ALS Stays Same - Life Keeps Getting Worse

[myooshka]

Hi just a thought why don't you get your friend, the one who is going to help you get the dog to call a advocacy group or to get a social worker to come see you. I know it is probably scarey to think about leaving your wife, but if you think she's evil you probably do not want to stay with her.

 

[delb]

I am sure he will do this if it comes to that. She is still good most of the time, like right now. But when she changes it is just plain evil. No patience at all. He is willing to help, but he has a disabled child of his own from birth. When the chips are down he will be here to help I'm sure.

 

[delb]

Just wanted to say that I was left alone again for yet another holiday this Thanksgiving. My wife went to visit her kids and did not want me to come. They did, but yet again for more times than I can count she didn't. Holidays to me are depressing and become more so for each passing year.

 

[sharona]

Hello

Hi delb,
Sorry to hear you was left alone today.But I think I would rather be alone than to be with someone like your wife. She is being very thoughtless & Someday will pay for being this way to you. God knows every action that we do & I don't think he is very happy with her. Just enjoy as much as you can. God Bless.
Sharon

 

[swmn]

I agree

I am glad you didn't have to endure Her presence - I wish you could be with my family and me-- but i'm still thinking of you hope you can embrace a passion while she's gone - good time to get that dog you wanted... ((((Hugs)))) from me and my family.

 

[Gina]

Hi Delb, was reading over your posts and i feel so bad that you have to endure this situation.I hope you know that we are all pulling for you and as far as your wife goes i wont even say what im thinking they would have to censor it.Apparently she dosnt know the meaning of thanksgiving!Take care and ask God to find you a way where thier is no way....He will!.....Gina

 

[delb]

Thanks for the good wishes ! This is the true meaning of Thanksgiving for me. I hope someday things will turn around for me. At least ALS is staying the same and not getting any worse.

 

[hope]

delb,

It is truly heartbreaking to read your post. From reading your post I believe you are saying, I am hurting, my heart is breaking, I am feeling lost. Lost in a world that has seemed to go cold. At this time you need kindness and understanding. A friend with a warm heart and loving soul that will be there for you is very important. What is also important is you need you. You are a human being and deserve to be treated with respect and kindness. What I am reading is that someone basically is been able to take away what they need and left you feeling alone. I believe that true love is precious and when we love someone it is through the good times, and the bad times. True love does not walk away and leave one alone. Keep hope in your heart even though it is very hard to do right now. Let yourself cry when you need to, but also let yourself feel life around you. You are in a horrible disease and yes it is devastating to be in this. My heart breaks for my loved one every moment of every day but I hold him in my arms with my heart and this is what love is. You do not walk away from someone when they are hurting you walk with them even though the walk carries a heavy heart. Hold on and never give up because there is wonderful caring people that will come into your life along the way, people who truly care. Be with people who support you and show kindness. Sometimes just someone else's kind words can help pick one up to keep fighting the fight. The people here are very kind and caring, reach out for support. Kind words from others who care can be a warm blanket on a cold day. I hope this helps a little bit.

hope.

 

[Shasta]

Delb.....Holidays can be depressing for everyone. OMG Hope's letter is filled with so much kindness that I could read it over and over again and forget about all MY problems. I've spent years assisting in disasters for Red Cross. I've seen tears, agony, dispare.....but along with that I've seen the concern, the happiness, accecptance and love. Your story mirrors those that don't even have ALS. WOW you are strong. Thank you for taking the time out of your life to spend Thanksgiving with us.
Doug

 

[Clbrink]

It is so wonderful to see the support you are getting from everybody here on the forum! This site is amazing! My husband was diagnosed with ALS 4 years ago, it has been very difficult.... FOR ALL that are touched by what he calls "his worse nightmare". At the time we had just had our daughter, she was 4 months old when he was diagnosed, his miracle child, she gives him the the extra push to want to fight! I knew it would be difficult, my husband is a very private person, and it was a fight to get him to accept outside help, it took 3 years. His family (Father and brother) were not supportive at all, actually they made things difficult. My husband closed down at one point, he stopped interacting with the children, stopped communicating, got very angry. My 8 year old daughter stopped talking, my family was concerned for me and the children. I left the house, but I never left my husband, although he felt abandoned and at his lowest point! At the time I had to regroup, for my sake and the children, my husband said he would never forgive me. It all sounds so simple when I type it out, there are so many stories between the lines!

My husband and I are living together now, what changed? he accepted that it was not just his illness, that it affected all of us, that it was not about it being "unfair" for him, that it just was, and we were all going to make the best of it. Most importantly he realized that he had a lot to see, share and that he made a difference! That he was very much alive! That he was loved, and he could love! I kept telling him that I was waiting for "that moment", that moment being something that we would carry with us for life, memories that make a difference!

There is one thing that I have learnt through all of this, that intentions go a long way, keeping your thoughts positive tends to cause positive things to happen to you and those around you, and that communication is key! Understanding that everybody deals differently, that you can not assume what others are feeling or thinking, and you should never have expectations of others, just wishes.

I hope that everything works out for you, stay strong and do not close your doors!

Christina

 

[delb]

Thanks for your wonderful replies. I have had a long string of bad luck the last 3 years. No family left on this earth makes the holidays very depressing. I will remain hopeful and positive like I always have been. To let anger take over would be extremely dangerous. I do remain lost and depressed though. I adjust to whatever comes my way. I lost my ability to speak, so I started writing notes. I have difficulty eating and drinking. But that does not stop me from eating or drinking by chocking it down. My left leg and foot does not work properly. But I still limp along. I will keep trying to adapt and overcoming some things with sheer will power. Don't know what the future holds, but I anticipate most things before they happen. So little that comes my way is a total surprise.

 

[delb]

Thanks so much for the Christmas messages. Just wanted to say that I went to the county hospital to enroll in their Heathcare program today. Got turned down again due to my wife's salary. Seems like the program is for illegal aliens in this country, and not for people who really need it. My wife is being nicer this week, but verbally abuse me again over there and back. ALS is a little worse in some areas, but I am still fighting it and making small gains in some areas too. Hope we all have a better New Year.

 

[Gina]

Hi delb,i am so sorry that you were turned down at the hospital!Life is just too #@#%$ unfair at times.I know that you said your wife is being a little nicer this week but you know sometimes verbal abuse can be worse than other forms of abuse.Please remember that what she says to you says nothing about you but a hell of a whole lot about her!Anyone who could kick a man when they are down is definately not a nice person in any sense of the word.Please remember also that she can not make you feel bad about yourself without your permission!You have to believe in yourself and know who and what you are and what you are all about.Keep that inner spirit and passion for life and that which you love about it.Dont let her take that from you.!My wish for you for the new year will be that you will learn to love yourself enough to not allow yourself to be treated in this manner!.....Gina

 

[swmn]

You know how to find me

no care taker is better than a bad one - you deserve better care- you are in my prayers - and as for your selfish wife, she is in my prayers to find morecompassion and mercy for others.
Delb - stay in touch through the forum - you need the support of us all!

{{Holiday hugs for you}}

 

[delb]

Gina,
Thanks for the inspiring words. I printed it out to read when she makes me feel depressed.

Swmn,
Thanks, I will stay in touch.