We've all been dancing around ... Quality vs. Quantity

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MaxEidswick

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Sep 1, 2013
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5,598
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
this, I hope is provocative, not confrontational ... Debbie, Kim, Mike, Jeff, Mark (you too), Dalvin, Tillie/Katrina and all of the others here that are dealing with (or trying to deal with) what we face: loss of everything: speaking, use of arms/hands/legs/et al., ultimately breathing.

Some of us surrounded by love and all that it means, others destitute/alone and all that means.

But what does it all mean? I offer the question because I don't know the answer. I sense I have months of some form of communications, probably enough to prepare for Sandy. But what then?

I open this serious question to you, my friends, who can help me with direction now ...

Thanks and regards,

Max L. Eidswick
aged 62
onset 9/2010
diagnosed 8/13
and the rest can be guessed ...
 
For me, I chose to have a feeding tube because it can improve quality of life - no chocking, still get full nutrition and towards the end fluids and meds can be administered. The fact that it also increases quantity is a side benefit.
As for the rest I've said no, if all it's going to do is prolong the suffering and take away more freedom I don't want it. I myself don't consider that living, more like existing and being even more of a burden. Family has already been told I'm DNR
 
When I first got diagnosed, I wanted all the things that could prolong life. BiPap, feeding tube, diaphragm pacing, power chair, and a tracheotomy.

But now, as I approach the 9th month since my diagnosis, I've changed my mood drastically. I have a BiPap, which I would stop using if I knew I could progress quickly. I have a basic power chair, which I think my walking would speed things along. My appetite is so nonexistent I can go all day and not be hungry if I stay in bed all day so my blood sugar doesn't drop because I'm not eating. It's because of the toll it's taking on my family.

Tracy

Deep in the "hot" of Texas
 
Tracy

aged 50 and 11 months
Onset the fall of 2011
Diagnosed 9/19/2013
Still kicking but getting disillusioned
 
Max........................I know where you are coming from completely. I fully understand the changes you must be going through...and it broke my heart to read what you have been through the last few days without Sandy.
If you let yourself get left unattended EVER again....I am coming to Texas to insert my boot in your ass(size 16).
I don't know if it is something in the water or the Earth's axis, or whatever....but we all seem to be going through melt downs at the same time, and I hope we all get through it with no additional disasters!
We are both realistic people and reality is what's kicken our asses right now..... sure, you are more advanced than I in your decline....but I am going through what you were a year or so ago....and you are going through what will be my future.....
I haven't been posting much lately because I am having trouble adjusting to my new meds, which has isolated me even more.....I don't know if I want to spend what time I have left being a zombie..................I don't know any of the answers, I just hope that we will all wake up tomorrow and pretend we are happy!
 
BigMark- thanks for the video. Made me happy the whole time I listened to it.

Debbie
 
BigMark- thanks for the video. Made me happy the whole time I listened to it.

Debbie

Sure thing Debbie.....I try to watch that video at least once or twice a day, it seems to lighten my mood a bit....can't dance to it though!
 
Chris used to say to me - you think you know where you have set the line, but as you progress it moves too.

I call that 'moments of lucidity' that he had with FTD and totally agree on that point!

Max, and everyone, it is hard for any one person to say where the line should be drawn to signify that quality has ended because people tend to talk about it in milestones. eg if I need a peg or a pwc or whatever.

To me this has less to do with the question than does the INTERNAL side of things.

This is really difficult with text! Let me say this - quality is an internal state of being, but it is affected by the external state too.

I can only use the situation we were in to provide examples that I hope will make sense to others in a different situation.
Now for my Chris who had worked for so many years in hospitality, losing the ability to speak and swallow first was pure hell.

Chris insisted on attempting to speak as long as possible, resisted learning to use technology even though I purchased good quality technology for him very early so he could learn to use it before he fully needed it. He instead insisted on attempting to speak, and relying on me, and requiring me to stick beside him all the time and interpret for him. The energy it required from him was enormous, the conversations were painfully slow and often confusing, and he withdrew from people more and more and more.

