Mistakes I made with First Time Wheelchair

[Brockwest]

I had a bright idea. My wife was on chemo and dying and felt bad we had never done our Alaskan cruise, so I cashed in part of my retirement funds and did an Alaskan cruise with her, bring along her wheelchair. After all, I figured a bed is a bed.

The BEST thing I did was do the pre-cruise San Fransico Ritz-Carlton with their Dream Bed and room service.

Basically, everything else I did wrong...wish I had checked here first.

1) Request a wheel-chair room! They have bigger doors and wheelchair bathrooms and baths...VITAL. We ended up leaving our wheelchair in the hall and having her walk painfully to bed and bathroom.

2) Request a table near the dining room entrance. We had her park the wheelchair at the entrance and painfully walk to the other end of the dining room

3) I DON'T KNOW.....but I WONDER......DO....WILL....the crew help you push the wheelchair up and down the Port ramps? Nobody ever volunteered and sometimes my nose literally was touching the ramp as I pushed her up. MAYBE.....leave her at the bottom, go up and ask for assistance? I don't know if the answer will be "sure" or "no, we are assigned to the x-ray machine.)

4) Small ports have cobblestone or unpaved streets and no curb cuts...that Hurts a patient in pain.

5) Think LOGICALLY.....take excursions that require ZERO effort and Zero bumping on the patient.

6) Take cabs, even for short distances

7) Be aware, the gentle, wonderful rumbling, rocking on a ship bed we all love may be torture to someone in cancer pain. Who knew?

8) Sadly, consider room service set-up for all three meals...the pain of dressing in a small room is overwhelming.

9) I find it vital for my own mental stress to settle her down and with permission go to a one hour show or dance or anything.

10) Be aware, cold is painful, even if a spectacular glacier is only 100 yards away.

11) Be aware, it's torture to go over the thresholds through doors...try to navigate a way to minimize doors.

12) Wonderful cuisine is meaningless to someon on Morphine. Find something bland early on....even if it means jello daily.

13) IMPORTANTLY, get a doctor's statement that the patient may NOT stand even briefly for the airport. If hassled at the airport, ask for a manager, supervisor, airport director if needed. They made my wife stand as I completely disassembled the wheelchair. At security they made her stand on one-leg against my protests and she collapsed as her hip crumbled to dust. BE NICE to EVERYONE who says no or asks ridiculous requests...if not nice, they can flag your chart and you will be DOUBLE-checked at every station (Security and Plane, both ways.)

14) Decide....is the final gesture loving or futile? Don't rely on Hollywood versions of terminality...it's not a simple scarf on the head and pale lips. It's....bad. I don't regret the love involved in spending my retirement taking her....I do regret the non-understanding of how much effort would be require even with the wheelchair and bed.

[uppitycats]

I'm so very sorry to learn about your wife.

 

All of your lessons learned are very important. Thanks for writing them down. I know that had to be very painful for you. Lots of first-time users of wheelchairs, or the people they love, need to read your post.

 

Generally a ship's crew will not assist with anything but boarding the ship for the first time, and getting off the ship. Sometimes...rarely..they'll help with getting on/off in ports, if asked.

 

I use a wheelchair, and while I'm always asked at the airport if I can stand, and/or walk through the security portal, I always say "no", remain firmly in my seat, and they then will deal with it. I've not had to take apart my wheelchair, but I have been thoroughly patted down, and they've crawled under my chair to check the seat and all.

 

As for meals in the dining room -- indeed, they can re-arrange your seating if you don't want or can't leave your wheelchair. Generally though I head to the dining room before mealtimes and ask. Once it's arranged, the table remains reserved for you (even on those lines that won't otherwise reserve tables). I always get a table near the door, or with a direct line to the exit.

 

You did a very brave and loving thing to even attempt this trip with your wife. Take care.

[xxoocruiser]

It's not that you did things wrong. Rather you just didn't know and ventured into unknown territory. We all think everything is easier than it turns out to be. It's nice that you have passed on these tips.

