Carnivore Dreams – Parkinsons


I’m not sure if my Einstein quote is directly pertinent to my upcoming rant–it’s just a sentiment about synchronicity that gives me comfort at a time I need it–an echo of Jung’s sentiments about circumstance.

I’m taking care of my dad now for three months, two here in his home, since he has gotten ill with pneumonia and worsening Parkinson’s disease.  He’s 87.  I give up my life to move in here with him so he can remain at home and not have to move into assisted living.

One has to wonder if any good deed goes unpunished.

I reflect back:

He’s lucid some days and not so on others.  Since Jan. he’s had over 12 episodes of low blood pressure/dizziness, six of which resulted in actual falls–one where he hit his head on the side of the rv trailer and we spent the night having cat scans and one he hid from us where he hit his face/head on the kitchen counter and there was so much blood he had to have carpet cleaners in and it still looks like the scene of a murder.

Still,  though he’s also had a mini-stroke in the last four years or so, and has been diagnosed mildly cognitively impaired, he can seem very with it, and as one might expect is in denial about the necessity of losing some of his independence–and I seem to be the one taking it from him.

I love my father more than anyone on earth.

I’ve been the one arguing for his independence as long as I could, bought him a road-ready golf cart with money we don’t have, spent money we don’t have to send him to Florida the last four or five years, kicked in monthly to help him with money.  My brother has as well.  Now I have the horrible task of trying to determine if he should be driving or what, trying to get him to adapt to these balance/blood pressure issues.  It’s absolutely horrible to not know what to do and when you should intercede so nobody gets hurt–him or someone else.

Meantime, my father, brother and I contact an elder law attorney trying to find out information we need about future medicaid eligibility, how his reverse mortgage and annuity would interact with it–all so I can keep him home and he won’t have to enter a home.  Instead of giving us information as a family, the guy sets himself up as “representing” my father–who never asked for any such thing–so I can’t tell if I’m getting all the information or not.  Our goals are all the same, his, my brother’s and mine–and the guy seems to have set up an adversarial situation that didn’t exist. Attorneys. What assholes.  I understand them talking to him privately about signing a power of attorney.  Mind you, my father has little money left and no equity in his house. But nobody asked him to “represent” anyone–and I now can’t tell if we all have the information to make the best decisions.  They talked to him alone and he can’t comprehend things the way he used to.  he can’t get words out anymore.  His short term memory is shot.  All this was six weeks ago, and I’m waiting to get some help in place so I can have time away–get some kind of help with this.

My sleep is disturbed with him pushing his emergency button or hallucinating in his sleep, waking me up.  He might sleep until 10 or get up at 6 and start taking shower — removing his oxygen which causes his saturation to drop into the low 80’s (he also has COPD).

I’ve had to take over paying his bills because he’s getting too confused and can’t write properly.  He’s asked me to, mind you.

My husband comes up from downstate on weekends which helps, but I also have a child with Downs to care for.

Then I have a neighbor who has been present when my father had two dizzy spells–one that required wheel chair assistance at his cardio appointment– who knows all the background though hasn’t seen an actual loss of consciousness and convulsions– and comes over and gets him drinking gin again every day.  Mind you, I do not tell him he can or cannot drink, he can drive or not drive. I talk to him with respect like I always have.  He has been included in every bit and all the planning.  When he’s been really bad, I’ve tried to get him to use a walker or asked him (if he’s going to drink wine) to stand by his chair when he stands up or let us steady him.  He resists much of this.  But on top of this neighbor getting him to now drink gin every day (dizziness two out of three times since he drank it where he almost fell–alcohol, a big meal, sitting in the sun all cause orthostatic blood pressure drops which can result in it dropping below 90/40), this guy tells me that if I don’t understand there’s “quality of life” issues, we will end up “hating each other” and “you’ll definitely hate yourself.”  He tells me it is all about “being in control” for me.

When he looks at me, he says, he sees “anger.”  He doesn’t see fear, worry (when my father passes out, he also has convulsions–he’s a big man at 212 pounds and I am alone with him most of the time and weigh 119).  He doesn’t see how upsetting it is to not know what to do or to have to be in a position of taking away someone’s dignity — he sees a control freak.

I don’t want to watch him die this way.

I told him to buzz off and stay away–now I have a father drinking hard liquor every day who had no business doing it.

