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.

Legalities

My parents, because of my dad, were woefully unprepared for the legalities of aging.  They did not have a trust, nor a will, and none of us had power of attorney to act on their behalf for anything.  This was not because we did not want to get it done, but because we couldn’t get Dad to cooperate.  He still has no will (the lawyer quit on him because he wouldn’t cooperate).  We only have a DPOA because APS come in for a year and twisted his arm, though he did revoke it at one very important bank, with the help of one very unethical hired caregiver.

However, even with us having a POA, my dad is still legally able to act on his own behalf, unless we go to court and get a court order to be his guardians and not allow him to make these decisions because he is not competent.  We have been unwilling to do that, because of the fight and the rift this would cause, as well as the expense.  We also have previously asked his PCP for note and she wanted the full neurological workup, which my dad would not do.  In fact, getting him to any doctor’s appointment is very difficult, particularly with his heightened paranoia.  We have been legally stuck, trying to manage however we can.

I believe, that we need two doctors to sign non-competency.  I need to revisit that now.

In June, we had an appointment with Dad’s vascular surgeon.  Dad has a growing abdominal aneurysm which, in a healthy young individual, would need to be operated on.  However, Dad is a terrible candidate for surgery, which he doesn’t understand.  For years, he has been unable to make proper evaluations and decisions, including for healthcare.  Finally, in June in the middle of the appointment with the surgeon, the doctor turned to me, and said, “Oh, there’s no competence here.”  Yep, finally, we have a doctor willing to say this out loud.  So, this is now noted in Dad’s record, also that he is not a candidate for this surgery, even if the aneurysm bursts (which was agreed upon between the doctor, Sister and I).

Dad actually had an appointment with his PCP the other day.  When Sister went to pick him up, he talked about not being able to get any sleep because someone kept calling all night, and he said they kept singing itsy bitsy teeny weeny yellow polka dot bikini (there were no calls on his phone log on the website).  He kicked my sister out of the appointment, but we believe he had similar incoherency when talking with his PCP.  My sister asked the doctor to make good notes, and the doctor seemed to understand what was meant by that, so I am looking forward to getting the notes from that appointment.

With Mom’s dementia, she welcomed help, she mostly trusted us, and even though she had fears, they were not fears of us.  This mirrored how we interacted with her throughout her lifetime.  With Dad’s dementia, his paranoia is overwhelming, and his hallucinations are more damaging.  He imagines terrible things about us and what we are doing.  Being able to manage things for him, and to act on his behalf, has taken up so much of our energy, and he has made things so difficult.

Everyone should ensure that their loved ones are not in this position should something happen to them, please have your affairs in order – who is going to take care and advocate for you, and do they have the authority to do this????

I follow the blog of Kay H. Bransford:  Dealing with Dementia (https://dealingwithdementia.wordpress.com/).   In addition to her insightful posts about the journey through dementia that she took with her parents, she discusses many important aspects of organizing information that will help people take care of you or your affairs.  I definitely recommend her blog.

On haitus

I’ve been taking a break from this nightmare since January, for the most part.  Since Dad attacked me on Thanksgiving, I’ve just been handling some of the finances, and not dealing with him personally, except for an appointment with his vascular surgeon, which I should probably document in another post. Dad has recently slipped further down the rabbit hole, and I will have to jump back into the game, and I’m trying to emotionally gear up for that.  My Sister has been a lifesaver, and between her and her kids, things have been as stable as they could be under the circumstances.

I guess, for the record, I wanted to give an example of some of his delusions.  He is worse now.  The reference below was back  February, a few things that he said to one of my sisters, who had bought him a tape recorder to record his thoughts (he really is not able to work the machine now).  She described the stories of the day this way:

I guess he rambled on for a long time about when mom died.  In his story he was there that morning, held her hand as she passed, closed her eyes, cleaned her up and then took a taxi home. [Note: he was not there when Mom died, nor did we bring him to see her.]

