Tuesday, August 12, 2008

The Anxiety Complex

My mom was diagnosed with Anxiety Complex, and once that diagnosis was made, it explained a number of behaviours that I'd been noticing over the years.

Some time before, I began to notice her putting her fingers against her wrist and anxiously "taking her pulse". This came to be followed by statements like "I feel wrtetched". Now to me "wretched" has very heavy connotations indeed - far heavier I think than warrant its application to a woman living comfortably in her own home, away from famine, warfare, gunfire, dungeons, chains and torture. But she used it, and frequently at one stage - not so often now, thank goodness. It used to make me as near as I dare get to angry.

When she comes out with another frequent saying - "I don't feel well" I usually ask what the problem is and get an answer relating to pain - maybe in the leg or back. If she persists - and she does - I often say "Well we'd better get you to the doctor." And her standard reply is - "Oh no, I'll be allright," or "I'm feeling better now." I think the biggest problem for me is trying to sift the truth out of all this.

I do know she has wind in her tummy at times and often complains of pains in the chest area. This caused me a lot of anxiety until the District Nurse was in one day and I asked her to "do mother over", as I needed to be satisfied about whether these pains came from the lungs, heart, stomach or what. Pneumonia is something I am always very conscious of, having had a really bad bout of that once myself and knowing that it's often the final call for the elderly.

The nurse did a very full examination and came up with the following findings : lungs - fine; heart - fine; blood-pressure - completely normal, with "the pulse of an ox". So much for all that.

I don't know if Anxiety Disorder is a normal accompaniment to Alzheimers or not. It might well be, because it must be most unnerving to find things slipping away from you, and I can only imagine the kind of panic that must set in as this situation worsens. Someone else may care to comment on that point.

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Friday, July 11, 2008

Keep Calm?

I often wonder to myself about the effects on the carer of having to bite one's lip all the time. I know on occasions I have taken out my feelings of frustration and anger, out of my mother's direct line of vision, by slapping or punching something inanimate. But I can remember one day when things really got to me, I opened my mouth, took a deep breath, and let out a big, long scream - for as long as I had wind to carry on.

I have never - ever - been a screamer, but I do have a good pair of lungs, having walked the high country in my former life in Wellington.

I was about 6 feet from my mother at the time, and while I did this she sat calmly in her chair watching. As soon as I finished she looked at me completely deadpan and said, "Well, I have never done anything like that." Always matter-of-fact, my mom.

This floored me. I bit my lip. No mother I'm sure you probably haven't but then you have never been where I am either. If I remember right, your mother had to look after herself. Well, I certainly didn't scream for effect - it was a reaction out of pure frustration and despair - but the response was an education to say the least.

So I have gradually learned that it's absolutely pointless to expect any kind of reaction when MY feelings or health are at stake. And that is actually quite hard to take - probably one of the hardest things the Carer has to get used to. It's like the final straw on the back of the "overworked and underpaid" camel. It reinforces the feeling of being alone if you have no partner for support, and it does nothing for the Carer's self-esteem and sense of worth.

My mother is quite a light sleeper, and if I'm ever awake in the night I'm very careful to make no noise whatever for fear of waking her up. But I can think of at least 2 nights when I've had to leap out of bed several times and throw up quite violently in the bathroom about 20 feet from where she sleeps, and she managed to sleep blissfully through THAT on both occasions!

Maybe the Alzheimers psyche develops some kind of self -preservation mode that selects for processing only information that is useful for its own wellbeing ... Come to think of it, in an organism that's operating well blow par, that makes sense.

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Monday, July 07, 2008

A Really Funny Story

This story is an absolute hoot and still makes me crack up every time I think of it.

My main design client on the Internet is an Australian company called Community Enabler. They are setting up a wonderful, free, worldwide Social Networking system called Cagora which will enable people to advertise, share and connect with others both locally on Local World websites (eg USA, Texas, Costa Mesa or Far North New Zealand ), and also on what we call Worlds of Interest (eg Dogs, Photography, Travel, Christianity - whatever people have a passion for). This very special Social Networking complex has a substantial architecture behind it, including live chatrooms for meetings or seminars.