 

You should never regret taking the cruise to Alaska. Your darling wife , as bad as she may have felt, truly understood the love and compassion you showed in making her dream come true. That's a beautiful gift to give anyone regardless of the circumstances.

 

As a person with MS and a Breast Cancer survivor ( almost 3 years) , I truly cherish any trip regardless of the trouble/problems that may arise and believe your wife did as well. She was one very loved lady . She was blessed to have you in her life .

[prarie cruiser]

The love you two have had for each other must be very deep, as you made significant sacrifices to try to do something for your wife that was special and she obviously made many sacrifices to share the event with you.

 

I am sorry for the issues you had, but I am sure many will be grateful for the observations you made and the problems you have shared. Thank you for caring to help others.

 

May you focus on the smiles you shared together.

[spanner14]

Well, there's no manual for life....we learn as we go. I wouldn't say that you did *anything* wrong.

 

I'm so sorry about your wife. Thanks so much for sharing these tips, and take care. x

[sea-gypsy]

Thank you for the information. I will be traveling with a wheelchair bound individual on my next cruise and have been concerned about what we may encounter.

 

While you may have experienced numberous setbacks on your cruise know that your wife truly appreciated the time spent together. She was lucky to have someone special in her life to help her through the difficult moments.

[cusyl]

I am so sorry about your wife. I know exactly what you are going through, as I lost my husband of 52 years to cancer in December. We can only do what we can to make life as easy as possible for them while they are suffering. I'm sure the trip brought some happy moments, however small to her painful existence and the time spent together with you while she is waiting to be called home.

[Lady_Jag]

Thank you for posting this. It touched me, and I was moved to tears. I'm sure your wife appeciated the effort you made even more. Bless you both.

[Cathalain]

I will be traveling with my mother who's in a WC - this is our first cruise. I wanted to say thank you for sharing your tips with us. I hope that you and your wife had a wonderful time on your cruise. :)

 

Blessings.

[rjm1cc]

Thanks for posting. I am sure it will help many.

[GRBlizz]

We are three years into the "wheelchair" thing, and you're so right - there is so much to learn. I'm so sorry for the circumstances in which you found yourselves, and I'm sure you got through it together with love and patience.

 

I know that we have gained immeasurably form the advice we have gotten on this board, and I wish that every person who travels with a beloved companion in a wheelchair would find their way to this site.

 

Our prayers are with you in this rough time.

[Denise&Paul STL]

I am so very sorry for your hard-learned lessons. The information would have been very helpful to us last week, but most certainly will be in the future. Thank you so much for posting all that invaluable information.

[harryb50]

My husband and I went on a cruise when I was in the middle of chemotherapy for breast cancer five years ago. One thing about having cancer is that it puts everything in perspective. I had to use a wheelchair for the first time. I realize now how lucky we were because wheelchair obstacles never even crossed our minds. I decided I wanted to do things I had been putting off for years. The last time we had been on a cruise was in 1974. I chose a Carnival cruise to Ochoa Rios, Jamaica and Nassau. Wheelchair obstacles never even crossed our minds. We were lucky the ports I chose were wheelchair friendly five years ago. At each curb they had curbs cutouts ready for wheelchairs. Someone just happened to tell me to request a wheelchair when purchasing our airline tickets and I did and it was ready for me when we got to the airport. I also requested a wheelchair on the ship and five years ago they were available for a passenger’s use. Everybody we came in contact with could not have been more helpful.

It turned out to be one of our best vacations. I got my taste buds back the week before the cruise so I ate like a pig and gained some weight; my pregnant daughter in law was sick the whole week of the cruise and couldn’t eat anything. I kept telling her I was eating for three. :o

[Harleycat]

I had a bright idea. My wife was on chemo and dying and felt bad we had never done our Alaskan cruise, so I cashed in part of my retirement funds and did an Alaskan cruise with her, bring along her wheelchair. After all, I figured a bed is a bed.

