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Finally gave in to hospice....

tweetymarie
  • By tweetymarie
  • Posted September 9, 2008 at 11:02 pm · 53 replies
  • Shared with the public
8 Recommendations

I had a horrible weekend. A virus started it, I think. Vomiting, dry heaving, diarrhea, alot of bile. After 2 days I had enough. Couldn't eat, drink, take pain meds or anything. Ended up going to the ER, 4 hours of laying on a hard table getting IVs nausea meds n morphine. I finally got a little relief n had hospice there that evening to sign me on. They have already got me stable n called in meds for me. I am so glad I listened to u all. I think they will be alot of help. I feel better now , a few pains but can be controlled. I am so lopsided, I feel like humpty dumty. I took a fall today. Just have to learn not to do everything I am used to doing. Thanks 4 all ur help. (forget the chair, I can probably borrow one)....

Explore topics in this journal entry and replies:

Cancer Surgery Hospice care Morphine Weakness Pain Cytoxan Liver cancer Diarrhea

53 replies

melf

So so sorry for the horrible weekend and to have to be in the ED for that long...UGH! I am glad that you accepted Hospice and that they have you stable and comfortable Tweety.
Please be careful while you are up and around I remember when I had the large tumor and felt lopsided as well. I kept telling everyone that I felt like a "weeble". What a picture! I was off balance as well and found that I needed to be extra careful not to fall. A fall would not help things at this point.
But as much as you "should not" do the things you used to because of this, I think that you really should do what pleases you. You might have to do them a little differently, and a bit slower, but, go for it. Do it! Enjoy enjoy enjoy as much as you can.
You have not said how your immediate family is coping. I continue to pray for all of you daily.
Take care Tweety.
Blessings and love to you,
Mel

RiaRia

My prayers & best wishes to you tweety - hoping you find some comfort. I agree with melf - do the things that make you happy.
maria

tweetymarie

They r not coping as well. My husband feels helpless as he has always felt like he could fix everything. My 10 yr old son (grandson) is worried to even go to school, that something may happen to me while he is gone. my other 2 r grown n worried too. My mom is probably the worse, staying by my side when my husband goes to work. She is 70. The rest of the family r pretty quiet bout it, don't know what to say but helpful. Its that look that everyone gives me that hurts. Sometimes, when nobody is around, I scream n cry, then I'm okay 4 awhile. I try to stay positive but I have a whole new way of looking at things. All I can think about is getting this house fixed up n decluttered so he will know where things r when Im not here to show him. I shop different now. Not really planning 4 much in the future, trying to just stay in the Today....It will be hard on everyone. I am the caretaker of this family n the one who does all the pictures n videos on holidays. I may just surprise them all n stick around a bit longer !!

FavoriteAunt

Dear Tweety,
I am so sorry you had to endure such a terrible weekend, but you did the right thing in getting comfort with the hospice. You should not be in pain unnecessarily - that is why they are there. And like everyone said - do what you can and want to do - just be more careful.

I am sure the effects on your family are extremely rough. People feel helpless, like we all do on occasion, and it isn't easy to overcome. My cousin is going through the same thing now with her 9 yr. old grandson and his little brother. Her kids don't want to accept this and her mom (with whom she lives) is having a very hard time. Life gives us some real trials to get through. Just try to stay strong, enjoy everything you can, and remember that God is at your side even when you don't think so.

Please continue to stay in touch with us. You are an inspiration and have so much spirit. With hugs and prayers for you,
Jo

kathy6

Hi Tweety. You certainly have gone through a lot in the past few months, but you still stay so strong, it's nice to have someone like you here to inspire so many. I can imagine how difficult this is for your family, which of course makes things even harder on you! Perhaps you can find a "project" for each person to do (and maybe they can do it along with you). The idea of losing you terrifies them, once again as the caretaker of the family, you'll need to help them with this. They will never be ready to let you go, but possibly this could alleviate a touch of the agony, by sort of walking with you- so to speak helping you with things. But definitely talk to them, even if it is difficult- talk to them. Coming from the daughters point of view, I think that we need this, and maybe you do too? You know that you can contact me anytime, here or through email and please extend that you your family as well. You're always in my prayers.

Hugs,
Kathy

Artemis

Thinking of you, Tweety. I think Hospice is a great organization. Just relax as much as you can. Make it as easy on yourself as you can.

dardar38

You are so strong. I know what you mean about trying to leave things so that people will know where to look. I have been meaning to do that for sometime now and maybe today I will get to it as I go for surgery tomorrow. You are fortunate to have your family close and although it is hard for them at least they have time to get closer to you and if you don't get better they will have some preparation. I think Hospice helps with that too. I will pray for you and your family.

