Caring for a parent

It’s Not All About You, Mum!

It’s not all about you mum!

I have huge amounts of patience. I will go over and over explaining things to mum. An example is when she finally started a Home Care Package.

I have stayed calm through all the accusations of taking money from her, taking and not returning a summer dress – mum is size 18 and I am size 12!!!, why have I taken out of the unit…whatever else she has actually misplaced. Look I could go on and on all the incredible frustrating conversations and actions of mum. And the regular criticisms.

However, for the first time, I lost it with mum.

After so many explanations about a package, verbal and due to not only her hearing issues, but also confusion, I have so many times typed in large font and dot point explanations about the benefits of the package. It helps mum stay at home. It helps me to help mum.

Mum rang the care provider.

Mum told the care provider not to send any more carers.

Mum cancelled the Home Care Package
Mum then postponed the Home Care Package for 12 months.
I picked mum up, took her to the doctors. Took her to the hearing aid specialist.

Mum didn’t tell me. Not a word.

The Care Provider rang me and told me.

My brother is away for 4 weeks. Mum refused to go into respite care whilst he was away. I have no back up support – and anyway he is often not well to assist. I had carers for an hour one day and an hour and half another day booked.

A week before mum had a fall. She injured her left hand and it was heavily bandaged. Mum is left handed.

I had make a wide variety of meals, veggies, desserts. I cut everything up, separated froze…all to make it easy for mum to eat.

Mum cancelled everything, the carers booked to support me. The Home Care low level package – we are still awaiting approval of her ACAT assessed High level Package.

Mum even wrote letters and cancelled, then another saying to postpone.

I was so angry and upset.

I lost it. I know there is such as thing as elderly abuse. I am not a shouter. I don’t lose my temper. I am patient. I do so much for mum. But I need some support.
I swore. I used the F word a few times. I was so upset. I told her it’s not all about you mum! I have a husband. I have adult children I support. I care for my little grand children 3 times a week. I am trying where I can grab some me time, do something for me.

It’s not all about you mum.

No, I can’t be here 24/7. No I can’t be here everyday.

You ring me, and demand I come around immediately. I recall there was a message she couldn’t understand on her answering machine. She thought it was urgent. I went around. She had deleted the message and in her mind decided what it was about – it wasn’t.

You ring me mum – the latest with another fall, crying and saying Oh there is blood everywhere, I need you to come now, and I need you to get my breakfast and do my washing and dishes. Clean your false teeth! I go around. That day fortunately the carer was also coming. I left her to do the washing and dishes.

I am exhausted mum. For the first time ever my blood pressure is elevated. Never had a blood pressure issue before. Ever!

I walked out. Angry.

The next day I saw her doctor and explained the latest incident. An aged care professional recommended to me a couple of years ago, to have one on one appointments with mum’s doctor to keep him informed about her behaviours. Her behaviour, decision making, short term memory of truths and untruths that she makes up and then believes.  I finally got through to her to keep the package active or she would also lose the cleaner who she really likes, that comes once a fortnight.  So thankfully the package remains active. I explained the Care Provider would be taking $’s for Administration/Case Management from her govt subsidy account every time she rings and makes such changes. That means less $’s for her when we really really need it.

I feel emotionally and physically spent at the moment.

For the first time, due to mum’s behaviour and on the doctor’s recommendation, I have booked a carer and a car on Monday to pick mum up and take her to the doctor for her wound bandage change. I would normally do this. Instead I will go to the gym and do a Pilates class.
Mum needs to go back to the hearing aid specialist for a new mould. I will again ring for a carer and car.

And I will go to they gym.

I have put on so much weight as I have put carer duties before my fitness and health level. Or have a massage.

Mum’s it’s not all about you. And one of the positive result of you cancelling and postponing, is that I am now going to take care of myself better.

The doctor has told you a number of ties, that it is time. Time to look at going into aged care. I agree. Especially after a few weeks ago, burning a chop, not knowing even though the unit alarm was screaming. The neighbours were they ones who rushed in. Mum doesn’t wear her hearing aids when at home and not expecting anyone.

I agree. I know you want to stay at home in your unit mum. I know you have told me and the doctor that you will commit suicide and take your sleeping tablets. I know you expect me to be the on tap carer. I feel guilty every time a woman tells me how long she cared for her parent – even at their own home for years and years. I feel I don’t do enough compared to others – I have it easy.

I need a life. I have felt so isolated.

I will continue to love, help, care and support you as much as I can.
But it is time. Time for you to enjoy the safety and care of an aged care home. Time for me to be free of feeling on call 24/7.

I am glad you did what you did mum. Because finally I stopped and realised. It has been all about you. I put so many of my own needs on hold. I closed down my celebrant business. I come when you call.

Now mum, it’s about me too.

Toll of Caring For Elderly Parent

 

Nothing prepares you for caring for an elderly parent. It is a role that research indicates falls mostly to daughters. Why? Is that because we are seen as having motherly, empathetic loving traits?
Is it because we are accepting, as many baby boomers did, of delaying our careers for motherhood – so we are experienced at self sacrificing? Or that our businesses or careers can be set aside or impacted and we will accept that ? Or we will juggle our worklife and personal life – accept and catch this ball of caring.

I think probably a combination of all the above. I care because of love. Of family. Of expectation. It often means the denial of my own needs and because caring for an elderly parent is a duty.

I struggle as a carer. Some days I wish I wasn’t a carer – they are the days mum is aggressive, argumentative, accuses me of taking things from her unit that I have never taken – but she has I find, misplaced.

Other times, we enjoy our time together – especially when it involves, tea and cake or some bubbly.

But mum can no longer drink and eats very little, although her enjoyment of berry pancakes, cream and ice cream is unaffected!  And mum still licks the plate! LOL

In the past 20 months I have had to close down my business consultancy “My Business Doctor” thereby ending decades of supporting and assisting local start up and established businesswomen. I have reduced my celebrant business of conducting ceremonies from around 65 a year to 2 – 3 a year.