The BEST thing I did was do the pre-cruise San Fransico Ritz-Carlton with their Dream Bed and room service.

Basically, everything else I did wrong...wish I had checked here first.

1) Request a wheel-chair room! They have bigger doors and wheelchair bathrooms and baths...VITAL. We ended up leaving our wheelchair in the hall and having her walk painfully to bed and bathroom.

2) Request a table near the dining room entrance. We had her park the wheelchair at the entrance and painfully walk to the other end of the dining room

3) I DON'T KNOW.....but I WONDER......DO....WILL....the crew help you push the wheelchair up and down the Port ramps? Nobody ever volunteered and sometimes my nose literally was touching the ramp as I pushed her up. MAYBE.....leave her at the bottom, go up and ask for assistance? I don't know if the answer will be "sure" or "no, we are assigned to the x-ray machine.)

4) Small ports have cobblestone or unpaved streets and no curb cuts...that Hurts a patient in pain.

5) Think LOGICALLY.....take excursions that require ZERO effort and Zero bumping on the patient.

6) Take cabs, even for short distances

7) Be aware, the gentle, wonderful rumbling, rocking on a ship bed we all love may be torture to someone in cancer pain. Who knew?

8) Sadly, consider room service set-up for all three meals...the pain of dressing in a small room is overwhelming.

9) I find it vital for my own mental stress to settle her down and with permission go to a one hour show or dance or anything.

10) Be aware, cold is painful, even if a spectacular glacier is only 100 yards away.

11) Be aware, it's torture to go over the thresholds through doors...try to navigate a way to minimize doors.

12) Wonderful cuisine is meaningless to someon on Morphine. Find something bland early on....even if it means jello daily.

13) IMPORTANTLY, get a doctor's statement that the patient may NOT stand even briefly for the airport. If hassled at the airport, ask for a manager, supervisor, airport director if needed. They made my wife stand as I completely disassembled the wheelchair. At security they made her stand on one-leg against my protests and she collapsed as her hip crumbled to dust. BE NICE to EVERYONE who says no or asks ridiculous requests...if not nice, they can flag your chart and you will be DOUBLE-checked at every station (Security and Plane, both ways.)

14) Decide....is the final gesture loving or futile? Don't rely on Hollywood versions of terminality...it's not a simple scarf on the head and pale lips. It's....bad. I don't regret the love involved in spending my retirement taking her....I do regret the non-understanding of how much effort would be require even with the wheelchair and bed.

 

First and foremost, I'm so sorry for your loss. Please please, you did nothing wrong and did not make mistakes. It was truly a wonderful intention on your part.

 

Disabilities don't come with a handbook of do's and don'ts. Most of learn what does work or doesn't work by trial and error. Online communities have a wealth of information and support but ultimately each disability has it's own unique set of requirements. I know when I have surgery, I'm usually the one telling the nurses how to get me in and out of bed. The usual assistance just doesn't work for me and all I need it a set of trapeze and a spotter. Since most of my joints hurt, I don't want to be touched if I can avoid it.

 

As far as the airport goes, they were totally wrong to make your wife stand with or without a doctor's note. Please file a complaint with the TSA. If anything, it can be used by them for training purposes. You may want to consider copying Rep Peter King. I wrote to him about my treatment at a checkpoint and he was very responsive.

[Tmrlovesjr]

I had a bright idea. My wife was on chemo and dying and felt bad we had never done our Alaskan cruise, so I cashed in part of my retirement funds and did an Alaskan cruise with her, bring along her wheelchair. After all, I figured a bed is a bed.

The BEST thing I did was do the pre-cruise San Fransico Ritz-Carlton with their Dream Bed and room service.

Basically, everything else I did wrong...wish I had checked here first.

1) Request a wheel-chair room! They have bigger doors and wheelchair bathrooms and baths...VITAL. We ended up leaving our wheelchair in the hall and having her walk painfully to bed and bathroom.

