Advice for mother who is now a hospice patient

[Katya4]

My mom and I, along with several of our friends and family planned a cruise for September 30th. Even though she was battling ovarian cancer at the time....she felt fairly well and wanted to go. We had planned on getting a wheelchair to help her and got a handi-cap accessible room for mobility reasons.

 

Since then she has gone down hill and is no longer on chemo-comfort measures now and started with hospice. Her doctor told her she would not be here at Christmas and should cancel her cruise as she will not enjoy it. The hospice nurse said that it was an atainable goal and that she should work towards going.

 

I believe she wants to go. She will spend most of her day in bed...getting up for a meal or two and she told me she would like to spend maybe an hour a day walking (in the wheelchair) around in town (we are going to Bermuda for the week). We are traveling with family and friends who are very hands on, "take charge" sort of people. I am her care-giver and will be there as well. We have a wheelchair and plan on bringing walkie talkies to communicate with her if she is in the room alone. The group is planning on setting up a half hour schedule to check on her and share time being available to help her around the clock.

 

She is weak but enjoyes company, a little bit of food and would be resting in her chair on deck or in bed most of the day. She would enjoy a small walk (in her chair)-get some fresh air and sunshine and see a bit of Hamilton each day.

 

The cruise is 34 days away. Do you think it is unreasonable to set this goal? Perhaps the doctor is thinking of all the types of typical activities a person does on a cruise and that my mom would not enjoy it. She realizes that she would not be running around with everyone and feels that being on the cruise with this upbeat group would be better than sitting at home waiting to die. Any advise? Should we go?

[katisdale]

In my experience with dying parents, I think you should continue to plan to go on this cruise. If she deteriorates more and expresses a desire to not go then that would be your guide. Over the years I have found the hospice personnel to be the best guide for the process rather than the family MD who is much more focused on cure rather than care. Good luck and I hope you have a wonderful cruise.

[Queenie2]

yes, I think hospice workers are angels and I think MDs have a different slant, but I have to say that 34 days in your situation is a long time. And I speak from experience. A lot can change. Heck a lot changes daily.

 

If she will be able to cruise I think that pain control would be a huge issue by that time, and if she will be able to do that aboard a cruise ship. Her pain will inrease and in hospice they can up the meds to make her comfortable, but it may not be that comfortable aboard the ship.

 

Plus you know, just having fun folks around her at home may be good for her. Again I speak from recent experience. It all happens so fast.

 

I think it's great that they are thinking positively, but I ndon't think you should plan for it.

 

Candy

[Umbarger]

The thing I think of is if an emergency happens on the cruise while at sea or even while in Bermuda. The ship has a doctor but what if she needs to be air lifted off the ship or needs medical attention in Bermuda. This is very expensive. Do you have insurance to cover the possible medical and transportation costs that a emergency would incur? Insurance has all sorts of pre-existing conditions.

 

I am so sorry to hear of this sad situation. My hope is that she is able to cruise and has a wonderful time with her family. Best of luck and please drop back in and give us an update.

 

Linda

[Moeve]

That is a really difficult one to call.... however if you have those bases like insurance covered and the hospice staff (they are the ones who deal with this sort of thing everyday) think at least for now you should try to go then I would consider it.... but as someone has already mentioned 30 odd days can be a really looong time at this stage. I would hear what the hospice staff says when you get even closer.......It might just be the carrot she needs to hang in a little longer.

[Kerry's Girls]

My husband and I cruised six weeks before he lost his battle with melanoma. We were told by everyone, including hospice, not to go, but I knew from our life of cruising that we would be well cared for. With a wheelchair and all his meds, it was a wonderful trip and the sea brought us a lot of peace. The dining room staff was great about making trays for him for the room when he wasn't up to getting out for meals.

 

As previous posters have wisely said, there is no way to know how things will be in 30 days - sometimes it's very quick, and sometimes, as in our case, people linger much longer than expected. If I were you I would plan to go, and see how she's doing as you approach the sailing. Just know that it is possible if she is at all feeling up to it.

