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Help for Family and Friends

If you have a family member or friend who has had a brain injury, it's certainly going to be a stressful time for you as well as the survivor. I decided to create this page to try and provide some help to family and friends, as they will more than likely prove an integral part of a support network.

 

I thought it might be useful to consider this from a survivor's point of view. To be clear, these are just ideas; every case is different, and they may not work for everyone. All hospitals and rehab centres will have different rules regarding what they allow someone to bring in.

Hospital - The length of time spent in the hospital will be unique and dependent on the circumstances of each individual. Being positive (while realistic) is good. People may enjoy hearing news from home and text or video messages from family who cannot visit. If the hospital allows it, having photos from home around the bed is a nice idea. Music is thought to help with recovery, so (if allowed) it might be worth bringing in some headphones with familiar music downloaded onto a smartphone/tablet, etc. Don't forget the charger! Reading is another good option, especially if an individual struggles to hold a book or their vision has been affected. Rest is essential after a stroke; if the person you're visiting falls asleep while you're there, it's still reassuring. My family visited me in ICU over the period of four months, and I have no recollection of them being there. It's worth trying to liaise with the medical teams (doctors or nurses) to get an idea of how things are going so you can have a clear idea of what's going on.

Rehab - Having spent four months in the hospital, where I was unaware of anything going on, and then arriving at rehab and suddenly had my mind blown by the long stay (four months) ahead of me. Visits from my family meant the world. I had a very full therapy schedule, but they would come in when I was free or attend therapy sessions where allowed. My speech therapist found it beneficial. When she was teaching me to talk (after six months with a trach), having someone there to talk to gave me something to focus on and get over the coughing spasms. My physio wanted to make sure my family knew how to help me walk safely, and my OT demonstrated how to use the wheelchair I would be temporarily borrowing. As a survivor, I can 100% say it's encouraging for family and friends to participate in therapy sessions in whatever way is allowed by the individual's therapy team.

 

Having personal items brought from home is very special. Similar to what I mentioned before, photos, a tablet/smartphone, and headphones are lovely. They may be well enough to watch a film by this point or bring something to read. I was allowed my clothes pretty much as soon as I got to rehab. This made a massive difference as it gave me the feeling that normal life was beginning to return. As I said earlier, the rules will vary from place to place and depend on the individual's circumstances regarding what you can bring in. When it comes to the time to go home, try to chat with the therapy team regarding any necessary preparation. This will be unique to each person but could include installing grab rails around the house, handrails on the stairs, or a frame around the loo. They will more than likely recommend some products that will be potentially useful, but this will depend entirely on individual needs. Check out my product page for the bits I use! It might be helpful to ask for exercises that the stroke survivor can do at home if there is a delay in community therapy.

At Home From experience, coming home is exhausting, and rest is crucial. I wanted to return to everyday life/the normal me as soon as possible. It took a lot of help from my family (and persuasion) to realise I was overdoing it. Offering help will be appreciated, but depending on circumstances, it will vary as to the specifics of precisely what they need. There is also the balance of help versus allowing some form of independence where possible. Ideas for help could include accompanying them to appointments, visiting the local community or helping around the house. Some people may require help with personal care. I was surprised at the number of things I couldn't do by myself at all or required help to do, though this does change as rehab progresses. Small things, such as pouring a glass of water or putting your socks on, are things to be proud of. "Small victories" is a phrase that takes a long time to get used to, can become frustrating to hear and is 100% a massive emotional rollercoaster. If someone seems short-tempered, forgetful, has less patience or cries more than before, that's all completely normal. They may also have limited patience and can get frustrated with themselves when they struggle to do what is usually a basic task. You must also be patient with yourself and don't get disheartened.

 

There is a balance when it comes to independence: too much help and not letting someone become a hermit. Sometimes, people can get overwhelmed, and once home, they begin to realise it really is a marathon, not a sprint. This can be intimidating, and the thought of being back in your old environment but adjusting to new ways of living can be challenging. This is where you have to weigh up between letting someone rest (this is crucial) and not letting them hide at home. There is an element of tough love, but as with everything I've mentioned, each survivor is different, not only in the effects the stroke has left them with but also in how they are beginning to adjust to the (common) phrase "new you".

 

You may be able to get assistance from your local authority, such as help on public transport, medical equipment, and potentially financial help. It's worth looking into local charities as some provide assistance for various issues, help at home, rental mobility equipment, and some areas may have a day centre (funded by the local authority or a charity). The day centre may provide a collection and drop-off from home. They can also be good places to regain confidence socially, and you may be able to find a local support group for stroke survivors. The latter is particularly good as they may provide some rehab activities.  

 It may be the case that inpatient rehab is not needed. If so, organising community therapy via hospital referral or finding someone in your local area is a good idea. If there's a delay (insurance, waiting list, etc.), looking up exercises at home is a good idea. YouTube channels are pretty good, and a local stroke support group should be able to point you in the right direction. It could be helpful to offer to create a weekly schedule for the stroke survivor as it is overwhelming when you first come home. This could include times to take medications and, if needed, what to take at each time, the times for therapy sessions happening each week and, if up to it, an outing to the local community. Trips in the local area could start with a cafe or shopping, then work up to something more extensive like the cinema or a sports match. As I have said throughout, every case is different, and every survivor will be left with different effects. You need to check with the medical team about how to help them and ask your loved one. 

 

One of the most essential pieces of advice I can give you is to make time for yourself so you don't get burnt out! Even if you pop out for a walk or take a five-minute breather, that's still something. 

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