And all this is mine to handle alone.  My “quality of life” isn’t even considered–by anyone.  I’m not a nurse.  I’m terrified every time he has a spell like this –another one tonight.

So I’m alone almost all the time,  physically alone, but I’m emotionally alone.  My brother called the attorney and told the guy I needed help and we needed this information–information he could have gotten within a few days.  That was a help and the guy claims he will get back to us first of the week.

My father is understandably upset.  He doesn’t want to die and he wants to wake up tomorrow with all his faculties and nobody would like that better than I do.  I’ve started him on Berberine and gotten his medication to him properly (when my brother took care of him, the pills were all wrong, doubled up,missing) and he’s doing better, stronger.  But Parkinson’s doesn’t completely disappear and balance and low blood pressure issues are unpredictable at best and ongoing.  Watching him weave around, wrap his oxygen tubing around his feet, not realize he’s wrapping it around things–the whole thing is an accident waiting to happen.   I know my father is frustrated and at times I imagine that to him I am the personification of what he’s losing, yet I do not think my father “hates” me or “blames” me, but he certainly doesn’t seem appreciative, either.  He’s never thanked me for doing this. And that hurts terribly.  And he’s always been a chauvinist. And of course, people don’t see how conflicted and hurt and frightened I am–they see anger and control issues.  Only they are not there when he passes out and has convulsions. I’ve been alone twice.

I’m the one making the sacrifice to keep him out of a home, but I admit I am finding this a tall order with little emotional support to date. My other kids try, but they have their own lives and are not close.

What is the most incredible is being told how I feel–I’m angry.  ( I’m not “angry,” I’m sad, alone, frightened, conflicted, and I’m tired–I can’t tell you how tired I am).  But I am not angry.  And to be told the person you are doing all t his for is going to “hate” me for trying to keep him safe or at some point, having to be sure nobody else gets hurt.  That is something a person really wants to hear spoken by someone who has never cared for anyone, not children, not parents.  I think his dog died once.

This is something I wouldn’t wish on my worst enemy.  But even more than this, I now have to deal with Dad drinking hard liquor daily when he likely should be drinking nothing or a touch of wine here and there.

And for all these sacrifices, I get to be demonized and character assassinated.

If I get out of here some weekends, it will help, and that may happen within a month.  And still, I feel synchronicity about the whole thing.  I sleep now in my mother’s bed (she passed away in 1994), and sometimes I feel her near.  I dream now about dancing all the time, different versions–a dream about dancing in a recital woke me at 3 a.m. and got me recording all this–but not enough emotional clarity to see the light at the end of the tunnel.

Not yet.

I’m groping in the dark, one foot shuffling in front of the other-something I once described as the writing process–now seems to be how I negotiate every day.

My writing and research?  What writing and research?

I’ll stick to carnivore this week and hope it helps my mood as it normally does.

Pictures of my garden soon–one dreams of gardens.

I’ll try to sleep again — keep a good thought.



2 thoughts on “Carnivore Dreams – Parkinsons

  1. I’m 50 and I take care of my husband (58), who has suffered from dystonia and Parkinson’s-like symptoms since a bout of herpes simplex encephalitis that about killed him between 2007 and 2008. Fear, exhaustion, and loneliness are my constant companions: NOT what I’d planned for or ever expected. I try to make sense of things by reminding myself how strong this burden has made/is making me (and it has), but then I worry that I’m going to need this new-found strength for something even more horrific.

    Reading your blog is a help. It’s nice to know I’m not alone. God bless.

    1. Hi there–I had no idea herpes could lead to Parkinson’s? but other than pesticides, they don’t really know, and I suspect many things could be a trigger. I suspect food additives as well. my father probably had it that young, but we didn’t put it together until he was in his 60’s. But thank you for the comment and I’ll return the sentiment–it’s great to know I’m also not alone! It’s hard enough to deal with it and have to deal with criticism on top of it, judgments from people who are not living it–as if we as caretakers don’t empathize with changes in quality of life a Parkinson’s person suffers. Many people don’t think of the challenges and quality of life of the care-taker–the fact that they have to deal with the dystonia, balance, blood pressure and much more. Exhaustion is probably the hardest. But yep, I also have a son with Downs and another recuperating from testicular cancer and one never knows when it could get worse and we also know there are challenges other people have that are even worse than yours. It’s a moment at a time. So thank you much for the post! God bless you.

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