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Nuts

Extremely helpful member
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Joined
Feb 23, 2014
Messages
2,636
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
I'm having trouble getting motivated to do the things I need to do. I find myself actively avoiding anything other than direct care of Matt. I can't get them all done, so why bother doing anything.

I've upped my meds and started a 5 session course with a therapist. I've started a new quilt class (one class a month with lovely ladies). I walk the dog most days. I actually got out on the lake with grandchildren this week. It seems the more I do for me the worse I feel. It's not supposed to work like that, is it?

Oh, we've gotten Matt's blood sugar and liver enzymes down, but now his triglycerides are spiking. I can't even get worked up over it. I just Google and see that Diabetes is a probably cause, and then I shrug. High carbs and fats are good for ALS but bad for Diabetes. We're back to him picking his poison, but he keeps looking for solutions to symptoms that we can predicted based on that pick.

I should be delighted today. Matt is just finishing up another injection in his hip to kill the pain from arthritis and this afternoon I get to watch my grandson take his first wake boarding lesson. things are good. Why am I sooooo unhappy?

Rhetorical questions, of course, but I knew you'd understand and not tell me to look on the bright side.

Love you all,
Becky
 
I don't think I've really enjoyed anything since Bob's diagnosis. Everything has revolved around giving him the best care possible.
I haven't been upstairs in my house for over a month. Very little cleaning has been done, but I don't care.
I truly miss enjoying my time with my grandchildren.
All because of this beast that is ALS.
Hugs to you!
Joan
 
Becky, some of those are times you're not with Matt, and in some cases doing things he might have done or more actively participated in at some point. And then there's that ticking clock...so it's easy to center on him. And why not?

And obviously you're right not to get worked up over the TGs. Sugars/liver enzymes can affect how he feels, TGs not at all.

I don't think you're unhappy about being unhappy but unhappy that your husband has ALS. What you need to do, you will get done. What you want to do, you should.

Best,
Laurie
 
You've been caring for Matt on an increasing basis for quite some time now Becky. The emotional toll this takes on us should never be underestimated.

I won't try to answer back to thing rhetorical but will just reach out and hold you in a sister-in-pain hug. Don't expect yourself to be anything other than what you are.
 
This makes me sad. I see the same things in my wife. She does not enjoy anything and is on edge since my diagnosis. Before she loved everything and always had fun. I can tell you for sure that your husband wants you to enjoy everything. The last thing we want to do it to bring you down. Please don't allow ALS to define your life.. You define it, you make your choices, and you control how you will react. Please don't let it bring you down, enjoy your life it is all we want.
 
Becky, I think a lot of us feel this way. I find that I have a harder time doing the day to day things and put them off. I stay so busy but hate the normal day to day stuff.

I still work and have friends and family time but find myself not enjoying them. My daughter / son in law just bought a new home, my son/ wife are pregnant and I don't feel the joy I should feel. Life has changed.

You are and have been a rock Becky. Kudos to you. Times of joy are hard to come by...it seems. I think you are doing a wonderful job at staying positive and motivated.
 
Becky, Julien and survived als caregiving. It has been almost 6 months and he stopped in his tracks and said huh, mom I am happy. I cant remember the last time I was happy, it was a long time ago.

As the disease progresses, and more care is needed, I think your body and mind close everything off to make it thru the day and to rise up for the next.

Hugs to all....Steph
 
Pete, As a former caregiver, your life is spent with details and trying to keep up and make sense of it all. I finally decided to focus only on my family. The surroundings would take care of themselves. I allowed 10 minutes each day to clean, got a lawn service, ordered groceries online, etc. That way, the time we had could be spent doing something together.
 
This all ends the same way. Please take care of yourself and try to find a balance to keep everyone comfortable as possible.
 
I agree with Pete - please don't feel guilty for feeling happy. I would gladly sit on the couch for a few days if I knew my wife was doing something she enjoyed. Unfortunately, she's been sucked into this nightmare and is becoming more and more reclusive. I'd love for her to get away, to take a take a trip, to have a well-deserved break. One of the worst things about this disease is seeing how it affects our loved ones. I can't speak for all PALs, but it would make me happy if I knew my wife was having some fun once in a while. Although I also recognize that it's easier said than done.

Thomas
 
Becky, I agree. Motivation is at an all time low sometimes. The kind words from forum friends will make you feel more at ease I hope.
The world has changed for us. I sometime get glimpses of my former self, but if I respond to what others think I should be doing instead of how I feel, it often doesn't go well. We are doing what really matters and that is caring for our loved ones. I hate that ALS has taken so much......
 
I've tried to respond to you all several times, but I either end up being interrupted or I read what I've written and just delete it. Thank you all for the kind words, and especially glimpses into a PALS' perspective.

