Old 01-17-2015, 08:13 AM #1 (permalink)
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Default need some encouragement

Good morning all,
Yesterday was a weepy day.
I just kept thinking about how much this disease has taken already and it seems that we have only just begun.
I miss going out to dinner with my husband.
I miss holding his hand while sitting together watching TV.
I miss him.
He is still able to walk, but struggles with shortness of breath (we are looking into the bipap now) but he will not leave the house. I ask him to even just go for a drive with me and says no. He says that it takes too much energy. He has not left the house in a month.
I feel like since he is still able to get around, NOW is the time to do things that we want to.. I feel like I should be making memories with him now... maybe my expectations are too high.
Maybe that time is gone too.
He spends his days in his lazy boy with his tablet, tv and beer.
I feel like I have already lost my husband... but he is still there. He just does not want (or is not able to) do anything.
I know that he is depressed, but he will not even talk about taking meds. He does not want to talk about anything.
I am discouraged.
Cheryl
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Old 01-17-2015, 08:55 AM #2 (permalink)
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Default Re: need some encouragement

Cheryl, I feel for you , wish I could give you a big hug, I know all about weepy days. Can you tell him how you are feeling and how much you love him and want to share more specials memories that only he can give you.
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Old 01-17-2015, 09:24 AM #3 (permalink)
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Default Re: need some encouragement

Hi Cheryl
I am really sorry for what is happening.
Some thoughts from someone who is a PALS but has been a CALS too
He likely is depressed and this is part of what is going on. If he is like me the winter cold and short dark days do not help
If he is having respiratory issues that is draining his energy massively. Likely he is not getting good quality sleep either
Push for that bipap!
It is harder to do regular tasks of daily living when you have ALS even without the breathing compromise. Is he spending too much energy getting washed dressed and having breakfast? Is there anything you can do about that?
Are there ways to make some memories at home? Movie afternoon where you cuddle together? Travel videos? Making photo albums memory books for family?
I know this is not what either of you planned and this is so unfair but maybe, bipap, modifying some routines and getting him to interact a bit will at least get him out for a ride eventually
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Old 01-17-2015, 09:37 AM #4 (permalink)
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Default Re: need some encouragement

Nikki,
I so wanted some PALS input as well.
I think you are so right with the fact that his engery is zapped.. and yes he is not sleeping well either.
I am doing most of his washing and dressing but yes, he is exhausted after it is done.
I ask if he wants to watch movies, but ususally he does not.
I guess I need to change my perspective.
But it is so hard dealing with all of the things this disease has already taken from us... and we have only just begun..
Thanks for your hugs and understanding.
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Old 01-17-2015, 12:58 PM #5 (permalink)
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Default Re: need some encouragement

Hello Cheryl,

I just read your post and it felt like I wrote it myself, like you were describing my husband and our life. Mine was also diagnosed in March and our year has also been a complete blur. I %100 understand everything you were saying about wanting to make memories now while he still has the ability to walk around. My husband also very rarely wants to leave the house as it's too difficult to move. His legs are so weak, although he doesn't yet suffer with the breathing difficulties that your husband does. I'm so sorry your family is going through this. I often wonder if my husband is depressed? He will not talk about it with me and also just wants to sit in his recliner with his beer and listen to music. I hope we can find strength and advice in each other.
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Old 01-17-2015, 01:20 PM #6 (permalink)
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Default Re: need some encouragement

Severe exhaustion is a real side effect of ALS for some people. Make sure he talks with his neuro about this. Has he had a sleep study? Does he nap? There are many medications to increase his activity level.

Conservation of energy is critical. We generally go out to dinner two nights a week, and I am very careful not to schedule any other activities those days. I drive my wife on errands because from our condo to the elevator and the elevator to my handicapped parking space is not far (with my cane). I let her go into most stores while I wait in the car. At the library she picks up books I have ordered online. I do a lot of the grocery shopping because our store has good powered carts.