My function is to design page headers for the various Worlds, and I attend regular company meetings in one of the chatrooms, to keep up-to-date with the latest company news. I need to explain that once in a room you can hear the voice of whoever currently "holds the mic", and to speak in the room you need to press your CTRL key when no-one else is talking.

One memorable day I attended the early morning meeting (my time) and then went upstairs to do something - wash dishes or bake some bread or muffins, I'm not sure which. In any event, I was gone for some little while: there always comes a point when you actually have to catch up on all the stuff you've been rushing away from every day...

Suddenly the phone rang. It was the Boss, ringing from Australia, no less. "Are you allright?" he asked. "Yes" I replied in amazement, "I'm fine - Why?"

Well, here's the story. Everyone had left the chatroom except me and the moderator. One of my cats must have walked on my keyboard and set off the CTRL key so that all of a sudden my household was broadcasting to the room. (Thank goodness half the membership wasn't still in there!) My mother was doing her rave, and the cat was cheerfully stomping around on the keyboard. Why is it that cats always HAVE to walk where they are not supposed to?

Poor Steve listened in horror, convinced that I had finally gone totally bananas and was sitting there in cloud cuckoo land warbling and banging on the keys. He couldn't get a word in edgeways because the CTRL key had locked itself and finally in panic mode he IM'd the Boss in Melbourne and told him what was going on. Rob being the caring guy he is, promptly got on the phone.

Beloved cats - beloved mother! Beloved Internet. The ripples went from New Zealand to Minnesota, from Minnesota to Melbourne, and then back to New Zealand. When you think about it, it's quite marvellous how good friends from across the world can set off the alarm to check up on you. Hilarious and embarrassing as it all was, it gave me a wonderful feeling of being cared for by others, albeit thousands of miles away!

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Sunday, July 06, 2008

Exhaustion

The exhaustion that results from long-term full-time caring is something that not many people appreciate. Those who have never looked after an elderly person have absolutely no idea of how deep-seated this exhaustion can be. They assume it's all some kind of a stay-at-home picnic. See my earliest posts for thoughts on uninvolved relatives doing a whitewash job to ease their own consciences...

The first time my mom went into Respite Care for a week - it would have been early 2006, when I had already been looking after her for 9 years - I slept 12 hours a night for the first 5 nights in a row. It was midsummer and I'd decided to use my time off to develop a small shrubbery-border alongside the house. The outside work did me good, and as physical activity does, no doubt helped me sleep. But I found I was going to bed at 9.00pm, while it was still light, and not waking up till 9.00 am the next morning - broad daylight. And I don't ever take sleeping tablets. It was just badly-needed rest, I suspect.

Only people who have "been there, done that" know what this level of tiredness is like - or people who have had the experience in their family. This was brought home to me recently when some local friends suddenly became concerned for MY welfare because the wife's married sister nearly had a nervous breakdown looking after her mother, who is a whole lot more "with it" than mine. I have known these people for 9 years - throughout my carer years in fact - and I have never before felt this level of concern from them...

Stick around and find out what it's like to be a Caregiver!

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Saturday, July 05, 2008

How About Hysterics?

I've talked about my mother's hysterias. These are pretty much "full on" dramas. She also has a more low key version, which occurs quite frequently. In fact, her "raves" are pretty regular and predictable - mostly when she has lost immediate contact with someone else to use as a point of reference and validation. It must be an awful situation to be in. For me, I just don't know how much she's aware of what she's doing.

If I go out of her sight, it isn't long (about 2 minutes max) before she starts up -usually calling out "Is anybody there?" "Help!" or "Come on! Come on!" - a call we used to herd our dairy goats together. If I have work to do upstairs, like baking or washing dishes, I can hear the commotion down below. Then I know I don't have much time to get the job done.

The same thing happens if I take a rest during the day. I often work till about midnight, but my mom never sleeps in. And once she wakens - 5.30 or 6.00 am - I have to be awake. Add to this the strain of being basically on duty 24/7 plus online work and you can maybe see that sometimes I really begin to fade after lunch. If it gets really bad, I just have to lie down on my bench/bed.

