Fading

[ghii]

Yesterday my husband went for prostate surgery. When it was arranged a month ago, he could still walk some distance. Ten days ago, he started declining. Yesterday he was so tired driving to the surgery, he was not even coherent. He refused to let me drive, today I take over all driving - which speak volumes. The nurses were very concerned. I could almost read their thoughts, "What are they doing operating on him when he is dying." He looked that way, as tired as he was. The surgery went very well. He has been sleeping since.

The nurse was so concerned, 45 minutes later, she was going off duty and I heading to the restroom, mind preoccupied when she stopped me and asked me if I know where I was going. She greeted me like an old friend. Somewhere during those minutes, we connected. I was very touched by her concern.

I noticed both nurses wincing when they saw Als and going very solemn.

I found a good way to cope, cry out all the tears that has to come out and then I can stay dried eyed the rest of the day. I was crying this morning, praying for God to take him before he suffers too much and saying at the time, - I don't want him to go.

I felt sad just now looking at him sleeping. And then I thought, he is at least not in pain. That is a comfort. He went downhill so fast, a friend who saw him last week could not believe her eyes. She gave me a big long hug and told me I needed it.

He has it for more than two years now. It seems when it finally catches up, it catches up very fast.

gertrude

 

[Miss]

Gertrude,
My thoughts and prayers are with you. It seems to me that my husband loses a little something everyday. I just pray he hits a plateau, so that we can really enjoy some time together as a family this summer before our daughter goes off to college. I find it all so very frightening. I wonder if I'm strong enough to handle it. I sneak away and cry all of the time. I try very hard not to do it too much around my husband, it seems to upset him too much.
I'm so glad your husband's surgery went well and that there were no added complications. My heart goes out to you.
Missy

 

[brooksea]

Sending you a hug, as I know no words that will comfort.

 

[pepsiman]

ghii,
I feel your pain. Both in hoping he doesn't suffer too much and in not wanting him to go. I struggled with these feelings for so long. I actually ran out of tears long before Liz died. I think in a way it saved my sanity. I wish I could offer more comfort but I don't think there is anything I could say or do.

Big hugs,
Dick

 

[ghii]

Miss, I ache for you. My husband is almost 80 and had been telling me the last two years he has not long to live even before he got this sick. The past months he told me he feels very close to the other side. He is contented and at peace. It makes it so much easier for me. Your husband is so young and with children, that has to be killing.

CJ, thanks. It does help being able to share it here. My siblings are so spook, they prefer me not to talk about it hence I could not talk about it in family emails. I never thought of it, that family members can find it hard dealing with something of this nature. They look at their own bodies and are terrified they will get it especially since one of my sisters has MS and a brother is going through all kinds of nerve sickness. I rather worry for him.

Dick, that says so much, tears running dry. Today after the hard crying, I found myself isolating a part of myself, readying myself that way. I was listening to the radio and it talks about the healing power of laughter. I make a point of laughing just to laugh for the healing propensity. It does help. I am of sunny disposition. I tend to smile and laugh without a cloud over my head. Now I could feel my eyes staring, haunted, my face tense hence I must make a point of laughing just to laugh.

I looked back and thought, who would have thought it is this, the many times during the last two years when I got him to see this and that doctor, unable to trace the problem of his going downhill so fast and his fatigue. When he was diagnosed with myeloma, I thought, - at last we know the cause. The blood specialist told us myeloma does not cause this and that problem. His swallowing and speech finally led to the diagnosis and a good sharp neurologist. He saw one before who detected the swallowing problem and left it at that. It was the present neurologist who traced both problem to Als.



gertrude

 

[irismarie]

Gertrude, Missy and everyone? I just so want to share love with you alll and wrap youin a big protective cloud

 

[ghii]

Something strange happened this morning. I woke up and for the first time since I learned about my husband getting Als, my insides was clear, my heart light. I get that way when I am worried about some health issues from my family. A clear insides usually means there is nothing to worry about and it is often right on but there is no cure for Als, nothing has changed there so why the clear light feeling that came up this morning and gave me a positive boost, lasting all through the day.