I also have a mobility scooter and in a couple weeks will be going to Disney World with my grandkids--aged 3, 5,and 7. I will not attempt to do 2 days in a row as I know that is impossible. I may even need 2 days rest in between active days. But I know I can do one day a ta ime.

Weather is also an issue. I like to go out on warm or hot days, but if its in the 60's or lower, the cold is uncomfortable and harder on the muscles. When it's in the 80's I sometimes just go out and scooter around the lake in our complex. If I were in Canada, I bet I wouldn't go out nearly as much as I do.

And Nikki is right--a lot of it may be depression. I don't know when he he was diagnosed or how fast his progression is, but depression is something we all have to deal with. Denial-anger-bargaining-depression-acceptance... it's just a step on the road. If I were you, I would consider talking to his neuro about his mental state if he doesn't get past it.
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Old 01-17-2015, 04:01 PM #7 (permalink)
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Default Re: need some encouragement

Megan,
Thank you so much for response. It is so great (if there is such a thing as great in this circumstance) to know that I am not alone with these feelings. I would love to keep in touch with you. Can we send private messages? How? I am new to this..

Dusty7..How awesome that you are going to Disney with your family! That's making memories! I know that the cold certainly bothers my husband and since we live in Canada, it's -20C with the windchill now so no wonder he wants to stay home right?

Thanks guys for your responses! It means alot to me!
Cheryl
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Old 01-17-2015, 05:31 PM #8 (permalink)
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Default Re: need some encouragement

Cheryl and Megan you will be able to do private messages soon, it take a little while of being a member and making a number (number = x, the unknown variable) of posts across different threads.

I can so identify with how down you are feeling at times, and feeling like you have already lost your husband. It's a constant grieving process. Some PALS rally in amazing ways and regain a way to live with all they have every day. Sadly some find this so difficult to do, either because they can't find a way to acceptance or because there is brain involvement as well.
Some also benefit greatly from medications to help them to cope, you may want to look into this? Many of us CALS also find the meds help us to keep our heads above water, I don't know that I could have done half the job looking after Chris without anti depressants!

Either way, as CALS we can come here and unload our feelings and be understood, and find the strength to go back to give our PALS as much as we can.
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Old 01-17-2015, 06:31 PM #9 (permalink)
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Default Re: need some encouragement

Cheryl, I'm so sorry.

I have two practical suggestions. First, see if you can get someone else to encourage him to see a psychiatrist for antidepressants. I don't know if anyone can help him, but maybe someone besides you can be more convincing. My second suggestion is to think about wonderful things you can do together at home: Having close friends over to watch movies or TV series? Playing card, board or video games? Building castles in the sky?

It is painful to see someone we love dying by inches. I'm not sure anything will change that. But maybe you can find creative ways to reintroduce more joy for the near future.
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Old 01-18-2015, 05:12 AM #10 (permalink)
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Default Re: need some encouragement

Cheryl and Megan, I see some wonderful insight and advice in this thread already. It sounds like we need first to find ways to conserve our PALS' strength, and then learn to adjust to our new reality as it comes--enjoy what we have rather than thinking about what we've lost. It's not easy, but it does help. Cheryl, your husband not talking to you at all must be extremely painful. I wish he'd agree to discuss depression. My heart goes out to you. Dusty is right--if your husband won't raise the issue you may need to.

So, what are you doing for yourselves (besides coming here which is very helpful)? I have a friend who keeps asking me that. It really ticks me off sometimes, but I know that she's right. Do you have any help? Are you getting out and doing ANYTHING for yourselves? How about at home? Do you pick the movies every now and then? Do you have any hobbies that you can pursue?