I have stopped attending many of the business networking events as I feel so out of the business loop. I feel overlooked, inconsequential when introducing myself at business events. I stumble over how to introduce myself. Decades of career development, managing teams, huge projects and working with a diverse range of businesses from all industry areas – all in the past.  I didn’t intend to go from Working to Retired. I semi retired into micro businesses – initially as it felt right and would give me time to spend with my first grand child. No thought of caring for an elderly parent.

That is one toll. The toll on my business. The toll then that results in struggling with identification of who I am. Who I am without my business card.

Then there is the emotional and physical toll. As a carer I find my body seems to be on 24/7 alert. The adrenaline in the body…ready for that call….of which already are many….for help of the latest ambulance ride to hospital.

The call of ‘I don’t feel well, can you come and get me breakfast”. “I don’t feel well, can you make an appointment with the doctor for me today.” “Can you go shopping for me, I want to make……receipe” (last time mum cooked a chop – she fell asleep as it burnt and the fire alarm was screaming but with her deafness issue she was oblivious)”.
Or “there is a message on my answering machine………… I think it is a call from ………… but I can’t understand it…..can you come and listen to it. I go around and she has deleted it but decided she knew how it was from and made up some story!

“My washing machine is ticking, I need you to take me to buy a new washing machine. I have rung and someone is coming to fix it tomorrow. Mum couldn’t remember who she had called. “Someone from Yellow Pages”. I go around and find the noise is the laundry tap dripping. After ringing many numbers in the yellow pages, there goes another few hours.

Expect the unexpected. And cope with the unexpected.

The toll. Well I do find I resort to comfort eating. A regular apple muffin and coffee for morning tea. I biscuit here and there. After a particularly stressful demanding day, a drink or two of wine and now it is summer a drink or two of Bailey’s on the Rocks.

None of the above help. I am the heaviest I have ever been. I just don’t have the motivation to exercise (I also help care for young grand daughters). The drink – in winter a glass or two of sherry – just seems to calm me. Don’t talk mindfulness – I struggle to find time alone – and also the discipline to incorporate daily.

I find after drinking alcohol that if exacerbates my arthritic inflammation. As I suppose does the ongoing emotional stress.

I somethimes think of myself as the Dutiful, Undutiful Daughter.

I provide care because…..well because…..I have to. I wouldn’t not provide care. I do have a sibling – and he helps a few hours one day a week, and ad hoc depending on how busy he is will pop in for a cuppa tea or a swim in the retirement village pool with mum – or take her for lunch. But he goes away so often for 2 – 6 weeks at a time (for 6 months when I was ‘handed’ mum to care for). He also is often unavailable with a bad back or other ailments. At least when he is here I have a sense of a back up but big stretches of juggling alone take their toll.

As does mum’s often aggressive attitude to a variety of things I try and organise that will help her. She sees it as trying to boss her. That I am trying to take over. That she still has her marbles. That she is capable of thinking and making her own decisions. As dementia issues are increasing, this I think is the part that wears me down the most – and I am sure raises my blood pressure. And leaves me exhausted. It is a struggle. And of course a mother daughter relationship fraught with arguments and difficulties re-emerges.

I need to exercise. I need to find a exercise routine. I need to find exercise that I will enjoy. I need to lose weight. I need to modify my diet to reduce inflammation pain. I need to feel recognised. I need approval and a feeling of being loved. I need to work out a way to cope long term.

Mum at least is now on a Package – Level 2 and is having a cleaner come in once a fortnight. Honestly, I believe that if mum would only consider moving to an aged care home she would enjoy it. Mum likes company. She at the moment has many hours sitting at home watching TV. But mum won’t inspect or consider an aged care home.
I have started to think…..mum might continue to live like this until she is 100. The latest ACAT is for Level ¾. The assessor said that if she had care this is the level she would need. She is receiving that at the moment from me – majorly – and when around – from my brother. So I have started to think….how will I cope. I don’t want next year to be a repeat of the past 6 months in particular.

Her dementia is like being in limbo at the moment. She can make decisions but her brain is often confused and she has short term – increasingly short term memory loss. Caring is a responsibility that cannot be professionalised. Like becoming a mother for the first time, it cannot be prepared for.

How long can I continue in this limbo state? How can I motivate myself – or engage someone to help me – to lose weight and regain stamina and health?  In the meantime it is school holidays and I am caring for my 5 year old grand daughter 3 days a week, ongoing of the just turned 4, of one day a week….so I must go……

All photos purchased: Fotolia, shutterstock and 123RF

Are You Hearing me?

Depressed and increasingly social isolated – mum finally received some good news. My case for new hearing aids – 3 years earlier than the standard pensioner replacement time of normally 5 years – had been approved.

Unfortunately on the day of the hearing aid appointment, I was still suffering from dizziness – bought about according to my doctor – from an intense 3 months of caring for mum after she had had a fall.

So my 40 year old son, took his granny and returned her to my place all smiles.

Mum could hear us – wearing the small microphone – shaped like a USB – clipped onto our tops – when she was in the kitchen and we went into the loungeroom. Again with it clipped on to my son who tends to mumble at times, she could hear him clearly. OMG – placing the device in front of the TV for the first time in years, mum could hear the TV. She could actually hear it without the USB microphone device – just with her new hearing aids.

When I took her home, we set it all up and yes she could hear her TV.

Smiles. High Fives. Happy

Gone will be the Watcha Say?  Hanging up because she can’t hear.

Day 2. I went to mum’s to drop off some shopping and check up on her. Problems!  She couldn’t hear the TV. She was pushing volume buttons up and down on the remote device that ‘talks’ via Bluetooth to the USB microphone.  Stop.  I explained it was the TV remote she needed to push as she had it on silent!  So explained with the new hearing aids and devices – she could have it on at a level that I could sit and listen to the TV with mum

I wrote out very simplified instructions regarding how the remote device she wore around her neck ‘talked’ to the USB microphone.

No light = OFF

Green light = ON

Blue Light – Bluetooth connected – the devices could ‘talk’ to each other

Red Light – Turning Off (then would have no light).

OK….All understood after a couple of practise runs.  Mum was taking it to cards and was going to clip the USB to the side of her little water bottle cover.

Day 3  I ring mum to let her know what time we will pick her up to take her out for lunch – as we normally do each Sunday.  How did you go yesterday at cards with your hearing aids and the USB microphone I asked.