Something to do if you haven't yet - go with your family to the sing-along version of Mama Mia (movie) - it is very upbeat and funny.

PamRn

Dear Lillie
I'm so glad you are able to keep in touch with us. My heart is aching as I read your post, but I know you are in God's hands and his love for you is greater than anything you face here. I will continue to pray for your peace and comfort. As a hospice nurse I know how valuable your hospice team can be to you. If you don't mind, e-mail me the name of the hospice you are with. We sometimes collaborate with other agencies and I wonder if we have ever worked with them. I hope they are one of the good ones. Remember, the goal of our journey is to be with our Father, we just never know which path we will take.God bless you, friend.
Pam

Lemona

Dearest Tweetie Marie - I am so sorry for this turn of events, but I too am happy that hospice is giving you some relief. I too have spent a good deal of time organizing things and getting my papers etc. in order. I think it's very satisfying. Families can be so tough to deal with during this battle. You might want to speak to hospice about this issue. They also have social workers who help people cope. And your family members might feel better talking to a professional about their fears. You are in my thoughts and prayers always. I am praying for a miracle for you. You deserve it. It's not your time. Much love and hugs. Lemona

BarbF

Dear Tweety Marie-
I am so sorry to hear about your weekend. I am praying that hospice will help. The one post is so true, Those of us who are His children are all on a journey to Him. Remember, He is preparing you for an eternity with Him. I continue to pray for God's Holy Spirit to comfort you. I am also lifting your family up in prayer as well. God bless you, my friend. Please continue to post when you can. We are all here for you.

BarbF

Susan5

Hi Tweety:
I read your email this morning and am so grateful that you're now comfortable -Hospice is an awesome organization!!! You will remain in my thoughts and prayers -please keep writing us -we are your sisters in Christ and in Ov Ca & we all have lots of love for you!!!!!!!!!!!
I'm beginning my 1st recurrence after 27 mos of remission from IP/IV -so I am much closer to knowing how you feel than when I was still in remission thinking this could be cured....
How sweet you are thinking more about your family than yourself; You are AWESOME!!!!!
Luv
susan

Rose2

Tweety....Remember....God's purpose for us as Christians is to Glorify Him in what ever circumstance He allows in our lives. We need to encourage each other of this truth. God is not done with you....He is going to work in you and thru you even in this phase of your cancer journey WITH HIM. I continue to pray that God will strengthen you in the inner soul so that others will see your weakness but ........HIS STRENGTH AS HE TAKES YOU THRU THIS. REMEMBER TWEETY...NONE OF UE WANT TO LEAVE THIS EARTH AND OUR LOVED ONES....BUT WHAT LIES AHEAD FOR US AS CHRISTIANS IS SEEING OUR GREAT SAVIOR. UHM-M-M WE WILL SEE HIM FACE TO FACE AND TELL THE STORY.....SAVED BY GRACE!!!!((HUGS)) and Christiian Love to you Tweety!!

marymargaret

Tweety, you are an inspiration!

Thank you for sharing your story and your spirit. None of us ever knows how much time we have left on this earth. You've made me more conscious that every breath is a gift. Thank you!

I was blessed to share the final moments of life on earth with my sister and it was the most sacred experience for me. I know now that unconditional love exists, and learning to love unconditionally is the reason we're here on earth in the first place. I know, too, that it starts with loving ourselves unconditionally.

Thank you for helping me to understand this all better. Thank you for sharing the precious loving spirit that you are.

I will keep you in my thoughts and prayers, with love,
Mary

Cancergrrl

Dear Tweety,

I am so glad that you feel well enough to give us an update! It sounds like enrolling in hospice is the right thing to do. They may have services that can help your family as well. When my father was in hospice, the nurse and social worker were extremely comforting to me.

Just because you're in hospice, that doesn't mean that your niece can't keep investigating other treatment options for you! You can always sign yourself out of hospice if a promising treatment option comes long.

Take good care!

Love,

Margaret

Shearaw

Dear Tweety, While I haven't posted to this thread, I have thought of you often over the last many weeks. You are courageous and strong. When you describe what your family members seem to be feeling, I can identify, especially for your mother. (Telling my mom about my OvCa diagnosis was much harder than telling anyone else) You have mot let this miserable disease diminish your strength of spirit. Thank you for sharing your travels with us. Sending prayers your way.

