Hospice Journey - Getting rough here

kenzie57

Hi Ladies:

O.K.  It's been about 2 months since I started hospice.  I can no longer leave my house.  My sisters go to the grocery and out for anything else I need.  We met with a chaplin with hospice last week and had a nice talk about what we all wanted.  We are still up in the air on a couple of things, but they know what I care about and I have been able to tell them how much I love them and how sorry I am for leaving them.  And that God forbid, they go before me, I will Shoot them!

  I have been trying really hard to be and stay calm and grateful.  I see a change in me this week.  I am so pissed off that I can't go out and pick out my own damn PJs and undies.  When I have friends call me and bitch about sitting in rush hour traffic or having to go to the grocery, I think "I'd give anything right now to do either one of those things".  I have this really bitter side of me coming out and I don't know what to do with it.  I cannot be bitter to those that are here helping me and checking on me....

 God help me to stay kind and grateful to those that are around me.....

Thanks for listening to a hospice patient going wild!!

Linda

somanywomen

I think we all have a new appreciation of trivial things that people around us moan and groan about ..They don't realize that they may be just one mammogram away from a reality check!!!!...Wishing you the best.......

EnglishMajor

Hi Kenzie

My doctor likes to say we can only be the people we are. Sounds like a very understandable reaction given your circumstances. I am not a particularly religous person, but I can't help but remember that today is Good Friday and think about Jesus internal struggles in the Garden of Gethsemane.

Although it can't be easy not to do as you would like, I am so glad your sisters are with you. They are obviously a big help and comfort. Just wanted to let you know we are here too.

Peace 

flash

My understanding from the shrink is that the bitter is a normal part of the cycle.  Doesn't make it any more palatable.  Hope you can find some peace.  I can say from the caregiver side (for my mil a year ago,) it was very easy to deal with the anger.  As a caregiver, you chalked it up to the "way things are" and didn't let it get to you.  My only advice would be worry about you.  Don't be too hard on yourself.

spar2

Linda,  I don't have any great words of wisdom except you sound normal for what you are going through.  My heart is with you, I think of you everyday and pray for your journey to be pain free and peaceful. Am so thankful that you do have people to help you.  Big giant hugs and love sherry

konakat

Aww Kenzie -- if you were calm and grateful all the time I'd think you were on too many anti-depressants!  Your frustrations are very understandable!  I feel similar things now.  My fews words of wisdom are whatever you do, say, or feel is the right thing, the right thing for you.  If you feel wild be wild.  Might not be a good thing to shoot people, but hey, if it seems right at the time...    I'm very happy you popped in and posted.  Love seeing you here.  Lots of hugs,

Elizabeth

chainsawz

I think your feelings are normal!  They have no clue that they should be celebrating sitting in traffic - and they are lucky!  That must be frustrating for you.  I know I feel at stage IV, I see a different world than those who are not....but I take a deep breath and think how nice for them to not have to see the world the way I do.  Although, I have threatened to smack friends when they complain about stupid stuff, so I guess I need to try to take more deep breaths!! 

We are here for you, so always feel you can vent to us!  I have to say, I do love your spirit and I can imagine you crack your sisters up quite a bit :>  xx00xx lisa

pookie61

It is good to hear from you.  I am glad to hear that you have us to vent to, but you also need someone who is not virtual to speak with.  Undoubtedly you are angry, who wouldn't be in your position?  Who says you just have to lay there all peaceful and calm?   

I know you don't want to let loose at your caretakers, so is there anyone else who you can talk to?  Maybe the chaplain could come more often.  Or maybe a print or online journal.  I know that I have been so angry lately myself.  But when I write down the feelings, it really helps me feel better. 

Also, Spring is coming.  You say you can't leave the house, and I don't want to pry.  Maybe there is a way you could be walked outside for a while each day, even if it is in a wheelchair.  I know it would drive me crazy not to be able to get out at all.

Finally, maybe you could shop for some undies online?  Just to give you a bit of a lift. 

You are in our thoughts.

konakat

Excellent idea Pookie -- Victoria's Secret online!  Or Sears if you want to be practical.  But I do like the idea of some sexy undies and PJs from VS!

AussieSheila

As one of our dear sistah's said awhile back, Linda, 'We stage IV ladies are NOT Angels-in-waiting.'

I think it was Saint if I remember right.

On reflection, I agree with her. Folk seem to think they can say/do what they like to us and we will take it lying down.  I think they need to be reminded sometimes, that we are the same people we were before BC, but now have more right to say what we feel.

