Trying to live in the moment

[hawroe]

Hello everyone. I am pretty new here. My husband and I have an 11 year old daughter. Eric was diagnosed with ALS in September. His legs are pretty weak and we are getting a wheelchair tomorrow. He is unable to walk or stand for more than five minutes. He has fasciculations in most of his muscles and terrible, painful spasms.

So much has already changed. He no longer works and most physical activity just fatigues him so much. Even the way he feels to me is different. We have been married for 16 years and when I rest my hand on his leg and I have to look down just to make sure it is his leg.

I am a planner so I feel the need to prepare for everything. I am doing my very best to try to live in the now and try to enjoy what I have because it will continue to change. I want our daughter to have as many good memories of her dad before things get really bad.

I am grateful for the 25 years I have had with Eric, but I just want more and I want my daughter to have more.

Heather

 

[tdamess]

hugs to you , you are at least thinking the way you will need to enjoy all the time you can for the good things still to come .. and you do need to be prepared for the not so good .. wheelchair is a great start to me just because of falls ,alone and a hoya lift if he falls thou he will get up on his own till he cant and his pride will be so hurt but you's will go on .... everything will have to go along the rout his als takes him but i think the 3rd thing will be the bathroom needs to be fitted for his needs .. so much to come but not all at once it is good to have things early so it will be there when needed but take 1 thing at a time or you will overwhelm yourself ... i dont know of the help you can get in your area i am not from there but someone will be here to help you soon , wishing you the best

 

[Barbie]

Hi Heather,

I am so sorry you and your family is affected by ALS. when my husband was diagnosed 6 years ago my youngest child was almost 11 so I feel for you. You have conflicted feelings and that is normal--with time you will come to terms with what is happening. I am sure it is hard on your dear husband right now too. It is so hard to watch a strong person change and become weak and needy while also deal with your own emotional issues and your child's needs.

My advise is to try everyday to see past the physical changes happening and focus on the man inside. you just don't know how much time ya'll will have together. See if you and your husband could brainstorm on something that he and your daughter could do together. Perhaps learn chess or computer games or some books on tape the harry potter series? Twilight? hunger games? or walk the dog together everyday. (him rolling, her walking). I have a friend who's husband took up painting after getting als--abstract--and his young daughter was his assistant. when he could no longer hold the brush with his hands or toes or teeth, he directed his daughter's each stroke. it is a precious story and memory for his daughter for the rest of her life (he died this last summer).

dont' feel bad for wanting more...we all do. even now after 6 years, mostly I feel acceptance but sometimes still feel angry, sad and cheated.

your friend,

 

[hawroe]

Thank you for your encouragement. It helps not to feel alone.

Heather

 

[CasaHopkins]

Oh Heather, I feel you! You are not alone. I have 3 kids, 15, 12 and 9, and my husband was diagnosed January of 2013. We've been married 18 years. I've been where you are. I've felt what you are feeling. I dont know how in touch with your spirituality you are, but it has helped me tremendously to pray every night, meditate as often as possible, and try to stay in the mental space of "acceptance".

It's like you got forced into a boxing ring with this monster opponent and both of you know he's going to knock you to the floor eventually. But it's up to you how each blow is going to affect you. It's up to you how much effort you put into fighting back, or if you decide to curl up and take cover. He won't kill you. Eventually the beating will just end. Your job is to endure it and then get back up after its all over. For me, every bit of change toward the negative has felt like a punch in my stomach. I have to take it, feel that pain and then allow myself to accept it and move forward anyway because there is more where that came from.

I used to be a worrier and planner. I'm not anymore. I've gotten really good at living in this moment. I am very considerate of who I allow in my house and anywhere near my family. I only want positive, loving people in our space. I play uplifting music in the house a lot. The kids and I dance around the kitchen quite often too.

When he first got diagnosed, I had SO many fears. I'm over that now. I've given it all to God and I live in faith instead. Now that I'm getting toward the end of this experience, I'm looking back at it with a different perspective. I consider this time, from diagnosis until now, as a gift. Its been a gift to be able to serve my husband the way I have and its a gift to have all the quality time to be with him in a way that we took for granted before. Life really is too short to waste even a moment of it. Loving and serving others, that is what life is about.

Don't get me wrong, it has been a long arduous process to get where I am mentally and fears still creep up almost daily, but I am guided by my faith. There are SO many great books to read, or listen to if you don't have time for reading. Feel free to email me and I will share those with you. They've helped me tremendously.

I hope this helped you in some way. Just keep swimming! Wishing you peace and sending you love and light!

 

[CasaHopkins]

i meant diagnosed Jan 2010

 

[Polar]

My advice is to just try to ignore ALS (it's not like there much you can do about it anyway) Just live life to the best of your ability and don't dwell on what will happen next..

 

[hawroe]

Thank you everyone. I try to keep a positive attitude, it's hard but I try.

I am amazed by the grace and strength my husband has shown through all of this and I draw a lot of my strength from him.

No kidding about feeling like you have been punched in the gut with every change.

I appreciate the support and understanding.

Heather