs right now, is not possible to do at home....and with it, there's a chance he can come home and get back into chemo treatment... Keeping those thoughts/goals in mind, while doing the "one day at a time" gig is all you can do.....just today....tomorrow will be here soon enough. 

    Don't think for a moment no one hears your tears....we do....emotionally you've been a rock...well, even rocks crack when hit hard....we're here, day and night someobody is here.....let the words roll....

    p

  • donfoo
    donfoo Member Posts: 1,773 Member
    #8
    sorry

    Wolfen,

    I'm sorry to hear about the worsening situation. It does seem his current condition does necessiate more care than you can personally provide him. I can share with you my recent experience with my Mom in nursing home sitiations. For nearly a year she was at a clean nice place but it was more like a hospital and not very personal at all. Hospital food and all the rest. We move her to a small (6 resident) care facility which was vastly superior. It is basically a house that has all the accomodations to care for the invalid and those needing extra care. What was so great about this place is it IS a home and set up to be very comfortable with living room couches, common dining room table, etc. It is a place where you can go and hang out for as much time as you wish and be comfortable. Able to go outside, enjoy the garden. Have some pets around to add joy. Home cooked meals, no hospital food, so much better. The statff there collectively offers care you can just not do at home. Good luck.

     

  • Sunshine60
    Sunshine60 Member Posts: 81
    #9
    *Hugs*

    I'm so sorry Wolfen- just know we are all thinking of you and you are not alone. Write all you need to- we are listening.

  • jim and i
    jim and i Member Posts: 1,788 Member
    #10
    I know the lonely feeling. I

    I know the lonely feeling. I had many times like that while Jim was so sick. I even stood in the grocery store and cried one time. Even though I can't be there in person I am there in spirit. BIG HUG.

    Debbie

  • wolfen
    wolfen Member Posts: 1,324 Member
    #11
    Sunshine60 said:

    *Hugs*

    I'm so sorry Wolfen- just know we are all thinking of you and you are not alone. Write all you need to- we are listening.

    If Only I Could Be A Fly On The Wall

    In my poor hubby's room. I fell asleep around four this morning & about 10, a lady called from the hospital(not sure who she was) asking if I knew when he was going to be discharged. I mumbled out my best replies to her questions. Hubby called a little later & is now saying he's stopped urinating, & saying something about a radical procedure to remove fluid from his body & that he absolutely can't have rehab. He wants me there right away. I know he gets confused sometimes. He!!, I stay confused most of the time, anymore. Dang, I just can't be there 24/7.

    It was my plan to visit a couple of the nearby Skilled Nursing Facilities that are on the list that was in his room. But may put that on hold. I need to get some current info as to his status.

    Phrannie, you hit the nail on the head about age. Especially when you've been together a long time, it's sort of a "given" that if one gets sick, the other will always be there to give care, never realizing that maybe the illness will be too much for you to handle alone. It's impossible to plan ahead for every scenario.

    Don, I'm so glad you were able to place your Mom in a nice home. I did the same for my Mom at age 90 after a stroke. In our area, there are many Rumanian families that run private, beautiful care homes. Everyone treats the person like family and the environment is not institutional at all. Just filled with love & care. I don't think my hubby will require long term care, yet.

    I've read a few posts, but being short on time, haven't replied. Like Phrannie's pocket & Tim's prayer list, I need to start a mental "thinking of you" list.

    Joe, don't you let that nagging scanxiety get you down. We Texans are tough. My fingers & toes are crossed for you.

    Kari, will be looking forward to your recovery post from that successful surgery that's coming up.

    Sharon, my heart goes out to you as you face the next step in the journey.

    Kate , you are another "rock" for me, along with Rachel, Matt, John, & so many who's names escape me right now.

    Linda, I know someday things will calm down & we can chat.

    Got to run now so I can get a reality check at the hospital.

    Luv,

    Wolfen

  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #12
    jim and i said:

    I know the lonely feeling. I

    I know the lonely feeling. I had many times like that while Jim was so sick. I even stood in the grocery store and cried one time. Even though I can't be there in person I am there in spirit. BIG HUG.

    Debbie

    So sorry for both Wolfen and Sharon

    Wolfen, my heart breaks for you.  I know first hand how hard it is to sit by my husband's bedside and watch him go downhill.  The last time I got him up for a shave, I knew it would be his last and it broke my heart.  I could tell he would not be able to do that physically ever again.  I sat there watching him trying desparately to take care of his shave.  Thankfully together we got him looking nice, but oh how it hurt.  It took everything I had to smile and tell him how handsome he was.  I pray that your husband will be able to recouperate and the outcome will be better.  All I can say is that take the time to be with him when you can.  You will never regret those last moments.

