Tanner Posted May 29, 2007 Share Posted May 29, 2007 On Tuesday - 5/22 - when Karen awoke, I couldn't understand a word she was saying to me. And she appeared so frustrated. And she was also extremely weak and potentially dehydrated. We went to the doctor. They did a CT scan. Her cancer is so advanced. They called Hospice. We are at home. She is really bouncing back tho. She is no longer disoriented and confused. I think the tesalon pearls were contributing to that. She is getting around with her walker. We have been out of the house a couple of times. But you know - hospice doesn't miss a beat to tell us that "the end is near". I hate them. I hate hospice. Maybe because they are hospice. The nurse seems perfectly lovely enough. And Karen really likes her and that is what truly matters. And now we have enough liquid morphine in the house to off a platoon. What's up with that? The hospice social workers suck. There are 3 or 4 of them that are constantly calling and trying to set up time to come over and give us the skinny on "the end" and quite frankly, neither Karen nor I wanna hear it. They seemed bummed out that Karen is doing well. In fact, one social worker when told that Karen is getting around and her nutrition is up said to me "oh shoot". What the h#ll does that mean? Like Karen is not dying on her timeline? I am angry and angry and angry. And terrified. Quote Link to comment Share on other sites More sharing options...
Bev'sSister Posted May 29, 2007 Share Posted May 29, 2007 Tanner, I am so sorry that you are going through this. I will pray for you and your wife and hope that things turn around for you. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 29, 2007 Share Posted May 29, 2007 I am so sorry, Tanner, that you are having such a bum experience with Hospice. They can be so supportive. Reminds me of a lady I met a few years ago who said she was "a graduate of Hospice"! She actually got better and recovered! Take care, my friend. Don Quote Link to comment Share on other sites More sharing options...
fillise Posted May 29, 2007 Share Posted May 29, 2007 Tanner, I hear so many good things about hospice, but I think sometimes that hospice workers forget that the rest of us don't live with death in the same way they do. My mother was with a neighbor as she was dying from cancer a few years ago. As our neighbor's husband called family and friends over to say their goodbyes (she wanted him to), my mother overheard the hospice nurse saying that she wished our nieghbor would "go on and pass." While death is a daily fact of life for hospice workers, it is not for the rest of us and I think they forget that from time to time. I pray for healing for Tanner and for renewed strength and appetite. God bless you both, Susan Quote Link to comment Share on other sites More sharing options...
Nova Posted May 29, 2007 Share Posted May 29, 2007 As a former home health aide, I can tell you that what has been said in your presence, is very unprofessional. I'm EXTREMELY happy to hear that your wife is feeling better. You don't have to put up with anything you don't agree with- from Hospice, nursing agencies, social worker's, etc..., so that keep that in mind. Call and complain if need be. They are supposed to be there to assist you in whatever you need and WANT done. They need to go by YOUR rules, not the other way around. I have mixed feelings about Hospice myself. I would never want anyone to suffer needlessly, but in a way, the whole thing reminds me of a group of vultures...(sorry, just my opinion). They took care of my step-dad, and it seemed every time the poor man opened his eyes, they would give him a shot of morphine..... Tell them to back off of your wife - if she wants to get up and walk, or go sit outside, or go dancing!, it's none of their business. I'm sorry you're going thru this..I truly am. Quote Link to comment Share on other sites More sharing options...
kamataca Posted May 30, 2007 Share Posted May 30, 2007 I hope that you have hospice options--you can always fire them, if you want! Hospice was very good for us, but we refused several of their offers--they just didn't suit our personal situation. Our group respected our wishes, however. I hope you can find better care if you need it. I think the rest of us will just kick up our heels to honor her upswing! Kelly Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted May 30, 2007 Share Posted May 30, 2007 This is so sad, but true in our situation too. I had a stepdad who was part of "the team" and my mom and I fighting the vultures off. I am so sorry Tanner, I truly am. You are in my prayers. You'll get through this somehow, someway. Reach out... Quote Link to comment Share on other sites More sharing options...
