Plodding on

Watching your dad slip away very, very slowly through a process involving great suffering is beyond hard.  I think I’m getting toughened though.  Things that would have, at one time, sent me into deep grief I now handle fairly easily.  Things I just wouldn’t have handled at all, I now do, pretty effortlessly actually.  Mom stated the other day, “I’m numb”.  Yea, I understand that.  I sort of am too.  Dad’s ride is an extreme roller coaster.  Ups and downs, ups and downs all within 24 hours.  We’ve seen it where he’s really, really suffering, very confused, not able to self direct at all or care for any of his own needs in one portion of the day, only to have him be 100% improved 6-8 hours later.  We’ve seen medicine work like a charm for his leg and body spasms and then, seemly, seen the same medicine make them way worse, all within 24 hours. Those spasms/contractions are what cause dad his most intense suffering.  The pain, at times, is utterly indescribable.  We’ve taken pictures of his legs totally black and blue with bruising, looking like someone took a baseball bat to him, only of course, nobody did.  It is all from his muscles spasming and contracting.  His muscles go rock hard and clamp down repeatedly, tossing his body around like a rag doll.  The other source of his intense suffering is some form of phantom type pain in his buttock.  He’s often convinced his backside is one big piece of raw wound.  The pain can drive him nuts at times.  Sometimes, he is sure if we’d just take him somewhere, they’d be able to fix it.  That there is no wound back there just doesn’t make sense to the amount of pain he has.  I often wonder if somewhere in his brain it’s remembering the days of his bed sore.  The one that almost killed him back in 2007.   Dad continues to go through cycles of sleep/no sleep.  Many times he has gone 4/5 days and nights with no more than 15-20 minutes during a 12 hour period, to sleeping all day and fairly well through the night.  The sleeplessness continues to aggravate his confusion, of course.  When he’s sleep deprived, he can really lose all touch with reality.  I continue to feel that dad is remarkably ‘with it’ for someone with dementia.  Yes, there are days where it’s crazy.  One day he asked me if I’d ever met my husband’s other wives.  It was such a startling moment that I paused and just looked at him, he was looking at me and could tell something wasn’t correct in what he said.  On a good day, I could have jokingly said, well, that explains a lot, and he would have gotten the joke and we’d have laughed and moved on. On a bad day, he’s unaware that he said something that didn’t make a lick of sense.  Sometimes a whole day goes by where everything he says is spot on, other times, you can at least follow his logic, if it is a bit confused.  Then there are the times he can talk pretty crazy and it continues to be pretty funny.  Honestly, yes, it’s heartbreaking to hear your dad talk craziness but, keeping it real here, it’s also funny especially when he’s laughing and laughing about whatever it is he’s trying to tell you, that doesn’t make a lick of sense to you, but he sure thinks is hysterical.  And then there are the super funny times when he’s watching TV.  He loves commercials, which is a big switch from reality anyway.  There are commercials on today that make your eyebrows meet your hairline.  Dad’s commentary on commercials is usually very, very funny.  The things that he ‘gets’ from them makes you shake your head and wonder…how in the world?  The things he believes to be real are equally mind blowing.  It is during these times where I become most acutely aware of just how deep dad is into this brain disease.  My dad’s a really smart guy.  The guy watching these commercials, not so much.  He is, however, entirely lovable.  I’ve read about patients with dementia who become sneaky or mean or just hostile even.  Dad is none of those, ever.  Occasionally, he’s picky and gripes but, interestingly enough, he reserves his worse behavior for mom and he hasn’t yet lost the knowledge of how much he loves her.  When she’s gone, his constant question becomes, “where’s your mom? When will she be back?”  So, he keeps plodding through this illness and we keep trudging along beside him.  Winter is on it’s way here.  You can feel the crispness in the air.  Mom’s garden, which she ingeniously planted in cloth bags out on her patio, is looking frost touched.  Dad continues to talk about how smart she is and how she really is the farmer, not him.  He’s forgotten he use to farm the field at the bottom of the hill.  Yet, we haven’t and never will.


About sehanna

I'm a stay at home wife and mom of three, who enjoys my 'job' very much. My children are getting older and beginning to stretch their wings, which is leaving me more time to pursue my interest in writing.
This entry was posted in Aging Parent, Care taking, children, Family, LBD, Lewy Body Dementia, marriage, parenthood, positive attitude, reflective, Spiritual. Bookmark the permalink.

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