 

You and your family have all of my best wishes.

 

- Mia

[Quampapetet]

I would want a last vacation - wouldn't you? I hope she makes it to the cruise, if that is what will make her happy!

[Katya4]

Thanks for the advise. You know I was not sure if it is what I wanted for her or what she wanted to do. But when I see her with everyone and how much she loves it. I really think if she is in the condition she is in now at the end of September then she can do it. If not...then we won't go. You are all right-it depends on the hospice nurse and my mom and what she wants to do.

[Katya4]

Thanks for the advise. You know I was not sure if it is what I wanted for her or what she wanted to do. But when I see her with everyone and how much she loves it. I really think if she is in the condition she is in now at the end of September then she can do it. If not...then we won't go. You are all right-it depends on the hospice nurse and my mom and what she wants to do.

[PennyAgain]

but it will also depend on the cruise line allowing your mother to board the ship. We are going through this now with a sister who booked a cruise entirely on her own without asking advice or doing any research.

 

She purchased travel insurance but the medical evacuation coverage doesn't work unless she is hospitalized when the request for that service is made.

 

We are all very concerned that she might be denied boarding when she gets to the ship as she is obviously unwell. She plans to travel with her husband. She has a 5 hour flight to get to the departure city which she scheduled on the very day the cruise departs. No time to rest up.

 

Of course, in this case, the airline could refuse to allow her to fly as well, but her husband agrees that he won't argue if that happens as it will be for the best.

 

I wish you the best possible family experiences under the circumstances. I just wish you to be aware that booking a cruise is not the same as being allowed to take it. We have tried to talk to our sister, but she has her mind made up. We don't want her to be embarrassed or disappointed.

[dd's mom]

Katya4,

You brought back memories of last year for me & my family. I couldn't help but shed a few tears as I read your post and everyone's replies. My Mom passed away last year on Labor Day, Sept 4, while under Hospice Care. (I LOVE Hospice care by the way! They are so helpful and intuitive.) We were in a facility for about 6 weeks and others had been there for months. You can not always guess the timing of these things.

 

If your Mom desires to go... then by all means, TRY TO GO, if at all possible. If she passes away while on the cruise, then know she died doing exactly what she wanted to do. My Mom held on much longer than expected. I think patients have the ability to postpone the inevitable if there's something they really want to do first, which your Mom does at this point. She may change her mind, and if she does, then change your plans. You may be making the memory of a lifetime and I would not want you to give that up because of a doctor's advice.

 

Good luck to you, bless you and remember,.. you need this trip probably as much as she does. What cherished memories you will have of this trip together. No cooking, cleaning, working, chores, stressing, telephone interruptions ... just enjoying precious time together. Enjoy what time you have left to the fullest.

 

Best Wishes,

dd's mom (Wynette)

[Kudos2Fly]

If this is her last wish, then give it to her.

 

But do check with the cruise line 1st. Like one poster said the cruise line could not let her own board. You may have to get a Dr's note or something like that saying she can sail. You would hate to get her hopes up then at the last minute they will not let her on board.

 

But I hope everything works out for your mother..

[Amlee]

I am so sorry you and your family is going through this! You all are in my thoughts. If she feels like going and is up for it, Please Take Her!

 

Reading your post, I didn't notice how the cabin set up is. But one thing I would think about, is seeing about one of the hospice nurses going with your mother. Take her as a companion to your mother. That should give you and your family some peace of mind and your mother wouldn't be alone in her cabin.

 

I would also tell you to contact the cruise line with such questions as will your mother be able to cruise in her state of health? Out what point would she be denied boarding? What is the procedure if she was to pass while on the cruise? Many MANY cruise lines work closely with Make A Wish and such, so they are prepared for these type things.

