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Steve and Hospice

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

Hi, I just wanted to let you all know- Steve has accepted hospice at home. We successfully fought for his radiation treatments for pain management and his pain number went from 9 to 3. After his last day of radiation treatment, we asked for this. I had been dreading making the decision but in the end after a couple of falls because he forgot he was meant to be in a wheelchair (!), hospice decided itself and I could no longer cope on my own that made any sense.

I feel that we have made a positive decision, we have had the garden trimmed and mowed and its all looking especially lovely here in Texas just now and I look forward to spending some quality time in it with him.

I want to thank all those that mailed me- especially April-who finally worded it as moving forward and not backwards!

Could not have done it without you guys, and hope there is some good times ahead for us:-)

best wishes and kind thoughts

Lyndsey

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Lyndsey,

It is good that you and Steve will be getting the attention and assistance that Hospice can give. You are right, you will have time to relax in your garden, together, and enjoy that cup of tea you were supposed to have.

I know that you will both treasure this time. Remember, dear one, take care of yourself. Read to him, take naps together. Watch a favorite comedy! Live, love and laugh.

My thoughts and prayers are with you.

Lucy

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

Well its taken a couple of weeks for the new system to get used to us, but I finally got a cup of gold tipped Darjeeling- bliss!

We are also taking naps together-for me personally this is a triumph- as something I did not share before was that Steve *moved out* of our room after he got out of the hospital last August. Work clothes -the lot. Taken me a few months to get him back to the main bathroom even, let alone our bed. Getting there though, he will sleep in his hospital bed in another room but afternoon naps in our room is are snuggle time- which as you say Lucy are moments to treasure!

Peace to you at this time

Lyndsey

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Lyndsey,

I am so happy for you and Steve! These days are so valuable in so many ways. I know that they will do both of you good.

Today is what we have, live it, love it!

Lucy

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

My heart is breaking for you and Steve... where can we take comfort but in each others shared experiences. You have reached out to me when I needed support... Please know that you and the others have been a lifeline for me throughout our 6 months of melanoma hell.

Enjoy your spring, lift your face to the heavens and know that it was love that built your home.

Peace to you and your family.
Deb
lovingwife to Bob, stage 4, melanoma

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

posting you on your thread, hope it helps

love to you and Bob

Lyndsey

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

My husband is going on almost a month in home hospice. While it is heartbreaking watching the disease take its toll on him, it is also such a relief not to have to be dragging him to doctor's appointments and treatments and worrying about symptoms all the time. The hospice people are wonderful and we feel we are in good hands with them. We can relax more now and just spend time together.
It is, truly, moving forward. It is acknowledging a turning point that is inevitable, accepting it, and being at peace with it.

There will be good times ahead for you and Steve. Enjoy the weather and the garden. It is still a bit chilly here in NY, but the cold aand snow are over and we are grateful for the birds returning from the south, and for opening day of my community garden this weekend.

Karen

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

We had to train Hospice to fit into our particular box, but getting there so I feel confident of leaving the house to complete so much administration left undone. Steve officially retired just two days ago -so that alone is a lot of paperwork! I feel like I am getting all this done now instead of the avalanche overwhelming me. The radiation treatment for pain was every day for three weeks and meant I was unable to get other necessary things done.but getting there! Weather here has been interesting, heat followed by thunderstorms. I saw the lightning strike about 10 feet from our front door one night- I like storms but that was a little too close! :-)

I don't know about community gardens being a Brit- is it an open day on certain days?

Lyndsey

grandmafay's picture
grandmafay
Posts: 1622
Joined: Aug 2009

I am sorry you have reached this point but glad that hospice exists. They really are a help. Just knowing they are as close as the phone makes a huge difference. Cherish the time you have left with one another. Find as much peace as possible in these last days. Fay

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

doing my best to find that peace but I can say we have had quite a lot of wonderful moments the last two weeks!

thanks for your kind thoughts

Lyndsey

elmdallastx
Posts: 6
Joined: Apr 2011

I am taking care of my father, who is stage 4. He seems to be fighting but I know it's only a matter of time. I am sorry for what you are going through but it sounds like spending each precious moment together is worth more than all the pain and trouble of going to the doctors.

I am in Texas too, and surprisingly the weather is nice. It's Friday so I am going to enjoy the weather before I have to go back to the hospital.

Wish you a nice weekend full of nice conversation.

