Planning Ahead

[jokerman]

My wife is 21 months post diagnosis. Presently, she cannot walk or stand on her own, and her speech is impaired. She has been on a PEG tube since October, and she is maintaining her weight. Her breathing remains good, and we are not on bipap.

She progressed rapidly last summer. Within a three month period, she lost the ability to drive, walk, stand, or handle what is known as the "tasks of daily living." During that time, we could never catch up to the disease. It was very, very difficult. We cannot do that again.

We all hope and pray that she never progresses any further. But for the good of our family, we have to prepare. What do we need to be thinking about? For any caregivers out there, what do you wish you had prepared for in advance? What caught you by surprise? Can you help me get ready?

Any ideas would be appreciated.

 

[brooksea]

jokerman,

like your screen name!:mrgreen: Welcome to this great gathering of PALS and CALS.

My husband is not in the same situation as your wife, as his ALS started with bulbar symptoms and hands. But, I would like to point out that his FVC was at around 85% in March. The Emory Clinic wanted to put him on BiPap. They believe that if all PALS would go on BiPap before breathing gets critical, that the PALS will breathe independently for longer. Of course, Medicare will not pay for the BiPap, as his FVC is not low enough. The clinic got with ALSA and we have a loaner. Since he has been using it at night he seems to have more energy and can get up earlier than before.

Is her speech so impaired that she would not be able to voice bank? My husband tried to voice bank but just couldn't get it done. I know it is frustrating for him to have to repeat everything all the time. We will probably be looking at automated speech devices at the next clinic.

It is very hard to predict what may happen with this disease. I'm very sorry your wife has lost so much in such a short while. It is hard to give over control to "A L S!"

You may want to make sure about your wife's wishes for a vent and think about all the necessary care that will be involved if she decides to go that route.

Some things are hard to think through and difficult to talk about. I wish you and your family well.

I'm sure others will have a lot of info to add...

 

[Coach's Wife]

I have a few suggestions that worked for us - but please remember, like ALS, everyone "plans" differently. Our children are all adults - at the time, they were 18, 22, 23 & 28. After Jeff and I discussed our future plans, we shared them with our children to make sure they knew what our wishes were (I planned my 'arrangements' right along with my husband so our children would not have too many decisions to make when my time comes.) We transferred our assets: house - Quit Claim; cars - "gifted" to me those cars that were not in my name so there was no tax; everything and anything we had in both our names was transferred into my name only. We didn't have to go through any courts so no life insurance money was wasted. Select your cemetary plots, go to the funeral home now - you will be in no shape later and you don't have to pay now- pick out the things you want and don't want - allow your spouse to have some choice in the matter. Update your wills, have a Living Will drawn up (for both of you) including a DNR order, if applicable; a Power of Attorney is a "must have" document to keep with you at all times. You may also want to think about giving Power of Attorney to another member of your family for a specified amount of time. In the event I couldn't do something, my sister and mother could do it for me. For those of you with minor children, discuss what will happen to them should they lose both parents. I know...heavy discussions all the way around. But, in the end, you will be glad you had these discussions. Unfortunately, I know all too well.

Jeff and I were completely comfortable with our arrangements. My sister is an attorney and gave us a lot of guidance. To make sure you are covering all the bases, you should definitely seek legal advice. I hope this helps you think about some of the things which need to be done.

Louie
Coach's Wife
(former cals to husband, Jeff - 7-5-2007)

 

[caroliney]

Do Prepare.

Hi Jokerman,

First, so sorry you are having to endure this dreadful disease but feel your thinking ahead is very smart.

With such unpredicitable circumstances even with your health, please do seek a Lawyer, preferably in elderly law, as they know exactly how to handle everything for you.

Contact the ALS Association and asks for tapes, literature, every thing possible to educate yourself and your family on this disease.

Bi-Pap use seems to be recommended as this helps ALS patients with the breathing issues and if your loved one is experiencing headaches, she needs the Bi-Pap.

Also, Al can direct you to more topics on this site for reference of sorts.

God Bless you and your loved one.

Hugs,
Caroliney

 

[brooksea]

Louie

I would like to thank you for visiting the forum and contributing what you have learned. Thank you so much! Your information that you shared has helped me and I'm sure others. I will take your advice and run with it! Thank you again!