A respite from Ma?

My sister booked Ma into respite care a number of months ago (the waiting lists are several months long).  The way I’ve been lately, I knew I needed a break.  Not only for my sake but for Ma’s also.  As the date approached my stomach started tying up in knots.  Who was going to take her to the toilet the 4 and 5 times a night she sometimes goes?  Who was going to make sure she emptied her bowels regularly and wiped her bottom when she did so?  We have finally found a regime where she goes every one to two days.  Which has helped her confusion and has made her feel better.

I got her doctor to fill out the medical paperwork to which I added my notes as well as her medications list and medical history.  I also created another list of information containing problems that Ma encountered the last time she was in respite care several years ago.  These included her bowels and what I have done to keep them working; what triggers increases in her confusion and hallucinations; instructions on drying under her apron and breasts and the cream to use (which I supplied); a request to keep her walking rather than taking her everywhere in her wheelchair so that she keeps mobile (learnt that lesson from her last stay in respite); and instructions on how to care for her ulcer including the need to bag her leg rather than scrubbing it under the shower (yes, they did that last time she was in care which resulted in infection and the need for hospitalisation).

I was given the medical form to fill out and had to ring to ask who had to fill it out was it was titled Medical Officer’s Report; it had to be filled out by her doctor.  Doctors are busy, overworked people, I went through her doctor’s report and added my information to it plus her list of medications.  All of Ma’s medical file is kept at the house as the doctor visits her there.

Every time I talked to staff or the Manager at the facility they added information or told me of something else that had to be done.  After ringing the Manager about the Medical Officer’s Report I was told I had to pick a doctor off a list for Ma which I did.  Next time I rang to ask a question I was told that I needed to contact the doctor and ask them to be Ma’s doctor while she was in care as she couldn’t have her own doctor.  The first ones I rung said they weren’t taking any new patients (why are they on the list I asked myself?).  Others didn’t ring back.  I finally got a doctor and emailed Ma’s medical information, only to be informed when I rang that they couldn’t print it and wanted it faxed.  After faxing the information they told me they already had that information but wanted a different form which the lady filled in over the phone.  The evening before Ma was due to go in I opened an email from the Manager asking me whether I had organised with the doctor to admit Ma on her arrival… it was at this point I gave up as I knew the next day was a public holiday and I wasn’t going to be able to ring the ‘new’ doctor.

The day after the public holiday I rang the facility, after organising the doctor, only to be told I was missing another four forms that needed to be filled in.  There was no sign of the form I filled in over the phone.  At this point I broke down as I’d had enough.  Poor communication, nobody rings you back and it’s all been my ringing them asking for information.  The lady I spoke to turned out to have some empathy and was very nice to me.  So after spending 40 minutes filling out paperwork which involved questions about Ma’s children, growing up, marriage, work etc we were ready to go.

Day 1 – On arrival we are taken to Ma’s room which has a lovely outlook on a garden.  The room is very sparse and reminds me of a hospital.  There is a large mirrored wardrobe door opposite Ma’s bed which worries me knowing Ma’s problems with ‘visitors’.  Different people come in to introduce themselves… the registered nurse, aide, social activities person (SAP).  I talk to the nurse about Ma’s bowels; making sure she is dry under her sagging bits; and not showering her ulcerated leg.  I am informed I need to supply all of Ma’s dressings including pads, dressing packs etc.  Nice to be told now!  I also ask about Ma being allowed her brandy of a night time.  The SAP informs me that residents have a big fridge where their alcohol is kept and can have two drinks a day.  They also have happy hour on a Friday.  She says she will put Ma’s stuff in the fridge… it’s still in her room on day 6 of her stay with the first bottle being empty.  The social planner we were promised by her has also not made an appearance.  Ma is in high care so she has a buzzer for a nurse so she can get help to the toilet etc.  I leave her for her first night, worried and upset.

