I am a hair's breadth away from going to hospice

[kickingandscreaming]

On top of my lousy kidneys I have a heart defect that can't be repaired and will probably end in heart failure.  On top of that, I now have either diabetic neuropathy OR Lymphedema OR cellulitis OR some vascular defect.  Whatever it is, my legs and feet hurt like hell. and I can barely walk now.  Feel very weak and hopeless.  So I think it's time to resign my membership in the world of living humans.  I am making preliminary calls to pave the way to my departure.  It's a hard decision but I am at the point where there is no hope for improvement-- in any of my comorbidities.  I really don't want to limp along feeling as awful as I do with no hope in sight.  I have only one relative (a niece in a distant city) and she is tryng to disuade me fom going forward.  But since I have no husband, no children, no dog to leave behind.

[MooseMom]

I am gutted to read this, k&s.  My first instinct is to try to talk you out of it, to point out all of the reasons you should not give up just yet.  But looking into hospice isn't "giving up", rather, it's learning about your options and looking for ways to help you maneuver through your life with the least amount of suffering possible. 

The truth is that you are the best person to make such a decision for yourself, so the only thing that I will say is that I support you in whatever kind of decision you make.  I hope you can find the help and support that you need. 

There's not really an appropriate emoji for this, is there.

[iolaire]

I hope you find comfort whatever path you choose. Thank you for sharing your story.

[Charlie B53]

Maybe I don't understand Hospice quite so much.

My Terminal Wife is on Hospice in a Nursing Home.  They, as I understand it, are helping to provide 'Comfort Care'.


OK.

A Neighbor, who I pick up and take to and from Dialysis every treatment day, has recently began "Hospice" at home. 

Both have been supplied with better beds to prevent bed sores, I assume, from their extended bed time.

Hospice doesn't necessarily mean an end to Dialysis and very short term death.  Although many do make that choice, it is NOT engraved in stone.

Hospice will help however they can to keep you as comfortable as possible during your remain time.

Pain control, medication if necessary, but foot pain may have other means of control.  Soaks, message, proper shoe maybe?  I have no experience other than a bone spur on my heel.  Dr tells me removing the spur onlyl relieves the pain in about 50% of cases. I was prescribed 'proper' shoes.  I was surprised they worked.

Sometimes simple things evade us.  Not knowing where to find a solution is difficult.

Don't be so ready to give in just yet.

Ask more questions, expand where you are asking them.

Prayers.

[Michael Murphy]

Every Dialysys journey has a beginning and a ending.its a journey of great heroics.  It’s also a journey that is all to often accomplished alone.  The very nature of this treatment is both a blessing and a curse.  In October of 2016 I faced a horrible choice have 3 operations two high risk angioplasties and a abilation to correct afib and vtach.  At the time I was unable to walk the 8 feet from my bed to the toilet.  I would collapse in a heaving breathless heap on the toilet.i wasn’t sure what my future held but if this was what my life was going to be like I wasn’t ready for it.  Then as I was envisioning my future it hit me I wa a dialysis patient and could stop Dialysys.  I decided to push on with my recovery and see how far I could go.  Bought a rolling walker not because I needed help walking but I needed to sit down every 100 feet and the walker could be locked and used as a seat.   My recovery is not perfect but it’s livable.  But I know I live in the narrow bands of acceptable and the next medical event may make the stop dialysis option the best choice.  So I don’t worry as long as I stay in the ok band life goes on if not I will stop Dialysys without hesitation.

[Athena]

Oh dear K&S, I feel so much sadness knowing that you are so alone now dealing with this grim situation. I don't know what a hospice exactly provides, but if they will look after you in ways that you find difficult to manage right now, then it sounds like a godsend. If your co-morbidities improve, can you opt to return back home?

You are going into your end of life issues with your mental faculties intact & with a clear brilliant mind. That is a wonderful blessing & gift. In addition, your sheer courage in living alone with kidney failure is absolutely amazing. 

Keep in touch with us whenever you can. I am sending you many prayers & good luck thoughts your way. A big cyber hug to you! 
 

[kickingandscreaming]

Thank you all for your kind comments.  This is indeed a trying time.  I will try to move through it with as much grace as possible.  And to the extent that i can, I'll share parts of my journey.

[LorinnPKD]

K&S, I've been following your journey for a few years now and I have always appreciated the generosity of your candor and insight.  I connected to you instantly because of your love of dogs!  I just wanted to say thank you for always telling it like it is and for bringing so much to the community here, and doing so with honesty, humor, presence of mind, and always through your one-of-a-kind voice.

I am hoping you have a care team that is providing the information you need about any potential paths you can explore from here, and what makes the most sense to you.

You may have some tough decisions ahead.  All I know is that this morning I was crushed to see your update and I am wishing you well, and I am sending you my continued prayers and so much appreciation for giving us so much of yourself. You've touched many lives here, and we'd all love nothing more than more time with you. 

[kickingandscreaming]

Thank you, Lorinne.  Those are very kind words.  I am not gone yet.

[GA_DAWG]

k&s, I wish you peace in whatever decision you make. I think it was Michael who spoke of how lonely the journey of dialysis can be, and I think he is right. I think all of us attempt to disguise, to some degree, the actual process from those around us. I think no one who has not gone through this can ever fully understand, even those closest to us, so I can only imagine how hard it is without someone close by. You have been a great source of information and inspiration to many, and at the end, that may really be the best that can be said of anyone.

[LorinnPKD]

Thank you, Lorinne.  Those are very kind words.  I am not gone yet.

And I'm so glad you're still here.  It sounds a little lonely where you are, and I just wanted to know that you have touched our lives deeply.

[kitkatz]

You know we here at IHD.com support you in whatever decisions you make.  I hope things are looking up a little bit every day.

[cassandra]

I can only agree with all that’s been said above. We’re all thinking of you, wishing we could do something to help.


Love you lots, Cas


 

[Michael Murphy]

Several times in my Dialysys journey I have seen people make the is it time yet choice.  One women was told while on dialysis that the test she had taken show terminal cancer and that was her last treatment went on hospice care and passed on that week. Ieel for you and I don’t have any input on what you should do.  Just that it’s only up to you if it’s time.  I am sure after reading your posts for the last bunch of years you will do the right thing for you.  I will however include you in my prayers that you will do what’s best for you.

[kitkatz]

You can always make arrangements for Hospice, have it already to go,then pull back for awhile if you find you feel better.   Whatever you decide there is  alot of good wishes being passed your way.

[Athena]

Does anyone know or heard anything from Kicking&Screaming? I am wondering how she is. She's been inactive for 8 days. 

[kristina]

Does anyone know or heard anything from Kicking&Screaming? I am wondering how she is. She's been inactive for 8 days. 

Like Athena I am wondering if anyone has heard anything from K & S ?
She has been inactive for 10 days
 

[LorinnPKD]

Oh goodness.  I've been hoping to hear from her....

[Athena]

I am hoping that we will eventually hear from K&S, I am however fearing the worst case scenario. But until we hear from her, it is impossible to know with any great certainty. If she's slipped into a very bad state of health, she might recover & log back online again.

I hope & pray for the wonderful woman known as Kicking&Screaming.

[MooseMom]

Oh gosh, I am just now seeing this.  I'm not sure what to think.