[Katya4]

I can't say enough about how helpful and tender your replys have been. We decided to not do the cruise. My mother is sliding downward and now is having trouble piviting from chair to bed and she feels that she would rather stay home because she is more comfortable at home. She asked me to take the cruise and immediatly reschedule it with a friend going in her place. Then another person in our party had to cancel due to an illness of his mother so we are going to go in May. Things always work out for the best and my mom said that she has plenty of memories from the cruises we took when she could ambulate and felt better so she does not feel bad about missing this one. I feel bad for her but she said not to that she is doing what she wants to do. But I appreciate your advise-I knew I was not the only one going through this. Thank you very much!

[Quampapetet]

Sounds like you and your mother made the right decision. Yeah, health can fall so rapidly - it is hard to plan things like this sometimes.

 

I hope you get to spend some quality time with your mother, even though it isn't on a cruise!

[Splinter]

So sorry about your mom.

 

Perhaps you could do some special "Cruise Day" for her at home? What are her best memories of cruising? Perhaps have a catered dinner with her favorite foods and dress up (if that is what she likes) or serve her some tropical juice drinks with little umbrellas and wear tropical dress for the day, and review your photos of previous cruises together. I am sure you could think of something that would help her remember the special times she had hoped to recreate on the cruise. It would be meaningful for all of you.

[lynn247]

Katya4,

I am so sorry. Your post touched my heart, because of my mother. Doctor told me she had 2 - 3 months, hospice nurse told me she had days. I believed the doctor. She died 5 days later. I wasn't there.

 

And Yes, those hospice nurses are the BEST:D God gave them a special talent. The way they care for the family as well as the patient.

 

My best friend and I along with our DHs booked the Carnival Miracle for this December. Four months after booking, she was diagnosed with cancer. She spoke to her oncologist about the trip and he told her "We'll make it happen." There are days that she feels she won't be able to make it. But when she is feeling OK, she is determined to go. As long as her tumors are still shrinking, she will still be on chemo, and that one chemo will be given to her AFTER we come home. All those meds that she takes to build herself up will be given the week before we go. So we are hoping that the week we cruise will be a Good one. She goes tomorrow for her cat scan before the start of her next round of chemo. We are praying for the best.

We plan on getting a wheelchair, and doing what ever it takes to have her enjoy this trip, and not to tire her out too much.

 

I'll keep your mom in my prayers also.

[Katya4]

Update: My mom declined and ended up dying September 25th-she never made the cruise. We canceled the September 30th cruise.

 

But she insisted we reschedule the trip in June of next year and offered to pay for all her children to go on this cruise- in memory of her. While it made me sick to my stomach to plan this knowing she would not make it-It made her giggle with delight to know that I had booked it for June 22nd and that she would be giving us all so much pleasure.

 

As it turned out many of our friends and family booked also and many more are maybe planning on joining us. She would have loved being there but is a much better place in heaven.

 

I realize now that her being the patient knew best if she could enjoy the trip or not. I was thinking of how me-the caregiver was able to do and willing to do, but not of how she-the patient would have to endure.

 

When you are getting ready to die your priorities are different than those who are just sick. She was not someone who had cancer as she had been in the past cruises but was at that point where she was facing death and decline to the point where she desired comfort more than fun.

 

Some people can tolerate it some can not....it is always best to listen to the patient.....what do they really want-you can offer your services and let them know it is a privledge to help them enjoy the trip, but it must, in the end, be their call.

 

We have knowledge that there were cruises in the past that she thoroughly enjoyed and we made the remaining time full of visits, picnics and alot of laughter. And we can go in June on another cruise knowing that she is so pleased that we are excited and happy....she will be with us in spirit.....sitting there on the ship smiling with her fancy drinks and enjoying the deserts, good company and sunshine.

[Katya4]

Update: My mom declined....and ended up dying September 25th-she never made the cruise. We canceled the September 30th cruise a few weeks before she died.

