Jump to content
  • entries
    767
  • comments
    3,563
  • views
    213,620

degree of difficulty

Sign in to follow this  
swilkinson

155 views

Ray and I went for our bus trip today with the WAGS (stroke support) group. It is the first time in fifteen months Ray and I have been on a bus trip and in a way this was a test run to see if going on a bus/coach for a day trip or for a few days break is possible. Well, from today's experience it is not an option any more. But then I should have known that as soon as we did the pick-ups and I realised I was the only caregiver pushing a wheelchair.

 

The trip went to a historic house the other side of Sydney. We had morning tea in the park where the Rivercats pull in for Sydney Olympic Park where the 2000 Olympic Games were held. It was a flat area suitable for all the disabled people but only two toilets so we more able bodied let those with an urgency problem go first. I made it back just in time to grab a cup of coffee. The people varied from a couple of ladies who hardly show they have had a stroke, by various degrees to Ray in his wheelchair, some came with a caregiver, daughter or friend and a few came alone, mostly they walked with a cane.

 

The historic house proved very difficult although as a concession to the disabled it had a ramp. The guide said to the bulk of the group: "You follow me." to me she said:"You go through there, down there, across there and up there and you will find a ramp at the back of the house." I did, after crossing half a cow pasture, a pebbled garden area, a rose garden and a long sloping lawn. Because of the recent rain it was all soft and muddy and required a great deal of effort to get through. A couple from the group held back to help me up the ramp but that was all.

 

We toured the house which was empty apart from a couple of furnished rooms. The guide then said:"Come on, follow me." to the group and to me she said:"Go back the way you came." Easier said than done when you are trying to push a wheelchair up a sodden cow pasture in drizzling rain. I finished up having to back up most of it. Just as I got near the top the bus driver saw me and came to help.

 

Of the rest of the trip we were able to do lunch, we did see the sheep shearing, but I declined to attempt another cross country drag to another paddock to see the sheep dog round up the sheep. Enough is enough. I could of course have left Ray up the top and gone down myself but that kind of defeats the purpose of getting him out for the day. The truth is that we can no longer do what we did even twelve months ago. Since Ray's fall, with his current weakness and lack of strength in his legs we have an added degree of difficulty. We not only can't keep up with the able bodied, we can't keep up with the moderately disabled either. My back is so sore from dragging him backwards that I will have to take pain relief tablets to go to sleep tonight.

 

All this is a bitter disappointment. I did think that by now Ray's injuries would be healed and we would be back to where we were, but that isn't so. I don't know why it shouldn't be so. He had a fall, he fractured his pelvis and hip joint, he did not have another stroke. The doctor says he is doing very well, the physio says the same. But he is still obviously nowhere near where he was mentally and physically to where this all happened in January. I need to find out why.

Sign in to follow this  


11 Comments


Recommended Comments

Hi Sue,

 

I too would find the trip very disappointing. I hope you plan on providing the groups planner with some input on how difficult it was.

 

Having fractured both his pelvis and hip joint Ray's physical recovery will take longer. Patience is not the word you want to hear but that is probably what you will have to find, one more time. Mom took care of Dad and worried about the apathy, grumpiness, and lack of alertness after he broke his leg but once the body mended, Dad's spirit did too. That is my wish for you, that Ray's spirit will be better as his body heals and his self confidence improves.

 

My Dad was very worried trying to walk again because he had proof what could happen. I think that is the case with many people when they have fallen - there confidence in their own abilities has dimished so its hard on them.

 

Your blogs show the level of stress you are under, and I hope you can find a way to have free time when you do not need to worry about Ray. My Mom sounds a lot like you, she cared for both my grannies, and with Dad tried to tough it out and it cost her dearly, eventually she got nurses aids / nurses in to help which very good for her and Dad.

 

Reach out to the people in your church. I know that at least once, after church Mom had people come over for a Potluck Lunch (everyone brings a dish), and Dad really got his spirits up seeing everyone from church.

