Well, it’s time.

Well, it’s been about 6 1/2 months since I’ve posted here, and it’s time to catch up a bit.  I had a reprieve, working mostly in the background handling the finances, while Sister mostly handled the in-person things, like shopping for meals, etc.  I really needed that break to heal some from the trauma of fighting for Mom’s care and her passing.

In the last months, Dad has become more debilitated from his Parkinson’s, and had fallen several times.  At the end of February he was down for 24 hours.  We took that opportunity to get him to the ER, with the hope of then moving him to a facility, since it was LONG overdue.

The hospital is a funny place.  Sister told me that the doctor said only one heart enzyme was slightly elevated from the fall (falls in elderly, when they are down a long time, cause muscle breakdown called rhabdomyolysis and can be fatal), so I didn’t track down the doctor and get all the specifics, we had been through this before with Mom.  However, when I ordered copies of all the reports and bloodwork after the hospital visit, there were all sorts of things out of wack.  It’s always so disturbing  when the doctors don’t tell us the whole truth, but I digress…

We have found a wonderful Board and Care for Dad.  They have a 24 hour wake staff, there are only 6 residents there at one time, they have hospice waivers, and there is a warm, home feeling to it.  We found the place through a free agency that knew there was an opening in the facility.  We are fortunate that Dad has a bit of money for this, and we have to start working on selling the house.  The amount of things that need to be done is daunting and I walk around with a pit in my stomach almost all the time right now.  That will get better as more of the business side of this gets handled, I hope.  Ironically, I’m sure that Sister has exactly the opposite feeling, she was nearing a breaking point with most of the burden for caring for Dad resting on her these past months.

The extra expense of this particular B&C now is worth it, while he is still mobile enough to cause difficulties.  As much as he is pushing to get home, he has admitted that the place feels a bit like home – the people are caring, the food is good.  Mom needed skilled care, and we are fortunate that Dad is able to be in a Board and Care, for now at least.  If he didn’t like the place, he would raise hell and either get kicked out, or have to be drugged 24/7.

Dad has been accepted into hospice.  I am confused by this.  His qualifying disease is advanced Parkinson’s, though nothing else seems to be really wrong with him (well, except for a huge abdominal aneurysm).  I don’t know if there is something they aren’t telling us.  I don’t know whether to expect months or years.

I hadn’t seen Dad in quite some time due to his abuse after Mom died, the worst directed towards me.  I knew this was from his disease process, but since I triggered him, and there was no benefit to either of us for me to be near him, I stayed away. We made amends when he was in the hospital.  There were tears from both of us.

Not having seen Dad, I was surprised to see how far his dementia had progressed, and he is mostly gone forever.  I thought maybe it was hospital delirium, but now I see it’s not.  It’s a funny dementia, and it’s probably the case that this is a Lewy Body thing that goes with Parkinson’s.  He knows who we all are, he remembers a lot of things, but he has severe hallucinations and delusions, and they are dark, and he often feels in danger.  It makes me very very sad.  I miss my Dad.

Dad is still insistent about going home and being able to care for himself, and I’m not sure how we are going to address this long term, but, it’s clear, it’s time.  It’s time that he is being taken care of properly.

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Year of Firsts

The first year of loss is a special year. I once went to a yoga and grief workshop. The yoga instructor (also a grief counselor) said that there is a reason why they don’t recommend you make big, important decisions for that first year after you have suffered a great loss, be it from a death, divorce, etc., because there are measurable changes in how your brain works.

So, in the Year of Firsts…

  • Thanksgiving, check
  • Christmas, check

Lot’s of daily things to get through, but I guess the next big holiday will be Mother’s Day…

Your Year of Firsts: http://www.freitagfuneralhome.com/publications/first-year-grief.htm

my dad is a narcissist

I guess dad has always been a bit of narcissist, but Mom took the brunt of it, and she sheltered us from what she could. That is not to say that Mom was perfect, or didn’t make mistakes, but, even as she aged, and before she died, she cared about us, and our lives. In fact, before she started her two days of seizures from which she never later woke up from, some of the last words she said to my sister were not to cry – she didn’t want us to cry because she was dying. (Love you Mom!)