Sheila.

chainsawz

Well put Sheila!

Jo_Ann_K

Years ago, I worked as a hospice home care nurse. The best response I heard to your concern about having negative feelings is "You are alive.  You can feel.  As a result, you can express those feelings."

jeanne46

I think your feelings are absolutely appropriate.  I get really angry when people around me start complaining about mundane things I'd LOVE to worry about instead of cancer; I also get pissed off when I hear friends talking about what they plan to do when they retire, etc.

I understand you don't want to take your anger out on those closest to you and caring for you. Maybe you can talk with them about your feelings and ask for suggestions - or perhaps to spread the word among your friends what would be helpful conversation and what would be hurtful.  I like the idea of shopping on line, if you can, and also getting some fresh air if that's possible.  These are not easy times.  And we are all human beings, with all the frailties and warts and annoying habits humans have - in addition to our cancer dxs.  Try not to be so hard on yourself.  The only problem with all the anger is that it can ruin your day. Gentle hugs to you.

Honeybear

I agree with so many of the other ladies, that your feelings are perfectly normal.  What to do with them is the hard part.  My mom was in hospice last Fall for a mere week before she passed away, but she said she was so pissed that she worked so hard to do everything right and still had to die too young (60).  She said she wished she could journal, but she couldn't hold a pen those last days.  I say just let yourself feel what you feel.  It's a process that has no rules.

 Best wishes,

Jennifer

ead

Linda, thinking of you !

Liz

spar2

Just letting you know you are in my heart, thoughts, and prayers.  Sherry

Fitztwins

Heck  I would be pissed too! Can you throw canned goods outside the backdoor?

Fidelia

Hi Linda,

I like the idea of throwing things out the back door - that sounds like a good idea. Also, any chance that you can get outside at all - it must be horrible to be cooped up with all these huge and powerful feelings and be stuck inside - sometimes we just need to be OUT even for a few minutes - just to breathe - I hope your sisters and everyone understands - and gives you some space as well as heaps of love and yes the little annoying things of life - how nice to be just able to get annoyed at little things....:(

Fidelia

tooyoungtohavebc

Thinking of you Kenzie! I would feel and act the same as you...heck I do that already and I am still up and about. Dealing with this cancer crap makes us all a bit cynical me thinks!

I am about to stop working and people keeping asking me "so what will you do if you are not working." I wanna say WTF!!  I will do whatever I WANT! And I think some are jealous and I am like "hey u take my cancer and i will keep working...how's that for a trade off" stupids...anyway like I said...I feel you and you act however you like woman!

chainsawz

I'm think of you too Kenzie and wondering how you are doing?!  We are here for you whenever you need to vent.  xx00xx lisa

pattih

Hi Kenzie, thinking of you too, maybe one of your sisters can post for you?

kenzie57

Hi gals:

My PC died and I just got set up with a new laptop.  Thanks for listening to me vent.  Many of you understand that I really don't need advice but rather what many of you gave me.  This all totally sucks and it's normal to feel this way.  I know I can contact the Chaplin again, but when I need to vent at night that is not an option.  I just need you guys with any humorous context you can come up with and understanding how and why I am feeling.

Things are totally going down hill for me.,   Sunday a.m. my sis called the hospice nurse because my pain level was out of control.  Something was said to the Hospice nurse where she felt the need to let me know I was going to have to check into Hospice and I could no longer stay alone.  One of my sisters mentioned that a tumor had shown up on my spine in previous scans and that is where she thought the addl pain was coming from.  That is why nurse ratchet made her little rude comment.  I knew in the back of my subconsious that was what was probably going on with me.  My other hip started hurting and pains were/are shooting down my let, foot going numb and tingly.  So, it took me until this a.m. for this realization to move from the back of my mind to the front of my mind.  Denial was so much kinder go me.  They have tripled my pain meds but now I can't get the going paralyzed thought out of my mind.  I saw an episode of Greys Anatomy the other wk about a woman in her last stage of cancer.  She had decided that she had enough.  After going through the proper protocol, she was able to say this is enough.  She had her hubby bring in favorite things from home, a bottle of wine, etc.  The the dr. ordered the proper quanity of barbituates that her husband could give her and she would pass about 45 minutes after taking them. 

I know this is a sticky issue and I do not want to debate rather this is right or wrong.  I just wish it was legal to do that here.  It would be far less scary for me knowing that could be an option.  I mentioned the show to the chaplin when I met with her and she thinks it is legal in the state of Washington, which is where the hosp in the show is suppose to be, I think....