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

well the Dallas weather has been very *striking* with the storms- I hope you enjoyed your weekend. Hospice is about quality of life and there seems to be a lot more of joy and laughter around now thank goodness- we spent since last August in hospitals and some of it on a daily basis, so we are ready to stay home and let others do the work for a change :-)

peace

Lyndsey

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

It sucks knowing you have to go through this, but as I said before, this means you get to go YOUR way together. So crack open a cold one (or case whatever :)) and make all the fun happy memories you can. Enjoy your yard, have a great BBQ, invite everyone or no one, cuz guess what? This time is about both of you and no one else.

Don't forget to take care of you and ask for any help and resources you need. This is the hardest road you may ever walk down, but from my experience it's the best thing.

Message me if you need hun.

Hugs and Loves,
April

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

bless you for your sound comments- I had to retire Steve from work on Friday using PoA- bless him he still thinks he has *work* in him. So hard to explain with 7 brain lesions from his lung cancer- that maybe he just does not join the dots any more :-) (truth is he hasn't for about 18 months) We were about to lose health cover, so it really was the right thing to do- it was a very sad day for both of us as up til February he was working in his field office having fought back from being paralyzed down his right side, but his lung cancer was so aggressive, I had to show him he needed to stop paddling up river and just let it flow..........

take care of you

Lyndsey

neverquit
Posts: 221
Joined: Oct 2010

Lyndsey. I am glad you and Steve are at peace with your decision. I agree that this is moving forward and not backwards. I hope you have many good times ahead and that the weather in Texas stays beautiful so you can enjoy your garden and the outdoors. My thoughts are with you both. Many hugs!

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

hugs back atcha! Lots of thunder storms this past week around Dallas, pretty and the garden gets a free water and the foundations-I just so dislike how steamy it gets after!I am hoping the grass will dry out enough for him to go back sleeping under the trees:-)

Lyndsey

3Mana
Posts: 829
Joined: Aug 2010

Lyndsey,
So sorry to hear about Steve. It had to be hard to decide it was time for hospice, but it'll be much easier for you to have help. We had home hospice for my dad and those people were great and they were available anytime we needed them. Never got to that point with my hubby Tom, cause he went so fast & unexpectedly. It was a shock, but when I read about all of the people on here who have had to watch their loved ones suffer for so long, I guess maybe I should be thankful I didn't have to go through that.
This is such a great site and the support here is unbelievable. I've made so many friends and even though none of us have ever met, we have a special connection.
Please take care of yourself, Lyndsey, and enjoy every day you have left with Steve. Make sure you let him know how special he is to you and how much you love him.
We are all here for you, so keep us posted on how things are going, okay?
I'll say a prayer that Steve doesn't have to suffer.
Don't think you mentioned if you have kids or not?? Take care! Friends, Carole

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

Carole

its all been hard, as you know- we just all have different versions of it, but it amounts to the same. We are having some good times together, but Steve is finding it hard to think there is quality left, having to retire this last week, after entering the Hospice program so it is a lot to deal with.

My daughter has been back from Asia and her tsunami experience for 10 days hence my absence-she will be back in August- though whether Steve is with us- is not for us to know or guess at.
Steve has three daughters and five siblings- all are absent. yes all of them.Daughters came til they realised there was no money in it as they were used to Dad spoiling them like that- the eldest is over 40 and should know better! (Steve is 60 ) His brother was coming for Easter and he was so excited- the coward sent me a text message on Wednesday to say he was pouring concrete on his drive instead!!

Its not all bad though Carole, yesterday I cooked dinner for three friends I have gotten to know well over the last few months, not surprisingly they are from my cancer support group and they are all in mourning and came to support me and Steve in hospice at home. I have learned that good friends who understand the situation are worth so much more than vague promises from so called family :-)

kind thoughts and best wishes to you

Lyndsey

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Been wondering how you two have been doing. Seems like things are going the way both of you want and need them to go. For that I am glad :) As for family - f#@$ em if they can't take a joke, as Pat would say. I'm starting to notice family isn't all it's cracked up to be.

Be good - here if you need :)
April

grandmafay's picture
grandmafay
Posts: 1622
Joined: Aug 2009

Family is wonderful when they are there for you and Steve. If they can't, you don't need their drama. They are the ones who are missing out. They are the ones who may come to regret that they missed the oportunity to say goodby. Some just don't get it. It is sad, but for now, you have each other. Hang on tight. Fay

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