Thursday, August 7, 2008

A strange man

I have many posts to make and I COULD combine them all into one, but I really hate it when people write mondo posts and I have to read through it. I'd far rather have a series of smaller ones, which is what I'm going to try and do over the next week or so.

This one involves mom's state of mind, which means it might end up long.

Mom's methodone dosage has been upped from one tablet twice a day to two tablets twice a day, and her hallucinations have increased with the dosage. She's had a few funny ones: There was one about 3 "box people" named Faith, Love and Hungry. She made dad feed hungry (scrambled eggs!) and he became Happy. Dad wouldn't let her go for a walk with them, though, so they went away. I found THAT one interesting, because Faith, Love and Joy (happy) are three of the "fruits of the Spirit" and my mother is very religious. I think they might have been angels, come to take her, but that the family isn't ready yet...jmo, of course. Then she had another about a reindeer named Jingle Bells, and the neighbors had reindeer who ran away to my parents house and were now mad at my parents because they paid their reindeer more than the neighbors did. That one made no sense. While I was there, she heard flute music...something she recognized but couldn't (or wouldn't) name.

These are all relatively harmless and kinda cute. Lately, however...well, not so much. Tuesday morning mom called her friend Sharon 6x in 30 minutes, to tell her dad wasn't at the house. Sharon said he was, mom insisted he wasn't. Then she turned around and he was at the table, where he'd been. Mom said "OH! You're home!" and he said "I've been home. Right here. You were holding my hand just a little while ago." My mother replied with "Oh no, that wasn't you. That was a strange man." My heart broke on my father's behalf when he told me this, even though he sounded like he thought it was funny. I think he was trying to MAKE it be funny - oh look, ha ha, your mother is so funny. Her memory is going and her attention span is so short, she can't even remember 10 minutes ago! The other day she got the shakes from the meds, forgot she was holding a bowl of cereal, and dumped it on the floor.

Later, the same day as the "strange man" comment, dad was talking to the hospice nurse on the phone in another room. When he got off the phone, mom wanted to know if he'd been talking to me. He said he hadn't and she said "are you sure? I heard you..." to which he replied "I wasn't, and I was in the other room so you couldn't have even heard me." Mom's reply? "Yes I did. I heard you through my pillow!"

It's an understatement to say I'm worried. I called hospice, to see if this could be a side effect of the methodone or if the cancer is spreading to her brain and we're seeing the beginning stages of dementia. They said it could be either. Gee, thanks for the help y'all. I don't know that I'm equipped to deal with dementia. Talking to mom these days is like trying to talk to a child, or someone very slow. Sickness, depression, anxiety, sadness...this I can deal with. Dementia, my mother being taken away from me twice? I don't know. I just...don't. What will I do if she doesn't recognize me some day? What will I do if she turns violent? What will I do?


nancy said...

I just posted exactly what you described you didn't like. A long bulleted post. Sorry!

I'm sorry about your mom. I just got caught up (I finally got you in my reader today). What a difficult thing to go through. ~hugs~

Jess said...

I'm sorry.

It sounds like the drugs to me. When my grandpa was in the end stages of cancer and on stuff like that, he would have those type of things happen. He thought people were climbing up the water faucet and into his room, etc.

It's not a fun time, that's for sure. I hope it doens't get too bad.

A Journey of Hope said...

how incredibly difficult - i'm sorry - like you don't have enough to deal with and accept in this process. my (young) uncle developed frontal lobe demensia which is parts of the brain dying from the disease akin to a how a tumor would cut off working supply to areas of the brain and his behavior slowly developed into strange hallucinations as well, and we were worried about when it might turn aggressive, but you know, it never did and still hasn't - he's in the end stages of his disease and life and he's still a gentle man with a lot of strange thoughts and behaviors, he never lost his "essence" which we are relieved about. i don't know if what your mom is experiencing is from the meds or the cancer, these are just my rambling thoughts.

i shaved mom's head today, you were right - the clumps coming out was too traumatic for her, and she feels more "in control" now that we just took it all off. this process really f'ing sucks though, i drove home so angry.