Dusty--Disney World--how wonderful! It sounds like you have a great plan. Enjoy!
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Old 01-18-2015, 08:01 AM #11 (permalink)
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Default Re: need some encouragement

Good morning again.
I love you all for being here and for responding.
I am taking my own anitdepressants (and yes, have thought about slipping them into my husbands coffee in the morning. He is so stubborn about not taking any 'meds' but has no problem drowning that sorrow in a bottle of beer. I will try to get his brother to talk to him about maybe some antidepressants to help.
I think changing my expectations is a a needed thing. as well. I will try to make great memories while in the house him in his eazy lift lazy boy.. I will rememeber every smile, every laugh, every pain in my ass comment he makes that makes me laugh.
I am going to start sewing again. I used to sew and then life happened.. so I think that will be my thing again.
You are so right, Nuts, about having to do things for me.. but it is amazing how guilt works and can affect what we allow ourselves to do.
An incredible lady told me recently 'just be KIND' I had been struggling with his moods and now my new mantra is be kind ( and I tend to be a bit of a feisty girl most times). so this is what I am trying.
Thank you all for being here.
it's invaluable.
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Old 01-18-2015, 01:23 PM #12 (permalink)
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Default Re: need some encouragement

Cheryl,

I too am new to the forum and have no idea how to private message? I guess we just have to wait like Tillie said and eventually we will earn the privilege. If you don't mind my asking, how old are you and your husband? My husband and I seem to be one of the few younger families affected by this.

I was very apprehensive about this whole forum at first and Only joined at the insistence of my therapist. I'm warming up to it now and it has become somewhat of a tool for me throughout the day. I definitely think this community of people who understand what we've gone through and what we're going to go through truly is helping me.
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Old 01-18-2015, 02:21 PM #13 (permalink)
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Default Re: need some encouragement

Cheryl my husband has a different disease than ALS which is CIDP, but is slowly progressive and takes away physical abilities slowly. Over the past 8 years I have learned many things about how people deal with illness. My husband is a good man--one of the best, but he is not good with physical adversity. What I have learned is that how he is now is much like he was when he had the flu or some other minor sickness before being diagnosed i.e. short tempered, easily irritated, withdrawn and somewhat demanding of having things done for him. He seemed to turn into a different person when sick. So I see a lot of that behavior with the CIDP. They do say that ones personality during adversity does surface in these situations and I have found it to be true.
I used to be very "feisty" too LOL and we would get into show downs over his behavior as I would tell him to buck up and appreciate all the things we have now. Those show downs just kept me miserable. I became obsessed with his disease and helping him, and I lost my self and my own interests. Now I am back to trying to take care of myself too, and trying to lose the confrontation and like your friend said "just be kind all of the time". Along route I was able to get my husband to agree to take antidepressants and that does help somewhat with his edginess and black moods. But I think he will always be someone who tends to think that life gave him a bum deal and be angry about it. Yes, life did give him a bum deal but I admire people with the insight not to punish those around them because of it. But being kind all of the time sure keeps things calmer and more pleasant in our household. No amount of pushing worked/works with my husband. So I continue to bring friends in and carry on as normally as I can. I'll be thinking of you and wishing you the best.
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Old 01-18-2015, 05:51 PM #14 (permalink)
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Default Re: need some encouragement

aw Cheryl--I am sorry. weepy days will come and go. you can't change him only yourself so keep giving him the option of doing things and tell him him how you feel. hopefully ya'll can have a real heart to heart talk about what he is going thru. I know that I went thru the same kind of thing with my husband-- he barely ever goes out and we don't do anything together. I just do stuff by myself now--which is like I have already lost him.
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Old 01-18-2015, 06:28 PM #15 (permalink)
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Default Re: need some encouragement

Megan, My husband is 45 and I am 43. So, that feels young (altough my kids may disagree.

Barbie, I get it. I feel like I have aleady lost him as well. What an awful feeling.

Laurel, my hubby can also be 'if it was not for bad luck, I would not have any luck at all' kind of guy. So, I can appreciate what you are saying.

Don't get me wrong, I LOVE him with everything that I have. I will do everything and anything that I can for him. I am just amazed at all this disease has ALREADY taken from us...

I will continue on, one step at a time, being kind.
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