Hello my story so far.

Hello Rodneyd

Thank you for reaching out and we are so very sorry to hear all that you and your mother are going through. It sounds like it has been a terribly difficult time for the both of you, and you have done an incredible job in continuing to look after your mother given your own health issues.

The fact that your mother was put into isolation for some time given her positive test for Covid, even though it was not necessarily an active Covid case, must have caused a lot of stress for you all.  I am pleased to hear that she was finally given the anti-biotics and this helped resolve some of her medical issues.

You have been brave to share what you are all going through at the moment, and I am sure that others here in the community will reach out with support for what has been happening for your mother and for you.

You have shared a lot and given that you do have quite a few questions as well, it might be helpful to have a conversation with you as well as reply on this Blog post.  You can give us a call at StrokeLine or email us and I will post the contact details below. This will give us a chance to respond to you directly and give you as much information as we can to help support you.

If you do wish to resign from your role, your employer cannot stop you.  It is important that you put your own health and wellbeing first Rodney and do what is right for you.  There are Centrelink supports that you, your mother and your brother may be eligible for, which can assist with financial burden if you do decide to resign.  Working 38 hours a week, caring for your mother and having your own battle with prostate cancer is a huge weight on you, that is enough responsibility to cause stress and concern for most people.  Can you go and talk with your employer again even if it is just about taking some long service leave (if you have any), or leave without pay, just so you can have some time for some self-care.  It is important to consider self-care, both for you and for your mother.

The fact your mother has had a stroke means she does have an acquired brain injury, as her stroke would have led to permanent damage in her brain.  We know that stroke recovery, can be life long and given the fact your mother is having ongoing issues it is good to know that she is receiving some ongoing rehabilitation. I would make sure you are communicating with them about how she is struggling with her motivation, and perhaps check with them to see if they have a psychologist on the team. They may be able to help with developing goals your mother wants to work on, and making sure it is not her mood (possibly depression) that is making her refuse rehab and want to sleep.

Has your mother been referred to any mental Health support such as medication or input from a psychologist. Mood changes are very common post stroke and can cause impacts such as depression and anxiety. It sounds like your mother might be experiencing some mood changes given her requests asking you to help her die.  Psychological input and medications can help manage these feelings and could help both you, your brother and your mother manage these feelings.

You mention a Palliative care visit, have they been able to support you in your caring role at all?  Are they going to provide you any ongoing support? It might be worth talking with them again to see what other support they may be able to provide to help you manage your own health, and the care for your mother.

In regards to your questions I have answered them separately below, but again it would be good to talk with you over the phone about these so we can go through them all in more detail.

Is it normal for Respite to not assist people out of the wheel chair or Bed?

If it is in-home respite and your mother needs physical input to get her off the bed or out of a chair, no they may not be able to provide this support as they may be at risk of harming themselves or your mother. Does your mother use any other equipment to help her get out of the wheelchair or bed, such as a hoist? If so, these types of equipment do require more than one person to use them at any time.  This is where Physiotherapy rehabilitation may assist your mother to improve her transfers and make it easier for her to access the in-home respite and for the carers to be safe in helping her to transfer.  Have you and your brother considered facility-based respite for your mother. This can give you both a break and provide appropriate and high quality care for your mother when you need a break?  This would need an Aged Care Assessment Service Assessment through My Aged Care, but can provide subsidised days each year to help support carers such as yourself, and provide care for your mother to help keep you physically able to continue your caring role.  You can read more about respite here and also reach out to Carer Gateway to help provide you with some practical and emotional support I your caring role.  You can contact them on Ph 1800 422 737.

We recently got a raise in the package and the Care people upped their prices to take up the Raise, has anyone experienced that?

Unfortunately, we do know that services often raise their fees on or around the new financial year, and this can certainly impact on the number of hours or service can access through a home care package.  I’m sure there will be others in the community who will have experienced a similar issue.   You and your mother do have the right to make a complaint about any aspect of her aged care experience. If you have concerns, it’s important you raise them. I would recommend starting with contacting the service provider and speaking with them, if you do not get the outcome you expect with them, then do reach out to the  Aged Care Quality and Safety Commission online or by calling 1800 951 822 and they will be able to follow up with your concerns.

We did an assessment for her swallowing, and I have to mince all her food, do you know of any sites with recipes

There are a few sites that provide modified food recipes and there are also delivery services that provide delivered modified food and drink meals as well.  I would ask your mothers Speech Pathologist about providing you with some options for recipes. We cannot recommend any of these specifically but you might like to look at Texture Modified Recipes – Flavour Creations or Recipes for a Dysphagia Diet – Care Food Co or NEMO HEHP Recipe Ideas for Puree, Minced Moist and Soft and Bite Sized (health.qld.gov.au). I’m sure others will have idea’s and suggestions for you on these as well.  You might also like to look at the EnableMe page on swallowing here and have a look at the attached resource Nutritious Purée Food Recipes.

