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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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Striking a balance

These days I am feeling more like his mother than his wife.  I have to tell him to eat, serve him every meal.  I have to do 2–3 loads of laundry daily.  I have to remind him to use his walker, over and over and over.  I have to help him shower and dress.  I have to put my foot down when he is being ridiculously stubborn.  I feel like I am chastising too much and yet these things are essential to his health and well being.

I am trying to find the balance, to speak kindly, to keep him in the loop on all that is going on with the doctors and appointments and assistance that I am requesting.  I try to carry on like it is a discussion even though he cannot keep up his end and I know he won’t remember.  I try to make him feel part of the decisions.  I try to remember to be his wife and not his mother.

It is very hard sometimes.

 
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Posted by on September 30, 2014 in Cognitive Loss, Daily Living

 

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Status Quo

The status quo has changed around here for sure.  The latest attack that my husband has had really altered his personality.  He is pleasant, laughs at everything (lability) and has not been getting angry at anything.  This is very much out of the normal for him as he tends to be pessimistic and angry a lot.

He also can’t really walk very well, the stubborn part has not left him and he refuses to use the walker 90% of the time.  This means that he frequently falls. Thankfully he has not hurt himself with these falls.  YET.

He is not able to drive.  I made that decision due to his slow reaction times and the number of things he hit and people he nearly ran over the last few times out with his power chair.  His truck keys are very well hidden and I am firm on this.  After a visit with his neurologist on Tuesday the doctor agreed that hiding the keys seemed like a wise choice.  He asks for them occasionally and I have to say no.

He is midway through his second course of steroids, first one was 2 weeks ago.  Only moderate improvement after the first course of steroids, hoping for a bit more dramatic improvement this course, but of course only time will tell.

His neurologist put in a non-formulary request to start my husband on Tecfidera a new oral med for MS, he said that usually takes about a week, so sometime in the next week he should receive his initial supply and we get to try another MS drug.  Hoping for the best here.

In the meantime I continue to work 3-4 evenings a week for 5 hours at a time.  For the first 2 weeks following this attack I had arranged for people to sit with him, to make him dinner to make sure he doesn’t fall and get hurt.  But the available people have dwindled and we did a few trials with him staying home alone.  He was fine.  I made him keep his cell nearby and he was on strict orders to reply to any text messages I sent or I would start calling and then I would come home if still no reply.

So still praying that this is not the new normal but also not really hating how easy going and agreeable he has become.

 

 
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Posted by on September 26, 2014 in Cognitive Loss, Daily Living

 

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Our NEW Normal…

I can’t tell you how many times what is “normal” for our day to day lives has changed due to this terrible disease that has stricken my husband.  But the big dates stand out!

April 2007 – his balance and gait became so unsteady and uneven that he could no longer walk normally or go any distance without fatigue.  Our future trips to some of our favorite places – fairs and amusement parks – now required a wheelchair rental.  And after pushing him around a few times I realized it required a motorized cart rental.

October 2008 – his cognitive issues became too severe for him to continue to work full time or at all.  The short term memory problems and the confusion that had crept in meant he could no longer do the job he had done for years and learning the new skills required to keep up with technology in his field was not possible.  After quitting his job because he confusedly thought he had another one lined up as a contractor (and did not actually have it yet) we spent 6 months trying to get him employment but after each interview he heard nothing and when I quizzed him about how the interviews went it was clear that he was not meant to be employed.  We applied for VA Disability in April 2009.

July 2009 – I lost my job.  Between all the calls and faxes I was receiving to support the VA claim for my husband and the calls I was getting from him sometimes 4-5 times a day because he was home and bored and concerned about what was happening.  Well they decided that I was not suited for the company and let me go.  So now we are both unemployed.  I was able to collect unemployment but at a fraction of what I was making.  Now we had all these bills and no real income.  I decided that since I knew my husband would get VA disability for the rest of his life and it was a sure thing he would be approved that we could cash in his 401K’s to keep us afloat in the interim.  We survived nicely.

November 2009 – VA Disability approved, paid back to April giving us a nice big check.  I am able to drop my husband from my COBRA saving us hundreds each month.  Things are looking up financially anyway.  He was only approved at 90% though and we knew he was unable to work so we claimed Individual Unemployability immediately and waited another 12 months for that to be approved.

April 2010 – my husband’s social worker at the VA Spinal Cord & MS Clinic asked if he received SSDI and I said I didn’t realize he could get both?  She said YES and so began that process, everyone told me to hire a lawyer that no one gets approved the first time.  But I filled out all the paperwork and submitted all the doctors records that we used for the VA claim.  It was pretty cut and dried, he was approved in 3 months time and without having to see a disability doctor at all.  Thankful I didn’t have to pay a lawyer a chunk of that since they paid him back to February 2009, over a year of payments.

November 2010 – Individual Unemployability APPROVED!  Also awarded permanent and total meaning I was eligible to get my health insurance from the VA program called CHAMPVA until I was old enough for Medicaid at age 65.  No more COBRA payments was a huge load off.

June 2012 – in October 2010 I tried going back to work full time.  I got a job doing on the road sales for a local newspaper and even though I hated the job it brought in enough money to really pad our budget and my unemployment was not going to last forever.  Again I received a ton of phone calls but since I was on the road and they were to my cell which was personal my employer was none the wiser about this.  But we live 50 miles from the VA and my husband really could not take himself there.  At first I only worked 4 days a week and so I would arrange my schedule around his appointments to be sure I could drive him every time.  But then in March 2012 they moved me to a different territory and told me the job was now 40 hours, 5 days.  I got my dad to drive him sometimes and we used VA transportation a few times but things just were not going smoothly.  One afternoon when he had been sitting at the VA for 4 hours after his appointment waiting for a van to bring him home and he had called me for the 12th time it felt like I decided it wasn’t working.  I left work to go get him and bring him home and I gave my notice the next day.  My business career was effectively over.

September 2014 – since they put him on a drug holiday in April things had been smooth sailing, until September 7, he stopped being able to walk, he was struggling to talk, his personality changed.  He went from being rather sullen and angry at times due to depression, to seeming rather mellow and happy.  Where before he would get angry when I told him he could not do something and tell me he would do it if he wanted now he just smiled.  When I yelled at him for not using his walker and falling down again, he laughed.  He stopped smoking cold turkey over night and has not shown any signs of withdrawal at all.  He eats what I make and stopped being picky.  Don’t get me wrong it’s nice to not have a grumpy, picky man acting like a child but it’s just not him.  Due to his changes in physical status and the falls, and his cognitive changes and ability to make good choices (like using his walker?) I am unable to leave him home alone.  So if I want to go to work my part time job 2-3 nights a week for 5 hours at a time, I have to get someone to stay home with him.  So far my parents have done it three times and my neighbor once.  I had to give up a part in a show with a local Community Theater as I cannot ask people to sit with him for something as frivolous as rehearsals.  I’m praying hard and often that this is NOT our new normal.

 

 
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Posted by on September 19, 2014 in Cognitive Loss, Daily Living, History

 

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