our news

[rocmg]

mum was diagnosed with als today.

there's no point in trying to describe how we all feel right now, but if anyone has any advice on how they coped with the first few weeks i would be grateful.

rosheen

 

[beverly rees]

I am so sorry to hear about your Mom. My husband was diagnosed in October. When I first found out I cried alot and the next few weeks wasn't able to sleep or eat well. I focused on all the terrible aspects of this disease and was terrified.

Now that we are 3 months down the road I am doing much better. I realize that none of us knows our future and that people can live with this disease for a long time. There are quite a few people that are living with this disease for over 10 years.

I am fortunate that my husband is one that focuses on the good things in life and is not a complainer. He finds new ways of doing things to maintain his independence. I have decided to get some counseling which has helped me deal with this situation much better.

We are also fortunate to belong to a very supportive covenant group at church. We also have quite a few good friends and family members that support us.

I have always been a person that is a planner and am now learning to live one day at a time and enjoy the good times we have now.

I told one of my friends yesterday that I thought I would never be able to laugh again when we first got this news but we still laugh, play golf, take vacations, hike with the dog, entertain and enjoy life. Hope this helps. Bev

 

[thelma313]

Rosheen, I am so sorry to hear about your Mom's diagnosis. I totally know what you are going through. My Dad was diagnosed in August and for the first week I was in a total state of fear. Panic just seemed to possess me. I could not get through a day or even an hour without crying. The second week was a little better and then when I came to realize that my Dad was still here and I better learn what I can from this incredibly difficult challenge I started to feel stronger and more like I wanted to fight the good fight with him.

I don't know if this is allowed but a book helped me tremendously. (Al, feel free to jump in if I am crossing a line) but I found great comfort in Eckhart Tolle's "The Power of Now." It helped me to live in the present and really helped me get past the constant state of fear.

Finding this forum so fast is a great step for you. You will find great comfort and valuable advice here. Also I am here to tell you that you will survive this initial shock. You will survive and you will learn that this too shall pass. Kiss and hug your Mom! She's still here and many people live with ALS for years and years. You'll get some good tips from some amazingly wise PALS.

 

[rocmg]

thank you both so much. i'm utterly devastated. absolutely and totally. i feel like my heart has been ripped out of my chest. i just can't see anything positive right now and listening to mum sobbing uncontrollable for hours is the worst thing i've ever experienced. sweet jesus help us.

 

[Al]

Nope, no problem with that Thelma.

AL.

 

[Zaphoon]

Rosheen,

It takes a while to get over the shock of the diagnosis but once it subsides, life takes on a new norm. You make adjustments along the way and develop greater coping skills. Having said that, it still doesn't make anything easier.

My guess is, pretty soon your mum will stop crying and will begin to adjust to things. I'm pulling for you both!

Zaphoon

 

[brendapals]

Rosheen,
Yes, it does take time to get over the shock. No set amount of time-it's all very, very individual. You take all the time you need.
I was diagnosed 9 months ago, and we have had plenty of ups and downs, but mostly I have learned to love more, cry more, laugh more AND cook less, clean less, so it has all kinda balanced out for us.
Take good care, and know that our prayers are with you and your family,
brenda

 

[jimmybob]

brings back memories of the day i was diagnosed. my best advice to you, as a care giver, is patience and compassion. your mom is going to through various phases of emotions, anger, sadness, varying degrees of depression. i don't know what her current physical ability is, but now would be a good time to take that trip or do what ever your mom has wanted to do, but hasn't yet done.

i was an avid golfer. luckily i took my golf trip to scotland (st. Andrews, carnoustie, troon, and prestwick) 2 months before my diagnosed. i wanted to play pebble beach and surrounding courses, so i coordinated a trip to play those courses with my scotland buddy and my brother. it was fantastic and one of the best times of my life, despite being barely able to hit a golfball half the distance i used to hit it. it was about good times with good friends and family.

i wish your mom well. keep positive even when your mom isn't.

 

[kylisa]

I can say that when this started in May of 2007, I was devestated for my mother. Since then I have made peace with the situation simply because watching her get progressively worse makes me realize that when death comes, it will be a blessing.

