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.

 

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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….”

You’re Fired! Well, maybe not…

The other day, Dad essentially fired me. It was an ugly scene. One sister and my BIL were there also; my sister tried to mediate, but her best efforts failed. Dad’s delusional state has made us all into something that we aren’t, and dealing with this now is difficult (while dealing with this ugliness after all this is said and done will probably be a different kind of difficult).

Dad worked hard to find any and all ways to say hurtful things, but the critical part was his refusal to work with me in order to help himself. He wouldn’t even sign the VA paperwork to request a copy of his discharge papers for his application for benefits. If I can’t get him to do even that, then I’m just punishing myself by engaging. As I told him, Mom may not have a choice about taking his abuse, but I do.

I was actually hugely relieved to be fired. But today I went back down the rabbit hole, as Dad asked me to come back and look at some VA application information.

I didn’t want to go, but I did, and arranged for my other sister to be there – I don’t go over there alone anymore, Dad is too mean when he has me alone. What I found is that he wanted things done by tomorrow, and done his way. “His way” basically means the wrong way, and he doesn’t trust anything anyone else says. I gave him the choice of letting me take it home and work on it (having it ready by next week), or leaving it there and he handles it all on his own. He chose to do it on his own, so I am fired again. Yay???

From our research, and the previous discussion with the lawyer, Dad won’t yet qualify for any VA benefits, so the delay in the application is of no consequence financially. Since he won’t listen to us, I’m letting him win this one, which turns out to be a win for me too 😉

In Limbo

Things are going to break soon, it’s just a matter of time.

Dad is still insisting on caring for Mom, which means that she isn’t being properly cared for – he just can’t. He is not physically able to provide her with good nutrition, her medications, or proper hygiene. Even if he were able-bodied, what he would be capable of doing is in question, him always being somewhat emotionally stunted.

He refuses to spend money to bring in care.

He refuses to use something like Meals on Wheels.

He refuses to consider any type of day care for her. The social worker told us that day care for seniors can delay placement in a facility for up to three years.

He refuses to find a skilled nursing facility for her. He thinks anyone that would consider placing her in a facility “should be shot”. That is Dad talking, not Mom. Although they aren’t the best of places, she would love to be taken care of – at least she used to be okay with that. Judging from her recent stay in a facility, I think she has a bit of Stockholm Syndrome going on and is more attached to Dad than what is normal for her. The reality is that what Dad is doing to Mom is considered abuse, but in his mind, he is the hero.

APS (Adult Protective Service) should be involved soon, and they should be able to help us apply pressure to Dad to move in a better direction. We spoke to a lawyer the other day. He did give us some good information, but we really don’t have many good options. Even getting conservatorships for them are out of the question, starting out-of-pocket costs would be $12,000. So we will have to work with APS.

I miss being able to just visit my mom, like a normal person should be able to do. I have such deep sadness that all of this is such a battle. Losing your parents to the ravages of age is hard enough, but all of this on top of that is overwhelming.

Empathy Sucks.

I am overly empathetic – even my dad remarked that I am “the sensitive one”.  I have a heightened sense of empathy, and I’m not very thrilled about that.  Empathy allows me to feel, no, experience, others’ suffering and pain more easily, and I’m not too keen on that.  I don’t feel the need to post about all the details of what goes on with Mom and Dad, but I will say that watching my dad’s stubbornness compromise the care of my mom is really, really difficult.

Studies have shown that people who have more empathy have more white matter in certain areas (plural?) of the brain.  The question is whether that is something that can be developed, or something that is lost when head injuries, or even dementia is experienced.  I find this all pretty interesting, since most papers compare this to the “rational response” of the brain as opposed to this “emotional response”.  Why so interesting?  Well, because I have a PhD in a technical (STEM) field, so I am this weird mix of rational and emotional it seems.

I am a university professor, for over two decades now.  Long ago I made the choice to not be one of those professors that stands around the water cooler complaining about their students, and chose instead to understand where they are in their development (both in the subject matter and in life), and work with that.  So maybe I’ve done myself in by practicing empathy all these years too….

The question of whether or not we lose empathy as we age is an interesting one.  When I’m able to talk with my mother, she is still concerned about me – about the house, the finances, the dog ( ❤ ).  My dad, well, it appears that there is not an ounce of empathy in him, which seems to worsen as he ages.  I know that dementia robs people of who they are, but, in a sense, they seem to become more of who they are at their core.

For me, empathy really sucks.  I worry a lot.  I worry about the tragedy of the life they are stuck in and the feelings that come with that.  The rational part of me worries about the finances, as well as this detail and that detail.  But when it comes down to it, it’s the empathetic side that’s the most difficult to deal with.  Empathy sucks.

Now and Tomorrow….

In 2010 I had a dog die a tragic and profound death.  Within a span of about a week and half or so, she went through the process of her nervous system shutting down, one system at a time, until she could no longer breathe.  In hindsight, I believe that it was a brain stem lesion from chronic infection from a tick disease, though this “shut down” pattern can be seen with brain stem tumors, and can also be strikingly similar to the way parts of the nervous system degenerates in dementia.

What I wish I knew then, in the middle of everything, was that she was in the process of dying.  I spent so much time trying to save her, that I wasn’t able to understand that we had few tomorrows left, until the very last ones.

In the years before 2009, medical issues for my parents were ongoing, but periods of intensity were short term.  We got through them, with time to recover, until the next issue came up.  But in 2009, everything changed, for them, and for me personally too – what followed for me was nothing but loss.  Throughout all of my own issues, the intensity of my parents’ situation continued to increase and place more demands on all of us.  My parents took turns being in and out of hospitals during this time, and I don’t have the words to describe the crazy that that is, as both get very delirious with hospital stays.  To this day, my dad still believes that one hospital was running a daycare on the floor at night, the other hospital was running a gambling operation, and he couldn’t speak his mind at the rehab facility because they would hear him and his life would then be in danger.  After being home and recovering, my mom would later understand (or at least she did) that her delusions, which were more frightening, were not real.  However, my dad still believes that his delusions are true.

Sometimes, we get caught in trying to survive the now to make things better, not realizing that this point in life is not an acute event.  In 2009, my life changed from being surround by a series of sprints, but to a marathon defined by the pace of the decline of my parents.  It took several years for my sister and I to realize that.  It took us awhile to realize that things aren’t going to get better and that they will only get worse – this is the new reality, and we have to better plan for the long-term and pace ourselves.

My Dad remarked the other day that after Mom comes home from the rehab facility she could sit on the front porch and watch him mow the lawn.  There is such sadness in that thought to me, LOL, ignoring the fact that that is something that mom would never enjoy (and would probably kill her allergies).  He still thinks that he is going to get better, rather than get worse, and has a level of denial about mom’s current functionality.  Mom is the woman with nine lives, but that isn’t stopping her obvious decline.  Dad is caught in the Now, not understanding the Tomorrow, or at least trying very hard to not face it.