Lessons learnt

  • If you are going to put your loved one in respite care for a break make sure you document all of their health history backed up by their doctor if you can.
  • If you are going away allow a couple of extra days so that you can see how they settle and sort out any problems such as their medications and any health issues that need careful treatment. They say they are listening but they aren’t.  This makes it very hard to trust your loved one to their care.  Take the time to make sure things are being done properly.
  • Try to get instructions in writing. Make a list of questions you want to ask.  I now know the things to look out for but I didn’t before I placed her in respite.
  • Talk to your loved one and make a list of the most important things that need to be considered for their sake as well as yours.
  • Use their time in respite to assess the facility in case you need to consider permanent care. How do the staff treat the residents?  Are the staff attentive to questions from residents or are they palmed off and talked down to.  Do the staff listen to your concerns?
  • Find out what the facility does and doesn’t supply.

You are not alone…

Sometimes you’re not as alone as you think you are.  During my time being Ma’s carer I’ve felt very much alone.  Each battle I’ve fought, either over her health or bureaucracy, has led me to believe I’m very much on my own.

Enter the Memory People (MP).

I discovered this closed group on Facebook after reading about them on somebody’s blog.

MP are an Alzheimer’s/dementia and memory impairment support group, with members who are patients, caregivers, family members, healthcare providers, and those who have lose their loved ones.  Rick Phelps founded MP after being diagnosed with Early Onset Alzheimer’s Disease in June 2010, at just the age of 57.

He realised there was a need for support for all those caught in the hell that dementia is, and created MP to be a place where people could share their stories and walk the journey together.  Rick’s Assistant and Executive Director of MP, Leeanne, works with Rick to support members of MP and on projects to bring awareness to dementia.  New members are made to feel welcome and encouraged to share their story.  MP is a large group (around 13,000 from around the world) but they treat you like family.  People share their stories and find support, helpful information, and most of all, you are made to feel you aren’t alone as you struggle along the journey of dementia.  They understand, care and will walk with you, each step of the way.

There is much love and understanding from MP.  They don’t talk about false hopes or miracle cures, they focus on the reality, and helping each other through each day.

When I joined MP I was greeted with open arms and made to feel so very welcome.  I read through people’s many posts and learned that there are still people out there that care.  My first post was to ask advice on Ma’s aversion to her bed. I received many responses of support and advice.  When I placed a photo of Ma holding her great grandchild I received, at last count, 260 likes along with around 30 lovely comments.

Some people’s stories are heart rending and not a day goes by without the report of the loss of another loved one to the dreaded disease called dementia.  This disease robs us of our loved one twice; once when they forget who we are and second when the disease finally claims them.

MP is a closed group, but welcome to anyone.  If you are in need of support, join us today. https://www.facebook.com/groups/180666768616259/

10 Lessons I’ve learnt caring for Ma

Over the last 12 months, caring for Ma has taught me many lessons.  Some I’d rather not have learnt.

  1. To be tidy! – I’ve never been the world’s tidiest person, I’ll be the first to admit that.  In the past, when Ma could dress herself, I left clothing hung low on cupboard doors so she could reach it and jackets were draped over chairs.  I soon learnt that these items could at any time turn into people or animals.  I would hear her talking to them.

    If I leave anything draped on a chair, the ‘boy’ who visits her, wears it and then she won’t!  She’ll say, “I’m not wearing that!  The boy’s been wearing it all night!”  The item will either have to go in the wash or be snuck back into the cupboard.

    Bedclothes folded back, because of the hot weather, turn into ‘bodies’ in her bed so she wouldn’t go in her room.  I always have to make sure bedclothes are smoothed within an inch of their life.  Just last night, when I’d forgotten to smooth her bed, she refused to sleep in her room and slept in her chair.  I have had to learn to hang stuff away and remove anything that looks like it could ‘manifest’ itself.

  2. To trust only myself – I’ve been let down on so many occasions I’ve lost count.  People promise they will call or call in, but they won’t.  They will say they will do something for you, but they won’t.

    Over the last few months I’ve been forced to ask for help from people when I couldn’t do things.  Unfortunately this usually ended up either: a) not happening ie. they forget or didn’t get it done; b) making me feel like I’d just asked them to fly to the moon; or c) just plain stuffing up (maybe I give bad instructions).  So now I just try to do it all and forget about the things I can’t get done that way I don’t get disappointed.

  3. You’re on your own – Don’t expect help from services. The services that are in place to help are so over subscribed they can’t help.  They assessed Ma as needing high care and said we could access extra help at home…. that was in June 2015.  We are still waiting.  It’s not like I haven’t tried to get help.

