Long Life! | Arthritis Information

 

I am hesitant to post regarding my petty moans and groans.  I offer a thousand pardons to those who are in far worse places than I and a thousand thanks to anyone who takes the time to read.

My list of complaints is nearly endless, but each pales in significance to what will be the focus of this week. My physicians have kindly, and appropriately, recommended that create an “end-of-life” plan. Now, I am not planning on dieing soon, nor are my physicians announcing my imminent death, rather they are counseling me to plan ahead; be prepared, and know what I expect and desire should this current diagnosis of renal amyloidosis progress beyond the point of manageability.

With all that in mind I met this morning with an attorney to draft an End-of-Life-Plan which includes no aggressive ‘care’, hospice rather than hospital care, a pointed and reiterated do not resuscitate order, and a desire for my organs, including my skin, be used to whatever purpose is appropriate. The remainder will be cremated. I do not want a funeral, rather I have set monies aside for a celebration of my life to be held three months after my death. It is my desire, in drafting this plan, to prevent confusion, anguish, and angst for everyone as the end of my life approaches.

When all the legalese has been incorporated in my plan (I personally find it macabre that an attorney is necessary to set a plan in place…) copies will be distributed to each of my physicians, to the local hospital, to the EMT system, to hospice, and to each member of my immediate family.

There! One necessity on the way to being a fait accompli.

To long life!

Our whole family has one of these plans, we picked up forms  from our G.P.s office  after my father died 10 years ago and I carry a condensed version  in my purse .

I have had a so-called living will for many years, however according to my physicians and now the attorney an end-of-life plan in chronic illness is different in both execution and presentation at least here in the USA. To be completely covered I now have both.

[quote]I am sorry about your renal amyloidosis my grandmother had a form of this due to alzheimers and as my mother has alzheimers we worry that she too will be affected.[/quote]

'This' form of renal amyloidosis is a direct result of the encroaching inflammation of undertreated RA. A very real risk in undercontrolled and/or undertreated RA.

Thank you for your well wishes. They are appreciated.

Cheers, Shug

Very belated edited to close quote tag.
Spelunker2009-08-12 08:11:09  while I hope you live forever (or at least as long as I for my own selfish wishes ) Shug, my mother hasnt and my grandmother did not have RA , my  grandmother  did have severe gastro problems throughout her life. She was quite fit and healthy otherwise until she lost her memory and then  renal amyloidosis was dx when she was put into a care home. Quite ironically it was hypothermia that killed her, she got out of the home and ended up in the Thames in the middle of november clinging to a piece of wood in her nightwear. Thanks Babs. I was, I admit, more than a bit surprised at the detail included in the end-of-life plan, right down to a rather extensive list of acceptable and non-acceptable drugs to say nothing of acceptable an non-acceptable palliative treatments.

I "suppose" the depth and the scope of the plan are two of the reasons for involving an attorney.
When my mom died several months ago, she had already made the plan, and had paid for, her cremation.  Aside of that, we four kids were winging it.  Now, this is in no way a complaint against my mom, but I will say that a clear plan set by her in advance and all according to her personal wishes would have been very helpful to us.  Their would have been no scratching of the head and trying to remember if mom ever said anyhting about doing this thing or that thing.  So take heart in the fact that in doing this, you will be making a very difficult time, maybe the most difficult thing in their lives so far, just a little bit easier.  And I too wish many more happy and fullfilling years for you.Shug, thanks so much for posting this.  I've thought seriously about an "end to life" plan.  In fact it's been a serious discussion in our household.  I want to find out if it's respected in Mexico.  Since I spend half my life there it's important that I make sure that it's respected in the hospitals in PV.  I don't want to depend soley on a living will, not specific enough.  I'm not sure that it's always carried out in the manner that the ill person thinks it should be.  LinB2009-06-22 10:17:13Thank you everyone! Lindy, FWIW, the attorney told us if I was to travel out of country I needed to file the end-of-life plan with the consulate immediately on arrival as well as with the local police dep'ts and hospitals. He indicated that chances are about 90% that the plan will be followed.

Yes, as I have discovered, a living will is not nearly specific enough especially in the case of chronic illnesses.

Snow Owl, I too hope my apprehensions are overridden by my innate sense of curiosity and I go out of here with anticipation and humour.

Linnc, I truly hope by being so very specific that my transition between this life and physical death will be easier for my family.