I lost it – she replied.  I lost the microphone. I think it might have been caught up at the end, in the tablecloths, or card packs when it was all been packed up.  I rang the card organiser and told her but she didn’t see it anywhere.

So hubby and I go around. Hubby retraces the road, path, and into the centre where she played cards at the retirement village.  He looks in drains, curbs, driveway ramps.  No sign of it.  I look in her two handbags, purse, zip compartments. No sign of it. I look everywhere all over her scooter.

Oh she says, when I came back the scooter was extra noisy. I think something must have been misplaced when I went over the road bumps. And she added – there is something wrong with the phone ringing volume. I could only hear it, because I was standing next to it.

Hubby walks in and within seconds, finds the USB microphone in front of the TV.  I thought that you said you left it in the centre yesterday afternoon. Oh, says mum. You found it – where was it?  In front of the TV, I reply. Oh, well I can’t remember putting it there. I must have put it there when I came back and forgot. Anyway, she added, it doesn’t work. It’s useless – I can’t hear the TV.  I look at the device. That is because it is turned off, I say calmly!!!!!!!!!!!!!!!!!!!!  You have to turn this on and the remote device – where is the sheet of instructions I wrote out about the colours!!!

So I set it up again and test it. All good. Off we go to lunch.

My son clips the USB onto his shirt. Yes, granny can hear him.

Then – oh the background noise is soooo so noisy says mum.  Stand up and look behind you – there is nothing there!  Mum looks. Well there is loud background noise.  That is just the general noise of the RSL lunch area. Your brain has to readjust and get used to been able to hear again. Mum goes to the loo – oh the toilet is so loud and noisy. Great her new hearing aids are working – they might need the volume adjusted. Mind you mum has pushed volumes up and down so much since the audiologist had set them.

Lunch over – mum heads into the pokies to play her $5 at 1 or 5 cents a push.  She is very happy. She can hear and she wins $5!

Day 5

After two days of some busyness caring for hubby who had an eye operation, I finally get time to ring mum. Without enquiring how my hubby is – who does so so so much for her also – mum says – I want you to take the hearing aids and everything back. They are too noisy. The microphone doesn’t work. The volume of everything is too loud – to much background noise.

I try and explain that the audiologist said it will take some time, to readjust to hearing and to preserve.

Mum replies dogmatically and emphasising her words I SAID TAKE THEM BACK. I DON’T WANT THEM. THEY ARE TOO NOISY AND DON’T WORK.

Mum explained that she spoke to another woman who had something similar – and how she stopped using them and reverted to her old hearing aids.

Mum says she has packed everything back into the box, and I am to come and pick them up and take them back. Mum has the Bluetooth remote and USB microphone on trial for just over a fortnight before paying $550 for those – the hearing aids are free replacements. Remember – because she was crying from depression with her social isolation from not been able to hear and people ignoring her.

I try to explain it is like rehab after a hip operation. You have to keep working at the exercise for improvement. Same with the hearing aids, you just have to keep wearing them – preserve – to get used to them and retrain the brain.

Mum replies, that there are at least 5 deaf people at the RSL cards and none of them have a remote device or microphone.  Well I reply aren’t you lucky you do have these – to help you with your hearing.

I don’t want them. I am using my old hearing aids. I want you to TAKE IT ALL BACK.

Me:  I can’t hear you. Whatca say.  And hang up

It is time for a Bailey’s on the rocks!  Time is 9.30am.

PS – I checked the phone – mum had turned the sound down as with her new hearing aids it didn’t need to be sooooo loud.

Hubby checked her scooter. There was nothing wrong with it – just her new hearing aids – she could hear it better.

To be continued.

Missing a Sense of Purpose

It is now five years since I left my fabulous government job assisting businesses with their growth and development. 

I took early retirement as a package was available and I saw my retirement as time with my daughter as she started her family as well as an opportunity to operate a micro business.

In those 5 years I have become a nana to two beautiful grand daughters and spent many hours caring for them. Many more hours than I anticipated due to baby sleep issues and suddenly finding myself in a carer role of my elderly mother.  My eldest grand daughter started school this year, so I only really see her at school pick up – three times a week. But no longer for regular full days. The youngest who is 3, we care for each Thursday.

So early in the year and with the reduction of need for caring, I have found myself struggling. I am missing a sense of purpose. A sense of feeling belonging.  A sense of feeling fulfilled and making a difference.

I have started the year determined to improve my health after 3 weeks of physio on my back. I attend a community centre and attend stretching and Pilate classes. I plan to book time with a personal trainer to help me keep on track. I have booked sessions with a psychologist/hypnotherapist to assist overcome some childhood issues.

On the wellbeing side – I have joined a women’s group choir.  The group sits or stands in a circle and harmonises. I found out it is a form of cappella singing. I loved it. It made me feel grounded, relaxed and uplifted at the same time.

I love to of the ‘songs’ Bella Mama’ and The River Flowing. Below are some links to some You Tube of these songs and type of singing.

http://www.mamalisa.com/blog/belle-mama-a-song-from-the-torres-strait-islands/

https://www.youtube.com/watch?v=sB2AaVVjF-0

After much research, I joined  a local VIEW Club – which is a group for women that raises money for The Smith Family who in turn provide financial support to disadvantaged children. Not long after joining I volunteered for the committee and as assistant secretary am the guest speaker organiser.

Sigh……I just feel brain dead. I feel a lack of stimulation. A lack of purpose.  I am still busy assisting and providing care for my elderly mum. The hours of care depend on her health.  I have just come out of two months of intensive care hours after she had had a fall.

As a celebrant I have conducted a few weddings.

But  I am over being involved in all the stress of brides and weddings. Well at least the very big weddings. I still enjoy the small weddings of 2 – 20 guests. Especially when held on a property or backyard of a home. Just so much more relaxed and intimate.

However I am seriously considering retiring and handing in my celebrant registration.

So, now what to do.  I looked at University of the Third Age, but nothing I am interested in is available on my pockets of available time. That is of course part of my dilemma .  I have pockets of availability in between when I help mum, take her out, take her shopping etc, the day I mind my grand daughter, being at the school by 2.30pm to get a car park close enough for pick up of the eldest grand daughter – then minding them both until 5pm. I also set aside time for the hubby – he is at golf 3 times a week.