2) Request a table near the dining room entrance. We had her park the wheelchair at the entrance and painfully walk to the other end of the dining room

3) I DON'T KNOW.....but I WONDER......DO....WILL....the crew help you push the wheelchair up and down the Port ramps? Nobody ever volunteered and sometimes my nose literally was touching the ramp as I pushed her up. MAYBE.....leave her at the bottom, go up and ask for assistance? I don't know if the answer will be "sure" or "no, we are assigned to the x-ray machine.)

4) Small ports have cobblestone or unpaved streets and no curb cuts...that Hurts a patient in pain.

5) Think LOGICALLY.....take excursions that require ZERO effort and Zero bumping on the patient.

6) Take cabs, even for short distances

7) Be aware, the gentle, wonderful rumbling, rocking on a ship bed we all love may be torture to someone in cancer pain. Who knew?

8) Sadly, consider room service set-up for all three meals...the pain of dressing in a small room is overwhelming.

9) I find it vital for my own mental stress to settle her down and with permission go to a one hour show or dance or anything.

10) Be aware, cold is painful, even if a spectacular glacier is only 100 yards away.

11) Be aware, it's torture to go over the thresholds through doors...try to navigate a way to minimize doors.

12) Wonderful cuisine is meaningless to someon on Morphine. Find something bland early on....even if it means jello daily.

13) IMPORTANTLY, get a doctor's statement that the patient may NOT stand even briefly for the airport. If hassled at the airport, ask for a manager, supervisor, airport director if needed. They made my wife stand as I completely disassembled the wheelchair. At security they made her stand on one-leg against my protests and she collapsed as her hip crumbled to dust. BE NICE to EVERYONE who says no or asks ridiculous requests...if not nice, they can flag your chart and you will be DOUBLE-checked at every station (Security and Plane, both ways.)

14) Decide....is the final gesture loving or futile? Don't rely on Hollywood versions of terminality...it's not a simple scarf on the head and pale lips. It's....bad. I don't regret the love involved in spending my retirement taking her....I do regret the non-understanding of how much effort would be require even with the wheelchair and bed.

Thanks for sharing, first of all I am sorry for your loss. I hope if faced with the same closed doors in my face, I would have the courage to go on and try. Your love for you wife is very evident, and she was greatfully blessed for that. I am sure she knew it and was thankfull for having you.

[ILoveScotland]

Brockwest, your post has touched my heart. Thanks for sharing and for the love you showed your wife by going on the Alaskan cruise. You will never regret what you've done.

 

My husband is almost 20 years older than I am--he'll be 87 this month--and has been in declining health for several years and in a wheelchair for the past two years. We continued to travel as long as possible, but our Alaskan cruise last September was his last major trip in part because it has become too difficult for both of us. We'll continue to travel, but it will be to various timeshare condos within driving distance rather than a cruise or land trip that also includes airplane travel.

 

I totally understand about the wheelchair and several things you mentioned. We went to Rome for 4 nights pre-cruise in October 2007, and maneuvering the cobblestoned streets and sidewalks became a challenge as well as the curbs with no cut-outs. But we developed a system that worked well. And people always came to our assistance.

 

I have always had assistance from the crew in ports--can't remember a time when someone didn't help DH down the ramp or back up when we got back to the ship. Wonder if that's because I'm the 5'2" older woman with assumption that I would need help. Whatever, I appreciated the help I got.

 

We were also able to get the wheelchair plus a scooter we rented into our cabin, even our non-handicapped accessible cabins. It made the cabin crowded, but we managed.

 

We also have not had problems going through airport security. We tell the agents that DH can't stand, and someone rolls him through a separate door and uses a wand to check out him and the wheelchair.

 

Sorry you did not have some of the help I've had from different people. It's meant a lot to me to have those courtesies extended.

[Wheeler63]

Sorry about your wife, and the problems you encountered.

 

This board is just where people should go to inquire before plans are made. I've received excellent advice and info from my fellow CC cruisers who use wheelchairs.

[DWofHandicappedCruiser]

Sorry about your wife, and the problems you encountered.