Sheara W

KBB

Dear Tweety Marie~
I am a OKC ovca sister of your's. In fact we go to the same group of drs., mine is J. Walker. I've been a patient of hers since I was dx in 1998. So sorry that you are feeling so awful physically and emotionally.
After having been through numerous near death traumas, I finally decided that I needed to feel in control of something.
I got several notebooks and a large folder from the scrapbook store. I write down items that I want certain people to have. If something has an interesting history, I add that. I have a grown son and daughter, 3 grandchildren and husband. Things that were given to my husband and I he can decide on, The things that were mine from childhood or from my grandparents will go to my kids. When my grandmother died, each of the 5 sons took turns by age choosing one thing at a time. When they got the things they wanted, the grandchildren got to choose, etc. No fussing. She had for many years asked us if there was anything of hers we wanted. If so , she put our name in tape and those were given out first.
During a time when I was feeling okay, we set up a living revocable trust, chose cemetary plots, I designed our headstone and bench and now I'm working on my memorial service.
My family and friends have been waiting for the other shoe to drop with me for 10 years, but it still will be hard on them. I take every opportunity I can to talk to my children and 10, 8 and 8 yr old grandchildren that everyone dies, but that we will see each other again.
They will be sad for awhile but God has sent the Holy Spirit to comfort them and help them know that they will be OK.
One night the oldest told my husband that he wouldn't be able to stand it when his Nana and Papa die. Steve explained it to him like this: When you were born, I was 40, That meant I waited for 40 years to get to meet you and love you. It may be that you will live 40 years after I die and we're in heaven together again. That 40 yrs will seem like a long time to you but not to me. You will be ok and Nana and I want you to tell stories about us with joy.
Have you ever been a member of HOPE in OKLA support group at OU PHY? I don't remember seeing you there, but I've skipped a number of meetings since last Oct. Our annual HOPE WALK will be this Saturday 13 at 10:00. We'll start at the OK Bar Assoc bldg on Lincoln, walk to the south steps of the Capital bldg , release balloons and walk back for a short program. Of course, wheelchairs are welcome--I may be wheeled, depends on how I feel that day.
Go to the HOPE site, www.hope.ouhsc.edu or hopeinoklahoma@ouhsc.edu
GriefShare is a wonderful program for patients and those who are left. We have a group that meets in the evening at Crossings Community Church on North Portland. I know of many people who have great things to say about the ministry.
I'm now working on my memorial service. Just trying to help my family. Also gathering pictures--of course only the ones where I'm the cutest!
As you can tell I'm a planner (retired kdg teacher).
If I can help you, please let me know. I can't drive much, but I've plenty of family and friends who get me around.
Love and prayers and hugs to you and yours, KBB (Kathy B)

momanderson920

Tweetymarie,
I hope you are getting some relief. You have been on my mind and in my prayers. Hospice is a wonderful organization. I do understand your worries about family. It is something we all worry about with this disease since it is so unpredictable. My favorite expression that I have adopted is that we hope and pray for the best, but prepare for the worst. And that is all any of us can do. You hang in there and scream and cry as much as you need. You have been through so much and deserve to scream and cry as much as you need to. But you are so right to stay in the today. I am sending a cyber hug your way. Cindy

gmac

Tweetymarie
I check each morning to see how you are doing. I am glad hospice has been able to provide some relief for you. I send my thoughts and prayers your way. Your strength is obvious and it will help you along this path.
Gail

gerikrstovich

I admire you so much, for your strength, for your wonderful attitude. I think about you everyday and pray for you.
Geri

verlinda

Dear Tweetymarie,

Once again you have blessed us and encouraged us. I am so grateful for you! My heart aches for you and your family, but I want you to know that they will look back on these days, too, and find blessings in them.

If you find a time when you think your grandson and other family members can bear to talk about the time when you're in heaven and they are waiting to see you again, two wonderful passages of scripture are the one in Revelations where God tells us there will be no more sighing, crying, pain or death and the famous Ecclesiastes verses.

In the Ecclesiastes 3:1-8 "To everything there is a season," passage, a few verses later (14-15) Solomon writes, "I know that everything God does will endure forever; nothing can be added to it and nothing taken from it....Whatever is has already been, and what will be has been before, AND GOD WILL CALL THE PAST TO ACCOUNT." In World War II when Dietrich Bonhoeffer was waiting to die in a Nazi prison, he wrote that he believed this meant, among other things, that God holds all our memories for us, so we don't have to be afraid we'll forget important things. If we don't easily recall things that are important to us, God is saving those memories for us and will give them to us again at the right time.

