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The next stepping stone in our journey....


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Well since I last posted we readmitted Dad to the hospital for yet another bowel blockage (which cleared itself - thank God)with another 8 day hospital stay. He has become very weak and unstable on his feet, taking a fall in the hospital that resulted in a big open spot on his head and yet another small tumble when we brought him home. He had a rough weekend and we thought he may have to go back to the hospital but things seemed to settle and he is still at home.

I came home to OH mid week last week - after getting him settled again at home, to get things in order to return to Az and help SM care for Dad. This is really WAY TOO much for any one person to deal with alone. He had agreed to sign up for hospice care but the day he was to leave the hospital decided that it was "too soon" and refused to sign the papers. So currently all of his care is being borne by SM, since my sisters/brother or myself are not there to help. She has discussed the idea of putting him into a nursing home - mostly out of fear and shear exhaustion I think. Supspecting what his thoughts/wishes in this regard might be, I openly and frankly talked to him about his options before I left last week. He truly wishes to remain at home, where he is most comforatable and at peace. To that end, he agreed to my returning to Az to help care for him and said "if" he has to go back to the hospital to sign up for hospice care at that time.

Anyone have a parent who is/was relutant to sign up for hospice? How did your family work through this? Dad simply will not talk about what his hestitations are with hospice .. other than matter of factly saying "its not time yet". I suspect that the finality of death approaching that he believes is implied in hospice has him very frieghtened and that by putting hospice off.. he somehow thinks he is "putting off" death too. I have told him that hospice doesn't change anything (health wise),that if his health improves that he can certainly choose to end hospice and return to treatment and most importantly that it certainly doesn't mean that his life is going to end any quicker, but he really just refuses to discuss it.

My heart tells me that hospice would be very benefical to him and to our family, but he is in the driver's seat! We all know that he alone must make the decision, so for now we will continue to figure out how to best care for him and make him comfortable at home until he is ready for hospice to assist us. At this point, each passing day is a victory and we just pray that we can keep him out of the hospital and at home!

Thanks for listening to my endless babbles. This place truly helps me maintain what little sanity I have left :wink:

Cindy

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Cindy:

Yes, I am facing the hospice decision issue too with my mom and she's not sure she wants it yet either (some days it's yes, some days it's no, right now) -- yet the benefits of the sorely needed extra help exist for both of us. You might want to check out the recent posts in The Path Less Travelled forum -- lots of information showing up there now about what hospice is and people's past experiences with it.

I wish I had an easy answer on how to solve the patient need -- caregiver need issue your family (and I) are up against. My mom, however, is in a nursing home and it has been ordered to stay that way recently by her doctors because in my circumstance, there is just no way I will survive this if mom were to come home for me to caregive on a daily, intensive basis with everything else I have to do on her behalf -- and there literally is no one else but me in our family.

Feel free to PM me if you would like to discuss this further. Unfortunately, I have to cut this post short for now.

Hugs,

Linda

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Cindy,

I am so sorry about the decline of your dad. It is so hard to let them decide things, and then worry about the decisions they have made. I don't know much about hospice but have read a few things that suggest we don't need to wait till the dire time to do it. It is a comforting program and would provide SM with much help.

God bless you Cindy. I hope so much that things take a good turn for your dad.

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Hi Cindy,

I am sorry to hear about your Dad's condition. I lost my Dad to lung cancer 2 1/2 years ago. We also had Hospice for Dad for a period of about 6 weeks before we lost him. Like your Dad, mine was reluctant to discuss his feelings much about his illness and future. Fortunately, Dad had a wonderful oncologist who discussed his Hospice options with him. Dad respected his opion and talked more openly about his illness with his oncologist than with us. I was thinking that maybe your Dad would be more open to this discussion with someone outside of his family. Keeping you in my thoughts and prayers as this is a most difficult journey.