    The social worker at the hospital couldn’t help.  The Federal Government’s My Aged Care were shocked at the waiting list but the most they could offer was four (4) hours in-house respite a week in my name (which I’m very grateful for).  I even wrote to our state and federal members, but they didn’t care or didn’t respond.

  4. Do your own homework – Don’t wait for services that may never come.  Talk to other care givers for hints and tips.

    If I hadn’t contacted My Aged Care I would have no four hour break to go to work.  If I hadn’t contacted the Continence Foundation of Australia Ma wouldn’t have found the right pad or accessed Government funding for pads and we wouldn’t have been given helpful information about managing her bowels.

  5. Be prepared! – Ma’s bowel and bladder can be unpredictable.  You just never know what they are going to get up to.  I always take a change of pants, wet wipes, disposable gloves in a plastic bag whenever we go out.  I learnt this lesson from a poor lady who had been ‘caught short’ and was in a dreadful mess from a bowel accident while we were out shopping one day.

    I have a full list of Ma’s medications, medical history and her doctor’s details, pension and medicare cards on the back of the front door, and in both our handbags. It’s a real time saver when you go to a new specialist or she needs to go to hospital.

  6. Increased ‘craziness’ has a trigger! – Ma can have some good days where she doesn’t hallucinate a lot and her confusion is minimal.  This can change with a wave of a wand.  It’s like a switch is flicked.  One minute she’s there, and the next minute we are off to ‘never never land’.  I’ve found that there are triggers that send her ‘off’. These include:  tiredness, constipation, being upset, medications (increase in pain medications or a new medication), pain, illness such as a Urinary Tract Infection (UTI), and my latest nemesis, heat.

    This is hard to keep on top of, sometimes you just have to ride it out!  Make sure you rule out the ‘nasties’ like constipation and UTI or other and seek medical attention if you aren’t sure.

  7. I will never be patient enough – Every day I pray for patience with Ma and every day I lose patience with Ma.  When you are with somebody 24 hours a day, 7 days a week, you will lose your cool.  Sometimes I scream and shout and feel like running away from home.  I can hear myself yelling but I can’t stop myself AND I hate myself for it.

    If Ma is having a bad day I sit with her and try to stimulate her through conversation.  It’s a huge emotional drain and when you are a bit of a loner like me it really starts to get on your nerves.  I’ve learnt to walk away to what I call my ‘naughty corner’ and re-group.  If it’s evening this will involve a glass of wine.  Sometimes I think I’ll be lost forever.

  8. You will lose friends and family – This has caused me a lot of pain.  My focus is now entirely on Ma and I’m not the person I once was.  People move on.  People can’t deal with Ma’s changes, or mine for that matter.

    I don’t have the energy to waste chasing them so I let them go and mourn their passing.

  9. Ma’s reality is different from mine – Who is to say whose reality is the correct one? Ma’s reality is made up of people I can’t see doing things I can’t see.  Just yesterday the ‘army men’ were on the roof with a couple of telephones.  The other day she wouldn’t go back to bed because she said fleas had been biting her.  Of course I just think to myself, “here we go again”, but I go and look anyway and find ants in her bed!

    I’ve learnt that sometimes her ‘crazy’ has an explanation or her use of words leads you down a different path to what she intended.  So now I always investigate first before I look for a trigger before I make my mind up.

  10. Find ways to hang on to your sanity – The first thing a carer is told is, “you have to look after yourself!”  I always laugh when I’m told that.  There is no way as a carer that you can make this happen unless you have services and money to spend on caring for your loved one ($60-70 an hour).  So, you learn to find things to help you hang on to your sanity.  Mine include an hour at the gym three mornings a week; my blog where I can cut lose on all that ails me; op shopping where I can lose myself among racks of second hand clothing in search of treasure… and clothes I’m sure I will never have the opportunity of wearing; music, reading and prayer.  You have to find your ‘escape’ and find ways of losing yourself where you can.


Merry Christmas?