In his story on one of the nights he also had a fight with the ‘big german male nurse’.  He had jumped over the counter and had pinned his arm behind him after he had slapped mom.  Dad said that he made the nurse ‘give up’ and apologize to mom for slapping her. (he did mention that maybe he dreamed that, but tended to believe it was true) .  [There was no such nurse there, but there was a female nurse that spoke German with Mom, who was Austrian.  He has many stories of how he rescued Mom from (nonexistent) abuse.]

Mom often understood when she didn’t understand or was hallucinating, or we could tell her when it was the dementia, at least until near the end.  This is not the case for Dad.

Thanksgiving, revisited

This is a messy situation, that requires far too many words to bother reading, but I just want someplace to write it down, to document, to witness, and to have it so I can look back and remember what really happened…

I started this on 12/27/2015 and finished it today, 3/5/2016. It really is much too long…

First some history. What really happened on Thanksgiving will follow.

HISTORY

Dec 2013 Mom had fallen at home, in the garage, some time during the night. My dad found her later, but because of his Parkinson’s, he could not help get her up. He also felt that she should be able to get up on her own. So he covered her up with blankets, and sat there with her. He called me maybe 8 (?) hours later and left a non-descript message at work. I am not good with messages at work, they sit on my phone usually, because I teach and am in and out of classes.

My sister ultimately got over there and called 911 after seeing what the actual situation was. Because of staying on the ground, Mom now had rhabdomyolysis: http://www.aafp.org/afp/2002/0301/p907.html , including acute renal failure. She was seriously ill, and we were all preparing for the worst.

But Mom was a woman with nine lives, and much to everyone’s surprise, she improved, her kidney values normalized, and, against the doctor’s recommendations, Dad chose to have her brought home for us to care for her. We had a conversation with the doctor – Dad, Sister, and I. My sister, in spite of working from home and five kids at home, was going to spend the nights at the folks’ and stay there and help. I remember the doctor warning us that this is a bigger job than we realize, and don’t hesitate to bring in help. (He was right.) I also remember him being very angry with my dad for not calling 911 and providing adequate care for Mom. Skilled nursing and an increased level of care was recommended, but my dad resisted, was defensive about his (lack of) actions, and us kids really didn’t fully understand Mom’s limitations at the time.

The doctor was right, it was a bigger job than we realized, and my sister couldn’t manage it (none of us could have). Aside from their physical demands, my folks were difficult, and my sister’s job was in jeopardy. Dad would not bring other care in. So, Sister went home, and all three of us sisters (and BIL) did what we could, and we were all exhausted, running on fumes from the years of care and the need for ongoing increased care.

Mom then fell Feb 2014 and hit her head and needed to be taken to the emergency room. The staff there was great, Mom checked out okay, but she was a mess in general (weak, confused, unkept), and they found some way to get her admitted to a care facility.

At the facility she improved dramatically, a testament to what good care will do for a neglected senior. At home Dad worked under the philosophy of “use it or lose it”, so she was forced to try to do a lot of things for herself that she really needed help with, and she suffered because of this. At the facility, she was sleeping, she was fed, and someone else was caring for her illeostomy bag. She even made friends, which was a first for her. She was relatively happy there.

I remember at the facility, after she had improved, she held my hand while watching Dad talk to someone. She was telling me that she understands it’s time for her to be on her own now, and Dad won’t understand that. She knew she shouldn’t be at home anymore and was ready to be properly cared for. She seemed relieved.

Dad’s plans, however, were different. He kept telling us how Mom kept talking about wanting to come home (not true), and how terrible it was at the facility (not true, though none of them are perfect). This might have been the first time we profoundly noticed that his perceptions and interpretations of events were very very wrong. We had no clue that that was going to get much much worse.

Dad refused to provide outside care for Mom, and was still the one making the legal decisions for her. He decided to take Mom home AMA (against medical advise). He wanted all of us to divide up the 24 hour care.

We pleaded, we cried, we felt terrible that we couldn’t provide this for our mother and we had to stand up to our father to protect what little we had left of ourselves after giving more and more each year. It fell on deaf ears, and that time, including a terrible emotional meeting with the social workers, marks the beginning of the end of who my father was.