Matt encourages me to get away, and he's been very tolerant of the folks who fill in so that I can. Sometimes I have to force myself to go. Once I'm actually doing something, I'm ok. It's getting up and getting started that's difficult.

Today is better--I think because we both slept last night!! The doc sent Sinnemet for his tremors, and it seems to have helped him sleep.

There's another ALS bonus--some PALS get Parkinson's along with ALS. Great--shake until you stop. I sure hope it helps as eating is becoming very difficult for him. He uses one hand to stop the shaking in the other when spearing or scooping his food. Fingers crossed.... It works great for my mom, who has Parkinson's, so perhaps it will help here.

So, today we drove 2 hours to look at new vans (the next one will be a Toyota Sienna--I am ready to trade in this Honda)). We took Heidi, who is getting used to riding in the car or Van, and we found a nice resturant with seating outside for lunch. It was a perfect lunch--totally unexpected. So nice.

Tomorrow I am getting away. I'm driving a bit over two hours to see our rental house, which is between tenants, and make some choices about updates, and them I'll see my favorite chiropractor. The man is marvelous and I just know I'll feel better after seeing him.

Aussie--you are so right about trying to respond to what others expect. I'm done with that. It does not work.

Thomas, are you able to be alone, or do you have someone else who can stay with you? Is your wife able to get away? Matt has had to insist a couple of times, practically running me out of the house. What a gift it is to have PALS like the two of you.

Gilwest, I know that I need to focus some on my health. I haven't, and my neuropathy is starting to worry me. LOL...I should probably stop drinking, but I really do like that evening glass of wine or cocktail.

Steph, I have noticed that my focus has narrowed. Unfortunately, every now and then my superman starts fussing about things around the property that he used to take care of. I've told him that I can't do what he did and what I did and what ALS now requires of me. Sadly, I can't. The irony her is that he probably could have. He should be healthy and caring for me. He'd have gotten it all done and then some. I'm so glad that Julien is now enjoying happiness. I admire you so--this disease is robbing me of the opportunity to spend time with my grandchildren (they live hours away), but that's not as hard as dealing with it while raising your own child. You've done such a wonderful job with Julien that I'm sure he'll grown to be a very special man.

Scared (Deb? I have trouble tracking names) I know exactly what you mean. I realize that the lack of joy during joyful times is depression. Our oldest daughter thinks that since I realize it I should just decide not let things bother me. Personally, I think that if I reach a point when nothing bothers me that I'll be in real trouble :)

Peter, I know that you are right, and I try to show him my appreciation for everything he does for me and for the things in our life that do or should bring joy. Thanks to all your sharing here, I know that I need to make the effort to let him see me smile. I'm not sure I always fool him :). Seriously, his smile brings me more joy than anything else in our lives right now. I hope you smile for your wife. She loves you, and like you, all she wants is for you to have some joy and peace.

Tillie, I'll take the hug. Always. Your are our rock. Sister-in-Pain--I've graduated :). I try not to dwell on ALS and just life the life we have, but, well, you know.

Laurie, as always, sound analysis. Don't the triglycerides put him at risk for heart attack? I'm out of my depth here. I just want to keep him mobile when he's not sleeping and OUT of hospitals. I know that his monster will get him at some point--my goal is to prevent as many complications as possible (as much for myself as for him). I had to think a couple of days about the idea of dismissing things that don't make him uncomfortable. I guess I'm still looking longer term. Hope. Yes, it changes, but it just won't go away. Sometimes I wish it would. I'm babbling now, but I wanted you to know that I understand and appreciate what you are saying.

Joan, I seldom make it upstairs either. I now just tell the kids when they visit that they can dust up there if they like. This is a big house and there's a lot of stuff in it. Unfortunately, when I let it get dirty I feel even worse. Matt keeps telling me to hire someone to clean it. I think by the end of the year that I will. I hate bringing anyone else in, but I'm more relaxed when it's clean. The grandkids...we will both need to make up time with them at some point.

Hey, I've written a book. It's been awhile. Withdrawl--another sign of depression. I've got to re-engage... thank you all for being here. I love you all.

Becky
 
Wow Becky! Thanks for the post. We have a Toyota Sienna and we like it. It's not new and the or previous owner had ALS.

I am off for on my own break tomorrow. Going to the upper Peninsula of Michigan to St Ignace and Mackinac Island. Family reunion and a couple of days on the island. Worried about Steve but his brother will take good care of him.
 
You are amazing Becky, and being able to really share here is not something that is always easy. But stepping out and sharing your feelings, fears and concerns is a very healthy thing to do.

This job as CALS is incredibly hard, and yes well I know xxx
 
Becky, how are you doing? I have no advice for getting your drive back--it is like ALS sucks the soul right out of the caregiver just like the PALS. Just remember we are all right here with you. hugs.
 
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