Ma’s way with words (Part 2)

Ma doesn’t say many of her old sayings any more.  Occasionally she will utter one but more often than not it’s a new turn of phrase.  Some real rip snorters in fact…

I’m a bit of a Queen fan (the rock group).  Whenever there is thunder around I will utter the words from Queen’s Bohemian Rhapsody, “Thunder bolt and lightning”.  A couple of year’s ago Ma started saying, “very very frightening” in response.  I have no idea where she got the words from as she was never a rock and roll aficionado but to this day if I say my line… she will say hers!

These days Ma’s nights and days are very much mixed up.  There are many times when she thinks night is day and vice versa.  Even though it’s pitch black outside she will still insist it’s daytime and there is something ‘wrong’.  After one such occasion she uttered to me, “I don’t like these 24 hour days”.

Some days I can’t win.  While we were out shopping I showed Ma a dress I thought would suit her.  After looking it up and down she told me she couldn’t wear it because it was a grandma dress!  I reminded her she was a grandma… she just looked at me. Undaunted, in the next shop, I showed her another dress to which she told me she couldn’t wear because she was a grandmother… I gave up.  No dress was bought that day.

Recently I purchased a bottle of wine and mentioned the name of the wine to Ma.  Ma must not have heard me correctly (or I didn’t speak clearly) because Ma responded with, “what?” “You’ve prepared human?” “Since when have you become cannibal?”

I made some 20160425_115636waffles recently on Ma’s ancient waffle iron.  The ones that weren’t eaten I put in the freezer for later use.  Ma requested some of the waffles for her dessert which she polished off with ice cream and maple syrup.  After she had finished demolishing them she told me she could still hear them ‘waffling’…

My favourite new saying of Ma’s would have to be this one… The other day I asked Ma if she wanted something to drink to which she replied, “yes”.  When I asked her what she wanted she told me she wanted something, “wet and wild”… I finally worked out she meant brandy.  The new name for brandy in our house is, “wet and wild”.

Every new little saying or quip gives me a giggle.  The mother of my past is slowly diminishing.  This new mother is different but still amusing.

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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.

Memories of dementia

During the past 12 months I’ve learnt more about dementia than I ever wanted to.  Ma’s deterioration has led me to research and learn as much about this syndrome as possible.  After being seen by several Geriatricians, Ma is still undiagnosed.  Yet, her doctor and I remain convinced she has dementia, probably Lewy Bodies.  When I think back through my childhood I now realise the friends of Dad’s that were ‘acting funny’ had dementia.

As a kid growing up with older parents, Ma was 40 when she had me and Dad was 50, I was always worried my parents would die earlier than other ‘normal’ kids (ie kids with younger parents).  My parents like to tell the story of the day they found me crying my heart out in my room.  When they asked me why I was crying, I responded, “you’re going to die soon”.  Such was my worry of having older parents.

My parents were very active socially, Dad belonging to Rotary and Ma to Innerwheel.  They were always entertaining or going out to different functions.  In this way my sister and I were exposed to a variety of people from a very early age.

There was a man that was fixated on Dad and would visit him at every opportunity, presenting him with various gifts.  Dad’s best friend, who was a very highly strung man, one day visited and was convinced that he’d just disembarked from a warship and that Ma and I were there to greet him.

I will always remember a good friend of Dad and Ma’s visiting after she’d been diagnosed with Alzheimer’s.  She was my first real introduction to the disease.  She sat in a chair and tried to carry out a conversation.  She would become stuck for words and then shake her head and say, ‘no, no’.  It broke your heart to realise that she knew what was happening to her.  She knew that she would soon forget who she was.

It was about this time that the media reported a connection between Alzheimer’s and aluminium saucepans.  Being quite young, I was terrified I was going to catch it, as we had aluminium saucepans!  It was probably not long after that that it was reported that white bread caused cancer…

I look back at my Dad in his later years and I know now that he had dementia.  Most probably Alzheimer’s (the most common type of dementia).  He would ask the same question over and over.  He would sit and fiddle and dismantle transistor radios until they wouldn’t work.  He could no longer write the newsletter for his Probus Club and he could no longer give an ‘off the cuff’ speech at the drop of a hat (he found this out the hard way when he got up to give a speech and became very muddled).  His driving was appalling and he couldn’t pass the test to get his licence renewed.  That broke him.  They were his legs and they were taken away from him.

I remember being impatient with him for his constant questions. I remember Ma yelling at him for leaving soiled pants in various places in the bedroom as well as other things. I remember helping him clean up after soiling himself as he didn’t want to tell Ma. I only told her after he’d passed away.  I showered him in his undies when he was too impatient to wait for the carer to come and shower him. Things that would have appalled him if he was himself.  My aunt and uncle wanted Ma to place him into care, Ma refused to do so.