I am still only a few feet from her, but as soon as I lie down, I become "invisible", and then it starts. I have been amazed at times by her capacity to keep up a running diatribe, sprinkled with the words and phrases I mentioned above, for probably half an hour on end.

Sometimes I cave in and get up again. Sometimes I am so exhausted I just lie there drifting in and out of sleep with an unrelenting wave of sound washing over me. It has occurred to me more than once that if someone came into the room while this was going on, they would probably brand me as "uncaring" because there I was sleeping while my poor mother was having hysterics. I remember one day waking up and lying for a few moments listening. It dawned on me with full force that in the olden days they would have called her "mad" - if any of us know what "mad" really means. It's amazing what we get used to - and what we conceal from ourselves, too.

As a final addendum, I've often asked her, "Did you know you have been calling out?" Her unfailing answer has always been "No." It's hard to know if this is an honest answer, and she really does not know what she's doing from one minute to the next, or if it's a childlike cover-up.

Living in this kind of Alice-in-Wonderland world can really make you wonder sometimes if YOU'RE going nuts. I am reinforced in this by my dear neighbour who has very recently started dealing with the first signs of Alzheimers in his wife. I try to support him as much as I can, especially by calling in and being there for him to talk to. He said the other day that there are times he wonders if he's losing it.

Have no fear- it comes with the territory.

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Wednesday, July 02, 2008

Pain - To Be or Not To Be

I don't have any doubt but that my mom has pain and I wish with all my heart I could remove it from her life. I know she has back and neck pain and leg pain - what I don't really know is the extent of it, because she can make the complaint that "It Hurts!" as readily when I am carefully cleaning her fingernails as about what I would expect to be more serious stuff. I noticed one day when the District Nurse used a swab held in forceps to clean out a small lesion on the side of her big toe, she went into screaming mode. So I suspect her reaction to pain could be a little overdone.

The big problem I have is doing anything about it. Trying to make her take tablets or capsules is a huge drama. Capsules are out of the question from a swallowing point of view, but sometimes I can manage to get Panadol (paracetamol) tablets down her, crushed up and given with a meal. The medical profession's suggested alternative - liquid Panadol elixir, with its syrupy sweetness and ersatz "orange" flavour - is absolute anathema to her, to the point where she simply flatly refuses to take it. And I wouldn't offer it to her any more, because I believe that is what gives her thrush in the mouth from time to time.

So I am between the devil and the deep. There are alternative solutions like MSM gluconate, which I think is very effective as well as beneficial, but the taste of that has to be experienced to be believed. Again, capsules are out of the question and as soon as you break one open and take out the powder, the taste is right there. You or I might pull a face and get the stuff down because we know it will help us, but my mom just performs and refuses.

Kath also has headaches quite often. For these I make her green china tea which works excellently for me. But I take 3 or 4 cups when I have a bad head - and it's gone. Trying to get my mom to drink one cup is a mission. I will make it, and she pronounces it "too hot". It stands a little while, and unless I am really on the ball, it becomes "too cold" ( Goldilocks and the Three Bears ). Another frustrating thing is that, even if she's been full-on demanding a drink, she will only take a sip at a time these days when she gets it. And when the cup gets down to 2/3 full she looks inside it and comments "There isn't much there". Waaah - count to 10 again Patricia.......

I tell her frequently that headaches come from a lack of body fluid and she should drink more, but that doesn't have much effect. I have to keep reminding her to drink and the best way is by letting her see me drinking. So I make sure to do that regularly, encouraging her to drink at the same time - and I suppose I am getting some benefit by keeping up my own fluid intake!

All my enquiries of the nurses and the patient log at the hospital lead me to believe my mom doesn't complain as much of pain when she is in the hospital as she does here at home - which rather reinforces my suspicion that there is a measure of attention-seeking going on in all of this. Plus perhaps a healhy dose of "best behaviour when out in public". Aaah me - if only we were blessed with the knowledge to understand what's REALLY going on.

