The Final Goodbye

On Friday 17 February at 4:30 in the afternoon, I watched my Ma take her last breaths.  I felt relief that she was no longer in pain.  I was lucky enough to be able to say my goodbyes and to say ‘I love you’ before she slipped away from me.

I’m focusing on the fact she is no longer suffering.  I’ve been saying goodbye to pieces of Ma for the last couple of year’s as bit by bit dementia and other illnesses took their toil. My life has revolved around her care and now it doesn’t.  I’m a bit lost as I shake off the haze of surrealism that clouds your senses when you lose somebody close to you.  I’m in no hurry.

I will write more later.  At the moment it’s raw yet new.

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A different kind of Christmas

This Christmas was my first by myself, with Ma in care.

Since Dad died, Ma and I have planned the menu and prepared it together.  We would go ham and pork shopping.  Turkey was off the list and chicken was in… only because I pleaded.  The Christmas cake would be made and wrapped in foil until the right moment came to ‘open’ it.  The massive Christmas pudding was no longer an option and we resorted to a recipe that made individual microwave puddings that we froze and ate during the year. We’d cook and prepare way to much food but it never went to waste.

Christmas Eve would find us sitting around the kitchen table preparing the different foods and listening to Christmas music.  Christmas Day would find us doing the finishing touches, with more Christmas music, while having coffee and Kahlua. We then unwrapped presents together while sipping on sparkling wine and nibbling on chocolate coated peanuts and smoked almonds.  Last year Ma attended Christmas Day services with me and my sister which was special… even though she dozed off during the sermon.

Last year I had to show her how to cut things up and how to construct the Trifle.  For years, Ma’s Trifle has been the piece de resistance. Christmas was held at our house and my siblings with their families would all descend for lunch.  After my Dad passed, everyone went their separate ways but the family didn’t miss out on their Trifle fix.  Ma would construct individual Trifles for all the men in the family. For some reason men love Trifle.  This fact belongs with, men don’t know how to hang washing.

This Christmas, everything changed.  I woke to an empty house, except for hungry kitties.  It all felt wrong.  I decided to get out and go to the gym and then took myself to Maccas to pick up some breakfast.  I felt I had to change everything.  I came home, showered and went to church where I cried on the way in; during the service; and when I came out. Everything felt wrong and I felt very ‘off-quilter’.  My sister and her family visited Ma and I arrived around 12 to go to the dining room for lunch with her.

Unfortunately they were still dressing the bad pressure sores on her bottom and I walked in to her crying and struggling, as she’s always convinced she’ll fall off the bed.  Staff then couldn’t work out how to get her out of the bed into her wheelchair.  Asking me whether they should use the lifter or whether she could stand.  The more they discussed, the more agitated Ma became until I told the staff to leave her and I would sit with Ma in her room. They organised a tray for her which was beautifully decorated, unfortunately I didn’t get anything.  She only ate a few bites and gave up.

My sister had left four 200ml bottles of pink ‘champagne’ and Ma sat up like the queen enjoying her treat, with morphine attached, sipping her sparkling while watching David Attenborough DVDs. My man arrived around 4pm and after visiting with Ma we tried to leave.  Ma started to cry and couldn’t understand why I was going.  She wanted to come with us.  We sat some more and I kept saying how hungry I was… She settled down some and we left her watching Carols by Candlelight.

My last Christmas with Ma? I don’t know.  I treasure the times we had and found this Christmas to be very difficult, the time spent with her was bittersweet.  I’m glad I changed the way I do things.  I’m glad I got up and left the house.  If you can’t have what’s familiar, do something different. I know that got me through.

Guilt and Vigilance

It’s been a long time since I’ve written.  Every time I thought about writing I felt sick. Why? I don’t really know. Maybe I just poured too much of myself out in writing this blog and maybe because I just didn’t know how to express myself anymore.  My feelings were very raw like a scab you continually pick.

