Hospice to the End?
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Lainey, your following quote made my day. What an absolutely beautiful thing to say. You are such an inspiration to this Board and we are all blessed by your devotion to it.
“By the way, one doesn’t need a great ending to attain success or to give inspiration. I will keep posting on here as long as they will have me because I love to feel I am helping another CC Caregiver or patient. It’s the least I can do in Teddy’s honor. Selfishly, it helps me get through each day as I can just feel all the love and caring flying through cyber space.”
Dance everyday like it is your last dance.
Hugs, Hugs,
NancyLainy, I read your post and I keep thinking of my mom. Years ago, our first child was born with a syndrome that meant a short life span. She lived for nine wonderful months that were filled with love that still outweighs the sorrow of losing her so soon after she came into our lives. When she was just a few days old, I remember my mom saying to me in the hospital as we were trying to come to grips with our new reality “no one said it would be easy”. A cliche – I know – but one that resonated to the soles of my feet when she said it.
Years later and just months ago, I sat with mom and we talked about whether she wanted to be at home, in hospital or at hospice. And all I could hear in my head was her voice and me understanding just how messy life can get. Her first reaction was to say “whatever you all think is best”. When pushed – like Teddy – she admitted that she didn’t want to be in the hospital and would prefer to be at home. We were lucky – there are six of us and we – along with some incredible support from hospice – were able to keep her home to the end. The nurses were on call 24/7. They came by 4x a day to check on her and adjust her pain meds as needed. If needed, we just had to call the centre and a nurse was dispatched.
But we also talked about moving her to the actual hospice if we needed to – especially if her medical needs outpaced our ability to keep her comfortable. Our visits there and our discussions with staff, patients and families comforted us greatly to know that mom would’ve been a-ok had we transferred her.
There are no right or wrong answers – you will do what you need to do. And everything you do is motivated by love and so it will be ok.
Thinking of you and Teddy with affection and love
Lainy,
Absolutely one heck of a gift! You are a rock to others despite your own trials. When I heard of your dancing, I thought of this song by Leeann Womack (a country song) called “I Hope You Dance”.
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty-handedI hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you’ll give faith a fighting chance
And when you get the choice to sit it out or danceI hope you dance
I hope you danceI hope you never fear those mountains in the distance
Never settle for the path of least resistance
Living might mean taking chances but they’re worth taking
Lovin’ might be a mistake but it’s worth makingDon’t let some hell-bent heart leave you bitter
When you come close to selling out reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or danceI hope you dance
(Time is a wheel in constant motion always)
I hope you dance
(Rolling us along)
I hope you dance
(Tell me who wants to look back on their years and wonder)
I hope you dance
(Where those years have gone)I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you’ll give faith a fighting chance
And when you get the choice to sit it out or danceDance
I hope you dance
(Dance)
I hope you dance
(Time is a wheel in constant motion always)
I hope you dance
(Rolling us along)
I hope you dance
(Tell me who wants to look back on their years and wonder)
I hope you dance
(Where those years have gone)Tell me who wants to look back on their years and wonder
(Dance)
Where those years have gone
(Dance)Lainy I picture you and Teddy when I think of this song. All my best to both of you, including my love and prayers.
Linda
Dear Lainy – what a tough, tough decision facing you both – but how magnificently you turn it into something special & loving. What a wonderful relationship you two have.
You can always make me smile through the tears & that’s one heck of a gift to have.
Thinking of you. Jxx
Isisman….The Spinal anesthesia has proven to be quite successful and I am wishing with all my heart for you husband to finally have some relief from his pain.