MrsSpock said...

It might be worthwhile to take her to the doc and run through possible causes and solutions for her mental status changes. There are treatable causes for delirium such as simple as constipation. Is she home alone at any time during the day? If she is, it probably is not a good idea for her to be currently. Sometimes people do things like turn on the stove or step outside, and that could be dangerous with memory issues.

As far as coping with her behavior, I would suggest just to gently reorient her as you have been doing. I would not press her if she becomes very upset or frightened. When I have a patient who is very disoriented and frightened, I find it better to respond to the emotion they are experiencing, rather than try and tell them how their perceptions are wrong.

For example, if she says there is a strange man in the house and points to someone she ought to know, such as your father, you can start by gently reorienting her. "No Mom, that's just Dad, remember?" If she persists and her fear escalates, you can respond by staying near her, speaking gently and calmly, and saying, "You are safe here with me."

I don't think there is anything I can say to prepare you for the possibility that she may not recognize you. It may very well be a fear that never comes to pass, though. And if it does? She may not be able to name you or your kinship to her, but your calm, gentle, loving presence can continue to help her feel safe and loved to the end.

Here's a link to a medical view on causes of delirium/ dementia at end of life

And another, more easy to digest link from cancernet:

Lindsay said...

(wow - I rambled... apologies!!)

I am over here from L&F. I, too, have a parent with dementia - in my case it is my dad.

My dad's case is not related to any other illness - it is a degenerative disease akin to Alzheimer's disease, in that it's progression has been slow, with plateaus and sudden declines. He still recognises all my family members, but can't remember my husband's name nor does he remember his friends of 30-some years. Hallucinations have not yet become part of his existence, but that will most probably change over time.

My assvice (fwiw) is to help ground her in reality, but don't do it with an iron fist approach. With Dad, when he is "stuck" in his childhood days, if we try and snap him out of it too quickly, he becomes extraordinarily agitated. He's never been violent (to my knowledge), but he definitely gets grumpy.

There is something most definitely childlike in his mannerisms. He gets pouty when he doesn't get his way; he can't prepare his own food anymore (forgets the stove is on); he needs constant, positive feedback in order to feel good. I wish I could tell you there was a way to bring them back from this stage, but so far I haven't found it.

Dementia can be trying for caregivers. And when you add to it the cancer... I am in awe of the strength you and your family must have to carry on. My heart and thoughts go out to you. Please remember to treat yourself kindly, too.

BethH6703 said...

I don't have much to add (especially after MrsSpock's post), but I wanted to know that I'm thinking of you.

I can't tell you how you'll deal with whatever may come from this, but I know that you can, and that you'll get thru it.

I do remember watching my Great Grandmother go thru similar things, and it was a reaction to the pain meds she was on. It was hard to watch her in those terrified moments, but at least those didn't last very long.

annacyclopedia said...

I came over from the L&F just to say that I know how hard it is. Both my mother in law and grandmother have dementia, and while neither one has had hallucinations, they both have serious memory loss and their personalities have changed. My only suggestion is just that dealing with dementia means you need to learn to listen differently. It's like listening to music or poetry - you can understand it, but the real meaning is often underneath. It's very hard to do, and it means you need to be in the moment all the time, deeply listening for what's going on, instead of just responding as we usually do. It's hard, and I'm sorry you're having to face this in addition to the cancer. I'll be thinking of you and keeping you in my prayers.

Zee said...

Oh Tigger, I'm so sorry. This must be so hard for you. Not only the cancer but also this additional loss. (I actually like the thought of Faith, Love, and Happy being angels. Maybe they're there not to take her, but to stay with all of you while this is happening.)

I wish there was something I could say or do to make it easier, but I know there isn't. I'll be thinking of you and your family, and hoping for peace for you.

Lots of love,

Jen @ A Journey of Hope said...

... haven't heard an update from you in a while, just wondering on how you and your mom are doing? thinking of you...

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