I took him to the ballet as he once took me.  He became more affectionate and spoke of how proud he was of me.  The last Christmas he had with us he became very upset with the noise and confusion a big family Christmas can bring.  Ma promised him that that would be the last Christmas and he was happy.  He had bought Ma and I perfume but had addressed both gift tags to Ma.  It’s funny that throughout all of these signs, I just remained oblivious in my own little world.  He dropped dead suddenly from a heart attack on 5 January.  Looking back, I’m glad he went that way.  We were spared the agony of losing him twice and of making decisions on his care.

My awareness has only awoken due to Ma’s deteriorating condition.  The search for answers to Ma’s behaviours has led me to become more aware.  As I’ve learnt more about dementia I’ve wanted to raise awareness.  I want more support for sufferers and their carers.  I want people to stop turning their back on people who suffer with dementia.  And more than anything else, I want a cure for dementia.

People don’t want to talk about dementia.  It’s too scary.  Fundraising for different cancers achieve more funds than dementia yet dementia numbers will increase as the population ages (the risk of dementia increases over the age of 65). Dementia is the second largest killer of Australians, surely that’s enough reason to find a cure.

I am currently raising funds for Alzheimer’s Australia for the month of April who provide support services, education and information about dementia.  If you would like to support me, go to: Memory Walk.

 

When day is night and night is day

Night times are turning ‘interesting’ in our house.  I have noticed for a while now that Ma is finding it difficult to tell night from day.  Daylight saving just adds to the confusion as it’s so dark in the morning and so light in the evening.  A nap in the afternoon just makes her think it’s now morning and time for breakfast.  Each night it’s different.  Some nights she’ll sit up all night on the side of the bed.  She won’t tell me why, she just says that she feels more comfortable.  I’ll walk in to find her slumped backwards or sideways or even with her head in her lap.  Other nights she’ll sleep through other than toilet stops.  From what I’ve read and from what I’ve been told, it’s more than likely that Ma is experiencing what is called Sundown Syndrome or Sundowning.

Sundowning or Sundown Syndrome is when people with dementia become more confused, restless or insecure late in the afternoon or early evening.  It can be worse with triggers such as a move or a change in their routine.  People suffering from sundowning can become demanding, restless, upset, and suspicious, disoriented and even hallucinate, especially at night.  Attention span and concentration can become even more limited.

Nobody knows what causes sundowning, although it seems to result from changes that are occurring in the brain due to dementia.  People with dementia tire more easily and can become more restless and difficult to manage when tired.

Sundowning may relate to lack of sensory stimulation after dark.  At night, there are fewer cues in the environment, with the dim lights and absence of noises from routine daytime activity.  Ma’s perception of night and day has really diminished.  At 2am in the morning she will think it’s time to get up even though it’s pitch black outside.  Lately she has wandered down to my room crying.  She thinks she is alone in the house and wants reassurance that I’m still there.  (I really don’t know where else I’d be except home, but that’s the nature of the confusion).  She also says she’s cold (it has been very warm lately, even of a night.  I’ve been sleeping with only a sheet.  She wants a poncho on or her winter dressing gown.

As the dementia worsens and the sufferer understands less about what is happening around them, they may become more frantic in trying to restore their sense of familiarity or security.  It is said that the person becomes more anxious about ‘going home’ or ‘finding mother’ late in the day which may indicate a need for security and protection.  They may be trying to find an environment that is familiar to them, particularly a place that was familiar to them at an earlier time in their life.  Ma at her worst, will talk about going to the ‘other house’ which is exactly the same as ours but somewhere else…. But she doesn’t know where.  She is always convinced there are other people living in the house with us. I always show her the locks on the windows and doors and tell her about them.

A person experiencing sundowning, may be hungry, uncomfortable, in pain or needing to use the toilet, all of which they can only express through restlessness.  Factors or triggers, as I like to call them, that can have an impact on behaviour when the sun goes down include:

