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Ius2bSJ

Member
Joined
Aug 15, 2010
Messages
13
Reason
Loved one DX
Diagnosis
09/2009
Country
US
State
Wa.
City
Steilacoom
No support groups for spouses of ALS patients in my area so I guess you're all IT.
First question: I still cannot tell friends that my husband has ALS without crying. Sometimes I just go ahead and blurt it out and cry anyway. Does this ever stop? My emotions are so fragile. Any other wives out there with words of wisdom? How my life can go from soooo happy to soooo sad is shocking! In front of my husband I keep a PMA but boy when he's not looking, I'm a wreck! Married 48 years. I'm 68 husband 70.
 
Unfortunately, I do not have words of wisdom to pass along to you. We all learn to deal with this horrible disease in our own way. My mom was also diagnosed Sept 2009. I went through a period of denial, which didn't help anyone. I've simply tried to spend more time with my mom and tried to make the best memories I can to have with me when I no longer have her. I go with her to the ALS Clinic so that we can hear the news at the same time. I try to learn as much as I can from others who are involved with the disease. I wish you had a support group you could go to, as it is so very helpful. My parents drive 2 hours to come to our group. It's not just for the spouses, it's for everyone. Do you have something like that near you? Keep as busy as you can. That helps, too.

I wish I could do or say more. Just know that we are here for you. You will meet some wonderful people on this forum. You and your husband are in my prayers.

Love and hugs,
Linda
 
Welcome to the forum, but sorry that you had to look for us. My hubby was diagnosed 11/09 and I can identify. At first I couldn't go anywhere or see anyone without crying. For some reason, church was one of the hardest places to be at first. Once we both calmed down from the anger/hurt/how could this be happening to us feelings, we decided that we were simply going to try to make the best of each day- and most of the time the attitude works. However . . . I still cry myself to sleep many nights, although journaling has helped somewhat, and some of our closest moments have been crying together, which isn't such a bad thing sometimes. To be totally honest, I think that the crying/emotional fragility declines on the surface, anyway, in proportion to the amount of time and energy spent caring for your PALS. I think that the emotion part of the disease itself is eclipsed by the physical and emotional drain of being the "strong person" that you have to become and the double time that you have to put in to keep everything going as smoothly as possible. We just celebrated our 40th anniversary - we're both 62. Just a year ago we were hiking in Yellowstone with not a care in the world - today hubby has lost use of his legs/hands/arms and is totally dependent physically. His speech is now starting to decline. I don't think the underlying feeling of saddness will ever leave me, but I do have to share with you a recent day. We were with our best friends - they picked us up, got hubby into the SUV, and took us to their place down the shore. (we brought along the commode, the transfer disk, the gait belt, - quite a sight packing the car!). For about three hours we forgot about the ALS - everything seemed so normal even though we were feeding hubby - and it was a wonderful feeling. Of course, reality did hit, but the vacation from reality was wonderful. And more wonderful memories were made. I hope that soon you might have some of those moments.
Hugs to you. God bless us all.
Claire
 
The emotions will settle down, everything takes time. I think one of our senior members just commented recently that after 4 yrs she has finally reached the point of no more tears when talking about it. Whenever I tell someone for the first time, I still break down, and it has been almost a year. As you learn more, it will become easier, and believe me, you will learn a lot. HUGS Lori
 
Hi, so sorry that you had to come here. I still break down when I have to tell someone how I lost my brother. It will be 2 years in November. It probably will get easier as time goes on, some times. Make the best memories as you can while you can. Don't sweat the small stuff. Lots of people on here that will be able to help you. If you have a bad day go on the rants page and let it out. You will feel much better telling people who get it. I'm just amazed at the strength of all the PALS and CALS! I just keep trying to educate people about ALS, so many really don't have a clue what it is!
(((((hugs))))) Colleen
 
Dear Ius2BSJ,
I completely understand the emotional drain and stress. Like others have pointed out, everyone has his/her own journey in regards to accepting the realities of this disease and there is NO wrong way. However long it takes you, it takes you. All the people who love you will completely understand.

The more you can get those feelings out with your friends, the easier it will be to regroup and stay positive with your husband. Cherish the good days and find one thing each day to be thankful for.