FOR OR AGAINST?

After that big emotional scene, Mom came home, we all did what we could, and it was a terrible situation. The facility said that they would report to APS (Adult Protective Service), and they didn’t. I should probably note that this was very tough on Dad too, but he was playing the role of hero in his eyes and refused to make both of their lives better.

After the facility, I had a binder of information about how we might be able to bring in care for Mom, about looking for facilities, etc. I did what I do, I researched everything I could, knowing that they didn’t have much money, and there were two of them whose futures had to be planned for. (Dad recently bragged that he hadn’t bothered to read any of the information that I had brought over.)

After another episode of some sort, and Mom is in the ER again. This time, at my encouragement, they do refer the case to APS. Their involvement starts Dad’s mindset, you are either for or against me, and you can’t be both. So, if you are not doing exactly what he desires of you, you are officially against him.

APS tried for a long time to do what they could. They got Mom a grant for a home aide several hours a week, they strong-armed him into signing health and financial DPOA’s. We all survived.

That summer I also discovered that he had a chunk of money that he had been keeping secret from everyone, that could have been used to provide some care for Mom, without compromising his future 😦

But I was the most proactive one doing research, so I was most against him. And from that time on, he became meaner and meaner towards me. First it was a bit snarky, and then it got to the point I wouldn’t go over there alone, I needed other people there so he would be halfway decent. When we had to take that chunk of money to provide care when we kidnapped Mom and placed her in a facility, I was the one that took the lead on the financials, I am the most “not on his side”. (Thanks to Sister and social worker for the actual kidnapping!)

THANKSGIVING

Thanksgiving was difficult. Mom died on 11/6. She was cremated, and I hoped to have a day of memory on Thanksgiving. My sister brought food, I put together a tribute slideshow, etc.

Dad was starting in on Sister about the money that we had to take from his control to care for Mom. We all were just settling in, but Sister started talking about leaving (what we do when Dad gets mean like this).
I walked over between them, with my arms out in front like a referee, coffee cup still in hand, trying to stop the interaction, and Dad hauled off and hit me. He missed “me” and got my arm and knocked the coffee cup from my hand (thankfully not very full and had a lid). I turned to him and basically said “WTF”, as he tried to pick up his walker and further hit me.

I held his arms so he couldn’t move them, I don’t quite remember what I said then, but I let his arms go (I just kept telling my self not to bruise him or make him fall), and he tried to swat at me several times.

Dad told Sister that one night Mom wouldn’t be quiet and stop yelling, so while he was changing her illeostomy bag, he said he put a washrag in her mouth to keep her quiet.

I then confronted him about the washrag, and his immediate reply was “who told you that?”. I then went off on him, asking him about his treatment of Mom, asking him if he ever got mad at her like me and hit her. I said a few more things about this, and then I just had to leave the room.

We have no proof Dad ever hit Mom. Mom says he did, byt we didn’t believe her, because she also said that we would hit her, and we know that wasn’t true. We struggled with this A LOT….

Thus was the end of the Thanksgiving as the food was proportioned, packed up, and we all left.

POST-INCIDENT

Dad has memory problems, and a weird hero complex. As he tells this story to my nephew, Dad got mad at me about Mom so he started yelling at me. I started to attack him and he had to restrain me by holding my arms (which he could not physically do). I responded by biting him. To get me to stop biting him, Dad started head-butting me, and then I responded by hitting him twice, really hard in his gut, hitting (aiming for?) his abdominal aneursym. It’s a fantastic tale he has imagined.

He explains to all now that I have gone totally insane, and I think he really believes that.

EPILOGUE

I don’t think I’ve seen Dad since this incident. To add to matters, he finally discovered that I had taken the rifles and ammunition from the house, as a precaution. I am not sure he and I will be able to speak until he actually loses enough memory to not know who I am. I am clearly, in his mind, Against.

😦

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

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.

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.