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.
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
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.
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!