Soooooooooo!  What can I do to stimulate my mind. What can I do that will give me a sense of purpose. I just feel the days and weeks are passing so quickly.

What do I want to do with my life? I don’t want to ‘just fill in the hours’, with gym, lunches, bowls – oh I did try some bowls but then it go SO HOT! – I will look at that in the cooler months. I learnt crochet. Loved that but made everything I really want to make. Will look at making some items to donate.

My thoughts are join and volunteer with another charity. Maybe some volunteer office work. Perhaps use my event management background and stage an event of some sort.

My needs are – new friendships in my age bracket for now until………..well …until death us to part! As well as brain stimulation and a sense of purpose.

Well it is now time to think about dinner – gawd……I am after nearly 43 years of marriage over coming up with ideas for dinner. Thank goodness for the good old basics of spag bolg, sausages, roast chicken!  I love baking – but everything I love to bake my daughter tells me has too much sugar! And hubby has asked when I am going to diet and lose weight! ARGH! 

Oh look, it is wine o’clock…………..must go!

 

I Just Need A Hug – The Importance of Touch

HugsI Just Need A Hug – The Importance of Touch

After a couple of long, emotional weeks, as mum struggled with her health and I struggled with the hours and stress of caring – mum said “I need a hug!  I just need to be held and hugged!”

We hugged tightly.

We are on this journey together. One which we know will end. When we don’t know.

We do know that there are many ups and lots of downs and struggles to go through. A hug.  A simple hug between a mother and a daughter.  A memorable moment in time.

It made me thing about touch. No matter our age we all love to have our hand held, our backs rubbed, or the feel of a warm embrace. How often to we go long periods without touch, without a healing, reassuring love.

Seniors who live alone often do not experience the simple act of touch on a daily basis. The reasons vary:  spouses and close friends have passed away, families live in other states, or physical limitations may affect activity and contact with others.

In our busy lives – it is often easy to forget to show feelings of affection. For the elderly – and single people – a loving touch can make a big difference in their lives.

When we are with our partners – kids well and truly having left home, or as an elderly person living alone. How often do we stop – reach out and touch each other. Hug each other.  So much care, support in that hug. It means, you are not alone. I feel your pain. I feel your struggle. I am here for you.

According to researchers at Ohio State University, hugging and physical touch becomes increasingly important with age. “The older you are, the more fragile you are physically, so contact becomes increasingly important for good health,” University psychologist Janice Kiecolt-Glaser told USA TODAY. Studies have shown that loneliness, particularly with age, can also increase stress and have adverse health effects. By hugging someone, we instantly feel closer to that person and decrease feelings of loneliness.

I feel uplifted each time I see my grand daughters and we hug.  I will often reach out to my daughter and give her a hug. And my son – he is like hugging a big teddy bear.  But I am reflecting, not enough.  A hug also says I love you. I am proud of you.

A hug provides solace, safety and tenderness and an overall sense of wellbeing.

Touching someone you love often conveys a message in a way words cannot.

So although I am so busy, I must now remind myself, to reassure mum, by giving her a hug when I see her.  It will help both of us in this journey with ups and downs, together.

Semi Retired and living like a Gourmet Sandwich

sandwich-311262_640Semi Retired and living like a Gourmet Sandwich

ARGH!! Huge big bite…MUNCH,MUNCH,MUNCH……..hmmmmm thanks Mum says my daughterKathryn…… ARGH….a smaller bit, taken a little longer to MUNCH in….bit slower…..that’s my elderly mum. Nibble Nibble trying to find a spot not yet chewed….that’s the retired hubby. Nannie, Nannie, poo poo….calls out nearly 2 year old grand daughter! Wah, wah…that’s the baby Chloe.

My semi  retirement is such a mix of ingredients – diverse like a gourmet sandwich. Family needs and demands, a retired hubby, a couple of hours a week (2 if I am lucky) for myself, and in my role as a celebrant, working on wedding, ceremonies– each ceremony takes up to 15 hours from the first contact of a bridal couple – – yes I know, many think an hour or two to write a ceremony and rock up on the day…WRONG!!!!

I feel like a gourmet sandwich….you know the type….delicious soft bread with a hard crust with yummy grain seeds – that’s me – soft in the middle and hard around the edges.  My softness is family – giving of my time for family – an elderly mother who needs increasing support whilst still living an independently in her unit, and support for a married daughter, who has just had another baby – this one by C Section….which means she couldn’t drive for a few weeks or  pick up her very active toddler.

And a recently retired husband who wants to have lunch with me, or ask me if I am going out, when I will be back?  Or at breakfast time…what’s for tea?  Thankfully he is often occupied playing golf….and is happy pottering around the garden and shed with regular visits to the big man shed called Bunnings. And I am blessed that he will clean and prepare dinner !  Occasionally – but only occasionally – but on those occasions it is usually critical emotional help….my 30 something single son, will send out an SOS for help.  Oh and I fit work in between.

So I am soft, gooey like delicious bread – every time I am asked for help I say yes.  The hard crust – I rely on that …that is my backbone, my hardened area of my body that says, suck it up, you can do this, don’t worry about that sore aching back and painful hip and knees.

The inside of the gourmet sandwich – where we are provided with so many options to choose from.  My gourmet sandwich is made up of many options – but most are currently out of my control.  There are all the issues that relate to supporting an elderly parent in my semi-retirement.

Celebrant-150x150Between flinging all this together, stuffing as much as I can into life, I am also a nanapreneur – move over mumpreneurs – you have such an easier life!  So I semi-retired from my corporate government business development career two years ago.  I have a little business consultancy and a very busy celebrant business (weddings, vow renewals, baby namings and the growth industry – funerals)! Of course, I couldn’t stop there, nooooo, something to do with my personality type!  Now I have started facilitation training with 2 Young 2 Retire for my Retiree Matters business concept.

You know I am so busy helping family in my semi-retirement lifestyle….that sometimes I feel tempted to return to full time work.  It is one of the issues we just don’t think about when we plan – ha ha ha – really how few of us, I now realise actually plan and visualise an accurate semi or full retirement life.

