Hospice – It’s a mystery, but it’s not giving up. What everyone should know.

Ok, we might have been just like you. For us, after fighting melanoma for 4 years and beating the damn thing back time after time, our opinion of hospice was "I'm giving up". There was no way my gentle wife, fighting this like a real S.O.B., was going to give up, not one ounce, period.

So, when we had a turn for the worst, and she was really unable to communicate with me or her family, I had to make the call for her, a call that would determine the life of my Teri and affect the lives of the 1000 or so people she knew or was on her caringbridge site.

Ok, we might have been just like you. For us, after fighting melanoma for 4 years and beating the damn thing back time after time, our opinion of hospice was "I'm giving up". There was no way my gentle wife, fighting this like a real S.O.B., was going to give up, not one ounce, period.

So, when we had a turn for the worst, and she was really unable to communicate with me or her family, I had to make the call for her, a call that would determine the life of my Teri and affect the lives of the 1000 or so people she knew or was on her caringbridge site.

I have to remember that when Teri was pregnant with Gerrit, at about 35, they wanted to do all these tests for downs, spinobiffida and a host of other potential problems so they could abort if necessary. Teri wouldn't do the tests. When I asked why, she said that however the baby turned, out, even in bad shape, it was destined by God and it was our burden to bear. So, why do the examinations, she said, we are having this baby!
Ok, I don't remember for sure, but I'm sure me, the doctor and the nurse were all getting "The Look" from my wife. Now I'm scared to death of "The Look" and wouldn't cross it for anything, but the doctor and the nurse got the message too. No tests, by God, we will make whatever is coming work.

So I had to make the call to go to hospice. It felt surreal. I didn't understand what it was, but there was really no way for anyone to explain. My wife completed her life after just 2 days of hospice, mostly unconscious. Her family is from a small town 250 miles away, but we took over the hospice which had just 6 patient rooms. There must have been 30 or 40 of us there that first day. They found beds, sleeping bags, carpet, whatever. There was food there for everyone, but as an italian family, We spent hundreds on food for everyone, staff too. We made meals in the kitchen for us and for the staff, and we loved my wife every single minute she was there. Let me repeat that. We LOVED MY WIFE EVERY SINGLE MINUTE SHE WAS THERE, EVERY… SINGLE… MINUTE! Ok, tears starting now, she got nothing but love those last two days, me, her best friend, (well I was her best friend too), her parents, her kids. None of this would've been possible in the hospital, as brave and as wonderful as they were.
The poking, measuring, and every other intrusion was no longer inbetween her and her family.
When we got to the hospice, I was taken to a private room where a nice person explained the procedure and had me sign a no resuscitate statement and a no care or something like that statement. How do you sign something like that when you remember your wife protecting her unborn baby against even the notion of giving up?

I slept next to her that night, on a cot, holding her hand most of the night. Talking to her, caressing her, praying. The nurses coming in a couple of times to administer medicine under her tongue. I'll never forget Mary Carol rubbing Teri's hand saying, It's ok to go Baby, we'll be ok, It's ok to go, you left us in good hands, go, rest, peace..Let go, we will love you forever

I had been with her alomst 51 straight hours, but decided to drive 25 minutes home to shower and grab her things. I just walked in, when I got the call from Jon that she had passed away. Racing back to the hospice, I collapsed on her when I saw her. The people at the hospice said this happens all the time. The spouse leaves and the patient is waiting to save the spouse the experience of their last breaths on Earth. Even today, 9 weeks later, I was grateful I wasn't there for those last few minutes. If anybody tries to tell me what happened the last few minutes, I would vigorously shake my head and say NO, I don't want to know. It's bad enough I have to remember her the last week or so, at least give me the fantasy that she died peacefully with a smile on her face.

So, what do you need to know about hospice? The one question that haunts me today is what was happening to my baby? When her breathing was difficult and she was taking double breaths, what was happening, when her body was burning up what was she feeling?, When she was groaning and waving her arm at me, what the hell was she experiencing? Could she hear us, were we there for her or just for us.

Since her passing, I have slept with her urn, I have laid on the floor where she fell, crying, Teri saying she didn't want to go back to the hospital, I can get up, I can get up. Damnit, she had a friggin broken hip. The doctors couldn't even believe we were able to get her onto her walker.
I have that area in our bedroom laid out(in my mind) like a chalk mark from NCIS. I lay as she did, asking her to forgive anything I ever did.

In my case at least, she hasn't been back to visit me. She hasn't said anything to me and the best way I can explain it is that I am in a dark tunnel opening up into a large underground cavern with no light. There is light at the tunnels entrance from where I came. I yell into the cavern, "Teri, are you there baby?"  but not only do I not hear anything, but the creepy thing is there is no echo, the silence deafening, the silence absolute. It's like the darkness swallows everything.
So, what do you need to know about hopsice? It can be the best healing decision you can make as a caregiver for your distressed loved one or your surviving loved ones. It was for us the most positive experience of the last few weeks.

Spend the last few hours/days together, talk, express, cuddle, caress, because when the time comes, the cavern can be cold, dark and worst of all, in my case silent…..

<strong>Of course, it could be that Teri is giving me "The Look" AND "The Silent Treatment". If I knew she was doing just that <em>I"d be the happiest man on Earth!</</em>strong>