Jean

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My mom had a very rapid decline and resisted the idea of hospice, though she consented to live in my home. My siblings and I called her onc and had a referral set up for Hospice. Hospice then made an appointment when we all could meet along with my mom and Hospice. She still remained unconvinced, but the social worker was so good at reading people that she handled her deftly, and ultimately convinced mom that it would benefit me as caregiver to have the help. Plus, she said, "Give us 2 weeks. If you still don't think you want us here, you can kick us out the door!"

Mom peacefully passed 8 days later.

It is possible that a good social worker might be in order to help your dad accept Hospice care. But it's hard. It's like admitting defeat to them; that there's no more fighting the beast. And in part, that's true. But try to focus on the next leg of the journey - the glorious afterlife!

My best to you,

Karen

(aka Suzie Q)

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Many hospices have home health care also. You might want to think about getting a hospice that does home care to come in and help with baths etc. and then he could transition into hospice with the same organization. The other suggestion I have is if you have an idea of which hospice you wish to use have them come in and explain their services etc. and maybe once he speaks with them he will be more comfortable.

Rochelle

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I am so sorry you even have to face this at ALL.

I love everything that Karen (Suzie Q) said. When my dad's LC went to his brain, my mom and I were faced with putting him into hospice (he had to go to the facility; my mom was handicapped and could not care for him) and even though he was only there for three days, they really made everything so very peaceful for us. They DO understand. If you can even get someone from hospice to talk to all of you, I believe it would be very beneficial. And like Karen said, he could always "kick them out;" I'm sure they've heard it all. It takes a very special person to do what they do.

I do agree, too, that it is like accepting defeat, something of which I am very guilty. We never did have hospice for my mom, who just passed away, and I'll tell you, I will always regret that she died in the rehab center of a nursing home and not here with us, where she lived for three years. Hospice could have made that much easier on us. But of course, I kept thinking that my mom would get better...

Good luck to you. Keep us posted on what transpires.

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Thanks everyone for all your sincere and honest input!!!

When Dad was in the hospital (after the second surgery when they said nothing more could be done) our ENTIRE family did indeed meet with a couple of very nice and informative hospice people. We had a great conversation with these people and at that point Dad was agreeing to hospice. Unfortunately it was also at time where the hospice service was afraid that if Dad signed up for hopsice immediately that the hospital would immediately discharge him to hospice care and there was no way at that point that he could have gone home. Discharge would have meant that Dad would have had to go to a hospice inpatient facility for an interim time to recouperate from two surgeries within less than a 3 week period. I think all of the talk of this plus the fact that EVERYONE was there.. just scared the daylights of of him and left him feeling like he didn't have a voice in what was happening to him. This is in NO way what anyone intended to happen but despite his denying that it had any impact on his decision to wait on hospice, I truly believe that it did.

I talked to him last night and he is beginning to talk about things that need to happen or should happen "after he is gone". This is slightly scary, since he has not previously even wanted to even begin to discuss such issues. He and SM have had a couple such talks in the past week and have shared tears, fears and expectations at long last! I told him I was very happy they had allowed each other to show their true emotion and know where each other stands - without question. They both have a tendency to not show know how to show emotion or feelings so this was a HUGE step for the two of them! He wants to discuss getting a will together and more about what he wants done after he is gone when I arrive back in Az at the end of next week. I am hoping that we can also work through hospice at that time.

The uncertainty of the situation is SO very difficult for the "A+" side of my personality. Never before in my life have I felt that things were so out of control.. I find my self unable to concentrate, unable to make even the simplest of decisions and most days an utter emotional wreak, crying at the drop of a hat. I truely do believe that God never gives us more than we can handle.. but OOOOOHHHH...do I feel tested lately! I know with all my being that nothing is as important right now as being with my Dad, but it doesn't make facing leaving home, my family, and my job any easier. Some days I just feel plain torn to pieces by all the conflicting emotion packed feelings but I remind myself that this is nothing compared to what my Dad is enduring, which somehow gives me the energy/will I need to pick myself up and move on!