We think, kick back, time for us, shop, garden, follow our passions, run a small business, travel…… We are the first generation, who find that there parents are alive and often well and living for decades. Except that they need support from their children to keep living an independent life…..well there are carers…and other support, but I have found from chatting, that many of baby boomer parents….don’t like strangers, don’t like to ask, ‘can do it themselves’ in some respects whilst ringing and asking an adult child for help at the drop of a hat.

Hmmm makes me wish now, that my parents had more than two children….and wish that my older brother had married, as there would be a sister in law, perhaps to help out also.

But of course helping is rewarding…..except there is also some feelings at times of frustration, resentment and wishing one could say no…..but family ties, heart strings…and thinking that these will always be wonderful memories to cherish and look back on, keep me going.

eating pancakeMum can ring at any second, needing help for that latest issue of a tradesperson, something that she desperately needs, emotional support as she is depressed and in pain, medical appointments, needing to be dropped off or picked up to go to and from cards (thank goodness mum still plays cards four days a week), to take her out – just out for lunch and her favourite berry pancakes, shopping for clothes – I now help dress me, squashed in together in the changing room along with her wheeler, as I tug and push her body and dangly bits, say into bathers…….oh my…..my mind does sometimes race forward to a time, when I will need my daughter to do the same!  Gotta get out and do some more exercise to be as fit as possible.  Oh and I fit work in between.

I mind my grand daughter one day a week – which is wonderful as playing tea parties, lying down pretending to be her baby, tickling her and teaching her to sing on the top of her voice (sorry daughter yes she is LOUD – but you had to know I would influence her with seeing and caring for her so much J  ha ha – louder now….let’s out sing the music!!) , and I also pick her up from child care twice a week, and am the fall back carer, when she is too sick for child care. I also do overnight stays.  I have started to show her catalogues….I am teaching her to understand what a bargain buy is!  Oh and I fit work in between.

With another new adorable beautiful grand daughter, I am currently providing a high level of support each week day, all day, until my son in law, stops work for the holiday period.  I get to goo over my tiny grand daughter, delight in her mustard coloured regular poo – she is obviously receiving enough nutrition and hold her to rock and cuddle her to sleep – yes yes, I know that is not in the modern day parenting books. Now I love absolutely love that my daughter and her family live close by and we see them so much.  I absolutely cherish the time.  I love the time when my elderly mum, me, my daughter and her two daughters are together – the generational  females all together That is so special.  It is just that I do get very tired. My osteoarthritic hips and knees ache and my back and sciatica remind me constantly that they are a part of my body.

I do manage at times to get out and network and chatting to many women, guess what they are now caring and supporting or have a sister, aunty in a similar position. Trying to transition to semi retirement, having stepped away for years of learning, developing and achieving in their career. They have considered the financial planning side of their life, but really the rest was oh, it will be nice to have all of this time, to follow my passions….without actually thinking through the emotional demands and needs of adult children and parents becoming more childlike and demanding at times like a petulant toddler.

I know that this very high intense time of assisting my daughter will pass in a matter of a couple of months – and likely I will actually miss seeing her and grand children just about everyday, but I also know that the hard crust of the bread with the grain seeds – that harbours many ideas and activities will germinate.  And one of those ideas, is to begin to assist those women 55 plus who are beginning to think of their idyllic lifestyle in semi retirement .  Thus the idea of Retiree Matters to coach, mentor and facilitate seminars in life planning for the next stage in life!   Join me on my facebook page, as I begin to develop resources and blog posts.  https://www.facebook.com/Retireematters

In the meantime, I’m off – to shop and provide some gourmet sandwiches for hubby, daughter and grand daughter for lunch today – before heading of to take 23 month old  Maddy to the park to burn off some energy, prior to having her sleep over for the night.

wine-38263_640I plan to sleep also – a glass of wine or Baileys’s  will help for a good night rest also.

Coping with caring for an elderly mother

1926732_10151982545828034_1906963688_nCoping with caring for an elderly mother

Mum has hearing aids.  She is very happy with them. Her last test before paying for them provided results of 50% hearing when she was turned away from the specialist and 75% hearing when facing him and able to watch his lips. So she says.

He must have been YELLING for mum to have achieved those results.  No way, absolutely no way does she have that level of hearing.  Even though she only wears one hearing aid. Yes just the one. She can hear better she said with just one hearing aid!  Whatcha say?  Oh dear, is it wine o’clock yet?

Her hearing has been noticeably worse over the past few months and I have encouraged, reasoned, pleaded, asked her to wear both because she can’t hear. She answers with “if people would just look at me when they talk to me I can hear them.” to “I can hear fine – it’s when people start mumbling I can’t hear.”

Her hearing got worse very quickly and although it seems to have stabilised now,  holding a conversation is very difficult. I  say something. Mum replies, whatcha say?  I didn’t hear you” and me repeating it. This goes on all the time. I feel sorry for the people that she plays cards with each week, but then again, many of them are hard of hearing. If mum doesn’t hear everything someone says she will simply fill in her own blanks or she has a way of pretending that she has heard.  Oh, hmmmm she will nod!!!

So let’s give some examples you may identify or one day you too might face a similar situation.  So here are some daily examples of daily chats with mum.  The tips, oh where are the tips for Coping with caring for an elderly mother.  Or read as – virtually deaf elderly mother!  Especially when you only wear one ruddy hearing aid.

Is it wine o’clock yet?

Situations

Driving

Mum is in the back seat of the car and we are taking mum for a drive out for lunch.  Hubby and I chat in the front. Mum just starts a long conversation on top of our chat.  OR, she hears some chatting noise, and then makes statements on a completely different topic to what we are talking about. Mum asks me questions, I turn my body and head towards the back and yell the answers back to her. Mum repeats my answers. Except what she repeats is nothing like what I have said. Hubby wonders if it is wine o’clock yet. FARK!  I often think. Other times, I just giggle – oh dear!  I do hope I don’t go deaf.