    Sharon, I hate to hear your husband is on a similar trajectory.  What is going on.  Cancer really sucks, we have very special husbands who fight the beast so hard, but sometimes the beast just takes over.  I hate being without David, but he is in a much better place and no longer in pain.  The pain was so great when he started hospice.  I hurt just seeing the pain he was enduring. 

     

    I am praying for both of you and for everyone of the great warriors on this site.  So many are so inspirational to me.

  • ILMM13
    ILMM13 Member Posts: 28
    #13
    Sending hugs and prayers,

    Sending hugs and prayers, Wolfen.  I'm sorry this is so tough.

  • Pumakitty
    Pumakitty Member Posts: 652
    #14
    My heart breaks

    When I was reading this my heart was breaking.  We are in a similar place with my dad.  My heart is breaking for me, but it hurts when I see how my is hurting.  Dad is home, but it almost to much for mom and I.  But the thought of not having him home is horrible.

     

    Hugs and prayers to you both.

    Kathy

  • cureitall66
    cureitall66 Member Posts: 913
    #15
    Feel for you ...

    I really feel for you right now. I can only imagine what the anxiety of it all must feel like. How quickly life can change for us in a blink of an eye. Unfortunately, whether good or bad, we must keep going. I pray that things get better for your hubby and it makes things better for you. Remember, some things are out of our control. There is only so much we can do, the rest has to work out for itself.

    Keeping you in my thoughts and prayers that things get a little easier.

    ~C

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #16
    wolfen said:

    If Only I Could Be A Fly On The Wall

    In my poor hubby's room. I fell asleep around four this morning & about 10, a lady called from the hospital(not sure who she was) asking if I knew when he was going to be discharged. I mumbled out my best replies to her questions. Hubby called a little later & is now saying he's stopped urinating, & saying something about a radical procedure to remove fluid from his body & that he absolutely can't have rehab. He wants me there right away. I know he gets confused sometimes. He!!, I stay confused most of the time, anymore. Dang, I just can't be there 24/7.

    It was my plan to visit a couple of the nearby Skilled Nursing Facilities that are on the list that was in his room. But may put that on hold. I need to get some current info as to his status.

    Phrannie, you hit the nail on the head about age. Especially when you've been together a long time, it's sort of a "given" that if one gets sick, the other will always be there to give care, never realizing that maybe the illness will be too much for you to handle alone. It's impossible to plan ahead for every scenario.

    Don, I'm so glad you were able to place your Mom in a nice home. I did the same for my Mom at age 90 after a stroke. In our area, there are many Rumanian families that run private, beautiful care homes. Everyone treats the person like family and the environment is not institutional at all. Just filled with love & care. I don't think my hubby will require long term care, yet.

    I've read a few posts, but being short on time, haven't replied. Like Phrannie's pocket & Tim's prayer list, I need to start a mental "thinking of you" list.

    Joe, don't you let that nagging scanxiety get you down. We Texans are tough. My fingers & toes are crossed for you.

    Kari, will be looking forward to your recovery post from that successful surgery that's coming up.

    Sharon, my heart goes out to you as you face the next step in the journey.

    Kate , you are another "rock" for me, along with Rachel, Matt, John, & so many who's names escape me right now.

    Linda, I know someday things will calm down & we can chat.

    Got to run now so I can get a reality check at the hospital.

    Luv,

    Wolfen

    Wolfen,
    So sorry I have been
    Wolfen,

    So sorry I have been absent got new phone and had hard time getting back in. I never dreamt that your situation would've taken turn for worse j was praying so hard. I have upgraded to iPhone so I could FaceTime with my friends to offer support facade to face. If u want to call pm me and gladly give you and anyone else that needs a friend to vent to an ear! I am with you and hubby in spirit everyday, stay strong focus on The Lord and the plan he has in store for you.

    Love to you,

    Rachel
  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #17
    How Much Can We Take?

    I have no answer to the question of how much pain and grief one can take.  I feel so bad for you and your husband and wish I could take away the pain.  It simply is not fair.  We could not take care of my Mom and she was in an assisted living faciltiy adn it worked out great or at least as great as we could expect.  We could visit and help some but the professionals did a much better job than we could with the stuff we could not handle.  No matter what happens wish both of you the best that can happen given everything.

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