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.

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.

Dementia of Different Colors

My Mom is 90 with vascular dementia, and I also suspect some Lewy Bodies. The vascular dementia was diagnosed after a CT scan, and a lot of people seem to know a lot about this type of dementia.

My Dad has not been diagnosed, but the suspicion is that he has Frontal Lobe dementia, probably bvFLD:
http://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=167

It’s a nasty type of dementia, leaving more memory and physical function intact (at least initially), and taking away the ability to process information in the way a reasonable person would, or even in the way a person with a more obvious form of dementia would.  It’s a deceptive type of dementia, because Dad appears to have facility, until you scratch that surface, and then it all starts unraveling.  He used to be able to fool people, but now I don’t think it takes too long before he has anyone scratching their head.  I don’t have the facility with words to describe how different it is from my mom’s dementia, but it’s very different.

I received a call from the sheriff today.  He tried to walk to the care facility where Mom is.  After being stranded for about an hour not far from home, some person called the sheriff to come help.  That was probably the best part of the afternoon, sigh.

Long story short, I had to tell him today that Mom isn’t going to be coming home, and, the unfortunate follow-up, that, yes, this is where she is going to die.  As someone that thinks being home lying in filth and not being fed regularly is a better option, this did not go over well with him, and he had a look of horror.  There was no way I could make it better, as my name is mud with him right now, and I’m sure now and forever.  I think today our relationship crossed a line, as he tried every which way he could to try to hurt me, and things have gone from bad to worse.  I didn’t take his bait, but whatever was left of my father, I fear is gone.

 

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.

watch out for the “good guys”…

Can’t recall for how long we’ve been trying to get APS (Adult Protective Services) to help us get things accomplished to help Mom, with Dad being the road block.

Well, since APS has no teeth and can’t do as much as they claim, they decided to “change their focus” and come after my sister and I if progress isn’t made, since we are easier to target via current laws, regardless of whether it is just or not. Lesson learned I guess.

We will be okay with Mom, we have made significant progress (independent of this annoyance of APS), thanks to the hospice social worker. Of course, when it comes to Dad’s turn, we are going to have to be careful, he will not accept care so readily.

For now, a reminder, no good deed goes unpunished, at least to some degree…

Disconnected.

I’m back at work, and pretty disconnected with the folks right now.  My sisters are still involved, and we are working out details with the care people, I deal a bit with the banking and the bill issues.  But I haven’t been over there for about 2 1/2 weeks now.  And it makes me sad, and I carry this sadness with me always nowadays.  The new normal I guess, no matter what changes, this weighs my soul, whether I’m there or not.

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….”