Thursday, July 12, 2012

Damn, this is hard.

Things are so much better - and so much worse - than I expected.  I don't know what I expected, really: all of the literature the hospice people give you sort of makes it seem like there's a straight line of decline to follow right through their showing up until she passes away.  But that's not the way it's going at all, which is excellent, of course, because she's still here, and not excellent, of course, because sometimes she suffers so much.

The hospice people say (over and over again) that their goal is to ease her suffering and to support us.  I know they are trying, but I'm not always sure they're meeting those goals.  Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.**  But it's a mental sort of suffering that's affecting her, and all of us, the most.

She forgets who I am now.  Just a few weeks ago that would have been unthinkable.  Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath.  Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well. 

Worse than the forgetting though, is the paranoia.  The feeling that we're teaming up against her, and the repercussions of that.  This morning she woke with the idea that we were going to her mother's funeral.  Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born.  I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning.  And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)

Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things.  But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee.  After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble.  Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment.  (And it takes that long, with breaks built in, for her to get ready for things.)

So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's. 

"Do you think I'd choose a doctor over my own mother??" 

"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."

Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see.  "She's in the coffin two rooms away, and I'm supposed to just leave her there?" 

"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then.  She's not here right now, so we're not disrespecting her."

"Do you take pleasure in reminding me that I've been motherless for most of my life.  Do you think I don't know that? "

"No, ma'am.  I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."

"Well, it's not what I'm doing."

This back and forth only got worse, as every sentence was another foot in my mouth.  Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.

"Here, Grandmother, let me help you up from there: it's too low to work from."

"That's not the only thing that's low today."

That's the thing: my Grandmother has a viper's tongue, when provoked.  And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.

The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again.  She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.

 This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental".  Not for my grandmother.  For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her.  It's little boys (she had seven) disappearing and nobody helping her find them.  It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.

So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused.  As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.

She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'

'Grandmother: I don't know what you need, tell me how to help you.'

'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'

'No, ma'am.  I'm not a party to anything I'm ashamed of.  I'm only here to help you, if I can.'

'I hope that's true.'

20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'


So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)

Hospice doesn't prepare you for decapitation or slow bleeding, however.  They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice.  And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally.  The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to. 

Damn this is hard. 

*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck.  Good system, everybody!

**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second.  Or until a part of her anatomy is in danger of falling off. 


Jennie said...

I'm really sorry. I wish I had something helpful to say but I can say that I'm sorry you and your family are going through this. My grandma declined (mentally) in much this same way. It's really, really hard and it really, really sucks. Take care.

The Goldfish said...


This is so tough, I really wish there was something I could do to help. It is a horrible situation. It may be futile to even ask you to try to take care of yourself, because these situations simply don't give much room for choices.

A tip about confirming/ denying delusions, although you've probably figured this out already. If you have to deny something (you don't need to go to your mother's funeral today), deny it partially. So say, that's tomorrow because it rained hard overnight and the cemetery was flooded, or the ground is frozen, so some other excuse, so we should see the doctor instead.

A common piece of advice (which again, you've probably heard) to respond to questions about where dead loved-ones are, is to say they are upstairs asleep or they're away for the weekend. It's sort of a half-lie - you're not having to confront them with a difficult fact, but you're steering them away from the subject.

My Gran also has dementia and her initial decline was very difficult (although I was fortunate enough not to be on the front line). My Gran was always prone to paranoia - frankly, she was a much less pleasant lady that yours - and regularly fell out with pretty much everyone in the family over her bizarre allegations. Dementia made this worse to begin with.

It would be silly to say that now things are so much better and so this may be the case for your Grandma - I think we've been very lucky indeed. But perhaps it's worth telling a positive story at this point anyway.

Although Gran was ill, she experienced a sudden decline, seemingly overnight; her dementia got worse and began to dramatically effect many of her physical functions. It became impossible for her to stay at home, but it seemed impossible to persuade social services of this fact. Then about a week into this crisis, she had a very minor fall, and was taken into hospital, not because she was even hurt, but because the paramedics could see she wasn't coping.

From there, she was put into a nursing home and now, I swear, she is happier than I have ever seen her in all our thirty-one years acquaintance. All the grudges, resentments and suspicions have faded away. She has friends for the first time I can remember. She seems to have a better grasp of who we all are, I think because she's being taken care of so well and there's such minimal stress in her life. When she forgets something, she laughs it off.

I'm not sure that this story is useful at all, because as I say, I know too well that most stories of dementia are tragedies, plain and simple. But sometimes stories help, anyway.

I really hope something changes soon so you no longer have to carry such a weight.

Laurie said...

I am so sorry all of this is happening, NTE, and can imagine how stressful, painful, and frustrating it is. I am thinking of you and your family...

(Easier said than done but take care of yourself, too, okay?)

Terri said...

This is so hard. I have worked for many years with people with dementia and my experience is much like Goldfish's. Things like "You think about your mother (or brothers, etc) a lot... do they like movies (or whatever) the way you do? Or asking "well, it is 2 in the morning, where would Johnnie be at this time? I know I would be home in bed!' Get into a conversation about how hardworking... or whatever... Johnnie has always been.

I have always tried not to lie to my patients, but go alongside of the things they are thinking about because those things matter... even momentarily. This website might help:

Also, it is common for people to believe that 'Grandma must have really always been like this" but that usually isn't so. This is a disease that has CHANGED their brains. Former relationships were what you believed. Really.

Also, it may be helpful (because of her waxing and waning clarity) to check on whether she has Lewy-Body dementia. There is not a cure, but certain medications make things much worse.

Hope this helps a little. Hang in there, my thoughts are with you...

Terri said...

I'm sorry... 2 more things: I meant to say why I go beside subjects. Raw truth can be very painful for the person because they really don't know and cannot learn this info. Things like saying 'your mother is dead' can throw them into grief or anger, because to them this is new info.

And the link I tried to include is for something called Validation Therapy (opposite of reality orientation--validates the person's sense of self and emotions and doesn't focus so hard on 'truth.') You can google validation therapy and find this. As a practitioner I live by it.