The dementia is taking her away. He leans in to kiss her. Ever so quietly I hear her say, ‘I love you,’ before staring into a place only she can see.

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Life as we know it has changed, and we are tired. Last week at this time Dad was getting ready to head into surgery for 2 of the 3 hernias he has, which have been causing him a lot of discomfort for the past month. When we arrived at the hospital everyone there was helpful and friendly, which helped put him at ease. He was upbeat and ready to feel better – and so were we. Finally, he was going to get some relief from feeling so uncomfortable for the past few weeks.

Little did we know it was the beginning of “Hell Week” for us and for him…

I guess we should have asked more questions or Googled what happens to seniors when they have surgery. We did not. It appears that was a BIG mistake.

Elderly man lays in hospital bed with thumbs up before hernia surgery
Becky Gacono/Our Journey Through Our Mom’s Dementia

The surgeon shared with us that the surgery went well. The incision between his ribs in the middle of his abdomen is about 5 inches long. He said Dad would stay in the hospital until Tuesday (5 days), then be moved to an inpatient rehab center. Seemed like a good plan. But we were blindsided by the removal of the kind/nice/reasonable side of my father’s brain the surgeon failed to mention they had removed in addition to fixing his hernias. It started almost immediately when we walked into his room following surgery. He was trying to sit up and wanted to go home. “No Dad. Surgery went well. You need to rest.”

It is 7 days later, and all I know is – I need rest. Every day in the hospital he was mean, unreasonable, confrontational and wanting to go home. It made for miserable (there, I said it) visits, and a test of my sister Mary Ann’s and my patience (and she has the patience of a saint). He repeated things over and over again and it went something like this… “Why can’t I go home? When can I go home? I’m going home.” There was no reasoning with him.

One thing I do know is NURSES ARE NOT PAID NEARLY ENOUGH! Not only do they have to be on top of caring for their patients: medications, incisions, bodily functions and anything else thrown at them, they also have to put up with patients like Dad. The advantage I have that kept me from losing it with him is I love him and he is my dad. But to a nurse – he is an old man that is miserable, grumpy and working extremely hard to assure they do not have a good time on their shift. YET, they are kind, patient and continue to care for him, even against his will. I did thank them profusely and delivered a large platter of baked goods.

As people asked about dad and how he was doing and we told our war stories, we realized we may have jumped the gun on the lobotomy theory. We finally Googled it and found a lot of information out there about side affects/reactions after surgery – especially in seniors. Anesthesia, pain meds, being out of his normal environment, stress, all those things can bring on the side affects he was exhibiting. We felt better knowing what he was going through was normal, but I have to be honest – it has not made it any easier to go through on a daily basis.

This past month mom has deteriorated significantly at a much more rapid pace than she has since the dementia slowly started taking her away from us 9 years ago. She is no longer speaking in complete sentences. She stares a lot. She is up often throughout the night. She pinches her lips closed and doesn’t want to take her pills. She is slipping further and further away. When I close my eyes at night, I see her sliding down a hill and she is sliding slowly and I am waiting for her to slide past me so I can grab her hand. Then as I reach for her, she starts sliding faster and I am trying not to panic because I am afraid she is sliding too fast and I won’t be able to grab her hand in time to make her stop – to make IT stop. I open my eyes so I don’t have to see how it ends.

Elderly man who just had surgery sits in hospital gown reaching for wife who has dementia
Becky Gacono/Our Journey Through Our Mom’s Dementia

I imagine Dad closes his eyes and sees his own version of the nightmare that invades my darkness. He is alone in his room wondering how she is. “Is she OK? Who is watching her?” Who could possibly love her like he does to know what being apart is doing to his heart? He opens his eyes and he knows he must go home. And so it begins once again. He doesn’t understand why no one will listen. Why no one realizes how much she needs him, and more importantly, how much he needs her.

Woman with dementia sits in wheelchair holding hands with husband who just had surgery
Becky Gacono/Our Journey Through Our Mom’s Dementia

So we visit once again, this time at rehab – his new home for the next 1-2 weeks. He is arguing with anyone that enters his room, especially Mary Ann and I, about going home to be with mom. Mom sits in her wheelchair staring at nothing. She closes her eyes when the arguing is too much. He calms down and tries to tell her how much he misses her. How he wants to come home to be with her. How much he loves her. She open her eyes. He leans in to kiss her and he waits for a second, but I imagine an eternity, before she leans forward slightly to kiss him. And ever so quietly I hear her say, “I love you,” before staring into a place only she can see.

And in that moment, I understand completely his maddening need to come home.

Elderly man who just had surgery kisses wife who has dementia
Becky Gacono/Our Journey Through Our Mom’s Dementia

This story was submitted to Love What Matters by Becky Gacono of Annville, Pennsylvania. She is chronicling her mother’s dementia journey on their Facebook page, Our Journey Through Our Mom’s Dementia, and in a series of posts for Love What Matters:

‘His love for her is palpable’: Doting husband’s explicit instructions for wife with dementia’s morning routine

‘I’ll get to her outfit later’: Daughter’s humorous attempt getting her mom with dementia to the doctor

Wife with dementia ‘listens’ to husband’s story for 15 minutes before cracking a joke, which ‘gives him a sliver of hope she is still there’

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