Old 01-21-2015, 05:59 PM #1 (permalink)
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Default What would YOU do?

Hello, my friends.

I would love insight, opinions and suggestions.
Last June, before my husband was diagnosed with ALS, my parents decided they wanted to take the the whole family on a cruise. 22 people in all, kids, grandkids and all. My husband was not planning on going with us as he didn't have enough holidays to do his fishing tournaments as we as the cruise and fishing was his life!
Fast forward a few months and we have ALS. We have tried to convince him to come, but he will have none of it!
SO.. I have 2 boys (15 and 12) who are so excited about their first cruise with all of their aunts, uncles and cousins.
Now, I have 8 weeks to decide if I am going to go on the cruise. My husband is still able to walk (both his arms are affected and his breathing and swallowing are starting to be affected now). His brother has said he will move in while we are gone, I can get workers in to help with the showering and dressing.
BUT my guilt is leaving him. If anything happened to him while I was on the cruise, I don't think I would ever be able to forgive myself. Hubby says go, others have of course given their opinion of 'why would you even think of going?'
When I think of my boys, I 100% want to go with them as I think they need to the break with their momma.
When I think of my husband I 100% do not want to go.
I wish I could clone my self and be in both places.
I have asked my ex husband (the boys dad) if he would take my place if that needs to happen, as I do not want my boys to miss out....
I am just so torn.
Thanks guys for the listening ear and the experienced ideas and opinions.
Cheryl
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Old 01-21-2015, 06:48 PM #2 (permalink)
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Default Re: What would YOU do?

Does he have any friends who could cover for you in your absence. If so I'd say go. My wife is having a really tough time with all this, a trip away might be just the thing, getting away for a week. As far as the guilt goes I always found it to be alcohol soluable, I understand they have it on some cruises too........
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Old 01-21-2015, 07:27 PM #3 (permalink)
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Default Re: What would YOU do?

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Originally Posted by Vincent View Post
As far as the guilt goes I always found it to be alcohol soluable, I understand they have it on some cruises too........
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Vincent, I may have to borrow that line...

Cheryl, I understand you guilt--absolutely. I had an opportunity to make a trip that under normal circumstances I'd have jumped at. Hubby insisted that I go, and I'm glad I did. At that time, I didn't want to spend a day away from him, but I realize that since we're in this for the long haul, I need to do me things when I can. It's not easy, but it's important. If he really doesn't want to go and his brother is willing to stay with him, take your children and make good memories. As for worrying that something might happen when you are gone--you can't be with the kids and your husband at the same time, and they deserve the trip also. Go, enjoy, and give your husband some quality time with his brother.

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Old 01-21-2015, 07:51 PM #4 (permalink)
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Default Re: What would YOU do?

Cheryl,

I have to agree with Becky. And since the heading of your thread was 'what would YOU do ' I really tried to put myself in your shoes.....

If your husband is anything like mine, he is probably harboring a lot of guilt for having ALS in the first place. My husband hates to see me cry when he falls or has any other difficulties with this disease. I know he would be so upset if I didn't go on a trip with our kids because I was too afraid to leave him.

I think if his brother is willing to stay with him, you should go and try to enjoy it with your boys. Try and look at it from a different perspective....not leaving your disabled husband behind, but allowing two brothers to have a 'stay-cation' without any outside interruptions. Just two brothers kicking back!

Best of luck with your decision,

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Old 01-21-2015, 07:57 PM #5 (permalink)
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Default Re: What would YOU do?

I would go. The boys will have a good time at home with each other and you and your kids will get a much needed break.
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Old 01-21-2015, 08:53 PM #6 (permalink)
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Default Re: What would YOU do?

Go! Frankly, I think your husband is making a mistake by not going. But take your boys and enjoy family. Sounds like he will be in good hands.
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Old 01-22-2015, 01:12 AM #7 (permalink)
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Default Re: What would YOU do?

Oh how perfect - alcohol soluble guilt and lots of it on a cruise! Love the attitude Vincent, I'll drink to that!

Now smooch, firstly I will say that my Chris was very demanding and wanted me to be his sole carer. I did have home help that increased as he progressed, but he hated anyone but me doing anything for him. He also felt that I would be free to have 'all the fun' I wanted once he was gone so I should suck it up and just look after him.

So, your husband is wanting you to take this time away, and his brother can look after him! I truly understand that feeling of guilt, but I say without reservation to GO.

You don't know how long you may be caring for him and how run down you may become if you don't get used to taking respite, for you and the kids from right now. A day may come where your only option for respite is to put him into care for you to have a break. Right now, he can have other family look after him. That is special really!