This whole thing is important for me to understand. I always wondered how I could marry a sociopath/malignant narcissist (thankfully, now my ex), and how cliché is it to find out now that it’s probably related to patterns from my father. I had no clue, but I’m thankful for this added perspective.

Information on the web is hard to find, so much of it is extreme, and we weren’t exposed to extreme – whatever dad’s personality issues where when we were young, they didn’t appear overtly destructive to me, but more related to apathy or a lack of empathy, I guess a more silent destructiveness. That is, until now, as dad is ageing. Google narcissism and demetia together, and all sorts of hits come up, mostly things written by adult children trying to care for these difficult elderly adults. There is at least one study possibly linking narcissism to frontal lobe dementia.

Looking at one list, they list that narcissists require loyalty, and they keep score. This hits home – dad is obsessed with whether a person is either “for or against” him. When we argued for care for mom, in his mind, he took that as being “against him”. And he does keep score – that part of his memory is intact. In 2013 when I was actively looking for ways to get mom into assisted living, that was the beginning of him turning against me in an angry and evil way, which has done nothing but elevate since that time.

He also remembers things wrong, but mostly in terms of interpreting interactions incorrectly – usually interpreting them the way he prefers. I’ve seen this consistently with all types of interactions, and is one reason he can’t evaluate medical decisions properly – everything he hears is about how it will work out the way he hopes it to.

Empathy, introspection, humility, evaluation have become nonexistent.

I don’t think of my childhood as being scarred by my parents. They made mistakes, but I found ways that provided me structure and support. I’m not sure my sisters can say the same things.

I understand the person my mom became when she had dementia. I do not understand the person that dad has become, and that tells me that I didn’t understand the person that he was. They say that frontal lobe problems cause behaviour changes, but this doesn’t feel like it’s all just dementia, this seems like more of something that was already in him. I think I have some reading to do: narcissists-suck.blogspot.in

Relentless

The dysfunctionality of my dad – relentless.

Words can’t describe the crazy, because it’s irrational, contrary and mean, and Dad makes sure that his actions are designed to inflict the most emotional pain.

We are still arguing over the money that we took and hid from Dad so that we could take care of Mom. He had forced us into it, refusing to bring in care, and subjecting Mom to all sorts of indignities. Knowing that we will need it at some future date for Dad, we have some in an account for him that is hidden, some will be dispersed to Mom’s beneficiaries (us) when the paperwork is done.

We argued today about the paperwork needed to continue his healthcare. They sent him a Cobra bill, but he doesn’t need Cobra. We have been in contact with the County, and sister took care of the paperwork needed to continue the benefits he was getting through Mom (and we all know that dealing with a govt organization is never jut a quick phone call!). But it doesn’t register with him. Even after explaining it to him, that we have been in contact with the County, we are still all wrong, he is right, and he’s mad that we aren’t doing what he tells us and he still wants the Cobra bill paid.

He struck me today, kinda out of the blue. Ended up just hitting the coffee cup out of my hand, but we had an altercation – he continued to try to strike me with his walker. I contained him, then I blew up at him about Mom, about some of the things he did to her, I think I will do a separate blog post about that (see the Elder Abuse post after this one). But his revision is that he confronted me about Mom, so I tried to hit him.

He has imagined that we all had a meeting about the money and voted, and maybe something about how he was ready to spend it but we wouldn’t let him. None of that ever happened, and to this day, he refuses to believe that we were paying for the caregivers that came into the house, he thinks an outside agency paid. To this day, he believes that he was providing adequate care for Mom, as she was allowed to stay in dirty diapers, not get cleaned up or fed, allowed to stay on the floor for 8-12 hours when she fell, etc. None of that seems to register to him as true or wrong.

When we are little kids, and something happens, sometimes we might make up stories to make it sound better than it was, or as a way to explain it to our parents. It seems like we are in some version of that mindset, but on steroids.

I so don’t understand what is going on in his mind. I don’t understand his version of dementia.

grieving

I have experienced a lot of loss in the last six years, but *nothing*, including expectation, prepares you for the loss of your mother.

I am going through the phases, complicated by heavy demands on my time at work, needing to deal with the paperwork of death 😦 , and my dad. I have had a few wonderful dreams where mom has visited and hold them dear. Sometimes, like now, I feel more detached from the loss (acceptance?), other times I am raw with pain.