“Where are we going?” mum asks.  “We are going to the Marina Market’s first, then for lunch”, I reply.  “Oh, where did you have brunch? Mum asks – “why did you have brunch first, you won’t be hungry for your lunch”.  Smile!!!

Why are we going this way, mum asks noticing we are going a different direction.  I have to drop something off to Dave, I reply?  Who?  Who let off? Says mum?  I can’t smell anything? Did you let off?  Hmmmmm, is it wine o’clock yet?

Restaurant

I don’t like that table, it’s too cold, too breezy, too loud, too sunny”.  We usually end up at the 3rd or 4th table that we sit at. Yes, move the glasses of water etc each time. Waitress comes over to ask our orders. Would you like to order your drinks?  Whatch she say?  SHE SAID ARE WE READY TO ORDER out drinks!  “, I want some fresh oysters”, mum replies.  I’ll have a wine I say to hubby!  I’m not hungry says mum, what are you going to eat, when can share it.  Do they have any lamb’s brains? I’m not eating lamb’s brains I say. Why not they are good for you.  Hmmm I wonder, maybe they might help with my hearing.

Items Lost

Mum rings. You have my disabled sticker.  No I don’t, I reply. Yes, you have it. The last time I saw it, was in your car. Go and have a look it must have fallen down the side of the car door.  OK, I will go and look. No mum I don’t have your disabled sticker. Yes, she replies, you do. I used it last when I was with you on Sunday (it is now Friday).  No, you have been out with my brother since then. No we couldn’t find it. You have it.  I will look for it tomorrow when I come around, I reply. Hey? Whatcha say?   I WILL LOOK FOR IT TOMORROW WHEN I COME AROUND.  You found it in a round thing?  NO MUM!! I WILL SEE YOU TOMORROW. BYE FOR NOW.  Is it wine o’clock yet? And the next day, I find the disabled sticker, just like I do, every time mum says that I definitely have it. Usually caught up between her calendar or between loose paper on her breakfast bench.

Stolen

Phone rings, or I walk into mum’s unit.  Mum is crying. The cleaners (or somebody!!) have stolen….my disabled sticker – yep, that disabled sticker again, money, her pastel art work she was going to have framed, a top, etc etc.  No mum, they wouldn’t steal anything. Oh yes they would.  They get in her and talk and don’t clean very well. Tears, they have stolen….item…..!  Mum, calm down, remember every time you think something is stolen, I find it.  So calm down. Whatcha say?  IT’S OK MUM. SIT DOWN AND I WILL HAVE A LOOK!  But I didn’t lose a book.. I told you the cleaners have taken  (insert item here) ….!!! Hmmmmm. Is it wine o’clock yet?

Money

I’m going out with a friend and I have no money. Why mum?  We took $400 out yesterday. Well you must have kept it. You have it. I can’t find the money. Why did you keep it.  I didn’t keep it mum. I put in in the drawer with your cheque book.  Whatcha say? You coming her to look for it? Why, you have it. Bring it back.  No mum, I don’t have it. Move your cheque book, it will be under that. Sick? Are you sick? Why are you sick?  NO MUM I’M NOT SICK. What?  Oh can you bring the money back!  Lorna is coming to get me to take me out in a few hours. Hmmmmm  Is it wine o’clock yet?

So mum talks over us, on top of our conversation. Interrupts and starts her own conversation. Takes a conversation on a completely different area to topic that we are discussing. Sometimes, it is very funny. Other tines completely frustrating.

I feel so sorry for mum. She misses out on so much of what is been talked about and happening.  I hope that I never go deaf, or have such hard of hearing issues.

Love mum.  Is it wine o’clock yet?

Home Care Packages

Signed mum up for a Home Care Package and I feel guilty

I have arranged and had mum sign for a Home Care Package.  I feel guilty.  Mum questions why she needs it.

After 5 weeks of been on call 24/7, running to and from mum, taking her to numerous specialists and doctor appointments, doing her banking, taking her to social activities, doing her washing, shopping, having scripts filled out for her, cooking, buying and doing anything she has suddenly needed – and needed immediately – I finally started to research for support.  For me!

As a result, Mum starts with Glendale Care providing care support this morning! I am praying that Glendale Care have women who are friendly, caring, trustworthy with a happy disposition. And then I pray that mum will actually stay with using the package.

I understand she questions, as currently she only pays for a taxi or community car on a Thursday with total cost of I think about 8 or 10 dollars. The Home Support cleaner once a fortnight costs nothing. However as of 1 July, all costs will go up. If you need a community car you will be charged the same for 2 kms as going 10 kms.

But they don’t yet know what the charges will actually be.

The cleaner who costs nothing  there will be a charge, but they don’t know what the charge will be….

So with everyone advising me to get mum on a package that she had been approved of receiving, and with the thought of costs going up, and extra support for me, I did. But mum in her head cannot see why she needs it – some days she is good for a few hours, others, barely leaves her chair or unit. So fingers crossed.

But if she doesn’t want to be in it, we can cancel. I hope she gives it at least a month though, to settle in. any of the 5 hours she doesn’t use, she can bank….so they are accessible, if I as her carer am sick, or away, or she suddenly needs extra support. Bloody exhausting!

Within a short space of time I have become physically, emotionally mentally exhausted. Now add to that a feeling of guilt. A niggling feeling that I have sold mum out.

A feeling that I have handed her over to someone else. A feeling of not giving her enough time. A feeling of deserting mum. A feeling of being selfish.  A feeling of having her spend $136 un necessarily per fortnight.

I also have a feeling of pending relief.

And also as mum keeps questioning me – a feeling that this care package might be short lived.

I only became aware of the packages, when she was in hospital two weeks ago, when one of the nurses took me aside and suggested I look into getting one, as she had looked at mum’s record and saw she had been approved

The lovely nurse spoke to mum – well yelled – as this was before I had finally had mum’s hearing issues greatly improved/fixed.  She suggested mum have the Level 1 and 2 package.

Mum’s response was that she wasn’t ready for the support help yet. That she had a cleaner one a fortnight and she had me!  The nurse responded that she felt that ‘your daughter is ready for it!”  I could have hugged her.  Mum of course was dismissive – she had me – at her beck and call whenever she wanted.