As others have said, this could be a great opportunity for his brother to learn a lot by being a carer for a little while, and could give you a valuable respite carer to fall back on as things progress. It could also give your husband time to reflect on his need for caring and accept that others can help care for him. Many times family members are too scared to care for our PALS because they don't feel competent. So if family members can help a bit from early, then they learn as your PALS progresses. This is far better than not asking for help until they are a very high care needs situation and this is when family often feel freaked out to be left alone to do tasks.

This is really important for sustainability of the caring role. You cannot be everything to him every minute of every day.

Try to change your thinking on this to becoming a situation where everybody wins, and it may ease your guilt considerably (remember to have a drink whilst doing this thinking!)
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Old 01-22-2015, 07:34 AM #8 (permalink)
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Default Re: What would YOU do?

You need to go and have a good time.
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Old 01-22-2015, 07:44 AM #9 (permalink)
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Default Re: What would YOU do?

Cheryl, the truth is, you are in this for the long haul. You MUST have some respite or you will burn out. We all like to think only we can take good care of our hubby- but the reality is others are very capable, especially a loving brother.
I understand the guilt but- think of this as an opportunity for brothers to have a special time that may never happen again. And what a great message to send to your boys that despite all the time spent focusing on hubby, they are just as important. Don't add to your husband's guilt over changing everyone's lives. Go and come back renewed and ready to tackle the challenges ahead.
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Old 01-22-2015, 12:06 PM #10 (permalink)
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Default Re: What would YOU do?

>My husband is still able to walk (both his arms are affected and his breathing and swallowing are starting to be affected now).

I would encourage him to go ... we did an 8-day cruise Christmas 2013 and I was in the same shapem , maybe a bit worse, and still no problems. Sandy had fun going off ship and I had time to watch movies on laptop ... he won't regret it!



Max - Thursday, January 22, 2015 12:06:41 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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Old 01-25-2015, 05:53 PM #11 (permalink)
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Default Re: What would YOU do?

I think you should definitely go on this trip. You need to take this break why you can. If it was 6 months from now I'd definitely say No! Don't go. But, I think in this time frame you can get it in before he gets even worse. There isn't much guarantee though with this disease. This is a chance of a lifetime to develop memories with your family. You can't turn that down now. You need this for yourself and the boys. Your husband will have a nice chance to spend sometime with his brother which will be good for both of them. Take out trip insurance in case you have to cancel at the last minute.
But, I also caution you to make sure you can do this trip without guilt or worry. We found out my mom had terminal cancer a week before my husband and I were due to take a cruise. I was going to cancel but she absolutely threw a fit and would not let me. We went and though I worried I managed to have a good time knowing she was wanting me too. I took tons of pictures and nothing happened to her while we were gone. She loved hearing all about my trip and she didn't have the guilt of feeling she kept me from a once of a lifetime trip.
Rather or not your husband should attempt also to go on this trip. I'm torn on what my opinion is on that. I would let that be his decision. Kim
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Old 01-26-2015, 05:13 PM #12 (permalink)
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Default Re: What would YOU do?

I'll join the chorus of voices: Go! And maybe this'll be your husband's last chance to really hang out as one of the guys. Maybe they'll have some guys over to drink beer, play cards and smoke cigars. Let them eat pizza and leave the house a mess. OK, I'm being stereotypical here. But the point is, maybe in a way it's a break for your husband, too.
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Old 01-26-2015, 05:42 PM #13 (permalink)
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Default Re: What would YOU do?

I agree with everyone on both counts. It's an opportunity for your husband and his brother to deepen their bond, and for the rest of your family, esp. your boys, to reconnect.

I would just be sure that your husband understands that he would be welcome, able to participate in a lot of ways (my husband traveled under similar conditions) and that it probably is his last chance at bat in that way. But if he'd rather ride the bench with a treasured teammate instead of braving the motley crew, leave them to it. I would also create a mini-PHR in MedicAlert or just a summary document and leave a copy in your brother's wallet, car, on the frig at home, etc. Make sure your brother knows the way to your ER, food do's and don'ts, etc.

And then go and enjoy.
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Old 01-26-2015, 06:19 PM #14 (permalink)
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Default Re: What would YOU do?

Hi Cheryl, I'm afraid I have to agree with those saying go. Is there internet on the boat? could you do some skyping while onboard? See what the bros are doing while they see you all enjoying sea air? I would go, especially since you can arrange for the care he needs.
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Old 01-27-2015, 05:28 AM #15 (permalink)
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Default Re: What would YOU do?

Seems like it would be a great memory for your kids if he went. Being away from the run of the mill, day to day operations of home can create some very special moments. It also sounds like he is putting you and the kids first in terms of feeling comfortable about you going without him. My sister in laws ex husband passed away from ALS when they're kids were in their mid-teens. They had some tough times after he died. One of the things that has helped them is the memories they have of doing things with him.
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