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.

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.

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.

Prognosis, part I

I drafted this post over two weeks ago, and never finished it. Mom was still at home, and it seems a lifetime ago. Mom doesn’t have pneumonia, but she does have a UTI… Will update soon in part II, but posting this here now…

They call pneumonia The Old Man’s Friend, because it often sets in when the immune system is no longer competent, and causes death in a comparatively swift manner. My mother most likely now has pneumonia as a result of her COPD.

My mother also has a flair of her UTI, often it’s a form of some resistant E. coli that she picked up in the hospital years ago. She also harbors at least one other resistant, reportable urinary bug. Oddly, in seniors, as most of us in this situation know, these UTIs in the elderly often do not cause pain, but more confusion. Each one also advances the dementia some, and impacts some organs, such as the kidneys (Mom is almost in Stage IV kidney failure).

Mom is refusing taking her medication (antibiotics). We could find other ways to administer it, and could also have her admitted to the hospital for IV antibiotics. However, evaluation by the hospice team is that her body, and she herself, is telling us it is time – she is also losing weight, not eating, and has expressed the desire to several people, that she just wishes to go to sleep and not wake up.

We have decided not to treat with antibiotics and to provide only comfort measures. The hospice team has said days to weeks, maybe a month. Mom is a tough cookie with at least nine lives, so I interpret that as weeks to maybe a couple of months. Either way, emotionally difficult times ahead.

The Eagle Has Landed…

That was the text I received from my sister to tell me that Mom was safe: “The eagle has landed 🙂 ”

Although my sister and I have health and financial POA for both of my parents, my dad, being the spouse, had retained decision making authority. He retained that authority partly as a practical matter, trying to balance the needs of two parents, and trying to retain the POA for both parents throughout this ordeal so that we have access to funds and will also be able to take care of dad long term too. And, as the hospice social worker had noted, part of this was making the (unconscious) choice to try to preserve the relationship of two people that have been married for over 60 years.

It had become clear that we needed to move Mom into a SNF (skilled nursing facility), but it was not clear how it would be paid for long term, nor how we would be able to remove her from the house without upsetting her and with her cooperation, and without an altercation with dad, or the need to have the police present.

The hospice social worker found a SNF for mom, which appears to be a good fit. My sister, with the hospice social worker, told Dad that Mom had a doctor’s appointment, and they were then able to remove her from the house without incident, and to get her to the facility. When she didn’t go back to the house with Dad, he was told that the doctor wanted to admit her, so he assumed that she had been admitted to the hospital, and we let him. The next day, today, he was told that she was moved to a SNF for more personal care. The social worker told us this was only the second time in over 25 years that something like this was necessary, with Dad being so difficult.

Last night we celebrated with a feeling of huge relief, as this should have been done probably two years ago. But today, I am incredibly sad, mostly about my dad. My sisters spent time with Mom today, and while she had quite a bit of agitation last night and this morning, by this afternoon, she was in better control, and seemed to fully understand that she now gets to rest and “just be” and let people take care of her – something I know she has wanted for a long time. I don’t know if she will remember that as we move forward, and I don’t know how she will respond when Dad visits and tells her how miserable she is and how much she really wants to come home, but today my sister said she left the facility happy because Mom knew she was were she should be, and Mom was even in control, telling my sister when to leave because she needed more rest.

After the drama is all said and done, what is left is the incredible sadness that my Dad is lost in a foreign world of his own that is difficult and mean, and, estimates for mom, are a matter of weeks, maybe, and since she is a tough cookie, months. And it just all hurts my heart.

Death Be Not A Stranger

Death be thou not a stranger to thee
When to my pain the only repose
Your comforting arm the heart welcomes
Like and old friend too long absent from sight

Wrap your warm blanket around this heart
Keep away the harsh wind and tumultuous rain
The desert wind did parched it so
Leaving it weak, frail and beyond mending

Death a stranger be thou not
In this moment of my greatest need
You the only friend I see
Rock me gently with your lullaby

-Haribaldev Kaur
http://www.authorsden.com/visit/viewPoetry.asp?id=253984

Mom is on a hunger and med strike; she has decided it is time.  We are still battling Dad, with APS supporting us (they received a new referral for mom from a recent ER visit).  New territory.  Scared, but committed to support Mom.  I understand her.  I love my mom.

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.