The lovely nurse, took me aside and said – here is a pamphlet – I happen to know that this small care provider has a spare package available – they are hard to get – most have waiting lists. The reason – the new Aged Care charges and process to come into place from 1st July 2015.

So over two days I had a massive learning curve.  Every care provider I called – even those who provided mum with the cleaner, or a car to take her when I was not available to doctor or social activity as well as other current carers…everyone without fail said – if you find an available care provider with a package, take it…they are rare…even if she is not 100% ready….if you can get her signed up before all the changes take it!

OMG………Home Care Packages – these are fantastic!

A Home Care Package is an assistance package designed to allow elderly people to remain in their own homes for as long as possible. The most common types of supports are: assistance with bathing, dressing, mobility, preparing meals, continence management, cleaning, laundry services, gardening, home maintenance, transport to attend medical appointments or social activities, nursing, allied health and therapy services.

So mum wrote out two pages of questions today – when I dropped in to help my son set up a new TV for her room that we had gone out and bought, to deliver her bread she requested as well as socks she needed – and of course they are the wrong socks – ARGH!

So here are two pages – of reasons why she could do without the package. I sat and wrote the answers – as it is easier to do that than talk.

I have explained that after a month, we can review and if she decides it is not helpful we can cancel or go to another provider if she is not happy.

At this stage the support is:

Tuesday – strip bed, put all washing on, clean unit, hang out washing, get mum’s lunch, or do some preparation/cooking for an evening meal, extras depending on need include clean fridge/freezer, panty, sweep courtyard, spray weeks in courtyard, wash window…just whatever needs doing, and then drive mum to her cards.  I then get the whole day, and will pick mum up at 3.45 from cards. OMG…I LOVE this!  But I feel guilty!

Wednesday – bring washing in and fold it. Drive mum to cards.  Woo Hoo. This gives me the whole day for me. I will pick mum up from cards again at 3.45pm and take her shopping.

Thursday – Drive mum to cards and also pick her up and bring her home.  Well I just can’t do Thursday as I care for my little grand daughters.

I pray she loves the women who come and that she settles down to accepting them and their support. Any of the 5 hours – she wont’ use them all – that she does not use each week, get ‘banked’. This means if her needs for any reason escalate – or I am sick and unable to help, she can then use these banked hours.

I am still there for her 24/7.  I still do heaps of running around. See her, make contact each day. Take mum out, do all the extras…but this will give me some time……for me. To do somethings for myself and also with the hubby.

Why do I feel terrible?  But I pray and hope that this all works out!

Hearing Aid Issues – Whatcasay?

IMG_0048Mum’s hearing has been deteriorating at an amazing rapid rate over the past few years. Although she has been going to a hearing aid place – for new hearing aids and many adjustments, nothing seemed to improve.

In fact the last time she went to a Hearing Centre, the hearing aids became even worse. They had been adjusted so that background and ‘normal talking voice’ noise were overbearingly too loud for mum.

For years, it has been so frustrating for family, trying to talk to mum. On the phone….well conversations are not only frustrating, but sometimes I also get the giggles.

For example a recent ‘conversation’ with mum:

Me:!

Hello it is CELENA!

Mum: Is that you?

Me: Yes! I rang and cancelled the cleaner (Mum has a HACC cleaner once a fortnight)

Mum: What? You are having a clear out?

Me: NO, I rang and cancelled the cleaner

Mum: What is clear?

Me: I RANG AND CANCELLED THE C L E A N E R

Mum: Did you ring and cancel the Cleaner

Me: YES

Mum: You have to ring HACC

Me: I DID

Mum: Listen to me. You have to ring HACC

Me: F*%K – PUT YOUR HEARING AID IN

MUM: LISTEN TO ME! You have to ring HACC. I gave you the number.

Me: I DID!!!!! All done

Mum: Did you ring them?

Me: Y E S

Mum: If they don’t answer leave a message

Me: OK. HAVE A GOOD HOLIDAY

 

Then her recent stay in hospital just prior to going away:

Mum and Me – Conversation when I rang the hosptial

Nurse gives mum the phone and tells her it is her daughter on the phone.

Mum: Hello? Hello? Who is it?

Me: It is C – e – l – e – n – a

Mum: Hello is anyone there

Me: IT IS C E L E N A!

Mum: to Nurse, I don’t think anyone is there

Nurse: Do you have your hearing aids in?

Mum: Who is on the phone. I don’t think anyone is on the phone

Nurse: PUT YOUR HEARING AIDS IN (and obviously picks the up and gives them to mum), it is your DAUGHTER

Mum – mumble mumble as she fiddles

then

Mum: Hello?

Me: Hello

Mum: I can’t hear anything

Nurse: TURN YOUR HEARINGS AIDS ON OR UP. It is YOUR DAUGHTER

Fiddle mumble in background

Mum: Hello? Is that you Celena

Me: Yes

Mum: Well I feel much better. I have different tablets. those tablets the doctor gave me made me feel sick

Me: Good. When are you coming home

Mum: I have been doing the exercises for my knee, and it feels a bit better

Me: OK. So when are you coming home?

Mum: Have you done the exercises for your knee?

Me: WHEN ARE YOU COMING HOME?

Mum: You should do the exercises Lisa gave me. They help a lot.

Me: W H E N ARE Y O U C O M I N G H O M E?

Mum: Anyway it is good you bought the cardigan up, I am not cold. It is a busy ward and the nurses are lovely.

Me: WHEN ARE YOU COMING HOME?

Mum: The meals are ok

Me:

Mum: Oh your knee – it hurts? Yes do the exercises.

Me: F*&K!! I WANT TO TALK TO THE NURSE!

Mum: It looks like a nice day I can see out the window.

Me: ARGH!! I WANT TO TALK TO THE NURSE! GET THE NURSE

Mum: When are you coming up? Bring a book with you

Me: – I just hung up. Then called hospital again and spoke to the nurse – useless talking to mum – she didn’t hear one word I said.

Nurse: Yes, we have given up, we are now writing on a piece of paper to communicate.

Me: Will she come out today? I need to work out when to come up.