 

But.....she insisted we reschedule the trip in June of next year and offered to pay for all her children to go on this cruise-in memory of her. So there I was at the computer planning a trip as she lay dying and it made me sick to my stomach to plan this knowing she would not make it to join us-But it made her giggle with delight to know that she would be giving us all so much pleasure and insisted I book it and pay for it now before she went. She enjoyed calling her grandchildren and my sibblings at work and telling them of her gift to us. She said she was more excited for us than she ever was for her self before going on a cruise.

 

As it turned out many of our friends and family booked this cruise in June also and a few more are planning on perhaps joining us. She would have loved going on this cruise-but she is in a much better place-in heaven.

 

I realize now that when she decided that she could not or would not go on the September 30th cruise-that she knew best if she could enjoy the trip or not. I was caught up thinking about myself-the caregiver-and what I was able to do-or willing to do to make her trip possible instead of focusing on what she really wanted to do. I really did not understand that it was not a matter of making accomidations for her as if she had broken a leg or something. That she was going through a process of dying and that enduring that was a whole different matter. It was not selfishness on my behalf but rather ignorance.

 

When you are getting ready to die-your priorities are different than those who are just sick. She was not someone who merely had an illness (cancer) and had put up with the side effects as she had on previous cruises when her quality of life was still good. But she was a person who was in the act of dying and facing death. She was at a point where she desired comfort more than fun. I think that I failed to see this.

 

The Hopsice nurse told me that if my mom could go, and wanted to go, that she would help us to accomidate that goal. But that my mother had to desire it. If she chose not to go-that we had to listen to her needs and understand that we are no longer on the same page. That the dying have a whole different set of prioities. We had to listen to the patient and in the end it was her call.

 

Once I saw this clearly it was easy to do what my mom wanted....I no longer felt bad about the cruise and what she was missing out on because something much bigger was happening and we were traveling that trip together. I was fortunate to take care of my mom to her dying day and I was with her to the end.

 

Instead of hoping my mom would hang in there until she could go on a cruise, I enjoyed an evening of watching TV together, eating ice pops and laughing about some wonderfully funny memory we both had. Acceptance of not going to Bermuda and facing the end with her gave me peace and made it all okay....You see her going on one last cruise had been my goal for her in the dying process. I was not ready to let her go until my goals where achieved and letting go of this helped me to enjoy sharing her last days together.

 

Mom tolerated a big family picnic at our house....We sat her up and she helped us cook and prepare for it by chopping onions and directing us in the kitchen (her usual place) She had a ball at this picnic and got to say goodbye to all her friends. When she got tired she was near her bed....and those things familier and comfortable to her. Over the next couple weeks she enjoyed many visits from friends, the company of family and hours of talking and watching TV together. This was what she wanted to do instead of sleeping thousand miles away, in a cabin while docked in Bermuda.

 

And now.....we have June to look forward to.....And somehow I think she will be with us on this trip.....She will be sitting there in the sun enjoying her fancy blue drinks, sampling the deserts, enjoying the company and shopping for earings in Hamilton with us. And I will smile and feel good that we made the best decision to miss our September 30th cruise-and instead to spend her last days in our home.....with her in her own bed.....surrounded by everyone and everything she loved.

 

God Bless Hospice Workers! I am praying for you folks and that your trips are the best! That your loved ones enjoy the trip and that you create some wonderful memories as my mom and I did on our previous cruises!

[Valentine's Mom]

God bless you Katya4 and god bless your mom too. I have had to say goodby to my father and as my mother declines in health I hope that I can give help her acheive the wishes she can and especially that final wish that is so improtant but also so hard for us.

 

Go on your cruise in June and have the times of your lives and maybe stop mid party or laugh and say a toast or prayer for mom whom I know will be on board with you laughing and helping you to have the time of your life.

 

God bless,

Barbara

[Quampapetet]

Sorry to hear about your mom. :( That is really neat, though, that she is helping everybody go on the cruise and that even more ppl are going/wanting to go! (BTW - if you get enough cabins, book the trip as a group and you'll get some group perks, possibly even free passage for someone/some ppl [depending on how many are going]!)