You may want to remind your grandson he'll see you again, and he'll know you immediately. At the Mount of Transfiguration, the disciples waiting for Christ immediately knew who Moses and Elijah were, even though they'd never seen them.

This is so hard for a child to face, but maybe the reassurance that if something does happen while he's at school, he'll see you again will help. You may want to to tell him if he happens to forget details about you, he doesn't have to worry or feel guilty; God is holding those memories for him the way we sometimes keep an easily-damaged toy or picture, etc., in a safe place for our children to use under our supervision. God will take out those memories for your grandson to have at exactly the right time.

The first weekend my sister was in hospice care, she, her daughter (34 at the time), and I were talking one night when her daughter suddenly said, "Mom, what's really bothering you? Tell us so we can help."

Nancy's eyes filled with tears and she said, "I know I'll be in heaven, but I'm still afraid and I'm so ashamed of that." We reminded her that Jesus didn't want to die, and He knew ultimately He would triumph. Still, He wept, sweated blood and repeatedly asked God if there was another way. Why would we think we're bad if we have fears? God doesn't blame us. I am so grateful He made sure that Jesus' struggle was in the Bible, so we'd know it was all right for us to have fears, too.

Nancy told me privately she was afraid she'd do something to embarrass her family as she went through her final days. She and I discussed our mother's last six months. By the time our mother died of repeated strokes, she didn't know who she or anyone else was, and, the last couple of weeks, didn't even appear to realize she was in the world. She had to be diapered and changed at the end. In the early days of the strokes, she was violent, and was often very angry. I said, "Nancy, were you ever embarrassed or ashamed of Mother for anything that happened during those months?"

"Of course not!" she said. "I was just sorry she was going through all that." Then she realized her family wouldn't be ashamed of anything she did, either.

We still had many times of laughter, reassuring each other, precious visits with friends and family, and sharing plans for the future.

My sister donated her body to a local medical school for research. A couple of weeks before she died, she said, "Judy, would you bring me the manicure scissors from the bathroom?" Of course, I did, expecting she was going to trim a hangnail.

Now you have to realize her hands were none too steady at this point. Instead of cutting her nails, she held up a little mirror, and began cutting trimming the hairs in her nostrils.

"What in the world are you doing?" I said.

"I'm not going to have some medical student say, 'Hey, guys, look at the nose hair on this one!'"

"Hand me those scissors before you slice your nose off, and bleed to death!" I said. Then we both laughed and laughed.

One of my most precious memories was the last weekend I spent time with her. I'd missed my flight back home, and unexpectedly got to stay another night with her. She was pretty uncomfortable that evening. Five or six of her extended family members were sitting with her. We gave her her medicine, then her husband said, "Would you like us to sing to you?"

She nodded.

"What would you like us to sing?"

"You pick," she said.

He began "Saviour, like a shepherd lead us," and we all joined in with harmony. The little room was filled with music, and the few voices sounded like an entire angel choir. After we finished, my brother-in-law looked at us and said, "We had that sung at our wedding."

When I spoke with my sister a few days later, I said, "How is your pain? Are they (hospice) keeping it under control?"

She said, "I haven't had any pain since y'all sang for me." (She was still taking her meds; they were working a lot better.)

Tweetymarie, I'm not trying to say you only have a couple of days or weeks; I just wanted to share these thoughts and memories, so you'll know how precious this part of your life will be to you and your family. Also, yell, scream, cry, ask for help, do whatever you need to do.

Don't worry too much about getting things organized for your family. What you don't feel like doing may be the very distraction they need to feel somewhat in control of things as they go through things and figure them out. Just enjoy this time, share memories, tell people what you've always wanted to say to them. Don't be afraid you'll miss out on something if you take your pain meds. The meds will make you more able to visit with people.

My husband and son came with me the first weekend my sister had hospice care. The doctor had told Nancy she had 1 or 2 weeks. Before we left, she asked Russell and me to come to her bed. She took both of our hands, and said, "I'd like to pray for you before you go."

In the car, Russell said, "Why did she do that?"
I answered, "Honey, she was giving us her blessing."

Nancy did that with every close friend and family member the first time they came to see her during her hospice at home.

Please let us know how we can support you. You continue to be in my prayers. Thanks again for being so honest with us, and strengthening us with your experiences.

Love and blessings,
Verlinda

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