This is so darn difficult!

[ruthiep]

I never imagined how difficult this journey would be. I joined the forum right after my PALs (a/k/a my husband) was diagnosed and have been pretty diligent in trying to learn and keep up with EVERYTHING about this damn beast of a disease. Call me dumb, but I failed to grasp early-on the emotional and physical toll this would take in our lives!

I honest to goodness cannot ever remember being so drained in my life... the incredibly difficult conversations that we do have and the ones that we need to have that he's refuses to discuss. I'm trying to be proactive about home modifications, etc. and he's in complete opposition to even talk about it. I get the fact that this is "his disease and he will deal with it as he chooses" (as he consistently tells me---which I respect), but darn, THROW ME A BONE!

My heartfelt thoughts and prayers go out to those that have already walked the path I'm traveling--to those that are journeying with me and those that will travel behind me.....this truly stinks!

Hugs to all.

Ruth

 

[brooksea]

Sorry, Ruth! I wish I could offer some advice that would make it easier, but I cannot. I hope you have the advanced directives worked out. The modification thing is really hard when your pALS won't co-operate!

Hang in there!

 

[dberbicegirl]

I can identify with the emotional roller coaster "the beast" puts you under.. The entire family is at a loss for words, it is still too early to digest everything

And I agree this disease sucks . Love and continued prayers to all on this journey

Desi

 

[Miss]

The emotional and physical toll is unbelievable. When asked how I handled it, I really have to answer honestly that I don't know! I'm thinking about all of you current CALS.

 

[BrianD]

I get the fact that this is "his disease and he will deal with it as he chooses" (as he consistently tells me---which I respect), but darn, THROW ME A BONE!

Ruth, so sorry. I do want to offer a different PALS perspective... VERY respectfully as I can say this is not "his" disease. It is just as much yours as well. I personally think much harder on the CALS. I know it is difficult.

 

[themommy]

This disease is utterly horrific. It presses on emotions that can't be controlled. It hurts your heart and can destroy your spirit - if you let it. The disease is hard - but the emotional turmoil it places on the entire family is unbelievable. We try so hard to keep it in - but eventually - it leaks out - usually as someone else who has it - passes away....

 

[rachelg]

Oh Ruth it is so damn tough.

My husband has ALS but I always feel that we have ALS. We, as a whole family.

As main carer/wife, it is all you have said - exhausting and more. You will carry on finding the strength, I dont know from where and how but you will - we just do. At times, I have felt that if I didnt sit down just for a minute, I would literally fall down with exhaustion - but a few minutes later I am up and carrying on.

It does stink - it bloomin well does. As mommy said - it hurts your heart x

Thinking of you.

 

[HelenL]

As a PALS, I'm in the opposite end, and trying to get everything done without hubby, as he doesn't want to deal with it... but sticking your head in the sand doesn't make the beast go away.

I agree with Brian, this is not just "his" or "my" disease, it affects everyone in the family. Too many CALS are getting hurt from trying to help, when being proactive, getting the equipment before you need it is literally a lifesaver.

Good luck,

Helen

 

[10steps]

No matter how much you read about it, you can never be truely prepared for the devastating impact, emotional, physical, family, etc.

 

[dragonflydi]

Ruth, if you are his primary caregiver, it is not only "his" disease. It's very hard when your PALS refuses to enter into necessary discussions, but necessary is the key word. If his progression isn't too fast, you have time to get to those discussions, but either way, they need to be done. Is he open to therapy? My husband was very, very resistant to therapy, so I started going. Eventually, I convinced him to meet the therapist with me. Now he sees her every two weeks alone. It's been fantastic for both of us. She is wonderful at getting him to discuss difficult topics and he is much more open with me. Another very difficult issue is the loss of control. If your husband is like mine, he hates to lose the "dominant" role in our relationship. Regarding modifications, I just plowed ahead and went for a ramp early on. Now, he's thrilled that I did that. Making those executive decisions is really hard and there will be resentment. But what's more important than your mental and physical health if you are the one who is taking care of him? What would he do without you? Good luck--Diane

 

[Barbie]

Ruth, I so feel ya girl. It is truly terrible what this disease does to everyone in the family. I know that I get so frustrated and angry at my pals (most all the time unfortunately) and I wish I was so wonderful and loving but it is just too much. We use to be so happy, so in love, we had such a great and happy family life and such good bond with our children. It is like ALS takes every thing from you and destroys everything good. I wish I could see you to night and give you a big hug.

 

[Tofinodays]

Ruth,

My heart goes out to you. I know EXACTLY what you are talking about and it is so very stressful. I found it helpful to bring home devices (cane, portable urinal, etc.) and found that within a short period of time, my husband would use most of them. Once the disease began to progress more rapidly, I insisted on returning to the ALS clinic in Toronto which started the ball rolling. Bringing in PSWs was very difficult and I didn't do it in time to save myself from ending up on medical leave.

There were many things that I worried about for months and lost a tremendous amount of sleep over: living in a two story house (as my husband wouldn't consider moving to a bungalow while he could manage the stairs), access out of the house given that we have stairs, washroom renovations. Too bad I didn't know that answers would present themselves. My husband is too fatigued to care about a shower so we have been sponge bathing him since January. He uses a bedside commode. The ALS society loaned us a 10 foot temporary ramp for access out of the house.
I hope you are have a strong support network as this is what has saved me to date.

 

[pmbenb83]

Ruth,
I've read and heard that we are to stay ahead of the disease with assistive devices, home remodeling, etc., but some of these guys dig their heels in and want to ride it out until the last moment. I know, because my husband is exactly the same way. God bless him! He's wonderful, but he definitely makes these last minute decisions a little too close for me. I would search through this forum and write down all my plans...plan A this person did, plan B this person did, etc. almost to plan Z, because I wanted to be ready with an option once a problem presented itself. But once a function loss was upon us, we seemed to adapt and overcome with a plan that didn't even crossed my mind. It would be great to have it set in stone how to get through this disease, which is what I was trying to do all those sleepless nights trying to prepare for him.

Maybe having a safety net of rough plans for yourself to fall back on when the need arises will help you have some peace of mind until your husband gives you the okay that he's ready for the change.

Hang in there!

 

[joni51]

Ruth, I understand the emotional and physical roller coaster. I am always tired... Hugs to you and all CALS

 

[Jennifer D]

Oh my, it's like you read my mind and then posted it! I'm right there with you........Hang in there!
Sending you big hugs!
Jennifer