Things I am Grateful For

Before going further, I want to acknowledge some things that I truly am grateful for. I know it is highly likely that these things are going to change - and probably very soon. But up to now and for the present, I am very much aware of the small blessings I do have.

Firstly, my mom is continent. That's not to say we haven't had several disasters at different times - due in part to me having to accustom myself to asking someone else regularly if they want to go to the bathroom. She also tends not to be aware of her needs - or not to voice them - until the last minute. I know the hospital where she goes for care has this problem also, because occasionally she comes back in nappies: they have limited staff who cannot be everywhere all the time. It's "easier" for me because basically I have to be within sight and earshot of her 24 hours a day. But I am truly grateful that up to now her brain has been working her bladder and bowel properly. To complement this, I prepare foods that avoid the dreaded constipation issue, and I bake bread for her using wholewheat and raising it with baking soda, because she has trouble with yeast.

Secondly, my mom can feed herself. I take care to ensure I give her food she can chew comfortably. All crusts come off the toast and slices are cut up small, vegetables are steamed, meat has to be chopped up finely and she eats finger food, or from a bowl using a spoon. I carry plastic knives and plates in the car so if we buy takeaways I can cut them up for her. Eating is not a tidy procedure and often I wince at the mess, but I just have to manage. If anyone looks inside my beaten-up old bomb of a Ute while it's parked in our very upmarket nearest small town, they must wonder what they've struck. It's like having children - except it gets worse, instead of better. And what's more, I am not too sure how long this blissful situation will last.

Thirdly, in spite of her longstanding mobility problems, my mom can still manage to walk short distances with a walking frame. We are able to use the bathroom. I can get her out to the car for short journeys. I am grateful for this, though there has been a toll on my body at times. Thank goodness I have a really good chiropractor. And one who's more concerned with fixing his patients that making a fortune out of them.

Fourthly, my mom still recognizes me. There are some qualifications here because very often these days she calls me by the name of her elder sister Evie, who died with a brain tumor when I was a small child. But she knows I am family and she is far from being a vegetable mentally. In fact she talks almost continuously during her waking hours - aargh!!!!!!!
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My Pet Hate

While I'm in this vein, if there's one thing that makes me really, really angry, it's the people (usually in the elderly care services) who say to me, "Now, you've got to look after yourself - what will happen to your mother if something happens to you?"

The first time someone said that to me, my jaw dropped. PARDON??   No-one ever dared underestimate me like that in all my time with the government. Have these people no brain? Or have they no tact? Let's be honest - a comment as dumb and mindless as that is about all that's needed to totally destroy a caregiver whose life is being slowly consumed by the demands of a dementia patient.   I want to say to these people (and have on occasion), "I don't care what happens to my mother if something happens to me - I CARE ABOUT ME if something happens to me - for crying out loud!"

If you are a caregiver, everything conspires to deny your true identity.   Set a high priority on your own worth and integrity and don't let anyone steal it, ever - and that includes your patient. About which, more later.
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Telling It Like It Is

Think about it - put yourself in the shoes of someone you know whose life is tied up as a caregiver - and don't fudge the issue with excuses like "Oh, but she likes doing it.", "Oh, but it gives her someone to care for."     It's natural not to want to face this issue - but it's also inexcusable, especially for other family members.   So think carefully and take some responsibility in your family circumstances, if this applies to you.     I have no siblings to take issue with, but I know if I had I would be fair vexed to be expected to sacrifice my quality of life, future, and earning capacity for them and their offspring.

My mother's family was no different from most. Of the 6 children my grandmother bore, only 4 were still living at my grandfather's death - 2 girls and 2 boys - 2 marriages and 2 broken marriages. For whatever reasons, none of them took my grandmother in. She apparently didn't have dementia problems and looked after her own brother for awhile, but tired of being unpaid housekeeper to a man who would do nothing around the place and wanted to spend all his days in the local library. She sent him packing and I guess she died alone. I often think of those few things I can remember about her.