 I'll be checking back with you all hopefully more regular now that I got this fancy new laptop.  I've been in too much pain to play with it and figure it out, so it is plugged in my office.  My sisters are not very PC literate but I wish one of them was so I could take the laptop to bed with me.  I know I could figure it out if I had the energy and  less pain.  But, I'll be back as often as I can.  Keep coming with all of your kick ass comments.  You just would not believe how much it helps me.

Linda

konakat

Hey Linda -- Why not call a compupter repair place or Geeks on Wheels (if they're in your city) and get them to set up your laptop with a wireless connection so you can keep it in your bedroom.  Or maybe your internet provider can send out a technician to get it set up. 

Denial is a wonderful thing.  I hate having to leave it.  And good grief, I hope you get some more or better pain pills so you're not is so much pain. 

I totally agree re. the Grey's Anatomy show -- I think we all have the right to decide to duke it out to the end or let go when we know it's the right time.

I sure hope you get your laptop set up soon in a more comfy spot -- in bed with lots of pillows.  Hugs,

Elizabeth

kenzie57

Hi Elizabeth:

Actually, I went through a PC specialist to get everything set up.  I'm sure what I need is super easy, like unplugging the PC and taking it to the bedroom.  I was in such bad shape the PC guy came out, I couldn't talk to him longer than to get met files transferred.  I'm sure I will be able to get someone to help me.  My poor sisters have so much on their plate right now and they couldn't even find the link for the internet on the laptop, so I just can't deal with them trying to figure it out.  Wanted to let you know how much I enjoy your posts and I hope you are feeling ok....

Fitztwins

I saw that episode of Grey's too. What struck me is that when she said, 'even if there is a cure it is too late for me'.  I would love that option at the end also. 

chainsawz

Linda!  I am so glad to hear from you and that you have a computer up and running, but so sorry to hear you have increased pain.  I hope nurse ratchet at least helped decrease your pain and not just be a pain in your butt? 

I watched that same episode of Grey's.  I cannot believe anyone would not want to provide us the ability to pass without pain.  I hope they keep your pain under control and get you nice and comfortable! 

Do you have any nieces or nephews who could help get your laptop to a place like Elizabeth suggested - your bed with fluffy pillows?!  Meantime, we are all here with you in cyberspace and sending you hugs........lisa

dreamwriter

Yes any kid over the age of 12 can help you with your laptop.... LOL.  The older the not wiser in this circumstance.  I have 2 daughters who could set it up in no time.  I bet it is as easy as unplugging it and taking it with you.  There is a cord.... you can plug it anywhere and go online.  This way you dont drain the battery.  My daughter unplugs from bedroom and then plugs into the livingroom.

kenzie57

Guess what!!  I am ;posting from my bed.  Sis just upplugged it and it works fine.  Hospice nurse left a a while ago.  The regular one that I like.  Based on what she is seeing, modeling in my legs, increased pain, etc, I pressed her on what her best educated gusess was as to far as how long and if I might have the luxury of going into a coma before becoming paralyzed.  She said 6-8 weeks.  I have encourgaed sisters to use this board for support.  I told her how sweet and funny you all are and that you guys will help them deal with this.  I also mentioned the other boards on this site that might help.  I know you guys will help them.  I will e-mail the bookmark to them today.  They are both so sad and stressed.  I want to thank you in advance for the support you will give them.  Of course I know the nurse could be wrong, but I like that number.  I hope it doesn't go on much longer than her guess. 

Linda

WingsofHope

Hi Linda,

Glad you have your computer with you in bed.  I know how comfy that is... plus we like hearing from you.  I am sure your sister will receive the support they need here on the site.  ((HUGS))

konakat

Yippee!!!!  Now you just need a big box of chocolates laced with heavenly painkillers.  And an ultra-feminine negligee with chiffon and ostrich feathers galore, if you aren't wearing one already!  I love your attitude Linda!  And of course we will welcome your sisters with open arms.  Anytime they feel like posting and saying hi.  Lots of hugs,

Elizabeth

chainsawz

Whew!  I'm glad that got figured out so you can be comfortable.  I do hope your sisters will find their way here to talk with us and let us know how you are doing if you eat too many of those chocolates laced with heavenly painkillers that Elizabeth wrote about!!  I know just the plain ol' ones make me lose my typing skills.  I am going to look into that chocolate painkiller idea more because how can you beat that combo???  Hugs to you Linda!