 

Kind regards,

Dickons

Share this comment


Link to comment

Sue,

 

It sounds as though your trip was about as painful for you as our trip to Vegas was for me. We cut our trip short by two days as my back couldn't take any more of pushing his wheelchair on less than adequate surfaces.

 

I've come to the realization that there are going to be some trips that just aren't possible with Gary in the wheelchair, but I'm not going to let that stop us from taking the ones that are possible or taking someone along to help with him.

 

Is it possible for Ray to get a motorized scooter so that you don't have to push him. In Gary's case that wouldn't work out in public as I would have to operate it since he has double vision, but if Ray can see okay and use one or the other of his hands, I would think he could operate a joystick to control a motorized scooter. Although, getting one of them stuck in mud and muck wouldn't be much better than trying to push the other kind through it.

 

We've been on several trips where I had to sit back with Gary because it was impossible to get his wheelchair into places we would have previously gone together, i.e. climbing the steps of a lighthouse, sitting in a separate room off the side of a church for a relaltive's funeral, riding the shuttle around the track at Daytona. These are things that we can no longer do, and I totally understand how that makes you feel isolated. We've learned that popping a good comedy video into the DVD player at home works just as well for both of us as trying to get out and become frustrated or disappointed in dealing with places and things that are no longer accessible for us as a couple. I've also had to come to the realization that because it's impossible to get Gary into those kinds of places, that doesn't mean I can't go without him.

 

Sarah

 

 

Share this comment


Link to comment

Sue,

 

So sorry your trip was a nightmare. I hope, after your soreness dissapates. you can find some humor about your "stroll" through the cow paddy. It will take Ray physically longer to totally heal due to the fracture and his age as well. Even for myself, as I'm climbing the age ladder, I notice it takes a longer time for the healing process to complete. Added to that the fear of taking a nose dive to the floor again is probable spooking Ray and understandably so. I know, it's been a year since I've actually fallen, but I've had close calls.

 

I would definitely let the group leader know of the difficulty you endured on the trip. In my opinion, that was descrimination.

 

Also, your intentions were good, remember that. The scooter idea is good. Here, in the States, there are programs to assist in the acquisition of one. Hopefully, there is such programs for you.

 

 

For your own sanity, you may need to take trips without Ray but remember to leave your guilt behind - I'm sure Ray would want you to "enjoy" yourself even though he can't verbalize it.

 

(((Hugs))) to you both

Share this comment


Link to comment

This reply is to Sue and a bit to Sarah.

 

Sarah you wrote "since he has double vision". Has Gary been fitted with prism glasses? They do work. A friend had a car accident and got double vision. When these glasses came out, she was fitted with them (instead of a patch) and she sees correctly. Of corse when not wearing them, she sees double. Of course there may be some other problem as well.

 

Sue, I'm so sorry. This trip though was not well thoght out by the planners. I'll bet the others hurt too from so much walking etc. To me, this doesn't mean that you and Ray can't go places together. You just have to plan it yourself and be sure that the place is ok for handicapped people. Perhaps a trip where you can see the scenery from the coach and has a park for tea and a restaurant where wheelchairs can be push easily. Don't give up; just try to figure something for yourselves.

 

I do agree with Sarah that maybe Ray's injuries need a little more time. Even an older person in excellent health who has an injury will take longer to come back. Even if you were younger, it wouldn't have been so hard. These are the "problems" with aging in general. I know in a few days, things will look brighter.

 

Phyllis

Share this comment


Link to comment

Sorry your trip was so disappointing, :( do they have some type of itinery you could check out to see if some of these trips would be wheelchair friendly? May make some of the outings possible. Is there another group you could look into for people in wheelchairs?

 

Or suggest to the group that they get a couple volunteers to go along to help with the people that are less mobile.

