Dad's cognitive impairments mean he doesn't understand his prognosis

Amber
Amberon Tuesday, August 27 2024
1 Comment

Hi All, my Dad had a massive stroke in 2021. He moved into a residential aged care home after 15 weeks. The stroke has left him completely paralysed on the left side and he's lost his eye sight on the left side of both eyes. As a result, he can no longer enjoy reading (he was a speed reader), crosswords etc. and relies on the TV most days. 

Up until recently, he was going to external physiotherapy sessions which helped motivate him for his overall recovery, got him out of the home and played an important part in maintaining his emotional and mental wellbeing.

Unfortunately though, we've had to stop the external sessions as Dad's become increasingly frustrated he hasn't made further progress. Our family and the wonderful physios have had so many conversations with him about his prognosis (that he's unlikely to walk again), but because of his cognitive impairments, he's unable to retain the information and think we've all just given up on him.

Over the last few weeks, he's become increasingly depressed which makes me think he may be coming to terms with it but I'm desperate to support him in any way we can.

I'd be so grateful for any advice on ways to better help my Dad understand things and also on any support groups or activities I could get Dad involved in. While he's physically limited, we're able to transport him in a wheelchair taxi to external engagements.

Thank you in advance for any help or suggestions you might have.

1 Responses
StrokeLine avatar
StrokeLine

Hi Amber,

 Thank you for reaching out and sharing your dad and family’s story. We are truly sorry to hear about the challenges that he and your family have been going through.

 It’s heartwarming to see how dedicated you are in finding ways to support him and improve his quality of life.

 

 We acknowledge that caring for someone with cognitive impairment is incredibly hard. Here are some ideas that may be worth exploring:

1. Speak to his doctor about these recent changes in his behaviour.

You mentioned that he has become increasingly frustrated and depressed.  His GP can do a mental health review to assess and identify if he would benefit from counselling/ and or medication to manage his mood and behaviour.

 

2. Discuss the benefit or appropriateness of referring on to a geriatrician/ psychologist.

Consulting with these specialists may provide additional specific insights and resources. They can work with carers/ families to put together strategies to help manage his frustration or depression. Liaising with a  psychologist may be the most appropriate way to work out how to explain his situation to him and help him “accept his new self” considering his inability to retain information.

3. Outline some strategies to manage his memory issues.

You may like to read more about practical strategies on memory problems and tips here.

 

4. Create a positive behaviour support plan.

This article from Synapse discusses a great way to understand challenging behaviour and develop effective responses.

CWA Home (unsw.edu.au) - psychoeducational program for families and carers to learn how to respond in positive and helpful ways to challenging behaviours that their person with a brain injury may engage in 

 

5. Support groups are a wonderful idea but it is important to discuss this with your dad. His consent and willingness to go and participate is key to making any meaningful interaction. You can start small by asking the residential aged care facility manager if there are any groups in the home that are appropriate for him to join and participate in.

You can also search for a list of support groups here. Select the state and region to narrow down the list.  

 

 

Coping with grief and loss following brain injury is an ongoing journey. Grieving who the person used to be can be confusing not just for survivors of stroke but also for their families. It is important to acknowledge ambiguous loss and seek support for the entire family unit, as this will allow families to focus on strengths and find meaning in their new realities. Carer Gateway (1800 422 737) is a place for carer support, services, resources, and education. Although there may be a waitlist, they also provide free in-person or over-the-phone counselling for carers.  

 

If you would like more information, please do not hesitate to contact us on StrokeLine 1800 787 653 or email strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AEDT and would be happy to have a chat with you. 

 

Best, 

StrokeLine

 

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