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.

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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…