I hate this time of the year, although probably not as much as my birthday.  I decorate and bake my little heart out but it all feels hollow and somewhat desperate.  There’s always something missing.  Maybe it’s the innocence of youth and the awe that I had back then.  And the fact that the big family Christmas died out when my Dad died.  I have decorated ad nauseum and have got 8 sets of solar lights blinking their little hearts out.  I’ve even hung a set of lights outside my own window to cheer myself up.  Ma has two sets which she loves to watch out her window of a night.

I realise this could be my last Christmas with Ma at home (not that it’s home to her) or even her knowing who I am for that matter.  Who knows?  So, the race is on to make it a memorable one.  Unfortunately Ma started fixating on the ham back in November until I let her buy one, or let us say choose one, last week.  The sucker is 6kg (OMG, there is two of us) and was the first one she saw.  I just gave up and bought it…

Unfortunately with the ham out of the way she has moved on to the triffle. Luckily I could use the very real excuse of ingredients expiring before Christmas.  Not to mention the fact that she wants to make the triffle now!  I have to keep on pointing out that Christmas is still a ‘little’ way off.  I try and go through the different recipes with her to distract her.  Not sure how long I’ll get away with it though.  The thing that worries me is what she will move onto next…

I can sIMG_0470ee her short term memory moving further out of reach.  Appointments are repeated several times a day as are any other ‘important’ occurrences.  She is getting less bothered about ‘stuff’.  Getting opinions and ideas from her is hard work.  I sometimes wonder whether I should still bother… but I do.

So at the moment Christmas is high on her agenda.  Old recipes have slipped out of her memory but we have back-ups.  Things are harder for her now.  She is moving further away.  My patience is sometimes stretched to the limit and beyond.  We will continue and I will try to make sure that this is a Christmas to remember.  Albeit a bittersweet one.



That Bastard, Dementia

Don’t give me a sainthood
I’m doing just doing my best.
Just trying to cope and pass,
The dementia test.

I’m angry, I’m moody,
I want to scream from on high,
I’m not ready for sainthood;
So just back off awhile.

I’m losing my patience,
I’m answering back,
This thing called dementia,
Is on the attack.

One minute you’re cruising,
And think you know best,
Until the bastard, dementia
Takes over in jest.

Here comes all her friends of imaginary fame,
To mess with her psyche, she’s gone ‘looney’ again.
There’s that boy who just sits and puts on her gown,
And the ones who just wander and mess ‘Cyril’* around.

She’s lost her own bedroom,
The toilet, it’s gone.
And the bed it is crowded and looking very forlorn.
The two bed house has many beds you see.
They’re all in her mind,
They just change, mysteriously.

Locked in – she is trapped
And wants to leave, and go home,
For the doors they are closed and she no longer belongs.

It’s a horrible thing to lose who you are,
To not know your family, who watch on from afar.
No more will they visit, they’re put off by the theme,
Of continuing challenges of life at its extreme.

That bastard, dementia,
It will steal her one day.

Until then I’ll enjoy her and we’ll make our own fun,
They’ll be coffees aplenty and brandy bar none!
Because I’m storing up memories, of things that we share,
That one day she won’t remember,
It will be only me who will care.

So don’t give me a sainthood,
I’m struggling, at best.
Don’t give me a halo,
Cause I won’t pass that test.

Just be by my side
And help share the load,
Because that bastard dementia,
Will one day deal; its final blow.

*Cyril – Ma’s wheely walker

Having a wallow in Self Pity Street

The fight over Ma’s bed continues.  So far I’ve managed to convince her to sleep in her bed although it’s been a battle that I’m so tired of fighting.  Last night she was going to sleep in her electric recliner chair until she found it was ‘closed off’. Nothing was actually wrong with it… she just thought that it was.  Next thing we move into her bedroom so I can put her pants on and it’s all I can do to get her to hold onto the rail so I can put them on.

While I exit the room to clean up after her shower she decides she’ll sleep in the chair in her bedroom.  I come back to find she’s got her head on the window sill on a pillow and a rug over her knees.  This was after I promised her I’d sleep in her bed with her again.  I turn her television on in the hopes it will lure her out of the chair and start making conversation about what’s on and playing up to La la and Colonel (the cats).  Her show starts and I ask her whether she wants to watch it.  Finally she makes the transition to the bed and we watch her show together.  After I turn the television off she tells me she’s off to bed and starts to get up!    Aaargh!! I finally convince her to stay put and we settle down for the night… or try to.  It’s hot and it’s crowded and my back is aching and I’m seething with frustration.  I was sure it was going to be the longest night in the history of mankind.