I put Ma into care on 4 July 2016.  It was the hardest thing I’ve ever had to do.  I’m now the decision maker of her life and death needs.  It’s a hell of a responsibility and one I wasn’t prepared for…. but then again, how does one prepare for that?  The legals, the financials, the need for constant vigilance as well as the need for constant vigilance (yep, I repeated myself). Ma has had a number of issues since she went into care. If I wasn’t vigilant she’d slip through the cracks.  Pressure sores, pneumonia, flu, sores from urine burns, infections, skin tears, not eating or drinking… the list goes on.

I’m there every day and sometimes twice a day.  I can’t afford not to be.  The facility is supposed to be one of the better ones.  I’ve been lucky that the Manager is very response when I raise issues and Ma’s doctor is wonderful… I’m sure they hate the sight of me, but I don’t have to be liked, I just need Ma taken care of.  I pity those that don’t have an advocate or can’t speak for themselves.

I always laugh when people say to me that I must have much more time now that Ma’s in care.  In fact I now have less.  Yes, I now have freedom to go out for more than an hour and I get to sleep all night but my days are longer now.  I cook up batches of food on the weekend so I can spend more time with Ma.

I see Ma slipping away.  Every day I feel regret for having ‘given up’ and placed her in care. Every time I find a problem, like a pressure sore, I feel regret.  Every time, Ma tells me she doesn’t like it there, or somebody didn’t treat her right, I feel regret.  I look back and wonder how I could have been so weak as to have given up.  It’s now hard to remember how I struggled.  All I feel now is guilt as she slips away before my eyes.  Difficulty swallowing, not eating or drinking and sitting in her chair 24 hours a day.  I never know what I’ll find when I visit.  Sometimes I’ll tie myself in knots contemplating what she’s going to be like when I get there.  I dream of other solutions and ways of bringing her home… although home ceased to be home to her before she went into care.

Would she have been like she is now if I hadn’t placed her in care?  I don’t suppose I’ll ever know.  All I can do is live with my decision and be vigilant.

 

The things that go bump in the night…

“Macbeth does murder sleep—the innocent sleep, sleep that knits up the raveled sleave of care. The death of each day’s life, sore labour’s bath.  Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast.”

Oh Mr Shakespeare could you have been describing dementia and sundowning syndrome?  Ma’s sleeping or should I say, lack of sleeping is starting to make me into a cranky old crone. I can’t remember what a full night’s sleep is like.  I seem to sleep like a mother with a newborn, lightly, waking with every whimper and moan that Ma utters.  If Ma is having a hard time with her bladder she will be up and down more times than I care to recall.  Other nights it’s because of ‘people in her room’ or fixations or just her interpretation or her surroundings (like my poor housekeeping in not pulling up the bedding or leaving clothing hanging up!).

On a BBN or Bad Bladder Night as I call them, we can be up every 2 to 3 hours.  I feel like I’ve no sooner fallen back into bed before I hear the clunk clunk of Cyril the wheely walker heading down the hall to the toilet.  I stumble out and assist with my back turned dreaming of my nice bed while I wait for her to finish, pull her pants up and show her how to get back to her room.

Now the weather is colder I need to make sure I tuck her back in as she feels cold nearly all the time and can’t pull the bedclothes up by herself.  I have flannelette sheets on her bed and two fleece blankets and a doona but she’s still cold.  Lately she’s asked for me to put her ‘bluey’ on, which is a neck to knee fleece dressing gown which makes her all snuggly warm, or her poncho.

Recently she was fixated on her handbag.  She carried it everywhere she went, even into the toilet.  She would open it and count the money, she’d take the purses out and hide them.  So in the middle of the night she’d get up to count the money or look for the purses which she’d forget she’d hidden.  The money would always be missing, not that she could tell me how much money was in the bag or how much was missing.  Sometimes the money and purses were still in her bag but she just couldn’t see them.  At 3am I’d hear her shouting to ‘the man’ to give her back her money!  I finally couldn’t take it anymore and confiscated her bag telling her I was keeping it safe.  I also told her if she thought there was any money missing, I’d reimburse her.  She hasn’t mentioned the bag since.