Cheers!!
Spelunker, [QUOTE=levlarry]Iwill only trust and believe that you will be absolutely fine and your medical conditions be brought to the grade of enjoyable living.[/quote]
Thanks Lev! I believe that with treatment, including Enbrel and haemodialysis, that this disease will be controlled and prevented from getting worse and in the meantime the uncontrolled inflammation that caused it will be brought under control...then voila![/i[: remission.
With all that has transpired since my original end-of-life plan was constructed, I met with the attorney this morning and added a codicil. As we were discussing the slight alterations, I wondered to myself, and then out loud, how many more codicils will be added as my "condition" waxes and wanes.

I still plan on living a good long while and in the interim enjoying the moments for all they, and I, are worth.

My new moment to moment motto is, Do not merely survive: thrive.


I like that new motto!! Hi Spelunker,

 

I commend you for working on the plan.  My father just finished his and it will make it a lot easier on everyone because we clearly know what his wishes are.  I have the living will but have not done anything else.  Of course, my thorough wish is that you will continue to live and your medical conditions will get better to the point that you are comfortable.  My thoughts and prayers are with you...HG

Again, I am hesitant to bump this post regarding my petty moans and groans. Once again, I offer a thousand pardons to those who are in far worse places than I and a thousand thanks to anyone who takes the time to read. I have spoken with our attorney and added another codicil in light of recent developments.

I can only recommend that everyone make their wishes known for end-of-life care and where appropriate contact and attorney and set your wishes in legally binding terms.

To life!
Our bodies may fail but our soul will continue to advance in the spirit of life. I recently saw a post in which a person stated that they felt their body had failed them.  What a blessing this is as the author now understands that they and their body are not one in the same.  Yes, bodies fail from old age, sickness and irreparable damage.  A person's soul, spirit - that living entity - in each of us goes on.  Making preperation for an unservicable and discarded body is a wise choice.  Let's hope you can delay the process and keep body and soul together for as long as you like.I am so sorry to hear how things are progressing.  I don't really know what else to say.  Just know that we support you, and if I knew a way to help, I would. [QUOTE=Spelunker]Again, I am hesitant to bump this post regarding my petty moans and groans. Once again, I offer a thousand pardons to those who are in far worse places than I and a thousand thanks to anyone who takes the time to read. I have spoken with our attorney and added another codicil in light of recent developments.

I can only recommend that everyone make their wishes known for end-of-life care and where appropriate contact and attorney and set your wishes in legally binding terms.

To life!
[/QUOTE]

Hi Shug, I don't think there would be too many people in far worse places than you right now, keep your spirits up as only you can, keep praying, all my prayers are going up for you right now, God Bless and hugs from Janie.XXXX
Shug, you are an inspiration for all of us. I've worked in the area of guardianships for 25+ years - arranging for someone to be appointed as guardian, usually for a loved one with dementia, Alzheimer's or other debilitating disease that takes away ones ability to make decisions. I can't tell you how many families are faced with the endless decisions about end-of-life issues and don't have a clue what their loved one would want. Doing the end-of-life planning is such an important step to take and, yes, it does involve an attorney to insure that your wishes will be legally enforceable should there be a family dispute - and I have seen way too many of those! Again, you are an inspiration and I hope and trust that you will be around for a long time to give us more direction. Take care and thank you.Shrug,

Thank You for being You! 

You are a lady I would like to aspire to !

Keep on being our Teacher, but lean on us too, sometime.

Love you, Lyn                                                                                

[QUOTE=Rascal]I recently saw a post in which a person stated that they felt their body had failed them.  What a blessing this is as the author now understands that they and their body are not one in the same.  Yes, bodies fail from old age, sickness and irreparable damage.  A person's soul, spirit - that living entity - in each of us goes on.  Making preperation for an unservicable and discarded body is a wise choice.  Let's hope you can delay the process and keep body and soul together for as long as you like.[/QUOTE]

 

Those are my thoughts but I cannot articulate them any better than Rascal has done.  I do hope remission remains a possibility for you.  This disease has so many layers - like a hellish demon onion.  Best wishes.

I thank LynM and Rascal.. you said it so well.

 

Shug...... *hugs*

 

love ya, girl.

[QUOTE=janiefx1] Hi Shug, I don't think there would be too many people in far worse places than you right now, [/QUOTE]

Ah, Janie, there are any number of folks on this discussion forum who are in much worse places and physical conditions than am I. My complaints and grousing are simply that: grousing and complaining. I have accepted my place in life and am at peace with my prognosis. I have no children to angst over, my husband is fully in touch with me and with my condition, my family is supportive and understanding, and I am reconciled to my fate.

Peace and contentment have replace angst and discontent and that make me a very fortunate individual.
Shug - I wish you you continued peace, comfort and acceptance. Recently my brother has been given less than a year to live and I see these same feelings in him. I admire you both very much.
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