Monthly Archives: September 2015

Respite Care…

For my sanity I need to use the respite care that is available to me for my husband.  What all does this entail?  Well because he is part of the Spinal Cord Injury and Illness Center at the VA he is entitled to spend up to 30 days a year there in respite care.  This means I can drop him off and the nursing staff will take care of his meds, and his physical needs.  He will be fed three meals a day in the dining room.  A recreation therapist will work with him and other veterans during the days to prevent total boredom.  He will get time in physical and occupational therapy.  Any appts he needs can be taken care of while he’s there too.  And I get a break, my house all to myself.

They encourage me to use this service and until now I have not done this.  I should have.  He has been part of this clinic for almost a year now and I could have had a month off?  Why didn’t I do this?  I will be using this going forward. I plan to schedule one week each quarter to just unwind.  I hope to take at least one great beachy or tropical vacation with a friend or my sister during one of these visits.

I think I was afraid that his family would object, but after our camping trip last week and they saw just how bad he has become they have no complaints at all and understand why I need a break.

So I’m planning – will get him a MiFi so he can use his laptop as the VA in Syracuse has no open WiFi for patients.  Will send him with a stash of his favorite snacks.  Will send some DVD’s he can watch on his laptop as the cable there is not full of choices.  Hoping that the first one goes well so I can enjoy these breaks 4 times a year without guilt.

1 Comment

Posted by on September 15, 2015 in Caregiving, Cognitive Loss, Daily Living, Dementia


Tags: , , ,

Living our life…

So following the theme of living our lives and not letting this disease stop us we took off two weeks ago with all three dogs and our cat for a long trip in our camper.  We traveled 4.5 hours the first night and slept in a Cracker Barrel parking lot.  No electric makes that interesting.  The battery provides enough power for lights and to run the water pump to flush the toilet, etc.  The fridge runs on propane BUT we realized when we stopped at midnight that the propane had run out.  DOH so a full fridge and freezer and it ended up being 10 hours before we got propane.  But it was okay.

The nice thing about the camper is you have a bathroom with you all the time, but there is not always a safe and efficacious place to stop and walk from the truck to the camper and get in to make this happen.  Day two had us pulled over in a cul-de-sac with our 35 foot camper and a clothing change caused by an accident.  People were home and likely wondering what on earth we were doing there.  I kept waiting for cops to show up but they didn’t and we got back on the road.

Finally checked in and set up at the first campground where we were spending 4 nights with my husbands sister and brother in law and his brother as well.  It was HOT, super HOT which is not so good for MS and the campground electrical was subpar so we kept losing power and browning out.  Not good when it’s in the 90’s and I have to leave 4 animals in a tin can all day.  Thankfully these power outages seemed to be only when we were there.  We also spent 2 days on the lake on a pontoon boat.  So much fun but so draining.  Husband was BEAT.

On Labor Day we moved on – pulled out around 2pm and had a 3 hour drive to our next destination.  Got in and got set up there by 6pm and then stayed for 7 days.  Was not nearly as hot and much more relaxing.  Hung out around campfires and went to bed early.  7 nights and not a single accident (WINNER WINNER) but to really test my patience the cat decided to pee on my bed.  Thankfully I have a waterproof cover (of course) so she did not ruin my bed.

After 12 full days living in the camper and a 10.5 hour drive home we arrived home last night.  I am happy to be here for sure.  BUT this trip helped me realize that a winter in Florida is not really out of the question.  The camper is comfortable and roomy and if I rearrange storage a bit we will have no issues.  So if the VA ever gets their head out of their A$$ and we get our current issue settled we can indeed manage Florida for Jan/Feb.


Posted by on September 15, 2015 in Caregiving, Daily Living, Dementia