The Stroke Recovery Journey

A road map I wished someone had given me

Let me start by saying, everyone’s stroke journey is different. Everyone’s stroke is different, everyone recovers differently, and the types of rehabilitation options available in your community may vary greatly. That said, there are phases of the stroke recovery journey that are consistent. Perhaps unsurprisingly, there are unique demands placed on us as caregivers during each phase. When a loved one has a stroke, all of the focus is on the stroke patient - rightly so. In other words, caregivers often receive little guidance on what to expect. I wished someone had given me a roadmap, to give me a glimpse into what the future would hold. 

Strokes are terrible because they strike without warning. One minute you’re going about your regular routine; the next, your life changes instantly. My parents prepared for aging better than most. They moved to be closer to me, knowing I would play a big role as a caregiver. Where I live is a larger urban centre, offering more medical services than the small town they came from. They downsized and bought a condo on the first floor to make mobility easier. My mom even created something we affectionately call the 'death book'. It's a one-stop book for everything I need access to or to know when the time comes. And still, we were so unprepared to manage my dad’s stroke. 

Before my dad’s stroke, I was running my own business as a consultant. I was working on a complex technology project at the time. High stakes, high pressure. I’m also a wife, and a mom to three kids, aged 15-20. My life was extremely full. At the time of my dad's stroke, I didn't realize how much my life would have to change too.

Phase 1 - Stabilization

This begins as soon as the stroke happens. A stroke is a life-threatening event. The goal of this phase is to stabilize your loved one. This unfolds in a hospital setting and is managed by the acute care team. 

What to expect in this phase:

• Duration of Phase - The length of stay will be dictated by the severity of the stroke. If the stroke is minor, it could just be a few days. If the stroke is serious, it could be a couple of weeks or more. Your loved one will not be discharged until they are deemed medically stable. During this time, they are assessing the impacts of the stroke and your loved one’s capabilities post-stroke.

• How to Show Up - The acute care team can't tell you how long the stay will be at the beginning. This makes planning what to do about work and your family’s routine difficult. Try to take a couple of weeks off work if you’re able to do so. Lean on other family members and friends to help keep your household running in your absence. 

• Uncertainty - You will have lots of questions about your loved one’s prognosis and ability to return home. The acute care team will not have all the answers. This is in part because stroke recovery can take years. They are focused on how best to support your loved one in moving to the next phase in their stroke recovery journey. You might not find out until the end of your hospital stay what the plan is. 

• Grief - If your loved one’s stroke is serious, you may be grieving the loss of who that person was before the stroke and need to come to terms with this new reality. 

• Transitioning - The acute care team needs to determine if your loved one can return home or will need to continue on their journey on an inpatient basis. If they can return home, you might require home care services to help your loved one with light medical services and daily living tasks, such as bathing. Home care services are not cheap, and it’s a maze to understand what services might be covered versus which costs you will need to shoulder independently. 

Phase 2 - Rehabilitation

This phase includes a variety of therapies, depending on the impacts the stroke had on your loved one. Typically the therapies will include physiotherapy, occupational therapy, and speech therapy. Rehabilitation can be delivered on an in-patient or out-patient basis. The acute care team at the hospital will decide, based on the capabilities of your loved one. For some, it’s safe to return home. For others, they still require ongoing medical care to support their complex needs. Where you live and what services are available in your community may also dictate what this phase looks like, or if rehabilitation can even be offered. 

What to expect during this phase:

• Hope - It’s normal to hope your loved one will return to “normal” through rehab. It’s more likely your loved one will find a “new normal”. 

• Energy - The rehabilitation phase is intense. Your loved one will be tired in the early days post-stroke as the brain tries to heal itself. This can be a taxing time, trying to encourage your loved one to fully engage and participate in the therapies when they are so tired. Your loved one needs to build up their stamina. 

• Mobility - If done on an out-patient basis, there are countless appointments to manage and get to. Your loved one will need support with transportation to and from the appointments. They are also very likely to need mobility aids, which will come with a cost. Depending on your jurisdiction, out-patient therapies may or may not be covered by your regular health care or benefits. This can cause financial stress. 

• Progress - Expect your loved one to make significant gains during rehabilitation. It really works! 

• Duration of In-Patient Rehab - If your loved one is doing in-patient rehabilitation, the average stay is 6 weeks, but can extend well beyond that. Your jurisdiction will dictate whether or not the in-patient rehabilitation is covered through regular health care coverage or benefits. The care team will keep you informed about your loved one’s progress and will start planning with you for the next phase.

• New Routines - During this phase, you might be able to settle into a new routine. However, there remains a lot of uncertainty about what comes next. 

• Uncertainty - Caregivers may start to feel the fatigue setting in and question if changes will be required in their own life to support their loved one properly. 

• Reality Check - You will begin grieving the loss of your own life as you knew it as the reality sets in.

• Transition Planning - Stroke survivors doing in-patient rehab almost always expect to be able to go home. This may not be possible. Many people cannot go home and need to transition into a supportive living facility. This can be a heartbreaking reality for your loved one and will come with the grief associated with mourning their former life. Unfortunately, rehab facilities spend very little time helping patients move through this emotional stage, so this responsibility is on the friends and family of the patient. 

• Supportive Living - Transitioning out of in-patient rehab is a huge transition that comes with new stressors for the family. If your loved one is transitioning into a supportive living facility, this is when the financial strain will really kick in. Care facilities come with a significant price tag, ranging between $2000-$5000 CAD per month (in my jurisdiction). If your loved one is married, they were likely unprepared for the financial strain of paying for an additional “household”. 

Phase 3 - The New Normal

This phase is about learning to live with the aftermath of the stroke. This phase hits hard. There is an intensity associated with the rehabilitation phase that comes to an abrupt end here. Further, there is noticeable progress being made during rehab that will feel as though is coming to an end. This phase requires your loved one to decide what kind of life they want and to dig deep to achieve those goals in the absence of therapists pushing them on a daily basis. 

What to expect during this phase:

• Isolation - Your loved one might feel isolated. For many, they are unable to do the activities they used to. This can result in staying home much more. 

• Loss of Independence - Your loved one will likely have given up a lot of independence, needing to lean on others for support with basic tasks. This is true if they return home, but even more pronounced if they need to move into a care facility. 

• Mental Health - Mental health challenges can really set in here. Your loved one will constantly compare their new life to their old life. 

• Reality of Caregiving - As caregivers, this is the hardest phase. The fatigue of caregiving has really set in. Your loved one will need you more than ever in this phase. People who haven’t lived this experience expect you to get back to your old life, but your role has changed indefinitely. You might need to make changes in your own life to play this role on an ongoing basis. 

• Connection - If your loved one has moved into a care facility, you will need to work hard to make sure they don’t feel cut off or disconnected from the family. If you've ever spent time in a care facility you will see residents who appear to have been abandoned. That said, you can't spend all of your time there. Finding the right balance is challenging.

• Emotional Toll - Caregivers feel a range of emotions. You have taken on significant costs associated with the care requirements and your time has been eaten up with caregiving tasks. Your own identity has changed. Your plans for the future have now been impacted. You might feel resentful, stressed, tired, and invisible. 

The stroke journey impacts everyone in the family. There is a lack of support with the transition planning and mental/emotional support required for everyone on the journey. This type of road map needs to be shared with families and services aligned to manage the unique challenges everyone will experience along the way. 

Not only has my dad’s life fundamentally changed, but so have my mom’s and mine. My dad has been the focal point of the journey and my mom and I have been left to pick up the pieces on our own. We are grateful my dad has survived, but it's not without its toll on us.