 

This board is just where people should go to inquire before plans are made. I've received excellent advice and info from my fellow CC cruisers who use wheelchairs.

 

Don't think so. It explicitly states this is where you come to "share ... advice & experiences". If other handicapped cruisers don't know what someone has experienced, how will they know what they have to deal with?

 

And to the original poster, my condolences. My husband and I travel everywhere we can because I know someday we will be unable to. We'll are determined, however, that we will have some wonderful memories.

[Jewels57]

Hi, I just wanted to say Thank-You. You are truly a man of integrity. To be willing to look beyond your hurt and take the time to try to help those of us struggling with issues regarding mobility and cruising, is very generous. I applaud you. I agree with many of the other posts - You didn't blow it. You did the best you could, and unfortunately, life doesn't always work out as planned. I grieve with you upon the loss of your wife. May God Bless You.

 

Sincerely,

 

JEWELS 57

[Brockwest]

I'm sorry it took so long to respond, but I've really wanted to respond to the wonderful replies.

UppityCats...I wished I had known one could refuse to stand up from a wheelchair. Being new to the experience, we did as told. Unfortunately my wife's hip broke in half when she stood, which somehow made TSA even more angry.

XXooCruiser..yes, my wife did truly appreciate the effort and the attempt, but the pain it caused gives me regrets.

PrarieCruiser, yes, interestingly the most important, closest moments of our 20-year marriage were her terminal days. One gets an epiphany and little stuff doesn't matter anymore.

Spanner14...yeah, ever since 7th grade P.E. class most of wish there was a "Life-for-Dummies" manual, but there isn't.

Sea-Gypsy, I hope your cruise went well. Please let us know how you did!

Cusyl, I'm sorry to hear about your spouse...wow fifty years, and i thought I did well with 20.

Lady_jag, thank you for your kind words. It's been 7 years, and your replies brought tears to my eyes.

Cathalain...I hope your cruise went well and my advise was helpful..please let us know how it went!

Rjm1cc, ty, I do hope it helped.

GrBlizz, yeah, the "wheelchair thingy" is an awesome thing to first experience. Suddenly you understand why curb-cuts are needed, why doors need to be able to be opened by anyone, why people with golf bags who jaunt from their cars while parking in a handicap space gets upsetting.

DeniseandPaul STl...I'm sorry I didn't get the information to you in time for your trip, but hopefully you got some helpful information for your next trip.

HarryB50,,,,,isn't getting tastebuds back simply an AWESOME experience? I LOVED it when mine came back!

HarleyCat, I've found the airports, with the vast numbers of people they serve, simply don't seem to care about complaints. I've found that coming to forums like this help pre-prevent problems before they occur. My 2-year-old was sucked into the escalator at Dulles Airport and only by the utmost willpower was I able to rip her clothes off before she was crushed. I wrote a polite letter to the Airport manager, saying that the emergency off button should be on the inside of the escalator not way on the outside, only to get a snotty letter back that he felt the button was just fine where it was. Had I read the advise here first, I would never have allowed my wife to stand,but the TSA was basically saying they would have me arrested if I advised her not to stand.

TmrluvsJr....I've found when confronted with doors closed in my face, it makes me determined to find ways to open doors for other people, somehow.

ILoveScotland, I'm pleased things have gone well with you, but I gather you are experienced in navigating the system. I only made each mistake once, but each once was painful.

Wheeler63, I wished I had consulted this board first!

DWofHandicappedcruiser: Go, enjoy, but plan appropriately!

Jewels57, thank you for your kind words.

 

well for everyone, it's been seven years and I was fortunate enough to find another angel who was willing to take me on, and we got Married in October....I took her on her first cruise and she LOVED it!

[PennyAgain]

Thank you for your wisdom and kindness. So glad to have a 2nd chance at love.

 

I fought hard with the TSA when my leg was badly damaged and had no problems because of standing up for my rights and needs. Times have changed in 7 years. With the exception of one idiot who asked me how far I could REALLY walk, all the TSA people were kind.