I cannot explain it but am grateful for it. I have been sunked in a hole so deep. I was able to separate myself the last two years my husband suffered from extreme fatigue and depression, and through his myeloma diagnosis. The Als sucked me in till often I am in a quiet tense state. Maybe today the fear left me and I am more ready to face whatever comes.

A survey on the elderly shows they are often more happy and that it all lies in the attitude. I talked about the ray of light in the darkness. This feels like a ray of light in the darkness. Our human nature is so interesting, made of matter and spirit. The spirit part is unfathomable and deep, surprising us with its depths. I am so grateful for this light and will follow it. I was saying the thing with Als is - the lack of hope but this light shows hope in other forms.

Irismarie, thanks. You are a beacon of light and love. I look to you often, your bravery and spirit in this hard journey. Your indomitable spirit.


gertrude

 

[Blubear]

Hi Gertrude, Hard to say what is actually going on with your husband right now hun. You say he started getting really fatigued two weeks before surgery, and my optimistic self says, "Hey, he's tired because he is stressing over the surgery!" You know how the smallest bump in the road can set them back with the fatigue? I would think that impending surgery would qualify for stress right? That is my hope hun. Plus any kind of surgery will set your husband back because of the ALS, so now he will be tired from that, and it will take a long time to heal. I am sending you an optimistic hug, you hang in there!
~Kari

 

[ghii]

Kari, thanks. I have always been able to separate a part of myself, until this Als thing. I read about it, the horror was such, it was like I was in my husband's body. What he suffers, I suffer. I believe what happen this morning was a kind of freeing. I am able to reserve a part of me again and realize the sun is shining however dark and bleak things ahead might look.


gertrude

 

[Blubear]

Gertrude, I am glad you are in a good place emotionally! It will give you strength. I believe that if you are able to put yourself in your husbands body like that, you must be true soul mates. It is amazing how deep the soul of one goes. Keep hanging in the sunshine!
~Hugs, Kari

 

[indigosd]

Gertrude, sending you Prairie love this morning! Is he home from the surgery? All of my fruit trees exploded with blossoms this morning and it is soul beautiful! xo

 

[ghii]

It is strange. When I experienced "positive" on Wednesday, I wondered if it could mean my husband will be better and then dismissed the thought, from what I read, with Als it only get worse, not better but he actually got better. Today he is back to normal, his new normal which means he is able to do more. For the last two weeks, every little thing he did would reduce him to moaning in bed from sheer exhaustion, so tired he did not care about anything. We went to Flea Market and he was able to walk when last week he could barely walk. It leaves me mystified and very glad for this reprieve. I hope it lasts. We are living again. And when he gets sicker than usual again, I will try to remember not to stop living, the sun is shining and the world goes on.

I realize this morning, the newness of this disease is so terrifying, my mind imagined the very worst. When he started getting very very tired daily and was able to do little, I assumed the worst - that worst is going to happen and it is the beginning of the end.


gertrude

 

[Blubear]

Yiiipppeeee! I KNEW it was just the stress of the impending surgery! Ya got more time with your guy!
Blessings!
~Hugs, Kari

 

[ghii]

Kari, thanks. I like your Yiiipppeeee. For the first time in weeks, my heart is lighter today and life goes back to some kind of normalcy. Ever since learning of Als, I have stayed in a kind of frozen mode. I thought I had accepted it, apparently I did not. It was like something gripping me the entire time, not letting go its grip. My every thought became colored with Als. I was living, breathing Als. I thought Als means bad days, worse days, and worst days, everything sliding steadily down. I am grateful for this recovery on my husband's part. I know he will get sick again but at least he does get good days amidst bad days.


gertrude

 

[Blubear]

Aww Gertrude, I am so happy for you and your husband hun! We all live like that it seems. Living, eating and breathing the damn disease. We gotta get out of our own heads and try and live for just today. I try and compartmentalize my fears and thoughts here about the ALS, and then I can give 100% to the rest of my day. Um....I am kinda here a lot though. Plus, it is my dad who has ALS, and not being with him everyday makes me crazy, so this way I feel closer to him somehow. You hang in there luv, and give him a big hug from me!
Hugs, Kari