Living will anybody?

[bythesea]

I have been reading this forum several times daily.

I have found a great deal of hope, inspiration here and most importantly facts (or experiences).

However after speaking to a social worker about my possible ALS, her first response was "Do I have a Living Will"?

After reading all your thoughts about PEGS and electric wheelchairs I came to realize that I haven’t seen this topic broached.

Any suggestions would be appreciated.

 

[mare]

Hi, bythesea-

Check the search feature for "advanced directives".
Also, the alsa.org website, as well as als-mda site might have some info. on this topic. I know in the literature we've received from them, there is information on this.

While in general, I do think that anyone can benefit from having this in place (esp. once you have a family & dependents), and most adult community/assisted living facilities require/encourage residents to have this; I am surprised the social worker brought that up first, especially in light of the fact that your diagnosis is not confirmed. (do I have that right?)

That's a little insensitive, IMHO!

 

[bythesea]

Living Wil?

Well yes she (the social worker) is in a nursing facility and her response kind of took me aback but upon consideration realized it was more like an autonomic, professional response.

However should I lose the ability to climb lots of stairs (I live in a hundred year old house) and have no close family outside my wife…that’s probably where I’ll wish to go.

Back to the living will. I’m not looking for general information but personal guidance.

You guys have got me to a least seriously consider a feeding tube but what if I cannot communicate, need 24 hr.total care, can’t breath unassisted. When do you draw the line?

I think that’s the essential purpose of the living will.

Having worked in a long term facility for nearly 30 years and seen my Mother suffer from Alzheimer’s for seven years and my brother slowly deteriorate from a neck fracture; I’m looking for some personal insight.

I’ve been disabled for seven years with cervical dystonia and so I’m already familiar with loss of quality of life.

 

[mare]

bythesea-

Are you being seen/diagnosed by an ALS specialist, at an ALS center/clinic?
The reason I ask, as you may well know if you have been reading here, is that these centers- whether ALSA or MDA- have many resources, including social workers who work all the time with people who need to consider this and many other issues involved with ALS. They are better qualified to help guide you thru the process.

No one can give you personal guidance- that is & must be personal.
But you can get knowledge & facts that will help you make those personal decisions.

It seems like you are still in the diagnosing stage, and that is such a difficult time. Shock, fear, anger, saddness, disbelief- to name a few. It is overwhelming! From personal experience, I would say to give yourself some time to just absorb everything; find out as much as you can; how much is involved so far (so far you have said only possible ALS)

If you have a definite diagnosis, then there is lots of help to be had thru ALSA & MDA.
There is still quality of life - it may be redefined; but that is a personal choice you CAN make!

Good luck; please continue to ask any questions, and definitely continue to search for answere here!

 

[tdamess]

if i may say-i have noticed some people want things to be a cut off point but when it comes time a lot of people change thier mind,as with one person didn't want to be peg, after talking to people here they change thier mind and got one and was happy about it.when my mom had a stroke and was in rehab the director and i talked about this subject he said all these people did not want to live this way before this happened and yet i see most of the struggling to hold on , they do want to live and my mom held on for 7 yrs and you knew when she was ready to go and she never wanted to be depented on anyone but she lived in her bedroom not being able to get out of bed or talk with any understaing except for automatic speech as in hello, bye, god bless you, and she could sing happy birthday everythin else we couldnt understand point is what you may want now , may not be what you want later as things come about-best of luck and hope for the best for you

 

[bythesea]

Thanks mare for the advice and information.

You are right about the diagnosing stage being a difficult. I believe “Shock, fear, anger, sadness, disbelief" are probably the normal reactions.

And like you said "No one can give you personal guidance". Maybe this forum just isn't the place for its posters to reveal such inevitable conclusions.

I’ve been living day by day, seizing opportunities to find fulfilling activities and accepting that I will never be the person I was for many years living before dystonia.

I am not afraid to die and find now that conversations on the subject are more enlightening than to be feared.

 

[Zaphoon]

When I arrived for my last MRI some months back, one of the first questions the check-in nurse asked was, "Do you have a living will?"

I thought how odd for the MRI check-in lady to ask me such a question.

It is a sad thing to contemplate but it sure alleviates a lot of stress on loved ones as it is one decision they will not have to make.

Zaphoon

 

[indigosd]

bythesea,
In my opinion, EVERYONE should have a Advanced Directive [Living Will] and a Durable Medical Power of Attorney. None of us are going to get out of here alive! Having been a RN for 26 years, I would almost like to have DNR tattooed on my chest :] My Husband and I have both items in place for peace of mind. My husband and I will do everything to fight for his life and keep him stable with the hope that a cure will be forthcoming. He will get a Peg, Bipap and trach if necessary. The ONLY thing that we will NOT do is resuscitate him. Advanced Directives are simply a way to inform others of your wishes about your life and gives them permission to do what YOU desire. I hope and pray that you will find out that you do not have ALS.

 

[Patsy]

Aging With Dignity Five Wishes

 

[abbas child]

bythesea,
I got my living will in place quickly after being diagnosed. I don't want my husband to ever make the hard choices which could add an unnecessary feeling of guilt, although we talked about my decisions together before the will was made. It's so good you aren't afraid to die--neither am I. I can always change my mind, tear it up and make another will, but cannot imagine wanting to. In faith I believe that this world is only the beginning of LIFE.
Ann

 

[indigosd]

Patsy,
Thank you for the wonderful link!