Traveling v4.0

[JohnHMich]

We are back from the trip to Dublin And London. Our niece helped with caregiving and I have no idea how we would have done it without her. Toileting is getting very hard. She can no longer stand while we de-pants her, so we now have one person lift and the other adjust clothing. This is probably the last international trip. It was pretty tiring to go thru the plane changes, long flights and luggage requirements. She can still swallow and breath off the vent. Her right hand is still ok. I think she can lift a pound or so. The eye gaze is ordered and I think the PEG will go in toward the end of October.

I am very happy we were able to the trip, but I am feeling less competent to care for her by myself. The bathroom transfers / dressing are almost impossible for me without help. I finished getting her pjs on while she was lying in bed the last time.

 

[lgelb]

I'm glad you were able to do the trip, though I'm sure it was rough.There will be many great memories for all of you.

Best,
Laurie

 

[vltsra]

John, good you were able to do your trip. When my PALS was better we did a little traveling. Our last trip was to Yellowstone when he had started bipap and needed a walker/push chair. I pushed him in the chair all over the trails which was no small task. You will be so glad you traveled as things progress.

You might need to consider a hoyer lift and slings at this point since the transfers are becoming harder. I am able to transfer my 150-lb husband to the commode chair by myself with the hoyer lift. It is getting harder as he has lost a lot of core strength and cannot help at all but we manage. Dressing is accomplished in bed by turning his body side to side and pulling up his Depends and shorts. We have a "shower buddy" rolling shower chair for bathing, or can use the commode chair in the shower for that as well.

We hired a caregiver who comes during the day to help get him out of bed. It helps me as I'm struggling mightily with caregiver burnout. If you can afford some help it is really a relief. With my PALS on bipap 24/7, I can't leave him alone to even go to the grocery store to get things he needs, so having some support is necessary. You might try your local ALS association for referrals.

Best wishes
V

 

[affected]

John that trip was the best thing you could have done, for all involved.
I had care staff that came for varying lengths of time 5 days a week and would never have coped without the help. I hope you can find help because this has to be sustainable. Don't let anything make you think you should just be able to do it on your own.

You have a hoist to do the lifting for you? That is really an essential piece of awesome equipment. Sorry I can't remember if you have one.

 

[JohnHMich]

Thanks for this. I have switched to doing her brief changes on the bed and it goes much smoother. I am just not coordinated enough to do a lift and get her briefs up, but the side2side rocking works! I have a used hoyer, but this seems faster for now.

I really think this is our last big trip. I have no idea how to get her down south for the winter. I thought about a short term stay at an assisted living, but the logistics of getting her, the wheelchair, the DME , and the van all to North Carolina seems impossible. Even with us flying and a friend driving the car down.

I am even skeptical we could do a trip to Toronto for a long weekend. Maybe if we took two cars...

I’ve stopped doing the two outings a day now that we are back. That was mostly practice so when we were in Europe she could do a morning thing, take a nap and do something later.

 

[affected]

I didn't change briefs in a hoyer, but was talking about using one for transfers. I am 5' and could do all transfers on my own with Chris as I had a hoyer and it was brilliant. side2side rocking for dressing sure does work!

I'm so glad you have done what you could while you could, this is not an easy disease by any measure!

 

[Bestfriends14]

@JohnHMich we still go down South every winter as the alternative to my husband trapped inside for 8 months is not a question. A friend drives the van down and we fly with his chair, hoyer lift, ventilator, bipap machine, and all the other million things he needs to be comfy. He's fully wheelchair bound with little use of his hands and we still manage. We have a home in Palm Desert and are set to go back on November 3rd. If you could get some help to get down South, it would take a huge load off you.

 

[This is me]

We just returned from a five week trip. Croatia, Ireland, Maine and Niagara falls. Before we left, I was pretty independent with my cares but wheelchair dependent. I didn't have my normal equipment, and required more assistance. I have a smaller vent, Vevo 45 and we received a lighter weight, foldable electric wheelchair from Team Gleason.
After returning home, I am having trouble getting off the toilet and my arms aren't working so well. Hopefully after I get some rest things will be better.

My husband received a grant for the trip as part of his sabbatical and we asked for travel funds as wedding gifts. We would not have been able to do this otherwise. I feel very grateful for this.