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Monday, June 30, 2008

Don't Lose Yourself

It's really wierd how deeply this stuff affects our lives. Just before I finally finished working at the local Health Shop, the new owners did a "review" of my work standards. I need to explain that this is quite a small shop, with a small room out the back, and for a few weeks before I finally quit the job because of mom's health, I did some weekday work for them because I had some home help.

On weekdays, part of the duties involved unpacking incoming stock in the back room, checking it off against the invoice and putting it into plastic bins ready to be taken out front and put on the shelves. There were several of us working there on weekdays - it wasn't a sole charge situation like I had on Saturday mornings.

One of the main shop rules was that if the buzzer went off in the shop, indicating that someone had come in the door, one had to go up front and make sure they were being attended to.

I was a good friend of the shop owners and my review took place over a cup of coffee with the wife at a local restaurant. I got a very good review, except for one thing. "Why," she asked me, "do you not go up front when the buzzer rings and you are unpacking stock?"

I was quite flabbergasted - because having been sole charge on Saturdays for 7 years, I was very used to responding to that buzzer.

Then it dawned on me - unpacking and checking off stock required concentration. Living with mom and doing computer graphics, which also required concentration, I'd developed an ability to focus my attention in spite of a general flow of extraneous sound. Selective hearing, if you like. I explained to her and she said, "I thought so - because once or twice while you've been unpacking I've spoken to you and you didn't reply."

Oh My Gosh.

I was lucky these people were friends and fully understood the situation I was in. But it shook and embarrassed me to realise that this modification of behaviour had crept up on me unawares.
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Saturday, June 28, 2008

This is Why.....

If what I've said sounds a little extreme, let me describe the situation. My mother's thoughts and vocalisations go in very narrow patterns. One is the "Hello" syndrome, another is the "I'm sorry but I don't feel well" syndrome, a third is the "Are you allright?" syndrome, and another is what I call "The Inquisition". From the moment she awakes in the morning, until the moment she falls asleep at night. my mom vocalises pretty continually. It is either in one of the above veins, or else it is a complaint about pain.

The "Hello" repetition is especially - what can I say - irritating? It can go on for hours at intervals of less than a minute, at times. I respond and try to make a conversation out of it, but the conversational response from her end is very limited. It's the same with the "Are you allright?" query, which goes something like this: "Am I allright?" . . . "Are you allright?" That reminds me of learning Latin - "Conjugate the verb 'to be allright'....."

Fortunately, we have a number of pets - 2 dogs and several cats - and they are always moving around, coming and going, and that provides her with an opportunity to draw my attention to their doings. Trying to keep her otherwise occupied is not easy. She long ago lost the ability to concentrate on the television, and if I give her a magazine or a book with pictures she may look at it for a few moments, but soon pushes it aside.

So I try to keep her happy by responding to most of her chat, keeping my end up as best I can while also having half a brain turned to whatever I am doing, be it computer work, making food or drink or - heaven forbid - glancing at a book or newspaper, which I don't do very often. I get to feel very guilty about THAT activity, because somehow I am supposed to keep my full attention focussed on her.

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Thursday, April 03, 2008

Picking Up the Threads

I would like to apologise to everyone who has been reading this blog for the long silence. I realise it is well over a year since I last posted.

My mom passed away on 23 February 2007, after several difficult months for both of us, and now I'm picking up the threads of my life..... I'd like to carry on with this though, because I realise from your comments that it struck a chord with quite a few people, and if it can be of any help to others, then the effort has been worthwhile.

At the time I last posted, I already had some entries prepared ahead, because I'd been writing things down as they occurred to me in advance, so what I'll do is carry on from my last post, and when that's up to date, then I'll finish the story and gather my thoughts.

I'd just like to say that my mom's passing brought to me an incredible peace. I haven't grieved in any distraught sense of the word, and while I feel a little ashamed of this, a friend hit the nail on the head when she said, "Well, you probably did all your grieving over the last 10 years." That would be oh so true.

In the next few days, I'll carry on with the story.

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