How do I motivate mum to do more rehab we got them in 3 days a week now she just sleeps all the time saying it’s too cold, maybe it is too cold?

This may also be associated with your mother’s mood. When depression and anxiety affect someone after a stroke, it can also impact on their motivation levels. Speak with her Gp about medications, or input form a Mental Health clinician such as a psychologist.  There might be a psychologist on her team, so reach out to the treating team and ask if they have one that could come and talk with your mother.  It is really important to identify mood changes, and also use strategies to manage these so that they are not having an impact on other aspects of her life as well.

We did try and get Vision Australia to look at what can be done about helping with her macular living a better life it’s been it’s been 9 months, how long does this usually take for them to visit?

It can be difficult to give you an exact waiting time, but we do hear very regularly here on StrokeLine that many services have long waiting lists. I would call Vision Australia directly to see where your mother is on the waiting list, and to check her referral has gone through via My Aged care.   Guide Dogs Australia also provide services to those with vision changes, both following a stroke and more generally with macular degeneration.   You can reach out to them here or on Ph 1800 484 333.  You might also like to get her a specialist opinion in regard to treatment options if she is not having treatment ands ask your mothers Gp to refer her to an ophthalmologist. You brother could then perhaps take her to the appointment on one of his days off. They do not home visit, so your mother would need to attend the clinic. Her GP may be able to refer her to someone close by and with a speciality in macular degeneration.

How do I calm mum when she has the Dr Jekyll outburst?

It can be difficult to manage changes in behaviour after stroke, but things like medication and psychology input can help.  It can also be helpful to acknowledge how your mother is feeling and behaving by using statement such as “You seem upset” “How can I help you” to try and calm her down and work out what is making her frustrated or angry. Then you can work on strategies to try and manage this behaviour.

It can also be helpful to try and identify any triggers that may lead to her outbursts, and try and limit or reduce these. It could be more evident when she is overly tired (faitgued0, or when she is being asked to do a certain task.

It can also be helpful to give her feedback about her behaviour and how they make you feel and how they impact on you. Let her know you will talk with her once she has calmed down and leave the room.  Then return once her behaviour has calmed and start the conversation again.

We can talk with you in more detail about some of the other strategies that might be of some help over the phone.

We weren’t told much about incontinence pants, we started buying Real Fit from Woolworths but I hate the waste, I have tried washable ones like Luna love there not very good and Modibodi I get them from Bigw.  They are good but mum feels wet in them when she wee’s.  She also has bowl issues so on the occasion I am clean up a no 2 I don’t think the Modibodi would work for that.

What are your thoughts on Incontinence Pants?

It is important to speak with a continence nurse for any recommendations for continence aids. One can be arranged through your mothers GP, they could home visit and assess your mother for the right type and style of continence aid. They can also assess your mother for any funding she might be eligible for, as funding is available to purchase continence aids.  Every person is different and it is important to find the right style and type of aid, so that you mother stays clean and dry, and is not at risk of skin integrity issues or infections.  The Modibody may not be appropriate depending on how incontinent your mother is throughout the day., and they are not appropriate for faecal incontinence at all.  You can also reach out to the National  Continence helpline and speak with one of the continence nurses there who can provide educated and practical advice. You can find there here and by calling Ph  1800 33 00 66.

How do we fix separation anxiety we have to be around ie cant have a shower that’s me Friday, Saturday, Sunday and Monday as My brother is working

Once again this would be helpful to discuss with your mother’s Gp and perhaps have a psychologist involved to work with your mother on strategies to manage her anxiety. It can be very difficult to control anxiety, especially when you are reliant on other people for your care and independence.  It might also be helpful to use a count down times (so your mother can hear it counting down, or a kitchen timer that rings at 10 minutes) to say I will be back in 10 minutes, so when the timer goes off I will be back here for you. This might take some time to get used to, and will depend on your mother’s cognitive capacity and ability to logically understand these types of instructions.  Sometimes it will also take time for her to learn that you are always coming back and always do as you promise you will. 

I hope some if this information is helpful. It could be good to talk with you over the phone so we can talk in more detail about your questions, and answer any others you might also have. You can give us a call on StrokeLine on Ph 1800 787 653, or send us an email at strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm.

Once again thank you for sharing and do reach out so we can support you in your caring role for your mother.

Kind regards

Siobhan (StrokeLine)