Peace,
 
I carry a bottle of water everywhere I go. It is physically impossible to sip from it and cry at the same time. Sounds simplistic, but it works. Once my tears have been held in check for a few minutes, it becomes easier to talk without breaking down.
 
Hugs and prayers to you and your husband. I'm sorry what you and your husband are going through. What your feeling is normal. You've come to a wonderful support group here.
 
I had a similar problem (crying all the time) when my husband was diagnosed in 2006. So much so that I couldn't really talk about him or ALS without crying. I took an antidepressant which helped me through the next two years--my husband passed away in 2008.
I knew that I needed to be able to function and take care of my husband and that I needed help. I know that a positive attitude and time help, but sometimes an antidepressant can also help when you are dealing with this horrible disease.

I have stayed on the ALS forum, b/c my husband's ALS was familial and I have concerns about my children.

Marsha
 
Linda,
Thank you for your reply. I really haven't looked into support groups farther away. We seem to be so busy with VA appointments, etc. that our quiet time here at home becomes MOST valuable. Chuck spends at least 30% of his day on his bi-pap which I understand will become even more as the disease progresses. We are most thankful for each other, although he is totally humiliated by having me help him so much. Such as buttoning his pants, putting on his compression sock, emptying his pills into applesauce so they're easier to swallow, etc, etc. You all know what I mean here, I'm sure. This whole degrading disease is a true character builder on both of our parts but so far we're building OK. I wish the best for you!
 
Lori,
When Kari had me look at pictures of you and your husband I just began sobbing. I am so sorry. You two are so young. It makes me so thankful for the 48 years (almost a half a century) I've been granted with my husband. I wish the same for you, however much it must seem a dream. You never know, Lori. Hope is eternal and a PMA and laughter great medicines. Chuck still cracks himself up after a sip of a Gin Martini. And I do mean a sip. He will not give up this one indulgence of one martini. What will it do? Kill him? Yeah, right! Along with my beef jerky we're a happy couple. Thanks again.
Sharon
 
Well, I've heard of bitting your checks, deep breaths, etc. but the bottle of water sips is a GREAT idea. I'll try it. When I can't drink anymore water, though I wonder if I'll still keep it in check. Or maybe I shouldn't anyway. Why did God give us tears if not to shed?
 
Boy, are we on the same page! A month before my husband was diagnosed our Lutheran Pastor was transferred to another state. His replacement was terrible, I must say! Church was already a place where I couldn't control the tears so I quit going. I still don't want to go and sit there and cry through the whole thing. What is that? We found a new church but I still start to cry just pulling into the parking lot. I am so emotionally fragile! I just can't go in yet and subject all those people to my grief. My husband who was raised in a one room school house in Indiana, strictly Lutheran teachings, is now questioning his faith. 70 years of belief and now? Can you blame him? I don't. I wish I could see your message as I write this response because I wanted to respond to other things you said but I can't remember what they were without seeing it again. Sorry. (Another stress related condition, memory issues..........just too many things sometimes)
 
Thank you for taking the time to respond to me. Words of wisdom are always welcome, but more importantly you took the time to share your thoughts on my trying time along with yours.
Sharon
 
Sharon, First I would like to say "Welcome to the family". We all become each others best sounding board for the good and bad. Feel free to vent, cry, rage, laugh of just be a cynical smart a$#! The only thing I can warn you about though is we all have some really "bad" sences of humor.

My PALS was DX in 12/06. He was 33 at the time. We have 3 kids. They are now 13,11 and 9. The crying will slow down and you will level out after awhile. Only time will tell how long. It took me almost a year to say anything about it w/out crying. Then comes the lovely DR visits.. that took almost 2 yrs. But we have a great team there. The love to laugh and so do we. I became known for "tattling on my hubby. He was always trying to make it sound better than it was.

The best advice I can give you from my stand point is try to look at it logically (or cynically). It will happen the question you have to ask yourself is how ready will you be for the next phase. How prepared you are will reflect on how well your family and PALS ree-act. TRY to stay positive. God is walking this road w/ us and He will pick us up when we fall and carry us when we lose our strength. So we are never alone in this.

Keeping you and yours in my prayers! God Bless!

P.S. Blubear and I are friends too.
 
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