My father's military family had other traditions. Daughters were intended to look after elderly parents, apparently - I guess it was the kind of family tradition that no-one ever tells you about.   My father's twin sister was a single career woman and looked after their mother until she died, but then flew like a bird to the USA and worked and lived in the Boston area for about 26 years. Good for her.   As for me - well, my dad (especially) and mom were never in line with the idea of me marrying.   In fact my dad made sure I was programmed from a very early age....   "A career" was a much better option.   Say no more.   There were some other factors involved in my staying single, but there are still times when I have to work very hard to keep my thoughts and feelings towards my parents "charitable" on this topic - especially now!
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How I Broke the Rule

I came from a small family unit of 2 parents and a child, isolated from relatives by "the army life" and brought up to be creative rather than to socialise. I was never exposed to caring for the elderly, still less dealing with Alzheimers disease. When you are unaware, the disease creeps up on you before you have time to know what it is or even consider how you are going to deal with it. For sure, if I had known what I was in for 20 years ago I would have arranged many things differently, or else run - and then had to wear the guilt and lose my inheritance.

But there are bigger implications than this. In our society, it is usually the role of the single daughter in the family to look after the elderly parents, or sometimes the single son. Everyone else tends to duck for cover, of course - far too busy rearing families, running businesses, or making money. Hmm...   This cosy little routine needs calling in question, because it throws a huge burden on the family member who has the least support to help deal with it.   It's as if the child who hasn't married has some debt to repay that the rest of society is exempt from.

The situation is often brushed aside - "Sis is living with mom and looking after her."     Well, isn't that nice? For her, or for everyone else? Has anyone seriously thought what it's like to live alone day in and day out with someone whose body and brain are not fully functioning? I can't tell you how much I wish at times that I could hang out with someone who can do up their own seatbelt, make a cup of tea, and wipe their own bottom after going to the bathroom. Not to mention carry on a meaningful conversation.

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The First Rule

The First Rule is - "Be Aware". If you have come here because you are already dealing with Alzheimers, then you have some essential awareness already. If you have just happened by, then you should make yourself aware pronto, whatever your age or station. The mass of Baby Boomers is marching onwards down the corridors of life.
Stick around and find out what it's like to be a Caregiver.
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Kathleen

I have posted in the sidebar a picture of my mom in her younger years, before Alzheimers struck her. I did this to remind myself, and others reading this, that she was a vibrant, hardworking, thinking person who deserves to be remembered as such. I have trouble with that, these days - the present is so much upon me.
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What This Blog is About

I feel guilty writing about my mom's Alzheimers condition, and it has taken me a few years to come to this. But I need to do it for myself, and maybe for others out there too. This Blog is not about "What is Alzheimers Disease and What can be Done About It?" With over 45 million pages on the subject out there on the net, anyone with eyes and a brain can bone up on that. Nor am I coming from "What Options are there for Alzheimers Care?" With over 33 million pages the same applies - and your options may be different from mine anyway.

I am looking at what a really close connection with an Alzhemers sufferer means for the person most intimately involved - not someone who has put their relative "into care" and for whatever reason has opted out of any real connection with the daily drama. It is only THERE - IN THAT DAILY DRAMA - that the truth starts to bite, only there that one is forced to come to terms with the full reality of what has happened, what is happening, and what may yet happen.
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The Carer

I need to say from the outset that I hope this blog will be of help to someone, somewhere.

I have looked after my mother in various stages of Alzheimers for over 9 years now. I am her only relative living in New Zealand. I have no husband, lover, sibling, or any other form of personal, caring support.

There are times when I have felt totally alone in this world and times when I have cursed myself uphill and down dale for getting into this situation.

This blog is going to be a frank exposé of my struggles and feelings on the whole topic of Alzheimers and caring. I hope it will help someone else in the same situation as I am in, even if only to the extent of feeling that they are most certainly not alone in this mad Alzheimers Carer's world.
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