Good luck and tons of best wishes,
MarionThanks. I can ask the doctor anything when I am with my husband. I don’t need anyone else with me. I am never seen as upset, nor get upset. I’m just frustrated and tired of all this and want it to stop. I strongly trust the oncologist and he is trying everything. Next we get consult for this morphine spine stimulus deal. They want to relieve his pain while working on the initial cc situation, I just believe every one is different and we just know that what works for one, doesn’t always work for another. I have the Home Health nursing program coming to the house now, the other side of their business is hospice which does visitation and work orders for meds etc. The nurses will come to do his morphine pump stuff, unhook him once a week or a shave and a shower, and replace his bag when empty or any other pump issues. I can ask Doc on Wed, we go weekly, to see if Hospice side may have some ideas for pain relief. yes, they still need a work order to come over. I am optimistic about the pain procedure next as a small does of morphine is supposed to work wonders and not affect your brain (no looney), but I have been told I have to make sure there is a local company that will “service” it like refill it and monitor it. I heard that support is not common. I can’t image a doc doing a procedure and not having the resources to provdie to support it !!! Anyway, we just keep working through things to try. Not sure if we have many more options. Thanks for your support, kind words and to all the people that understand.
Isisman, I am so sorry to hear all this. You and your husband have both had your share. Have you talked to the Oncologist lately? I just can’t understand why some Professional is not doing something. Is the bottom line that they feel he is doing well? Hospice is totally free. Might just be worth an evaluation from them but the doctor has to order them to come out to your house. We don’t even pay for RX anymore that are new like the Morphine. We still pay for 2 Teddy takes from the past but all newly ordered RX are free.
I have one more suggestion and I apologize if you don’t like it, its just a suggestion.
I would make an appointment to go with someone you trust to the ONC. Get an appointment and just you and someone else go. Make a list of questions for the ONC and try to calmly discuss what is going on and that you desperately need some answers. The reason I say to take someone is that you are so terribly upset, someone else may hear things that you are not hearing.
By the way, one doesn’t need a great ending to attain success or to give inspiration. I will keep posting on here as long as they will have me because I love to feel I am helping another CC Caregiver or patient. It’s the least I can do in Teddy’s honor. Selfishly, it helps me get through each day as I can just feel all the love and caring flying through cyber space.Lainy, I still cant’ read these posts from you. You were my success story and inspiration. My husband is now in so much pain, nerve block didnt’ work, can’t reduce morphine pump, every day is miserable and morphine makes him loony, painful to eat still, cancer not showing as anything but infected nodes that chemo is shrkinking. he is miserable, I am miserable he is withering away from 230 now to 143. Al bones weak. I have to find someone every day I got to work to come stay with him. I assume insurance pays for hospice facilities like a hospital, cause I am broke! He is not hospice ready but both of us just want it to end, He said he cant’ continue on this miserable with it never getting better. yet docs say his cancer cells are being managed well with chemo, but still, he is a wreck. I dont’ know what I will do if I need someone here 24/7. I have had peolple come stay weeks at a time to help, but now down to only finding someone 11-3 every day at the most. Which is ok, right now, in his state, but if we go back to the worse state he was in last month, I want it over. I can’t do it. I’m so miserable.
Lainy: I’m really glad to see the advice on the hospice in your area and your expressed relief at getting it. You and your Teddy are getting the loving informed support you need now as you have so often given. Sometimes when reading the supportive messages to you from others in or faimiliar with your geographic locale–I sorta wish I lived there, too. So very grateful that you’re getting the help you need to help Teddy. Wish I could do more.
God bless you and Teddy.
-Tom
Lainey,
You and Teddy are in my thoughts and prayers. You have been such an inspiration to this site. I feel so at peace when I read your posts. Hugs to both of you.
Nancy
Awww Lainy, my heart goes out to you and Teddy, and YES, keep dancing as long as he is able to, even if it’s just one turn around the kitchen! Go Teddy!
Kisses and hugs,
MargaretHi Lainy,
So far I’m doing well. The liver appears to be draining as it should. It’s just a ‘wait and see’ thing. We’re planning to be there the first week of Oct. if I can manage no infections for this month. We’ll keep you posted. Please extend our love to Teddy… and keep dancing.God Bless!!
bob
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