Some nights she wants to sit on the side of the bed reading.  I will go back in to find her asleep with her head in her lap or lying backwards across the bed.  There is usually an ulterior motive such as a ‘person’ in her bed so she can’t lie down.  I will never put dark coloured sheets back on her bed again!  The week I had them on her bed she needed me to show her there was nobody there whenever she returned to her room of a night.

She is usually very restless of a night nowadays.  You tuck her in and 5 minutes later she is sitting up.  If she goes to sleep, it’s only for an hour and then she’s awake crying or doing what I call her ‘Moaning Myrtle’ (Harry Potter).  It’s not exactly crying it’s more of a weird kind of whimper.  I’ll ask her what’s wrong and it will be that she’s all alone, or that she wants to go home, or she wants to get dressed (which is weird because she’s been spending all day in her ‘Bluey’ and nightdress as it’s the only way she’ll feel warm). I can never tell when it’s going to be one of ‘those nights’.  She can seem perfectly alright going to bed but within a couple of hours she’s awake and restless.  The other night she called me into her room because there were flames shooting out of the bookcase.  Thank goodness she was wrong!  She settled down once I’d checked it out.

Last night was ‘one of those nights’ and now she has dozed her way through the day.  I feel like waking her up every time she drifts off… but that would be mean… but sometimes I feel like being mean. Ah sleep…….

7.5mg of Hell

I took Ma to her Urologist, or as I call him ‘The Wee Man’, on Monday.  After discussions around Ma’s problems of pain, sleeplessness and urinary incontinence, he decided to prescribe Mirtazapine to help Ma with her pain, sleeplessness and depression.  Mirtazapine is an anti-depressant used to treat major depressive disorder.  Knowing how fragile Ma has become to any medications, I was reluctant to get them for her…. And then I thought, “what if they worked and I got to sleep all night?”  I did some research and asked my Memory People™ family if they had had any experience using this on their loved one.  Experiences were varied with some having great success. As each person reacts differently it’s something that’s hard to predict so with great trepidation I gave her 7.5mg to go to bed.

I tucked her in and she was soon snoring.  She slept for five hours straight.  When I checked on her she was lying across the bed in a horizontal position with her legs on the floor sound asleep.  I’m not sure how she got there.  She was restless from then onwards… up and down every couple of hours.  In the morning she was like a zombie.  She ate some breakfast but I couldn’t communicate with her properly.  She sat there on the side of the bed with her eyes closed rocking slightly.  She spent the day like that.  Not making any sense, not understanding anything I said and drifting in and out of sleep…sitting up as she wouldn’t lie down.  She also seemed to be having increased difficulty getting off the side of the bed.

I rang her doctor for advice and in the end I decided not to give her any more tablets.  I finally got through to her in the evening when I roused her enough to eat some dinner.  She was very confused and sat there at the table after she had finished eating until I asked her what she was doing.  She responded with, “you know I’ve only been in the house a short time and I don’t know where the toilet and shower are”.  I got her washed and into bed and she was out like a light.

She roused enough during the night to find the toilet but couldn’t find her way back.  The ‘people’ were also back in her bed so I had to convince her each time that there was nobody there.  In the morning I could see she was more awake but still very dopey.  Her confusion (more than usual) continued, she also seemed very depressed and unhappy and continued to be very disorientated throughout the Wednesday.  She was also very angry at me.  She told me she wanted to go home to her house, that none of her clothes were here and the bedroom I made her go in was different from the bedroom she was in before.

