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!
Mum’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:
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
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
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
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
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.
As 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)
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?
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.
Since 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.