He constantly blamed it all on the fact that all other people were lazy and couldn't be bothered trying to understand him, or treated him like he was mentally impaired. If only they would get over themselves it wouldn't be so bad ...

For me, losing the ability to speak and swallow would be devastating, but I would have put my energy into all the technology I could find out about to use for communication and learn as much as I could about communicating effectively with that technology. Just as I've been active here on this forum, I would have been actively communicating with people, just differently, and it would have taken less of my energy to do so. This means I could have had better quality communication, using less energy. INTERNALLY I would have had better quality of life as I could communicate.

Of course, my ability to use technology would have continued to decline.

Chris would tell me that it was just too hard to even try to communicate.

Now, this is just an example, please don't all take every tiny point too literally. We are all different, and for someone else the biggest issue may be mobility, continuing to work or something else.

Tracy here is amazing in how she has continued to work with children when many others would have given up. But she hasn't done it by 'fighting' the disease and being stubborn. She has done it by recognising her limitations and working with others to overcome them. One day Tracy will have to stop working, but I will bet anything that she will have all the wonderful memories of how long she continued to work for, in a quality way, and how it has touched the lives of so many.

Max has been able to change his work role to still contribute something of great value to his employer, but again recognising his limitations and working with others to overcome.

BigMark modified his motorbike so he could continue to ride longer with safety.

For Chris, it was just plain draining, unproductive and embarrassing and not only did he withdraw more and more, but people didn't really want to come and spend time with him because they found it so hard and embarrassing.

Trying to put it 'in a nutshell'
To me, quality of life means firstly working out what is most important to you. Then working out how much energy you are using on the things that are not so important, and getting assistance with those things (dressing, showering, walking eg), thus preserving as much energy as possible for the important things.

Gosh, I've got all this in my head and it seems clear, but the more I'm writing here the more I wonder if I'm making sense at all.

If not, it might at least be giving 'food for thought' and you can all debate it :)
 
Makes perfect sense to me tillie! For Jim his quality of life comes from praying for others and leading our home --I consult him on all decisions and that works great. However, Now that his voice is but a whisper and his energy from respiratory insufficiency--diaphragm weakness is so poor it's hard to get out, reach out and externally do the grocery shopping which he loves we have made adjustments to respect that quality of life.

As things cont to change we've found that praying together, serving god using my arms and legs (a meal or note to someone in need) and sharing moments we see in gods creations have given Jim huge quality of life. We have an albino squirrel that's fun to watch!
 
Minnesota that is a perfectly written example!

If your Jim put all his effort into attempting to do basic care tasks for himself then he may not have the energy left over for those things that you describe. I think that being able to still contribute, and to feel you are contributing is a big key to quality of life.
 
>Max........................I know where you are coming from completely.

Mark, how did you embed the youtube video?
 
>Trying to put it 'in a nutshell'
To me, quality of life means firstly working out what is most important to you. Then working out how much energy you are using on the things that are not so important, and getting assistance with those things (dressing, showering, walking eg), thus preserving as much energy as possible for the important things."

Katrina, thank you for putting together such an excellent collection of thoughts. All food for thought.

Thanks!
 
>We have an albino squirrel that's fun to watch!

Hi Marie, we have the most shy birds of any I have ever seen here in Northwest Houston. Up in our Colorado mountains we had almost 30 new birds by this time… we kept our records … But that only lasted until a forest fire. :-(

.
 

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>For me, I chose to have a feeding tube because it can improve quality of life - no chocking, still get full nutrition and towards the end fluids and meds can be administered. The fact that it also increases quantity is a side benefit.

Thanks for the feedback, Dalvin. I will only agree to the feeding tube if I cannot get that house purchased in time. Otherwise, from the time I can no longer swallow is 7 to 10 days.

Is this suicide? bullshit. It is a survival for Sandy.
 
>Max........................I know where you are coming from completely.

Mark, how did you embed the youtube video?

Just hit the insert link icon (it looks like sunglasses in front of a blue ball). It pops up with a blue http...delete that....then paste your link. Valllah.......it ain't rocket science!
 
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