 

 

Share this comment


Link to comment

Hi Sue,

 

It sounds like the parts of the trip you two were able to do were interesting and a great diversion from your the daily routine. Don would have been okay with me taking a quick look at the dogs doing their work, but that's just Don and I am grateful that he wouldn't deprive me from things like that. I think he actually enjoys a little alone time once in awhile because he really doesn't get much of that.

 

Since this is a WAGS group that organized the trip, you should speak up and ask the group to arrange for some electric scooters or golf carts for some the needy to use on these events. Or to ask for community volunteers to sign up to help with wheelchairs. You may have been the only caregiver pushing a wheelchair but it doesn't have to be if the group would make an effort to make the trips more wheelchair friendly and let people know that they are. Trust me, there was an army of volunteers who got Don and 16 guys in wheelchairs out to hunting blinds in the woods last fall to go hunting. People will help a good cause if someone puts out the call.

 

Jean

Share this comment


Link to comment

:( so sorry your trip was awful - i know you did all the work, but as a survivor, I felt the emotional pain just knowing I am a burden

GOOD LUCK

June :cheer: :big_grin:

Share this comment


Link to comment

Thanks for all the support and encouragement. I am just coming to terms with the facts that we "ain't what we use to was" and that I have to be prepared to do half a trip, go to the same places but not do the same things. And maybe ring the main venue and check out the "wheelchair friendliness" myself.

 

Jean, Ray would have sent me off willingly once but now needs more emotional support and does get confused if I "disappear" from his sight, I guess it is the dementia.

 

Donna and Dickons, you are right and Ray probably will take a much longer time to heal than that allowed for by the doctor and physio. I know he always struggles back to fitness eventually, but it is never as quick as he or I would like it to be.

 

Phyllis I bet you are right and the members who pushed themselves to do so much walking are probably feeling it today too.

 

Bonnie and Sarah: :friends:

 

June: a dearly beloved survivor is NEVER a burden.

 

Sue. :chat:

Share this comment


Link to comment

Hi Sue,

 

As I've written, our trip to Florida was great. The problem for me was after the rain, crossing the driveway on rather soft soil really was hard on my back. I've dealt with it since we returned. "Ain't what we used to be" goes for both of us!

 

Bill asked me recently if I'd like to go to Europe. I know he remembers Europe as it was - but I just couldn't manage everything I'd need to manage. He raised his eyebrows when I told him, no, I don't want to go to Europe. He almost seemed a little hurt - however, there are limits to what we are able to do Sue, no matter how much we love our survivor.

 

As has been said to me - if you don't take care of yourself, you won't be able to take care of Ray - then what will happen to him?

 

I do think we have to find alternatives to those trips we may once have enjoyed. Do you have any Sr. Citizens Day Care options there? That may be a way for Ray to get out - and you to get out too. I'm planning to do that here. Bill isn't thrilled about it, but it's a 1/2 day option and I'm told the men there are retired professional men who have memory issues. I think it may be a way for Bill to help as well as be helped and he needs a little of that, too.

 

Sue, the only way to have any serenity I've found is to take this one day at a time. I can't look into the future because that future is too daunting. That's the only advice I have for you - one day at a time. I try very hard NOT to have any expectations either because that's a sure way for me to become resentful - not of my survivor, but of the situation. These are just my tips for maintaining your serenity and sanity!

 

Love,

Share this comment


Link to comment

Hi Sue

Sorry to hear that the outing was so disappointing, maybe it's time for the organisers have a good think when planning these outings what access the venue has and is it wheelchair friendly. I have found that the majorty of people don't realise how hard it is for people in wheelchairs.

I love going to watch my children play soccer but have found only 1 ground has wheelchair friendly toilets and other facilities and most of the large shopping malls don't have many disalbled facilities.

I hate sitting outside shops because there is no access.

 

Ken

Share this comment


Link to comment

Hi Sue,

 

No words of wisdom to share - just sending you a BIG HUG!

 

Karen

Share this comment


Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×