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Thinking about Mortality

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#1 Kathy D

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Posted 21 September 2014 - 10:51 AM

I have been giving thought to my mortality lately.  Today I finally watched this movie, I have known about this movie for many years but was not able to see it.  I found it for free on the internet today.  I will pay a  $ penalty for using more gigs than my internet plan allows but it was worth it.  I almost had a good cry but it didn't happen... Although, I am now feeling some anger and resentment, "why her?  or why him?, why me?!?"  How did my husband end up with a mother, father, and wife that are all terminally ill?  His father has Waldenstrom's, his mother has progessively recurring pituitary tumors, and me, Systemic Scleroderma.

 

Dear Husband and I made a pact 20 years ago (before I knew I was sick) that we would enjoy the journey and not sweat the small stuff, even when money was short.  Now both our fathers are elderly and we are facing their mortality too.  Our mothers are also aging.  How ironic that I now hate my birthday but I am so grateful that I am not as sick as one can get with sclero?

 

I guess I gave myself a swift kick in my behind today.  I get my tooth fixed tomorrow and will reschedule my overdue lung and heart tests.

 

No, it's not my little toe that hurts, but too many other pains have crept up again in the matter of only a year or so.  

 

I am not in immediate need but I feel the urge to get things in order.

 

I guess I need a will (lol I have no money to speak of, and the majority of our major purchases in the past few years including vehicle and house are in husband's name) so that is good.

 

I have a great godmother for my daughter, a loving and hands-on parenting husband and my mother is still quite active for her age (except we now live 3 hours away).  

 

I had life insurance at one time but have been denied after that ended.  Do I need and can I even get life insurance?  

 

I am on SSDI, is there any benefit to my daughter or husband when my time comes?  I guess I know my research next week while little one is in preschool.

 

Can anyone tell me items I am missing?

 

Thanks!


Diffuse Scleroderma Diagnosed March 2009

#2 judyt

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Posted 21 September 2014 - 07:31 PM

Hi Kathy,

 

I guess all these questions come up at some stage in everybody's life.   Everybody has to face losing their parents, I lost my Dad when I was 39 and my kids were still  only 7 and 9 years old.    My Mum died when she was 78 having spent the previous two years in a hopeless state after a major stroke.   My little sister died when she was 47 and my only other sibling is a brother who lives as far on the other side of the world as you can go from here.  

 

Yes we all have disappointments to face and it is good to think about it but I truly believe that the "why me" song is best left out of your repertoire.

 

From your previous posts I have seen that you are a resourceful and upbeat person most of the time and this feeling will hopefully pass and you will carry on as best you can just like the rest of us do.

 

For me, the best thing to do is to keep up with my check-ups, take my medications, report any changes in the way I feel to my GP and try not to moan about the cards I have been dealt.   A smile goes a long way in cheering yourself up and letting others know you are doing the best you can.

 

When it comes to practical things like a will, you don't have to spend money with a lawyer to make it legal.   One way is to simply write your wishes on a piece of paper and have it witnessed by one or two other people of a reliable reputation.   I would choose people you know you can trust but who live at another address from you, are not related to you by birth or marriage and do not benefit from your wishes.  

 

While you have young children it is wise to make a guardianship arrangement which can also be done quite inexpensively through the auspices of a well-known charity organisation.   You have a god-parent for your daughter you say but something a little more formal might be wise.   I am in NZ which is quite different from the US in lots of ways but you still have the same sort of resources available to you.   Once your children reach 18 or 21 this guardianship will lapse anyway but you have peace of mind in the meantime.

 

Maybe others will chime in with their thoughts too, but just know that I am now 70 years of age and have had Scleroderma definitely since 22 years and probably longer.   I believe I have a long way to go yet and you will too.

 

Best wishes,

From the upside down side of the world,

Judyt



#3 Joelf

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Posted 22 September 2014 - 03:18 AM

Hi Kathy,

 

As usual, Judy has written a wise and helpful post, with lots of good advice. I would agree with her definition of the "Why me?" song and rather be thinking "Why not me?" My mother is 92 and just about hanging in there; I see no reason, despite Scleroderma, why I shouldn't be heading for the same longlevity, but of course it's impossible to predict.  Hopefully it won't happen yet (I'm touching wood and crossing my fingers as we speak) but unless I get run over by a bus or some such unfortunate accident, I intend to be around for a while yet!