daddyslittlegirl Posted May 30, 2007 Share Posted May 30, 2007 Oh Tanner, I'm so sorry to hear of your experience. I have always disliked the work "hospice" and now even more. Having the need for them is probably my biggest fear. Then you add reasons like this. It is so sad. I pray Karen has a come back just like one Don spoke about. Whatever happens though it is yours and her decission, not theirs. Hang in there. Your in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted May 30, 2007 Share Posted May 30, 2007 Tanner...I am so sorry for everything you are going through and your experience with hospice so far. I remember how scared I was to have hospice even being a consideration and then when it became necessary, it gradually became helpful (during the five days they were involved). I would call and express your dissatisfaction with the care so far and the aggressiveness of the social workers. You might let them know that the team is coming on a little strong and it is causing undue stress. I know they offer some services that seemed way over the top to me and I declined respectfully since I was able to manage those things myself. I hope Karen stays very comfortable and peaceful. I am always here as a support if you want. Peace...Flowergirlie Quote Link to comment Share on other sites More sharing options...
laban Posted May 30, 2007 Share Posted May 30, 2007 Tanner, I too am very sorry you're having those issues with hospice. You realize you have the option to call the supervisor and explain actions of employees who are hanging around like vultures, don't you? I'm sure you do. Just do what you have to do, for Karen. It is good to hear that Karen feels like getting up and going out. Hopefully she can enjoy some springtime in CO. Blessings to you and Karen. Quote Link to comment Share on other sites More sharing options...
lc46 Posted May 30, 2007 Share Posted May 30, 2007 Hi-I am sorry you are going through this with hospice. My neighbor is also a graduate of hospice-the family called them in and she got much better so who knows....you never know-all we can do is hope and pray. Wishing you much Peace, Strength and Hope. Dar Quote Link to comment Share on other sites More sharing options...
Treebywater Posted May 30, 2007 Share Posted May 30, 2007 My heart sank as I read your post. I'm so sorry that hospice is now involved and that they are being so unsupportive. Do raise a little heck until they start playing by YOUR rules. Praying for you and your family. Quote Link to comment Share on other sites More sharing options...
trish2418 Posted May 30, 2007 Share Posted May 30, 2007 Sending prayers for Karen, you, and the children. Trish Quote Link to comment Share on other sites More sharing options...
barbvh Posted May 30, 2007 Share Posted May 30, 2007 Tanner, Sending prayers to you, Karen and the kids. I agree that you should let hospice know your needs. I hope that you can find a bit of peace somewhere in this tragic situation. Quote Link to comment Share on other sites More sharing options...
dtay Posted May 30, 2007 Share Posted May 30, 2007 Thinking of you Tanner,(((hugs))) Dawn Quote Link to comment Share on other sites More sharing options...
janehill Posted May 30, 2007 Share Posted May 30, 2007 Tanner, so sorry to hear what's going on. Hospice is a very difficult concept. On the one hand, we need them when it's time - on the other hand, we don't want it to ever BE time. Just wishing you lots of strength and support during this time. Quote Link to comment Share on other sites More sharing options...
Ry Posted May 30, 2007 Share Posted May 30, 2007 Tanner- I am sorry it is time for hospice. All hospices are not created equal. In our area we have about 5 options for hospice, but only 1 that I would recommend to anyone. It is a non-profit that is not affiliated with any one hospital. Hospices that are directly linked to a hospital are usually not the best because of the bureaucracy. Since Karen likes the nurse (and that's the most important person on the team) tell the social workers not to call- when you need them you will call them. They most likely want to make a visit so they can bill for it. As others have said, you're the boss- they are working for you and Karen. Quote Link to comment Share on other sites More sharing options...
Mendy Posted May 31, 2007 Share Posted May 31, 2007 Tanner, My heart is just breaking for you, your girls, and Karen. I am thrilled for you that Karen is improving and you will have more time together. Mendy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.