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.

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.

😦

So, who’s in charge here?

Mom comes home from the rehab center today – it’s the last day that insurance will authorize.  I guess they call it a Care Center now.  For Mom, it was some much needed rest and recuperation, getting appropriate medication and nutrition, and someone to care for her personal hygiene.  What a huge difference it has made for her.

Dad is her official caretaker, and Dad is of course “in charge”.  He has us three daughters that live locally, and each of us has our own strengths which he could utilize, but he doesn’t, because he can’t.  And I don’t know how much of that “can’t” is actually that he won’t.  We have been blocked at every attempt to help make their lives better, so we are at the point where we must step back, because we can’t do it anymore, and have all been stretched to our limit, and in some cases beyond.

I’m feeling awfully guilty that Mom is returning home to only Dad, I won’t be there today when she is brought home, but Dad has effectively tied our hands.  Parkinson’s is a cruel disease, like so many of the neuro-degenerative diseases out there.  Heck, like so many of the chronic diseases, period.  His feet aren’t the only things that get stuck and can’t move, but the same is true for his mind.  He has always had this tendency, but now it’s front and center, and it is hurting those around him.  Mom suffers uniquely from his incapacities 😦 .   He is unable to provide medication on a proper schedule and to feed regularly, nor provide proper hygiene.  Nor is he willing to bring in help, unless someone does it at no cost to him.   There is no reasoning with him – he cannot process thoughts or emotions, he is stuck, and the place where he is stuck is not a good one.

Mom will come home, she will not be cared for properly, and for my own health and well-being, I have to step back, and all of that leaves me heart sick.

So, who really is in charge here?  It really isn’t Dad, it’s a ship without a captain, heading on a collision course, and the only question is, “When will the fatal collision be that changes everything, forever?”.

Quality vs. Quantity

I was going to title this entry “Choose Life?”,  but being strongly pro-choice, I knew that that didn’t communicate what I was after.

I am the daughter of two octogenarians with dementia, with my mother soon to be 90 years old.  Today marks just over six years since my parents have needed *a lot* of help from myself and my sisters, and roughly eleven total years of increasing medical demands.  I am very tired.

I wish my sister would have started writing the stories along the way years ago, since there is no way that I will be able to recreate the crazy journey that we have been on, but this looks like a good place to write down those nagging thoughts and experiences that will be coming up.

I am a dog lover, and I believe that anyone that has dogs eventually faces the question of quality of life over quantity of life.  I probably think more about these issues with respect to my parents and the moral decisions we’ve had to make than the others.

In 2009, my mother nearly lost her life to Clostridium Difficile.   While she survived, her colon (large intestines) did not – it had to be removed and she was given an ileostomy (so she only has her small intestines).  I believe that I was the only one in the room when this decision was being made that wondered if it was the right one to make, knowing how unwell and unhappy she had been feeling.  Unfortunately, that nagging feeling was correct, she has never forgiven us for saving her life, because the trade-off, for her, was not worth what she had to give up.  Would she have us make that same decision again?  Unequivocally, NO.

When my dad chose to participate in chemotherapy in 2008-09 for Stage IV colon cancer, it came as a surprise to me.  He always swore that he would never go through chemo, having seen what it had done to a friend of his, but his survival instinct is strong .  With a properly chosen supplement and aggressive allopathic treatment, he is now  6 years NED (no evidence of disease).  That’s great news, but he exchanged colon cancer for chemotherapy/anesthesia-induced Parkinson’s disease, which has robbed him of many things.  Would he do this again?  Unequivocally, YES.   He chose life, however altered it made him.

Part of the Parkinson’s is his own version of dementia.  Part of that dementia is a strong desire to remain in charge, of anything he can, and when he can’t, he strikes out in a mean way.  He is this way with all of us, and saves a particular individual meanness for each of us.  Yesterday, in an attempt to make me upset, he told me that I should shoot my dog.  It did make me upset, but probably not for the reasons he thought.

What is life when you alienate all who might have cared for you and you have no joy left?  What is life when it consists of tilting at windmills?

I have no answers, only questions.  I do hope that as I age, I am able to choose to Live Life, rather than just try to survive it.