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.

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.

I don’t know why he is so mean….

“I don’t know why he is so mean.”

Those were the first words that Mom said to me the other day, talking about my Dad, and they keep ringing in my ears.  But let me back up some….

After suffering too much neglect, and, frankly, abuse, from my father, for failing to get my mom care when she needed it, Mom went on a hunger strike.  She wouldn’t take her medicine for her infection, she wouldn’t eat, she wouldn’t drink, she wouldn’t speak much.  She was defying Dad in any way that she could in her limited state.  She refused to let him care for her ostomy bag, and things got really ugly between them.

After a discussion with the social worker from APS, it was clear that it was time to act without Dad on our team.  This is a big risk, since we risk losing his power of attorney, which means not only is our ability to care for Mom compromised, but our ability to ultimately care for Dad also becomes very difficult.  I took a day and moved some monies around so that my sister and I will have complete control over it.

My Mom’s doctor is pretty good, and thankfully we are able to handle a number of issues online.  After messaging that Mom isn’t eating and just wants to die, he referred her to Hospice.  The Calvary has arrived…..

We are overwhelmed trying to get everything in place, as well as me trying to manage the beginning of a new semester.  In one day I had seven messages from Hospice.  They are a wonderful team.  I have arranged for a caregiver to be there a short time most days, with the folks’ money.  We all still have to work on coordinating our resources, but life has just changed dramatically for both of my parents, for the better.

I was able to go see Mom for the first time since her new bed arrived.  The Chaplain was there, they had started their visit with him playing his guitar and Mom sang along with all the words I’m told, but now he was at the counter just chatting with Dad about WWII stuff (that is, before he started complaining about how much dumber some of us daughters are compared to another one – he is so ugly nowadays).  The hospice social worker arrived just before I did.

I found Mom sitting up and smiling in her new bed, she had just eaten something.  She was happy to see me, and very willingly took her medicine.  Out of the blue, she said to me, in a very sad voice, “I don’t know why he is so mean.”  We talked a bit about that, then strayed and talked a bit about her eyesight.  She has macular degeneration (different types in each eye), and I’m afraid she’s lost a lot more vision lately.  She was too defeated to be angry, but was clearly upset that Dad would get mad at her taking “all those pills”.  Yeah, those pills, the ones that the doctor has her on to preserve what little vision she had left.  That’s why she stopped taking all her vitamins – because Dad just got meaner and meaner about them … he has always been anti-pill, but he has been more assertive about it lately, from vitamins to pain meds.

It was like she was completely shut down, but now that she feels safer and more cared for, she can speak more freely.  Even in her confused state, there are some things that are very clear to her.  She must have some form of PTSD from the trauma that Dad has put her through.  I try not to think about this part too much, because it just breaks my heart.  I’m afraid that those are the words that I’ll remember when I think about Dad most of the time …. “I don’t know why he is so mean….”

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.