6 days new CALS: husband wants to stop meds

[Tx Daddy's Girl]

Rick;
Heb 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us. 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

Our faith is so important to us, and we have found extremely wise and inspiring words to help us in this journey.

But I would like to share with those that do not believe in a God that I have personally experienced in both my own personal life, and in the my professional life the effects of a person giving up, and taking their own life.

Growing up, I heard my mother threaten suicide every time things got difficult, and I and my sisters have found that that is a thought that enters our mind as an alternative when things get difficult. I decided to break that chain, and never allowed my mother to utter those words around my children (she did try once) and I myself sought help when those thoughts came.
In my practise as a nurse dealing with suicidal patients, I often saw it as a family coping mechanism, and could trace a history in that family. Interestingly, when I asked that person who had family if they would want a family member to use that option they would look horrified and say "NO!" I told them my story and explained that they were setting an example for those that they loved, and I found many in tears and asking for help.

This disease is horrible, and I would not judge anyone if they felt that they wanted to end their life, as it is their life to take. But my husband has touched so many lives with his bravery and devotion, and he has begun to be thankful for ALS as a mode to encourage others.

Paulette

Faith is the only thing that has gotten us thru this.

 

[pearshoot]

try this...not dying with ALS...living with ALS...success

 

[barneyswife]

Nancy,
Life and living become very complex when ALS enters our lives.
We have found that all of the hopes and dreams of exotic sunsets and white sandy beaches really mean nothing!
They were wonderful to have but simply sitting close and enjoying each other when we are able to are the most important things in life.
So glad you found us.
Hugs
Linda

 

[zoohouse]

We had an amazing day ice fishing. Clear blue skies, Canada geese pairing up, no less than 6 Great Blue Herons, 4 Bald Eagles, countless seagulls, and 6 fish. My step-son got to experience this first time event with his father, and said it was more fun than playing on the computer. I showed him how to fillet them, and we fried them up for supper. He normally won't eat fish but really enjoyed these.

See just new dreams and memories. Tim loved watching his "Little Man" catch fish, and see the beauty of God's gift of nature, while soaking up Vit.D.
Paulette

 

[BK2011]

Sorry you had to join us. I certainly understand your husbands feelings, most of us have probably thought the same thing at one point or another. I'm retired military and when I start to think that way I tell myself "ruck up" short for "pick up your load and move forward, one foot in front of the other, one step at a time." One can endure more and accomplish more than they ever expected if they continue forward one foot in front of the other, one step at a time. I also put a sign on my bathroom mirror, "No Whinning", helps me keep my perspective. Encourage each other to move forward. Since I was diagnosed I've noticed the sun is warmer; the sky bluer; the clouds whiter; my wife, kids, and grandkids more precious than I'd ever noticed before. I enjoy every day I have.

You said you were signing up for social security under your SSN? Did he pay into social security? He's old enough to get social security at the full rate, no age offset; at your age I believe there will be an age offset that lowers your payments. That is, unless you qualify for Social Security Disability Insurance (SSDI), which would get you full SS. I retired at age 59 and qualified for SSDI so I get SSDI payments the same as if I retired at age 67. When/if I reach 67 I' be moved from SSDI to SS. With SS or SSDI you qualify for Medicare not Medicaid. With ALS there was no delay getting Medicare, I was eligible for Medicare the same month I started getting my SSDI payments. They also automatically signed me up for Medicare Part B. Talk to Social Security Administration, I found them very helpful when I called them trying to figure out what I was going to do when I got my diagnosis.

Is your husband a vet? If your answer is yes, run don't walk to the VA. ALS is assumed to be service connected; unfortunately a vet has a 100% higher chance of getting ALS than a non-vet. But the VA assigns Vets with ALS a 100% disability rating which gets disability compensation, gets him into their medical system for all medical care, and can qualify him for various grants and medical equipment. VA care has been super.

God Bless you both.

BK

 

[wattif]

As your husband becomes more accepting of his diagnosis, he will learn that his attitude plays a large role on how well he does. Life can still be good. You both are in my prayers.

 

[Dans_wife]

First of all, let me say how sorry I am for all that you are going through. My husband and I just received this diagnosis October, of last year. I quickly read through your threads and I didn't see anyone that mentioned the VA. Is it possible that your husband is a veteran? And, if so, are you aware of all the benefits that the VA offers for those who have been diagnosed with ALS?

 

[NeedCourage]

Thanks again everyone for all the great ideas and support. I've been in a whirlwind of phone calls and paperwork but this is where I come to relax.

 

[MaxEidswick]

>Is your husband a vet? If your answer is yes, run don't walk to the VA. ALS is assumed to be service connected; unfortunately a vet has a 100% higher chance of getting ALS than a non-vet. But the VA assigns Vets with ALS a 100% disability rating which gets disability compensation, gets him into their medical system for all medical care, and can qualify him for various grants and medical equipment. VA care has been super.

ditto that!

 

[zoohouse]

Thanks again everyone for all the great ideas and support. I've been in a whirlwind of phone calls and paperwork but this is where I come to relax.

It seems like the paperwork is never ending. When people ask if there is "anything" they can do for me I tell them they can do that. Have not had a taker yet.

I too come here to relax, or I love to go outside and spray down the driveway, it is mindless and it is like I am washing away my troubles.

Paulette