Hi Hilda,
Thanks for reaching out, I hear how overwhelming this must feel right now. It can be quite confronting to see how the stroke has impacted your loved one in the early stages of recovery. There are always uncertainties around what the future may hold, including rehab outcomes, however you might find the information offered in the My Stroke Journey booklet helpful in guiding you with knowing what to expect (access link: msj-short-layout_1224_fa_v12_r2_web.pdf).
Hospital pathways
Usually after the acute stage of a hospital admission (for example: after the stroke ward or heart valve surgery) and your partner is considered medically stable by all the medical teams involved (for example: the stroke team and the cardiac team), he will then be ready to move onto the rehab phase where the focus will be solely on optimising his functions post-stroke. There are different pathways for rehabilitation which typically include: 1) inpatient rehabilitation; and/or 2) community rehabilitation. The most suitable type/destination for rehabilitation will be assessed and guided by the hospital team, including Allied Health professionals such as occupational therapists, physiotherapists and speech pathologists.
Remember that it is still very early days after your partner’s stroke, and it sounds like there are still a few medical issues that need to be managed. For the time being, it will be a good idea to have some therapy input, however do allow the therapists to be guided by your partner’s ongoing medical needs. The hospital team should be able to continue assessing for the appropriate next steps as your partner progresses. It’s hard not to worry about what the future will look like, but it sounds like your partner is in the right place for the treatment he needs, and hopefully both of you are pushing through one day at a time.
Feel free to check out the following resources about maximising rehabilitation:
Making the most of rehab
Your mindset affects your rehab and recovery
Finding the New Normal – a podcast episode
Neuroplasticity | enableme - stroke recovery and support
How to balance being hopeful and being realist about recovery
Communicating with health care team
Additionally, learning to advocate for yourself or reaching out for help to navigate the health care system means you have a better chance of getting what you need. It is important for you and your family to initiate early and consistent communication with the hospital team. You can raise any concerns you might have, or any wishes that you and your partner hold when it comes to hospital care and rehabilitation goals. You can also consider bringing in meaningful items to the hospital (if the hospital permits) to engage and motivate your partner, as this is understandably an extremely difficult time for everyone involved.
If you have concerns that about your/your loved ones’ needs are not being considered, I would strongly recommend asking for Social Work involvement. They can meet with you and be an advocate to assist with coordination of external supports that may be needed upon discharge from hospital.
Support for yourself
Given the complexity of this time, I would also encourage you to look after yourself, especially in dealing with the emotions which you may be going through. Consider Carer Gateway - 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. This is something you could explore to see if additional services (e.g., cleaning) can be provided.
Tailored Support Packages | Carer Gateway
"Call Carer Gateway on 1800 422 737, Monday-Friday, 8am-5pm and select option 1 to speak with your local service provider. They will register you with Carer Gateway and start the planning process. This process helps our staff learn more about you and your caring role so they can match services to your individual needs.
You can also ask someone to call you back at a convenient time."
You can also consult with your GP for a Mental Health Care Plan in order to access a Psychologist for counselling. If you are currently working, consider utilising your workplace's Employee Assistance Program (if it is offered), once again to access counselling and to be able to hopefully process at least some of what you are going through.
Other resources:
The young stroke website is a great resource and was co-designed with young survivors of stroke aged between 18 and 65 years old. There are a variety of resources on this website, including a way to connect with other young stroke survivors here. You might be able to speak to someone who has gone through a similar experience to you and your partner.
I hope this is helpful to you and that you are looking after yourself during this time.
Please reach out to our Stroke Line in the future if you need further support. You can reach us on 1800 787 653 or email strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AEST.
All the best,
Bethany (StrokeLine)