I try to respect the emotions of others and how different individuals process emotions differently. I try not to judge. There is a segment of the family that is detached, uncaring on some level. I am putting together a slide show of memories of Mom for our thanksgiving, they will not be participating. Their lack of participation is not about their grief, but about their apathy towards someone they claimed to have loved.

These are the things that change family dynamics forever. I am not angry at them, I just don’t like who they are as people very much.

My Mom

Thursday night, Mom had changed. Her breathing was more difficult, her respiratory rate increased, and she physically looked more gone than here. I asked that the doctor-ordered PRN morphine be given regularly to keep her comfortable.

Friday, 8:50 am, my mom was set free. She leaves a huge hole in my heart, I am lost, but so relieved that she is no longer suffering. It’s over.

I Love You Mom.

Drugs

One of my jobs, whenever either of my parents go into the hospital/SNF, is to make sure the meds don’t do more harm than good.

My mom, used to get delirium during hospital visits, and in SNFs (or at home) she can get agitated. Lately, which seems different than about 5 years ago, they are really quick to use chemical restraints. This is one reason why I say, if I ever land in these places, with these doctors, just kill me and put me out of my misery, because I know I won’t have an advocate, the way I’ve had to advocate for my mom.

The blood pressure medicine amlodipine gave her rashes, leg swelling, and I found her comatose and unable to move after they increased her dosage – big improvement overall when it was stopped. Chlonidine for her high blood pressure, gave her awful hallucinations. In both cases, we weren’t believed that it was the medication, but we were at home, so we were able to stop them on our own.

At the last facility, they gave her haldol. She first lost words – what came out of her mouth was gibberish, not recognizable as words. Things like stroke were considered. When I found her comatose on her bed and unable to move, I knew it was, once again, the meds. At a facility, it’s harder to convince them – they are so attached to these meds.

When she first arrived here at this facility, she had periods of agitation. They wanted to try a mood stabalizer (valproic acid) since she seemed to react to other meds. I didn’t want to okay it, but I wanted my mom to be able to be cared for and she seemed calmer and talkative with it. But I could tell it was too high a dose, since there was some of that gibberish speech, and suddenly a switch flipped, where she would go away for the rest of the visit, and hallucinated, and it was odd. I insisted the dosage be halved, and that seemed to be better.

Three days ago, something similar happened. My sister and I were having a fairly good visit with her, even though often it was dementia speak. Then it all changed and something new happened. She had these seizure like episodes, with leg paddling and strange body sensations that scared her, and strange change in who she was at that time. They were combined with severe and frightening hallucinations – bats and bugs on the ceiling coming at her – like a really bad trip. She would start to calm, and then another one would happen.

These continued into the next day, the seizures at least. I had them discontinue the valproic acid (depakote) the previous night, but really wasn’t sure. Oddly enough, the night before all this started, I had awoken and out of the blue told myself that her meds were not right for her – that inner voice has never been wrong.

I really wasn’t sure, in spite of my commitment to follow that inner voice. When I expressed my concern to the hospice administrator that this was caused by a med side effect, she disagreed with me, and said he felt they hadn’t been aggressive enough with the medication. It’s really hard, when you’re in the middle of all this, trying to follow what you feel is best, and you have to fight for everything, including the appreciation that mom *does not* handle meds well. And you’re really not sure what the right decision is.

Hospice and my sister left the decision to me, about the meds. Against hospice’s better judgment, I discontinued the valproic acid permanently. I okayed Ativan as needed for seizure control (they tell me it works very well for seizures), and we all agreed on the morphine for comfort.

That was all yesterday. She hasn’t needed any ativan because she hasn’t had that seizure like activity any more, from what they told me. My dad prevented her from having any morphine today, but she had some when I got here.

I am beginning to more confidently think that the valproic acid caused her seizures. I will feel bad for a long time for initially okaying that medicine – I knew better, and it robbed us of some time with her. There is also a possibility that the medication sped this process along, encouraging her UTI, and maybe advancing the overall degeneration, which, in some sense, is what she has wanted all along.

These drugs, I really hate them. I hate that my mom was drugged in those last days that she had awake, with a drug that was bad for her. This is one regret I will have to come to terms with, but I think I will ultimately be okay with this. I hope she will tolerate the morphine, that it won’t make her feel a way she wouldn’t want to feel.