Thursday was more of the same, still confused, still disorientated, still angry.  The doctor visited and checked her over and gave a script for a mild sleeping pill.  I’m not sure I dare give it to her as yet!  The carer came and I was glad to get out for a few hours to go to work.  As usual, Ma was on her best behaviour for the carer.  I walked through the door and it was ‘game on’ with her talking about her imaginary ‘friends’.  Papers that were on the table had been placed there by ‘the boss’ who had come home… She said she had to tell me in case somebody got hurt.  I’m still trying to work that one out.  The radio was on, but she hadn’t put it on… and she wasn’t going to turn it off in case ‘they’ were listening to it. She wouldn’t go in her bedroom as there were ‘people’ in there.  After spending a few hours at work and pretending that my life was normal her behaviours hit home worse than usual.

On Friday she was as cranky as a bag full of cats.  I was trying to do some work when I heard her start talking (my office is next door to her room).  “I want to go home to my house, although I suppose nobody will be there.”  When I went in to see her she said, “why am I here”?  That stopped me in my tracks.  For the life of me I couldn’t think of how to answer her question.  To stall for time, I asked her what she meant.  She repeated her question.  It was then I went for the big ‘D’ for Distraction, and asked her if she wanted to go out for coffee.  She couldn’t get out the door fast enough.  I took her up the street where she bought new slippers. We then had coffee and cake where she looked at me and said, “I feel better now”.  After a shop through the supermarket we came home and she laughed and joked.  It was like somebody had thrown a switch.

Her confusion remains worse than it was before her disorientation the same. It will be a week tonight since she had the pill.  I don’t know whether her mental state will recover.  Her mood seems to be more stable although her ‘friends’ continue to visit.

I’ll just take it one day at a time…

Ma’s way with words (part 1)

Ma’s always had a way with words.  She was a reader and great doer of crosswords.  If she had a spare moment her nose would be stuck in a book.  Growing up she’d have us kids confused or in stitches with her various sayings.

I had curly hair as a kid and whenever I was naughty, which was quite often, Ma would start reciting, “There was a little girl, that had a little curl, right in the middle of her forehead.  When she was good, she was very very good… And when she was bad she was horrid!”.  This would always make me cranky!!!  If we pulled a face we were told if the wind changed our faces would stay like that  (I was always afraid of that one).

One of my favourites was, “up in nanny’s room behind the clock”, which she used whenever we wanted to know the location of something that she didn’t want us to know.  If she didn’t want us to know where she was going… or was just being contrary, she’d respond with “I’m going there and back again to see how far it is.”  There was also the “wigwam for a goose’s bridle” in response to us asking what something was… again used if it was something she didn’t want us to know.

Kids being kids, we were always getting into things we shouldn’t and Ma was always finding us out to our complete astonishment (us thinking we were so clever).  When we asked how she knew, she’d always tell us, “because I’ve got eyes in the back of my head”.  My sister one day decided to find out whether this was true and checked the back of Ma’s head very thoroughly.  I think she was very disappointed when she couldn’t find anything. If we were being particularly painful (which was probably often) and asking why?… but why?… why? She’d respond with, “because ‘Y’ is a crooked letter and you can’t straighten it!”

If Ma was making a phone call to somebody she knew well she’d announce herself with: “It’s only me from over the sea’, said Barnacle Bill the sailor” or “is that you, because this is me” followed by a laugh.  To describe somebody who was very happy, she’d say they were “as happy as Larry”… I never did find out who Larry was or  “Billy Johnson’s black pig” for that matter.

I always remember Ma reciting a rhyme about Thor, “The Thunder God went for a ride, upon his favourite filly.  “I’m Thor!”, he cried. The horse replied, “You forgot your thaddle, thilly!”  This would cause me untold glee.

But my favourite saying of hers would have to be “better an empty house than a bad tenant!” in response to a belch… or we’d get, “beg your pardon Mrs Arden, there’s a chicken in your garden”.

I know this is about Ma but I couldn’t not write about my Aunty, who we always thought was the very epitome of a lady, describing somebody as the ‘town bicycle’! (I’ll let you work it out).

These sayings I treasure because they remind me of Ma and my childhood.  She still uses some of them to this day.  I thought I’d make an attempt to capture them before they get lost.  She has also coined a few new ones in recent times which I’ll cover in Part two.