 

It reminds me of when I was first having breathing problems and thought I might have Idiopathic Pulmonary Fibrosis, which frankly is the worst type to have as there really is no cure and basically you just die! At that time I had the option of paying £600 into my National Insurance Pension in order to have the correct amount of years to enable me to claim the full amount once I reached retirement age. Before I was correctly diagnosed, I said to my husband "Right, that's it; I'm jolly well not paying any more into the system if I'm not going to get any benefit from it!" However, once I was diagnosed with non specific interstitial pneumonia (which is probably the best sort to have, if you're going to have it at all!) and I realised that my death wasn't immediately eminent, I paid the money after all and I intend to live to 92 or more like my mother, in order to get my money's worth!!  ;)

 

I can understand how you would feel worried about your mortality, particularly with a young child to consider; rather sadly two of my friends have passed away in the past two weeks (one from Scleroderma) and because I'm no longer in the first flush of youth and nor are a lot of my friends, unfortunately I fear that this will happen more frequently. I think the best thing is make sure that you do have a will in place, so that your loved ones are looked after; I'm afraid I can't advise you about life insurance or SSDI, as we have a different system in the UK.

 

I'm hoping you will be posting and enjoying our forums for many years to come!! :emoticons-yes:

 

Kind regards,


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#4 Shelley Ensz

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Posted 22 September 2014 - 10:26 AM

Hi Kathy,

 

I'll come right out and say it.  I think it is healthy and normal and good to be concerned about preparing for one's demise, with or without scleroderma.

 

Years ago, for very similar reasons, I became concerned about the same sort of issues you have had the oomph to bring up now.  I noticed I was starting to stew about it, which is never a good idea, so I took action instead.

 

I tried to think of someone who wouldn't be disturbed to work with me on a funeral-planning project, as my husband didn't want to think about it; he just couldn't bear the idea at that time, although later he could and did become very involved in such planning.

 

I remembered my ex-mother-in-law was always open about talking about death and funerals, etc. and she generally never let anything ruffle her feathers, either.  So I asked her to help me with my planning. She thought it was a wonderful, delightful, FUN thing to do!  We had a blast at the mortuary, picking out the best casket colors for our complexion, debating songs, and picking out our price range and assorted services. We even had some great stories to tell about it, at our next extended-family holiday dinner.

 

While on the gruesome topic, my husband and I, at my insistence, set up wills, estate plans, etc. I researched whether I could donate my body or organs to science.  The result of that is our Postmortem Resources section.

 

And you know how I felt afterwards?  You'd think I'd be a crying, depressed, nervous wreck, wouldn't you?  But it significantly lightened my load. I no longer had to worry about dying, from the aspect of being unprepared.  It freed up energies to enjoy TODAY, to smell the flowers, to rejoice, to LIVE.

 

So if you are thinking about it, my advice is to tackle it with joy and gusto.  Make it an adventure!  Set something in motion for it right this minute. Try to recruit a buddy for it.  Just realize some or even most people can't even fathom preparing for their own demise.  Surely you know somebody though who is not put off by such discussions -- especially, if you're not maudlin about it?  Recruit them for your buddy.  Do it. Get it over with. 

 

If you're anything like me, you'll be glad you did. There will be a fresh spring in your step, and a renewed confidence that you faced the worst question of all, and dealt with it like an adult.  I think *everyone* should make such plans. ANY of us could encounter a fatal accident or illness at any moment. NONE of us are guaranteed longevity or even the next day.

 

Planning for your children would be especially smart, and the most loving thing a parent could possibly do.

 

I say, kudos to you for thinking about it, talking about it, and two thumbs up. You go for it, girl!

