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Prohobo

Member
Joined
Mar 9, 2015
Messages
18
Reason
Loved one DX
Diagnosis
03/2015
Country
US
State
FL
City
Sarasota
As I am new on here and just posted that we found out my mother has ALS (fairly advanced - no longer talking and barely moving) it has certainly changed a lot for me. I have already canceled a business trip this week and cleared my calendar to be with her as we go through this.

However - I have a family vacation planned in July (3 weeks) which my son (10) and wife have been planning for over a year. I called today to find out if we can move the dates or get a refund - but it is not an option as we had to make several payments in advanced because we have hired a private trip which required recruiting guides and others logistics - it's also very expensive.

My mother KNOWS about this trip and is very excited for us and for my son, as we have been talking about it for months (prior to the diagnosis). I know she wants us to go, she too is a big traveler and adventurer - who had gone on a 3 week trip to Greece, while concerned about taking care of her mother (my grandmother). However, my grandmother told her it is a once in a life time trip - there is nothing you can do for me, GO - LIVE YOUR LIFE! My mom went, my grandmother didn't pass - but I can't help but wonder how my mother would have felt if my grandmother did pass when she was away.

The trip my family has planned is not one in which we could return QUICKLY from if something where to happen and during a large chunk of trip we will be out of communication (no cell phones or wi-fi). I have been trying to figure out anything, move dates, refund, even insurance - but so far nothing can be done other than take the financial loss and give up the opportunity.


Truth be told - between my mother and myself (whom we have a great relationship) - I would go, she would encourage me, as she had done the same before. She would feel guilty if I didn't go just to be by her side day and night. She currently kicks me out if I stay to long, because she doesn't want me sitting around all the time just to be by her side. So my issue is not necessarily between my mother and myself, it is with others (sister, other family, friends) - it is them that will cause grief and guilt.

My mixed reservations are because of how others would feel about me going on vacation. Especially if something would happen to her when I was away.

My one very close friend told me already - it is only money, it's only a trip - you can go again - this is YOUR MOTHER. He got very mad at me of even SUGGESTING something. However, perhaps he has a different relationship with his mother.

I reminded him that I had moved 3,000 miles across the country to be close with her and take care of her when she had cancer. And now, that since she has been in skilled nursing - I visit with her daily in the evenings and every weekend (the only family member to do so). Also - that my mother is adamant that she doesn't want me quitting my life because of what has transpired. She doesn't even like long visits or frequent visits from friends - she tells them to send flowers and prefers letters to read (because she can't talk) - she is frustrated when people try to talk with her, because she can't talk back.

Yet my friend was so shocked and mad at me when I even mention the trip - to a point that he couldn't even believe it, as if I hate or have no feelings for my mother or that I am selfish or something.

Perhaps I am in the wrong? :confused:

My relationship and love with my mother won't change if I go or don't - however it may certainly impact my relationship with friends and family.
 
If you were only going for a week I would say Go for it. But, for three weeks? No, way! I went on a cruise for a week after just finding out my mom's cancer was terminal. It was before cell phone use and I had limitted means of contacting the family. I had a horrible trip worrying about her constantly. She didn't pass away while I was on the trip thankfuly. But, the guilt for leaving her was beyond overwhelming. She being the loving mother that she is naturally is going to tell you to go. Very hard decison to make.
 
@skipper,

I should emphasis this is as much for my son (10 years old) who is training for this trip as it is for the family. Ironically he is suppose to come up with fund raising effort for awareness of a charity for his trip - he had initially choose animal adoption, however with the current situation with my mother (his grandma) he wants to make it an ALS cause.

If this was a cruise or any other normal vacation - it would be easy to cancel - no big deal. However, since we have hired guides, training, and gear - this is a little more than just a vacation. Perhaps I should have been more clear about it.

Additionally it is not a trip like a cruise or something where I can just change the dates or ask for a refund. This is more an adventure (once in a life-time) rather than just a vacation.
 
It sounds like there is nothing you can do about it now. You will not save money if you cancel today or just do not show up? Hard as it is, I would put it aside for now. July is 4 months away. Things may look different then. If she gets a feeding tube and bipap maybe she will be stable. Or( sorry to say this) she may be gone. I was in a similar situation when my mom was endstage except all the family on this continent was going. As it turned out she died ( with only a few days warning that this was it) a couple of months before the trip.
 
@Nikki -

Can I get over the cost (not refundable or change the date) - sure, it hurts - but I can manage. We have been saving for a long time and planning this with our son, who is also training for the trip. My mother, who I am close with - loves the trip and excited for us. We had talked about it frequently.

When I was young my mother dragged us all over the world. She was a foreign exchange teacher. She took us to China, Russia, Japan, dozens of more countries. When my mother had cancer (10 years ago) I moved back to be close with her - to take care of her and her mother (grandmother). My mother had been taking care of grandma prior to getting cancer. When she survived cancer, I told her ANY WHERE she wanted to go I would make it happen. At the time she was taking care of her mother (grandma) who was very ill at the time. She wanted desperately to go back to Greece, but was conflictive about her own mother's health - which she was at her bedside every day. I told my mom that I would be with Grandma and that she should go - her mother also said go and don't worry about her. My mother went and fortunately grandma didn't pass.

Travel/Adventure Bug is in our blood.
 
I meant don't try to decide now when I said put it aside not don't go.
 
I think the family that you are afraid of judging you should be prepared to step up and help. If they were to give you respite care, they could take 1 week shifts, they would appreciate a little more all that you and your family is doing and you could enjoy your family vacation. The need for a break, a vacation, just down time with just you and your wife and son isn't going to go away. Now is a great time to think about that and line up resources.

p.s. If you are not taking good care of yourself, you will be in no shape to take care of your mom.
 
I hope I didn't come up off as criticizing you one way or another on your decision. It is a very difficult decision for you to make. I was just stating that I didn't enjoy my trip at all because of worrying about your mother. I hate to echo what Nikki says about maybe your mother not even being around in July. We just don't know with this damn disease. Maybe, you should just plan on going as of now since you can't get a refund anyway and in the meantime try to line up family, friends, and staff to cover while you are gone. Your family nor anybody else has any right whatsoever to judge you on this. I can tell by every one of your posts how much you love your mother and value your family. That is something to be proud of .
 
Hi and welcome, I haven't answered one of your posts before (check the pub).

I think Nikki is making the only statement possible - the trip is not until July, no one can predict now how your mother will be then, so plan like it may happen but know you can't make the decision until it is nearly the date to leave.

If you decided to stay back, could you find someone who could go in your place so your son can still plan knowing it is definite for him? That would give you a positive kind of plan B at least?
 
I don't think you should make or change your plans on what others think of you--that is BS! you just don't know what condition your mom will be in in 4 months, and if she wants you to go, then go! where ever you are going, if she were to take a turn for the worst you could always fly home.
 
If your mother thinks you should go, go ahead. Our kids have gone on two week trips abroad after their dad was diagnosed. We are glad they did. They are planning another trip in May. We, my husband and I, tell them we are living vicariously these days :)
 
Do NOT change your plans based on what others think. Your mom is the only one who matters. The rest need to step up and fill in, not criticize you.
 
I completely agree with Nuts. You have done and are doing so much for your mom. This disease is very unpredictable. she could be doing badly for a while and then be stable for some time. You never know what will happen until July. My take in it is: you plan to go and be prepared that it may change the last minute. As far as the others are concerned, tell them to step up.
 
>Truth be told - between my mother and myself (whom we have a great relationship) - I would go, she would encourage me, as she had done the same before.

imo you should go w/ no guilt. include her in your adventuress!
 
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