What’s your life really like? So many caregivers are out there feeling like no one understands what they’re going through…but we suspect quite a few of you are going through similar things.

February 3rd marked a year since my husband passed away.

Life has been very different – I don’t have the daily battle on my hands with so many things, tube feeding via peg tube, bathroom messes, driving him to his appointments (he could no longer drive), arguments, dressing, giving pills, being bashed behind my back. Being with him in the hospital, doctor’s appts. (where I could not tell the truth because I had to go home and be with him). Therapists were under the impression that he was doing better than he was – he could bullshit with the best of them. His walk and his talk was fairly good – but his perception of things, his abilities to do things was never the same (stroke in 2013 at 64 yrs old).

What’s keeping you up at night?

While caregiving I had to be a light sleeper just in case he needed to use the bathroom instead of the urinal.

He would sleep walk quite often – he would rearrange things in whatever room he ended up in. Almost burned up the house heating up his barley bags in the microwave – had them heating up for too long – he could not use a heating pad because he would burn himself and had previously.

Or in case anything else came up overnight.

What are you really proud of right now?

How much I learned about nursing a patient, being a caregiver. Even showed nurses in the hospital how to handle hooking him up to the feeding tube.

I learned to read his body – knew when he was coming down with pneumonia or that his energy level was down – I perceived a lot about him from being with him every day.

I was mostly responsible for keeping him alive for the several years of his life.

Hanging in there until the end – I even considered divorce because of how mean and nasty he was to me – at least while receiving acute care at two different care facilities (due to silent aspiration pneumonia numerous times), he treated staff, his daughter, and best buddy the way he was treating me – amazingly, they asked why he was doing that, never considering that was the treatment I always got at home with him, he was now sharing his meanness with everyone else!

Knowing I could not change him – he began drinking whiskey (he was a former alcoholic) to calm him from the ‘familiar’ voices he was hearing.

I discovered that I could work from home – no matter what interruptions I experienced, I could stay focused and get my work done via remote connection to the office.

What keeps you going when you feel like giving up?

When considering a divorce I had a discussion with my Pastor – he understood what I was going through on the caregiving – he had cared for his Mother during her decline. I don’t know if it was as one on one as mine was, but he understood the mean and nasty aspects of the one being cared for.

My Pastor asked me if I still loved him – and I had to admit that I did. That’s why I continued to hang in there.

And I am a person who has Hope – a lot of hope. Which also involves Trust in God, Jesus, and the Holy Spirit.

Also, being able to talk to friends who understood what I was going through. Being able to share, being understood. Caregiver websites have helped through the years also.

Thank you!

Catherine L. Ford-Barbiero

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