 

And then, once its done, I expect you to live so long that it just becomes a tedious thing to have to review or update the plans, year after year, decade after decade, as it has for me. :yes:

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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#5 Amanda Thorpe

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Posted 23 September 2014 - 11:35 AM

We are all going to die, some quicker than others, so why do we make like it's something that happens to other people? As per your topic title, Kathy, we've all had to consider our mortality in ways we would not have before. Death is not abstract but a certain part of an uncertain future and as we don't have the luxury of just assuming we'll be old when the time comes we have to consider this subject in some detail. Hubby and I are doing are wills now, as is Ma who has terminal heart failure. Once done the relief will be immense because it's the thought of the job undone and the chaos this causes that makes me wild.

 

Why me...why not you?! Good point Jo and sorry about your friends.

 

Shelley, I bet coffin shoppin' with you is the best, riotous for sure! Did you ask to try them on for size?

 

When I was first diagnosed, even before heart failure etc, me and hubby couldn't watch or listen to anything remotely emotional without tearing up. There was a particular cancer charity TV commercial which showed an older man getting ready to go out the door,and his wife is reminding him to take his hat, his gloves and so forth, it being cold and she wanting to take care of him. He is pretending he's doing just fine thank you but he is actually enjoying her attention.  We then see that the wife is a memory, she's dead and he is alone, with just the memory of her fussing over him. Oh, my giddy aunt did we cry, I mean are you kidding me? 

 

Anyways. this is all very healthy and accepting, thanks Kathy and what was the film?

 

Take care.


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#6 miocean

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Posted 01 October 2014 - 04:18 AM

I was told not to watch the movie "For Hope" as it is depressing and a worse case scenario.

 

I have already started writing my obituary and know what songs I want played! (Dream on ~ Aerosmith, The Circle Game ~ Joni Mitchell, See You On The Other Side ~ Ozzie Osbourne) I am actually favoring a party while I am still here to be at it rather that a celebration after I am gone. 

 

We have wills, power of attorneys and living wills drawn up. I am working on a Letter Of Intention for my personal items.

 

I want to be cremated and am thinking about a natural burial, right now favoring the idea of being part of a reef in the ocean.

 

It is much better to be organized than leave the ones who are grieving with a mess to figure out. It is hard and I can't say I don't get emotional doing it. My mother had all her wishes written down including the shoes she wanted to have on (It was very important to her to have shoes on for some reason.) This made it very easy for my sister and I. 

 

We don't have children which in one way makes it easier and in another makes it harder. I often wonder why I spent my life accumulating things only to end up trying to figure out how to get rid of them! Even with the best of plans I have seen families fall apart over money and things after someone dies. 

 

I think about death a lot, not obsessively, but realistically. To me, it is a process, not an ending.

 

miocean

 

 

 

 

 

 


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#7 Joelf

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Posted 01 October 2014 - 09:04 AM

........I have already started writing my obituary and know what songs I want played! (Dream on ~ Aerosmith, The Circle Game ~ Joni Mitchell, See You On The Other Side ~ Ozzie Osbourne) I am actually favoring a party while I am still here to be at it rather that a celebration after I am gone........ 

 

 

 

Ages ago, I had decided I wanted "Land of Hope and Glory", "Jerusalem" and "Rule Britannia!" at my funeral; with that lot, it'll be rather like a re-run of "Last Night of The Proms!!" :P :lol:


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#8 judyt

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Posted 01 October 2014 - 01:11 PM

Hi,

 

Interesting topic and all your thoughts are stimulating.   I have been on the 'other' side of death several times.   Close family of course and have quite a different view from some of you.

 

First of all I think that funerals are for the living, I won't be there.   In the case of both my parents I had siblings to share with.   My father had made sensible arrangements financially because he had a business and a big home and garden.   Everything was discussed with us and we were all happy with what he did.

 

Mum was sick for 2 years and anyway what Dad had arranged was still in play and all we had to do was arrange the funeral.   In both cases, our sister had a lot to say about what should happen and we 3 all agreed because it was sensible and fitting.   As well we had the advantage of financial security, which I know not every family has.

 

Then my sister's life changed, she got married, changed religion (3rd time in her life) and became very devout.   Unfortunately soon after their marriage her health deteriorated and she became terminal.   Because of her new beliefs and life style she planned her whole funeral from beginning to end and we were presented with a fait accompli.   No room for us.   It was a performance we were expected to attend.  

