Hospice stay - for us both

[rachelg]

Following a bit of a meltdown last week our hospice have kindly offered to take us both in. We are now on the waiting list for a 2 week "holiday".

They have a particular room where both patient and spouse/carer can stay. We are lucky that our hospice have a lot of experience with ALS (particularly high incidence of it in our area) and their senior staffing nurse has spent the last 6 months in full training and been visiting patients in the community to aid her ability to understand.

The plan is initially to stop me having to get up every 2 hours during the night, hoping that a few good nights uninterrupted sleep will help recharge my batteries. They would like to cook for me and for me to have treatments ie. massage, reflexology, hair, nails etc.

They would also like me to have a break from hoisting - my back is soo sore.

For Mark - different faces (not my grumpy one), physio, treatments, medication review and hopefully fresh air - the gardens are amazing and the room has like a glass door system that opens the whole side of the room out on to the garden.

I feel guilty - because i just cant wait, and poor Mark is anxious about the change.

I think we are very lucky to be offered this option - so this feels like good news :smile:

 

[panguinjen]

Rachel,

How cool is that? Are you excited (as excited as an exhausted person can be 8))? I hope it's soon!

Jen

 

[brooksea]

Rachel, that sounds wonderful! My only question is how will you be able to sleep with all the comings and goings of the carers? Hope you will be able to re-charge!

 

[joni51]

This sounds wonderful!

 

[CindyRN]

Rachel,

Hospice is a wonderful service. Where I worked we offered Hospice services to families and they really enjoyed the rest. Enjoy the massages! I think Mark will enjoy it too!

 

[dragonflydi]

Rachel, this is amazing! Take advantage of every well-deserved minute of your break. I think I want to move to Britain. : ) --Diane

 

[rachelg]

Thank you all.

Jen - yes i'm a bit exited - hope its soon. Not sure of the wait - hopefully only a week or two, they know i'm edgy so I am sure they will do their best to speed the wait.

CJ - alcohol!

Mark was in there for 6 weeks in April 2010 and I stayed there a few times - the staff had fairy feet and their suction machine is a whole lot quieter than ours. There is a family suite if I get brave enough and Mark is confident enough for me to sleep apart from him.

I hope its all I want/need it to be. In any case, its a change from this - and this at the moment is what i'm struggling with.

 

[momap53]

Awesome! Sounds like it is much needed.

 

[glupavomomiche]

Fantastic! What a fabulous opportunity! Enjoy!

 

[DeansWife]

Wow! It sounds fantabulous! It's nice to know that somewhere, there are people who are just as concerned about the caregivers as the patients. I haven't heard of this in the USA. Our state ALS Assoc will provide respite care in 4 hour intervals up to 72 hours a year and while yes, the 4 hours of not having to worry (as much) is nice, oh to be pampered and actually taken care of. Hmm, I think I need a cruise! Enjoy every minute of it. I'm sure your Mark will be well taken care of. A great break for both of you.

 

[cervus]

You and Mark are so fortunate to have this kind of opportunity. I hope you both are able to rest up a bit and that you feel a bit refreshed at the end of your stay.

 

[vzandt]

Wow. Nice

 

[skipper66]

You so deserve a break so don't feel quilty ever. I have a cousin who's husband was in a construction accident and is paralyzed from the waste down. The insurance company his employer has pays for my cousin to take small retreats every once in awhile. It does wanders for her morale and her energy levels. Hope you get to do this soon. Kim

 

[Miss]

How fantastic! I wish we had something like that here. There are so many exhausted caregivers around here!

 

[brooksea]

Well, fairy feet sound fantastic! Great you have such an opportunity!