Nurse: Maybe, maybe not. Don’t know. Hopefully we should know if doctor sees her this afternoon. She is much better on the different tablets. The ones the doctor gave her are known for making people nauseous. And her oxygen level is up. Unfortunately she likes to wander and forgets she is hooked up to the oxygen. When we yell out before it all falls down, well of course she doesn’t hear us, so we have to be quick.

I think they might be glad to have mum released!!!

So, this brings me back to the hearing aid and OMG a break through.

It seems that many hearing aid businesses have an agreement with particular hearing aid manufacturers.  As did the one mum attended.

hearing aidAs of the middle of May, I took over the role of primary carer for mum. So having knowing this was coming, I had started turning away a lot of wedding enquiries, I have virtually stopped working – actually I have virtually stopped doing anything for myself…but this is about the hearing aids.

I took mum – but it took a lot of persuasion as she liked the man at the hearing aid place she went to – to an independent Hearing Business Neurosensory. Independent. NO sales agreement with manufacturers. State of the art testing equipment. So state of the art, that the tests do not leave mum absolutely exhausted!

The result after two visits – we can hear and we have new hearing aid moulds that seal mum’s ear canal.  I am no longer shouting at mum.  Phone calls can still be a problem, but day to day conversation is a lot easier.  She still has some difficulty as she has a severe hearing problem. But oh, so much improved.

I had been trying to talk mum into an independent place for a few months. But she talks to other elderly people at cards and. they say, oh mine work, or oh I go here….it was hard work getting her to accept an appointment at the independent business. And that is one of the frustrations and emotional stress and exhaustion of being a carer also.  Trying to reason and explain.

My daughter recently said to mum “Granny….mum is a very intelligent woman….you have to trust her”.  Made me feel wonderful and wow….hmmmm mum listened to my daughter….and I have not only ‘fixed’ as best can be fixed the hearing issue……but have now signed mum up to a Level 1 and 2 Package.   That story I will leave for another blog post.

So, I will just leave you then with this mum and me conversation:

Phone Rings and yes it is mum calling me.

Mum: Hello? Is that you?

Me: yes mum, it’s Celena

Mum: I want you to come around. I have a message on my phone and I can’t understand it (this is due to mum being nearly deaf…only wears one hearing aid! and frankly…well….that’s another chapter of a book)

Me: Sigh….OK

Mum: continues as she hasn’t heard me. I think it is the gardener that David (my son) uses….I told him I wanted him to contact him as I wanted him to do some gardening work for me. I think he said he is coming around today. But I can’t understand the message. Can you come and listen to it. And tell David to ring him back and say I don’t want him to come around.

Me: OK….I will come around and listen to the message and let David know.

Me….Ring David….did you arrange for Ian the gardener to go to granny’s?

Dave: No….why…

Me: Explain situation…..

Later….I go around to mum’s to listen to the message as I know it won’t be Ian….and why she even thought and relayed so much of a message that she couldn’t hear and it wasn’t him anyway, but mum makes up huge stories of things she assumes or decides.

So I go to mum’s. I make a lot of noise when I go around, so she hears that I am there.

Me: Hello I have come to listen to the message, as it isn’t Ian the Gardener

Mum: Oh….well I don’t know who it was. I deleted the message as I thought it was Ian and you would tell David to cancel him.

Me: Sigh…..(thinking is it wine time yet?)…well it wasn’t him, so now we don’t know who the message was from.

Mum: Oh well it doesn’t matter, if it is important they will ring back.

Now you are here, you can have a cuppa and a piece of cake.

Me: Sigh…. (thinking I will never lose weight…and actually I prefer a glass of wine! – oh it is only 10.30am….oh well!)

So my advice is – seek out an independent audiologist for your hearing aid tests and recommendations. One that is not aligned with one or two only hearing aid manufacturers.

Life as a Carer – I feel like I am in Limbo

shutterstock_190955204Since taking over the care role of my elderly mother, my whole days have consisted of caring for mum. Taking her to all many medical appoints. Re visiting medical specialists. Going to the Chemist. Shopping for mum. Cooking. Researching and talking to care organisations. Huge learning curve. Supporting her. Cheering her up. Encouraging her to go out, to walk to the end of her little retirement street to keep her legs moving.

Visiting her in hospital – thankfully a short two day stay.

Each time you think that you are on top of things and might have some time for yourself – something else is needed.

One phone call. One fall – and life becomes even more busy.

So I have been advised to go with the flow.  That it is just a season in my life. But it is really difficult to feel I have any kind of life for me. I have to squeeze in anything I want to do. I try to get to stretching and Pilates classes twice a week for ¾ hour and enjoy the growing friendship from some of the other women.

But I cannot plan anything.

My little celebrant work has dried up as I had to turn away enquiries and with just one wedding left on my book. I simply don’t have the time.

When I do have time. I have no energy. Hard to prioritise my own list of to do’s.

I mind my two gorgeous little grand daughters. Tiring – yes. But they light up my week every time I see them. As fun and laughter are missing. Seeing my two little grand daughters gives me the lift I need. The smiles, laughter and love.

Although my brother had been carer of mum (in much easier circumstances and with me as always the back up and also providing support) Centrelink have deemed that I am not eligible. I have asked for a review as it is an anomaly that one day she has a paid carer and the next day as I take over (under the asset and income amount) supposedly she doesn’t need one. Yet the needs of support has increased dramatically.

I have now purchased bedding for the spare room, to make it warm and comfortable for me for over night stays.

Yes absolutely feel in limbo. Cannot plan. Feel like each day is so out of my control.

It is Sunday. Day of rest??? Umm. Will go around and check on mum. Do dishes. Take her some food. With hubby do a few repairs. Strip her bed. Turn mattress, take away bedding for washing, replace with some already washed mattress protector etc, make bed. Do any little jobs. See she is comfortable. Rub some essential oils onto her. Just stop and have a cuppa – give mum some sit down time, rather than just doing whatever needs doing.  On the list is also buy a TV for her bedroom and get an electrician, cancel her home assist cleaner (replaced with a new one from a Level 1 package this week), and make contact with her banks….how to I establish her account on line, to make it easier for me to manage (I have power of attorney).

Interested to know and learn from others who have been there and done that.

Exhausted Celena

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