 

Just another point of view.  

 

mio and Jo I know you have no children, nor did my sister, but maybe you have siblings who have shared your life and love you very much.   Making all the arrangements in advance may be more hurtful and difficult to deal with than you think.

 

Love and kind thoughts to you all

Judyt



#9 Shelley Ensz

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Posted 02 October 2014 - 08:46 AM

Hi Judy,

 

I'm sorry you've lost so much of your family, but glad that mostly the arrangements have been worked out smoothly. 

 

It sounds like your sister got the funeral she wanted, but not the funeral that you or your family wanted for her.  That can happen even in the best and most loving families.

 

Sometimes it is worked around by having several different services. One to satisfy the deceased and honor their wishes, and another to satisfy the family, expressing things in their way. Sort of the way people can get married just once but have more than one ceremony to accomodate everyone. And still, even with the best planning, there are always going to be people unhappy with some aspects of it.

 

Your family was very fortunate in agreeing on a few funerals. In many families, nothing can be left to chance, for fear of terminal in-fighting. It's never too late to hold a memorial, you know, if you feel things still haven't been set aright. I'd be very prone to do that, myself, if I didn't feel I'd been able to say goodbye properly, in my own way.

 

One thing is the way WE want to go out and be remembered. Another is the way others want to say goodbye. It doesn't have to be just one or the other, and it can make grief even harder to bear if we feel limited in how we could, or should, express it or memorialize it.

 

My biological father started an odd thing of "have a cup of coffee to remember me."  It was a specific wish of his. We found it helpful, and parlayed this into mini services for other things, like when our bird died, we talked and cried about it over a cup of coffee.  Later, Gene said he also wanted the same thing. His favorite coffee shop and cup of coffee with friends meant an awful lot to him. Maybe you need something fancy now, but maybe a "coffee cup" service might also be all that is needed, at this point.  Its just not right, to not somehow say goodbye to our loved ones the way we need to, whatever that way is.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Amanda Thorpe

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Posted 02 October 2014 - 02:32 PM

Well, funeral spells out"real fun" and that's what I want people to have.


I might make a video clip, with many acts and costume changes. Got to take my last opportunity to look better than everyone else! Well, who's going to talk ill of the dead?

Take care.
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#11 Kathy D

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Posted 02 October 2014 - 06:28 PM

Love the posts!  

 

JudyT, no worries!  All good here, just had reality check.  Thank you for your concern :)  I tend to check in certain friends in tough circumstances and I appreciate your concern, you cannot be too careful.

 

Shelley, thank you for this site where I can talk about important but uncomfortable topics, as subjects such as this can strike fear in our loved ones.  

 

Jo, your post made me think, I am considering "follow you, follow me" by Genesis (old phil collins band).  25 years ago I sang it about my boyfriend that I was infatuated with, he is now my longtime husband :)  But these days I still love that song though I interpret it in a much bigger sense....  

 

Miocean, yes thats the movie.  I was amazed at how many details I picked up on that the general public would not understand.  I guess I was in the right frame of mind to watch it, would not have been a good idea to see it while I was being diagnosed while I was fearful.  I also will not forget my wonderful rheumy telling me his 70+ year old systemic scleroderma patient says "scleroderma schmeroderma, no biggie" 

 

Amanda, fun has become a priority of mine!  Between contractors remodeling my home that come and go often for months now, and a few visitors that wanted to make the long drive to our new home, I just quit worrying about the state of my home.  Most of them are understanding its not up to par cleaning wise.  Interestingly enough, the most critical people have not bothered to make the long drive......HMMMM......  Anyway when I was truely able to let go of my previous high expectations having more fun has been happening more!

 

The ideas and terminology should help me wading through getting my ducks in a row, thanks!  Though my research will now be stretched over a year, as is has not happened in the last weeks :)  What else came up tonight while speaking with dear husband is what if something happened to him?  We need to safeguard our family in ANY event.

 

Kathy


Diffuse Scleroderma Diagnosed March 2009