  • Fatigue – Ma just doesn’t sleep very well and tends to drop off during the day sitting up. This can go on for days until finally she is so exhausted she sleeps.
  • Hunger – I’ve yet to find this a problem with Ma. She likes her food.
  • Infection – such as a urinary tract infection. A sudden change in behaviour could indicate there is an infection.  In my experience the regular symptoms of a urinary tract infection ie. regular need to urinate, temperature and burning when urinating don’t apply to Ma, her confusion just increases dramatically.  She will get her possessions and pack up her wheeled walker and go off around the house.
  • Pain – There are many causes of pain such as shingles, neuralgia etc. Pain can get progressively worse through the day. Ma suffers from chronic pain due to arthritis.  After years of taking very strong pain killers (opiates) her system can no longer handle them due to her fragile state.  Since decreasing her pain medications and starting her back on an anti-inflammatories her pain seems to be back under control without the heightened confusion. She also takes Curcumin with black pepper, a natural anti-inflammatory suggested by her urologist.
  • Medication – Consider whether restlessness is due to medication eg medication may be causing ‘restless’ legs or cramps; diuretics may be causing incontinence, some medications may cause agitation.
  • Constipation and/or dehydration can significantly affect behaviour. This is certainly true in Ma’s case.  If she hasn’t emptied her bowels, her confusion increases.  I keep a strict eye on her bowel movements as she suffers chronic constipation and needs laxatives every day to keep on top of things.  She doesn’t like drinking either, except cappuccinos or brandy… Trying to get her to drink any other fluid is an uphill battle.  Again, her confusion increases when it’s a hot day and she won’t drink.  A glass of fluid (of the right sort) usually decreases her confusion.
  • Extreme temperatures such as a heat wave. Ma’s brain can’t seem to tell her when she is getting overheated.  She will sit in a jumper when it’s very hot with her body perspiring but she still doesn’t think she’s hot.  Her confusion will increase and it’s only when I get her cooled down that her confusion decreases.

Where to begin

Always discuss concerns about change in behaviour with their doctor, who will be able to check out whether there is a physical illness or discomfort present, and provide some advice.

Arrange for a thorough medical examination and discuss the person’s medications with the doctor. Sometimes changing the dosage or the time that medication is given can help relieve the symptoms. The doctor will also be able to advise if there may be undesirable side effects of medication.   Reducing some of Ma’s strong pain medications has led to a marked reduction in her confusion.

Suggestion that may help

  • Early afternoon rest – If fatigue is making the sundowning worse, an early afternoon rest might help. Keep the person active in the morning and encourage a rest after lunch.  Ma drops off to sleep sitting up during the day.  I try and keep her stimulated with activities but sometimes I don’t win.
  • Avoid physical restraint – Don’t physically restrain the person. Let them pace where they are safe. A walk outdoors can help reduce restlessness.  I hear Ma get up and listen to where she is going.  I always breathe a sigh of relief when it’s the toilet and I get up and help her.  It’s when she ‘travels’ further that I start to worry and try to find out where she is going.
  • Encourage comforting pastimes – Some people are comforted by soft toy animals, pets, hearing familiar tunes, or an opportunity to follow a favourite pastime. Nightlights or a radio playing softly may help the person sleep.  Ma finds great comfort in the cats.  The old boy, Colonel Gadarffi like to cuddle and smooch.  I sometimes go in to find her hands lying on him as she sleeps.  Ma likes to listen to the radio which is push button, so easy for her to operate.  She can’t work the television so if she wants to watch a program I turn it on and off for her.
  • Minimise noise and lights – Consider the effect of bright lights and noise from television and radios. Are these adding to the confusion and restlessness?  Ma has her bedside light on all night.  I also have a sensor light in the hall and keep the toilet light on all light so she can see where she is if she gets up.  My bedroom door is on the way so she wakes me up when she goes past.
  • Check for objects – clothing hanging on doors, doonas folded over, pillows doubled up, curtains and mirrors, can all be misconstrued.  Ma will think they are people and refuse to enter the room or sleep in the bed as she thinks there is somebody already there.
  • Avoid upsetting activities – Try not to arrange baths or showers for the late afternoon if these are upsetting activities. The exception may be the person who is calmed by a hot bath before bed.  Ma sometimes wants a PTA (which is a bit of a rude acronym for ‘girl bit’, bosom and armpits) rather than a shower.  Usually when she is really tired or she is feeling cold.
  • Consider medication – Some people may need medication. This will need to be discussed with the doctor.  Ma was on regular strong pain killers and Mogadon for many years.  Her confusion has decreased with the reduction of these drugs. We are reluctant to use any medication at this stage.
  • Stuffed toys, pets, familiar music or a favourite activity can help comfort and distract the person.  Ma has taken a liking to documentaries on television.  At the beginning of the week I read through the television guide and highlight what I think she will like.  This makes them easier to find.  I always send her stuffed cat with her when she goes into hospital or respite.  I also play her favourite music in the car on the way to appointments and in the house.  Dragging out the cook books and discussing recipes and what we are going to make goes a long way in distracting her.
  • Daylight saving seems to wreak havoc with Ma’s internal clock.  Because it is still quite dark at 6am and still light at 7pm she gets very confused.  She has told me she doesn’t like these 24 hour days!

A lot of the information I’ve placed on here is from the Alzheimer’s Australia website which has a lot of useful information.

For wonderful support and advice try the Memory People™ on Facebook.  It’s for patients, caregivers, advocates, family members and professionals, seeking comfort and understanding, and receiving support and helpful information.