This morning I couldn’t wait to get out of bed.  I’m so tired I feel like a zombie without the flesh eating part.  It’s all I can do to be civil to her.  She is cheerful and eats her breakfast which I serve in her bedroom!  She told me she’d stay in her bedroom if she had a smaller bed so I carry the single bed up from the garage a piece at a time.  Heaving the mattress up the stairs was interesting and I was sweating like a pig by the end of it all.  I finally lug it through the front door and Ma says to me, “can I help you with that?”  If I wasn’t so dratted down and out I’d cry.  The respite lady arrives at this stage and after washing the dust of me I leave for my hour out.

Some days I can’t wait for her to go into care so that I can breathe, so I can go out for two hours and not worry about whether she’ll be ok.  I’m tired of watching the clock every minute I’m out to make sure I don’t leave her alone for too long.  I’m tired of being called a liar and a thief when she enters physcho mode.  I’m tired of not being able to go to work and interact with people and have conversations and think about things other then bowel movements and medications.  I want to go to bed at night and sleep right through without getting up.  Then the guilt hits me.  I feel guilty for wanting to escape and wanting my life back and I feel guilty about giving up and placing her in care.

I miss friends I thought I had but didn’t and am grateful for the acquaintenances I had that are now friends.  I’m grateful I have this time with Ma and pity those who are missing out on this time with her.  I’m a lucky carer, my Ma knows me; her memory, although a wee bit dodgy at times, is still pretty good for 88 years of age.

Time I erected the bed in her new bedroom aka the lounge room….

Dementia is Australia’s Second Largest Killer

Dementia.  What do you know about it? It’s a disease that is the second biggest killer of Australians (ABS 2015).

I probably would still be unaware if my Ma hadn’t showed signs of developing dementia (still no diagnosis). I’m now learning more about dementia than I probably ever wanted to, but in my learning I’ve discovered that people have a lot of preconceived ideas of what dementia is.  People see dementia as being about memory loss and strange behaviour.

I am currently undertaking a free introduction to dementia course through the University of Tasmania’s Massive Open Online Course.  It’s been a real eye opener.

Early in the course I learnt:

  • Dementia is a set of symptoms caused by a range of conditions which is a result of progressive brain destruction caused by one of a number of conditions.
  • There are over 100 different diseases which can cause dementia (eg. Parkinson’s disease, Vascular disease).
  • Dementia is NOT a normal part of ageing although the older we get the greater the risk we have of developing a dementia.
  • Dementia is a progressive and incurable condition.
  • There are medications that may modify some symptoms but they only work for less than half of all sufferers and they are only temporary.

The Australian Bureau of Statistics reported that dementia and Alzheimer’s disease are now Australia’s second leading cause of death.  Dementia is now more deadly than strokes and all types of cancer.  Heart disease remains the leading cause of death in Australia.

Deaths associated with Dementia and Alzheimer’s disease are up by 30% in the last five years and rising.  If more money isn’t spent on caring for an ageing population, some researchers predict there’ll be a need for 500 new dementia beds a month for the next 40 years (http://www.abc.net.au/pm/content/2015/s4208461.htm).

Professor Perminder Sachdev, co-director of the Centre for Healthy Brain Ageing at University of New South Wales, believes there hasn’t been enough investment in Dementia research which has lagged behind other diseases considerably.  In 2012, it was found that Dementia was probably getting about one seventh of the funding from the National Health and Medical Research Council as cancer was.

So why aren’t we doing more to raise awareness and raising funds to help research Australia’s second largest killer?  How many posts do we see on social media in relation to cancer compared to dementia?  In my experience people are more ready to announce that Joe Bloggs has cancer than to admit they have dementia.

There seems to be a stigma attached to dementia almost like it’s something to be ashamed of. There is a need to raise awareness in the community and to support the carer caring for someone with dementia. I’m only a little voice in the wilderness but if others start raising awareness maybe money for research and care will increase and carers will be less isolated.