I come from a religious background. My father is a minister. My mother has been and is still being a real trouper through this disease. I wish we could have talked her into doing more while she was still able to do things. I wish she had been willing to utilize the options available way before she succumbed and had no choice. Today, she is bed ridden. My father lays in the hospital bed with her fairly often in order to keep her on her side, in hopes of avoiding massive bedsores. She still has use of her right arm and hand, so she squeaks a bicycle horn to summon us. We put her the bedside potty then, back in the bed. Occassionally, she wants to be put in her wheelchair and pushed into the other rooms in the house. I believe this is so she can make sure nothing has changed. The hospice nurse visits once a week and an aid comes out weekly to wash Mom's hair. Right now, her life consists of tube feeding, television, and looking out the window at the birds eating at the birdfeeder Daddy hung outside her window.

I can say that I cried most of my tears early. I steel myself now because if she can keep a decent demeanor, then I ought to also.

Just be sure you make the most of the time left. and may God give you the strenghth to get through this.

 

[rose]

Rosheen,

I'm so sorry, I hope you and your family are able to cope soon with this. The very best of luck to all of you.

 

[hopealive]

coping

Hi. I am right with you, mom diagnosed 2 years ago. I remember vividly that first week, I went out in the garage and drove nails through some boards, that felt good. Then threw a carton of eggs against the sidewalk, sounds dumb but I was so angry, didn't know what else to do.
Thinking and praying for you.
Love,
Holly

 

[mndireland]

Hi Roisin, I know we have been talking privately and I hope the advice I have given you is helping in some ways. Everybody is saying the same thing here I see, the despair and fear of whats coming is gripping at the beginning, but in time you learn to adjust to the changes, and to make some changes that help. In turn you will find friends and family will be a great help to you and this forum is without question the best source of advice on medical and emotional worries.

I will say my best advice yet, Make some special memories. Do things your mum enjoys and some nights, not all, but some nights she will go to bed with a smile on her face. Your kids bring you so much joy, so bring her some in the times ahead. As hard as it is for you, and they do say for some its harder on the family, I just think how awful it must be for them, to lose their independance and to ask your children to wash you and dress you etc. My mam said to me the other day, you have seen my whole body now, sights you shouldnt see, but I just said, I dont look. When we shower her, I always wrap the towel around her while I do her hair, so she is not sitting there exposed, she hates that. I know its about dignity for her. You will in time learn little things that will help her.

As these few weeks pass you will come into your own routine and treasure the little things, the trip to the shops, spending all day infront of the tv watching films and eating chocs etc...

Im thinking of you, take care x

 

[perplexed]

Dear Rosheen

I agree with whomever wrote it takes some time for some calm to enter your lives. Until then, it will be very hard. But the new normal will take effect and the machinations you will go throught for symptom relief are just part of your daily grind, like waiting in line used to be at the grocer's. Some advice I got from a woman whose husband has ALS was useful to me, so I'll pass it on; once you are all able to, don't put things off! Take a vacation together, start "new" family traditions that take into account your Mom's new limitations, have movie night together instead of dinner or dinner out, etc. Being part of the family no matter what will help her, though she won't feel up to much for a while.

Tell her you know there's nothing you can say but that you will do whatever she wants to help her. I'm sure she knows that but it's good to have it reinforced.

I hope any of what you read here helps. This is a group of incredibly strong, empathetic people who reach out to help others, and I think you'll find some help and comfort here.

I am sending good thoughts your way.
Erica

 

[DgtofTNfan]

Rosheen,

I am so sorry your mom was diagnosed. My Dad was diagnosed just 2 wks ago and it is still so painful and raw, it makes it hard to breathe sometimes. Our neuro said although there is no cure, we can stay one step ahead and that is where I am trying to focus my energy. We have made a to do list and started crossing things off.

I have searched this forum and found many threads that answered many questions. The wealth of information here brings me comfort and I hope you can find some comfort here as well.

Sending positive thoughts to you and your mom.
Dana

 

[rocmg]

Thank you all for your replies. It has been 2 and a half weeks since our news, and it really has been the worst two weeks of all our lives. I don't mean to be morbid, but it is comforting to know there are so many other families going through what we are going through. It's so easy to feel like you're the only ones this has ever happened to. The people of this forum have been marvelous, with all their kind words and advice on coping.

thanks again and God Bless. Here's hoping for many positive days ahead.