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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.

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

 

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My new tshirt

Saw this online one day and decided to order it. Not sure if I have the nerve to wear it though. 

image

 
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Posted by on August 25, 2015 in Caregiving

 

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Falling over the edge…

The thing about this disease is that it is all consuming.  For my husband it has taken every part of his life and turned it upside down.  He is no longer the same person he was not even close.  What people don’t seem to realize is that it is doing that to me too.  From strong career woman to washer woman, enforcer, meanie.

He tells me I am mean almost every day. Why?  Because I try to keep him safe.

“Give me my keys!” he says “I’m not asking you I’m telling you!” he says.  I have to say NO and mean it and he hates me for it.

The other day my uncle sent me a photo of my great grandmother.  I showed it to him, he says “you don’t look like her at all” so I tell him that people say I act like her, his reply “so she was a bitch too?”  Yep that hurts.

I feel like I let friends down and that they really do not understand how caregiving has consumed my whole life.  I had promised to loan my camera to a friend for Sunday and was supposed to drop it off Saturday night.  I remembered on Sunday when I was already too far away to do anything about it.  She wanted it for a large event, and so she had no camera and had to rely on others for photos.  I feel bad and sent her an apology text on Sunday when I realized what I had done.  It’s Wednesday there has been no reply.  I’m sure she feels I let her down.  But I’d love for her to spend a day in my shoes and see the things that are consuming my mind daily and realize how easy it would be to let something like that slip and that it doesn’t mean I don’t value her as a friend or that I don’t think her event was important.  I do know it was important, I know she felt let down, and now I feel like I may have lost a friend over something stupid really.  I lost track of time on Saturday as I was dealing with so many things at once, dinner, dogs, friends, getting ready for Sunday’s road trip and just battling my usual depression and lack of motivation.

September 6-7 2014 is when this disease took a huge jump forward.  From the outside my life looks the same to most people but no one seems to understand that it’s not at all the same.  My husband has the judgement of a 4 year old.  Everytime I leave him alone for any length of time it is a gamble.  In 30 minutes he nearly burned our camper down, what could he do with 4-5 hours while I go to work?

I am working on getting support lined up for my overnight trips I have to go on this fall.  Thankfully my sister and her husband are trained caregivers for adults with special needs.  And since I have provided countless hours and days of absolutely FREE babysitting for their children I called in the favors and my brother in law will stay with and manage my husband in my absence.

Still not sure what to do about my apparently pissed off friend.  All I really want to do is go back to bed and sleep for a few more days.

 
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Posted by on August 19, 2015 in Daily Living, Dementia

 

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Freedom and Frustration…

Our trip to the SCI Unit was interesting, eye opening, helpful and sad.  It seems that there is a lesion causing all of this, and it did not respond to IV steroids.  It is likely caused by going off Tysabri and taking a drug holiday.  It seems these changes are going to be fairly permanent as we are now 2 months in with very little improvement.

He is now fighting for his freedom at every turn.  What does that look like – well it looks like him refusing to use his walker and instead ending up falling down many times a week.  It means him dragging his butt up into his truck rather than use the very expensive turnout chair that the VA so graciously installed for us.  It means hauling himself up the 4 steps in the garage rather than allowing me to push him up the beautiful new ramp to the front door.  It means ignoring me when I am just trying to keep him safe.  It means laughing in my face and not responding when I try to reason with him.

He is fighting for freedom and I am so frustrated I could SCREAM.  Thankful I get a break this weekend as he is staying with the neighbors for 2 nights and I am going out of town for a movie shoot.  It will be a roughing it kind of weekend in a cabin with heat but no running water.  But it will be a weekend when I am only responsible for my own welfare and safety and no one will be defying me and fighting me at every turn.

I wish he could have his freedom back and I could let him be.  But for his safety I can’t.

 
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Posted by on November 8, 2014 in Daily Living

 

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Moving right along…

The turn out seat is installed in our truck and we are currently at a guest house for the night and will be checking into the SCI and MS clinic tomorrow morning at 9am.  Tomorrow is sure to be a very long and tiring day for both of us.

Things that I’m hoping for and ASKING for:

  • A lift – something to get him back up off the floor should he fall and be unable to assist me with getting back up
  • Regular Physical Therapy in our home!
  • Cognitive or Speech Therapy or both (he is still struggling to speak)
  • Assistance getting his claim fast tracked in NYC at the Regional office.

I’m sure I’ll think of more things as we go along.  So three days of HELP is coming up and I am so thankful just to be here.  Also loving the guest house where we are staying tonight as they have a handicapped accessible room for us and a lovely guest home with TV for my addicted husband.  And DINNER was provided too, I had buffalo chicken mac and cheese, he had some minestrone soup and bread.  All for the bargain of $35 per night.

 
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Posted by on October 28, 2014 in Daily Living

 

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Today was better…

Small victories, today I had no urine soaked anything to clean up.  Today I did not have to pick my husband up off the floor after yet another fall.  Today we talked a little bit and we cuddled for awhile.  Things are different for sure but laying in each others arms makes things feel a bit more normal and the bad a little easier to face.

Some things are starting to fall into place – We are going to an SCI clinic where he will get 3 days of  assessment and help planning for the future and what that may mean for us.  The wheelchair ramp is ordered and should be here in 3 weeks.  They are also installing a seat similar to this to our truck so I can get him in and out of the truck much easier.

Still so much up in the air but after a series of very bad days it was nice to have one that was not horrible.

 
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Posted by on October 4, 2014 in Daily Living

 

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A new low for me…

bitch

Today I found myself in the men’s room.  TWICE.  First time at the VA when my husband pulled the call button for help and a shrill alarm started sounding outside the door as well as flashing lights.  I went in to check on him and we turned off the alarm, but it rang for nearly a minute.  Sadly no one else showed up so those alarm buttons in the bathroom at the VA?  Don’t expect much.

The second time we were at Outback for lunch.  He insisted on walking in rather than me getting out his wheelchair.  We get from the truck to our table (about a 15 minute excruciating process) and then he says he needs to go to the bathroom.  Of course it is in the very far back of the restaurant and so he starts making his way there an inch at a time with his walker.  I know this is not going to work and he is not going to make it.  So I leave him moving at a snails pace toward the bathroom and go out to the truck where I retrieve the bag of extra clothes and his wheelchair that he should have been using.

Soon I find myself in the men’s room at Outback, on my hands and knees in the men’s handicapped stall helping him get his wet jeans, underwear and socks off.  Helping him clean up and get clean underwear, socks and sweatpants on.  While I am on my hands and knees in the bathroom stall someone else comes in.   Once upon a time in another life I may have been a bit of a wild girl for a year or two, but this was definitely a first for me.

Even my husband had to laugh as I said “when you picture me on my knees in the men’s room I bet this was not what you had in mind…”

At least we can still find humor in this messed up life.

 
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Posted by on October 1, 2014 in Daily Living

 

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