Soooooooo...very, very hard to love so deeply and hurt so much, knowing that the end of the journey is approaching so much more quickly than we have ever expected. And yet in the midst of all of the positively raw emotion...there are also small glimpses of peace and the faith that God will sustain and guide us all.

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Cindy,

Your post just brought me to tears because much of what you are going through I am too. Keith refuses to even let the word hospice be spoken.

For him it is literally giving up. It is saying unequivocally that there is no hope and he IS going to die soon. That is not something he can not live with (no pun intended). He once told me that if he actually seriously entertained the idea that he wasn't cured, then he might as well just end it immediately because he couldn't bear up under the fear and sadness that he'd have.

I doubt he will ever consent to hospice. I won't argue with him, as I will never do anything to take his hope and peace away. But I have to admit my great fear is that something will happen at home and I won't be able to help him.

Soooooooo...very, very hard to love so deeply and hurt so much, knowing that the end of the journey is approaching so much more quickly than we have ever expected.

Amen to that. It is the hardest thing I could ever imagine. I think we are unfortunately at the same leg of our journey. I only wish I saw those moments of peace and faith, right now I see fear and pain.

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((Collen)) I too have shed a few tears when I read many of your post about what you and Keith are experiencing. More often than not your post seem to speak right to my heart. Indeed it does seem that our paths are very much the same at this time.

I know that my Dad does not feel that his battle is over and he still has an amazing amount of hope,though I fear I am seeing/hearing it dwindle daily. Like you, I believe in my heart of hearts that Dad will also never allow hospice -- for the exact same reasons that you stated. And after all hope is hope, is hope... and I could and would never that that away! I pray that Dad (and all of us for that matter) continue to find small moments of great hope each and every day!

I hear you loud and clear on the fear of something happening and not knowing/being able to do anything to provide comfort. We went through a bit of this a couple weeks ago with my Dad. I begged him to let me call the doctors, even if he didn't want to know what they said, so that I would know what to do to help him to be comfortable. This is by far one of my biggest fears and worries.

I dislike telling others "that I know where they are or what they are feeling" because in many ways it is so cliché...in this instance however I do feel your pain and I do know what you are going through. I wanted to offer you some hope that the feelings of peace and faith are not far off. A couple of weeks ago, even a little as a few days ago, I was where you say you are now.. standing in the face of full blown fear and surrounded by overwhelming pain. Only in the last few days have we begun to see the glimpses of peace and faith that I know will sustain us throughout the remainder of our journey.

My thoughts and prayers are with you. I know that your love and faith you allow you to find your way no matter where this journey takes you!!

Wishin you peace!

Cindy

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Carleen and Cindy,

My husband ED fought hospice and so did the onocology nurse. Ed wanted to go back home to Seattle so that's what I did. Just bundled him up and took him. My son helped take care of him for a week it was a very difficult week. And at the same time bittersweet, he had a lot of visitors. He got weaker and weaker. What you do as a caregiver is do it. Whatever needs to be done. You do the best you can with what you have. Which is your love and caring.

Keep strong and weak you will do just fine.

Adela

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Soooooooo...very, very hard to love so deeply and hurt so much, knowing that the end of the journey is approaching so much more quickly than we have ever expected. And yet in the midst of all of the positively raw emotion...there are also small glimpses of peace and the faith that God will sustain and guide us all.

That is so true.

I'm praying for you guys. This is so hard. And we are here for you.

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Cindy,

Your words are so true about loving so deeply and along with that love, comes the hurt that the end is nearing. (sorry, I don't know how to make your quote cross over in my post)

We had hospice for my dad because it was his wish to die at home. If I may offer some advice if he does decide to have hospice at home...make sure that they are not under staffed and that the nurse(s) will be available *whenever* you need them.

God Bless you all

Libby

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