Falling over the edge…

19 Aug

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.


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


Tags: , , , , , ,

2 responses to “Falling over the edge…

  1. marilynn rask

    August 19, 2015 at 7:31 pm

    know how you feel, no really knows what you go though, I understand and I know what it’s like. I have lost many friends and missed many special occasion because could not leave my husband alone, and yes he does stupid thinks too. I have learned to ignore the insults for my own sanity. sending prayers and thoughts your way.

    Liked by 1 person

    • marriedmonster

      August 25, 2015 at 6:19 pm

      Marilynn – is your husband being seen at an SCI/D unit? If not request a consult!!! These are specific for Spinal Cord Injuries and Diseases at the VA. We drive 100 miles to Syracuse to use the services there as needed. One of the benefits that they offer that I have just become aware of is respite care. Your husband can spend up to 30 days annually there for respite care. I am planning to use this in the coming year, hoping to plan one week per quarter, 2 weeks of 7days and 2 weeks of 8 days or maybe 3 weeks of 7 days and one of 9 days? I have not fully decided yet but we go in Oct for his annual assessment and I will be scheduling the first week then. It will take me some time to get used to the idea and to not feel horribly guilty the whole time but I am losing it and I know I need a break so I am going to do it.

      Here is the list of SCI Units – 2 in Florida – and the one in Tampa is supposed to be amazing!!! This is why we are planning to relocate to Tampa.



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