Reality Check … whose reality???

I wrote Dad a letter. Told him that striking me was unacceptable. Asked him never to do it again. I just wanted a record of it, I wanted to protect myself, even though I knew the effort was futile.

Dad’s response to my sister is that I’m wacko, completely off my rocker, that the incident never happened. I am not surprised by this.

Dad appears to have “lost” the two weeks between Mom’s passing and Thanksgiving. This has surprised him, but none of us. One night when Mom was in the ER for a few hours, he thought it had been months. He has been regularly confusing his time lines and not remembering when significant things happened. Unlike Mom’s dementia, he cannot accept that he is not correct, whether he is unwilling or unable, I don’t know.

His reality, on so many different levels, is not the same as ours.

He has had a bunch of doctor’s appointments since Mom’s death which he has either taken a taxi to (once), or my sisters have taken him (I can’t do it anymore, he is too angry with me, I challenge his independence the most). One of his issues is that he has an abdominal aneursym. This would have already been operated on if he were healthy, but he is not healthy, and it sounds like it has grown further.

After his last operation, he woke up with full blown Parkinson’s and unable to walk well. At least they diagnosed it as Parkinson’s. It’s pretty clear that if he has an operation, chances are that he will never be able to live alone at home again. (He shouldn’t be alone now!) In his reality, he will have the operation and heal up fine and all will be well. Legally, he is in full control of his medical decisions, though he has lost a lot of executive function. He will make his decisions based on his reality. Very worried.

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Elder Abuse

I’ve debated a lot about whether to write about this, as I believed we failed my mom in many ways, in spite of how hard we fought for her. This topic hurts…

Dad was her “caregiver”, but he was not able. He has Parkinson’s. He has funny ideas about what an acceptable norm is – always has been that way.

During his care, Mom was not fed well, her diapers were not regularly changed. She was not cleaned up. She was often left for 8-12 hours on the floor when she fell, though on better days he did call us after about 5 hours, sometimes sooner (but not usually). He would put a blanket over her, bring her cookies, and sit with her. I’m sure there is more that we would all cringe about…

Dad would not bring in care. Later, Dad often turned care away…

When Mom was still pretty able-bodied, when I would take her to the doctor, she would say that her husband abused her. She may have even said beat her, I don’t remember exactly. But she would also say similar things about us kids – how mean we were to her, and things we said about her, none of which were true.

Dad was never the violent type, but he did always have a mean verbal and controlling streak. We never believed that he was physically abusive at that time, and still believe that. We did however, always believe that mom felt abused by Dad’s verbal treatment – he has done that to all of us.

The verbal abuse dramatically increased as he developed his own dementia.

Mom fell one night last summer, and ended up in the ER and a facility. I think this was the second to last facility that she was in. Her kidney values were elevated, she had a UTI. They thought she had pneumonia.

But she also had a really bad black eye.

We all know how easily the elders in our care bruise, how fragile they are. We, us sisters, thought a lot about this black eye. I firmly believed that if it was caused by Dad, that it must have been when he was trying to help her up and couldn’t and slipped. We assured the social workers that it was not something he would have ever done, but we were careful not to say we knew for sure. There was also the chance that she hit it on something during the fall.

I would like to still believe that.

Shortly before we kidnapped Mom from Dad and placed her in a facility, Dad let slip, while talking to my sister, that one night she was yelling so loudly in the middle of the night that he had to stick a washrag in her mouth. I do not have the words to describe how one feels when they hear that coming from their demented father, knowing that the victim was their demented mother. Horrified might come close, yet still inadequate.

It was not unlike Mom to yell, or be really difficult in some ways, as her version of dementia. But I also believe that some of that was the only power that she had, and she did use it. Us girls could usually talk her down, but my sister had been hit on several different occasions.

There is still some question of whether the neighbors called the cops on them at one point. We know that the night around there was crazy and difficult – frustrating before their dementias got bad, as Mom was a night-time wanderer, always. As Dad became less able, and more frustrated, and it was unsafe for her to wander, this became a dangerous mixture. She also had nightmares, and often the illeostomy bag would break in the middle of the night (huge stressful mess). I don’t think we will ever know half of what went on in that house.

So, today Dad hit me, struck the coffee cup from my hand. I do not know what he was aiming for. I was walking between him and my sister, trying to stop them arguing. He continued to try to hit me with his walker. After a minor scuffle between us, I asked him if that’s what happened with Mom, that he got mad, and hit her, like when he got mad and stuffed the washrag in her mouth. I was seething and unkind. He was stunned, had no response other than to ask me who told me that. I basically repeated what I said, then turned to pack up and leave.

His version, as told to a family member, is that he confronted me about not helping with Mom and so I tried to hit him.

Now, is that dementia, or is he just an asshole?

We didn’t have a service for Mom. We were supposed to do that today, just have a small family gathering to remember her with love. My niece and I had gathered some old photos and I made a slide presentation, to celebrate my mom. I just wanted them to stop arguing, so my sister wouldn’t have to leave and we could remember Mom, the way a normal family might grieve. #Fail

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.

Prognosis, part II

This morning we were given the prognosis of hours to days, but we are back to evaluating day by day, with a prognosis of days. The hospice team will be visiting Mom in the facility each morning to evaluate.

I am trying to wade through this experience with as few regrets as possible, and there will be time to work through those later.

Mom has been having seizure-like activity. She has not been eating, and lately not able to drink. I asked about IV fluids, which are controversial in hospice, and, ultimately, Mom just wants to go to sleep and not wake up, and she would not tolerate anything by IV. My sister and I have power of attorney for healthcare, but I am the primary medical manager, and I will honour my mom’s wishes, for her. In a sense, she has nothing wrong with her, yet everything, she is just shutting down. I guess the process that causes dementia must be contributing to the shut down, together with lack of nutrition and fluids due to decreased hunger and thirst when she was able.

Mom is mostly comatose, with some response to voice and activity, moving in bed a small bit, a few smiles for the nurse this morning. We are instituting comfort measures – Ativan for the seizures, and morphine for some pain she is having. In addition to the seizures, she has a terrible wound that must be very painful. She won’t be able to interact with us, but we had already lost most of that, and her comfort is most important here.

When she entered the facility, what was clear was that she just wanted to sleep and not wake up, and she didn’t the family making a fuss. She was ready for the next phase of her journey.

I told her today that she can let go, we love her, we’ll be okay, and we’ll take care of Dad. I know she worries most about leaving Dad alone after 61 years of marriage – she knows how helpless he is. I asked my old dog, already on the other side, to help show her the way.

As expected as this is, and as much as Mom wants this, it’s still really hard.