The Ma I used to know

As Mother’s Day approaches I’m reminded of what I’ve lost, and found in my own Ma.  Looking back over the years I look at what we’ve shared together. We were like two peas in a pod.  We loved to go walking together until her arthritis won and walking became too difficult and painful.  She would teach me the names of the different flowers that crossed our paths and from this I developed a love for gardening.

Growing up I wasn’t interested in cooking.  I didn’t bother as the rest of the family were good cooks so I didn’t consider it necessary.  When the family get togethers stopped, as people went their separate ways and got caught up in their own families, I started to take an interest.  Dad, who was a baker by trade, and I would make Easter buns from scratch every year.  I haven’t done this since he passed away.

As my parents aged I took over more and more of the cooking and started collecting cookbooks and hoarding dozens of pull outs from magazines.  Ma and I would pour over the recipe books discussing the merits of recipes and what we were going to cook.

Recipe books are still something we share together.  Ma can’t operate the stove and can no longer remember where any of the ingredients are kept but she can still sit at the table and help me cut things up.  She can roll a mean Lamington in the coconut and help me with sausage rolls.  We taste test and argue about what needs to be added.  Her secret ingredient is Sweet Chilli Sauce for anything that just doesn’t taste like it should. It works!  She has trouble knowing how to cut some things up and can no longer remember her tried and true recipes.  I’m so glad I took it on myself to write my favourites out a long time ago, some of which I’ve shared on here.

We were cutting up onion and garlic the other day and I used the flat of the knife to crush the garlic so the skin would flake off, this was something she taught me many years ago.  She told me she’d have to remember that trick for next time.  That’s when you feel sad, sad for what she’s lost.

My Ma is a wonderful cook. Over the years I think she has managed to create a jam, pickle or relish out of any ingredient you care to name.  The big saucepan was always bubbling away on the stove emitting odours of vinegar or the sweetness of sugar.  Those jars were sold to raise money for various local charities.  I now make Ma’s famous Tomato Relish and last year potted up a few jars of Strawberry, Ma’s favourites.

The Christmas pudding, cake and mince tarts are no longer part of her repertoire, I have taken up the mantle.  Occasions like Christmas and Easter create a fixation and confusion in her.  For weeks beforehand she wants to cook the Good Friday fish or buy the Christmas ham.  It prays on her mind, nibbling away at her psyche until finally I give up.

The Mother’s Day and birthday cards I have given her over the years were from a daughter paying homage to a mother, supporter and best friend.  Every card I used to give her would reduce her to tears.  It was always my mission to find the card I knew would make her cry. Over the last couple of years, I’ve struggled to find a card to express our changed relationship.  I can’t bring myself to buy the cards of old.  Don’t get me wrong, I still love my Ma to the moon and back, it’s just that things have now changed, she is different from the Ma I used to know

I’m now more like the mother than the daughter.  I now take responsibility for her health and well being.  I now take her everywhere she needs to go.  I now spend nearly every waking hour with her.  So yes, I don’t feel like I can give those cards any more.  I’m sad for the mother I’ve lost.

But I’ve also found another Ma.  Over the years whenever I’ve asked Ma if she wanted to go out, 9 times out of 10 she would say no.  Now Ma will nearly always go out with me.  She is more outgoing.  She asked me for purple highlights (we’re talking bright purple) before Christmas and has been rocking them ever since.

My Ma has never been very demonstrative.  She hugged me the other day of her own accord for the first time I can remember.  I was blown away.  She now uses a term of endearment to address me… she has never done that.  (Not sure whether it’s because she can’t remember my name or?)  Anyway I’m basking in the glow.

While I’ve lost the Ma I knew, the new Ma is just as loveable albeit different.  So this year the Mother’s Day card will be different from previous years and as always I will try and pick the card that makes her cry.

During the month of April I am running/walking to raise funds for Alzheimer’s Australia. If you would to support me please go to my fundraising page.