Supporting my Dad

[CJM85]

Hi, I'm new here and feeling a bit lost. My Dad became very unwell in December and one of the things he's been left with is an acquired brain injury, but other than that he has no under lying diagnosis and we don't know what caused his illness. He remains very unwell and in hospital, but he's come a long way since he first become ill and we're finally talking about getting him home some how.

Our family is really struggling with this huge change, as it feels like it all went so wrong so fast. Dad was a very social, active and independent person prior to all of this. I'm trying to trust that his team will create a plan for rehab, so I'm attempting to concentrate on making sure my Mum gets the support she needs as she will be his main carer, although my brother and I will be be there as well.

I'm feeling overwhelmed by it all, and don't know where to start. I'm realising I need to slow down stop trying to organise everything NOW, especially when he won't be home any time soon.

So I was wondering , does anyone have any tips of things to consider first for preparing to care for someone at home? Are there sources of support that might help our family cope? I'm still getting to know Headway, but are there any particular services they have that may help?

Thank you for reading, and for any answers in advance.

I hope you all have a nice day 🙂

[Ballsintheair]

Hi, sorry for what you’re going through, it’s tough. I think the main thing is to take each day as it comes and once he is back home you’ll be able to work out what his priority needs are.

For me, it was trying to keep my husband safe and my kids safe as he was very confused at first and had to relearn everything again (e.g. was trying to stir a pan of boiling water with his hand, was breaking a lot of glasses and then using his hand to pick up glass, needed to learn what was shower gel and shampoo etc) - so it was really just a focus on being there and guiding gently. And Repeat, Repeat, Repeat until it gradually sunk in. He still finds planning tasks very difficult and needs a lot of guidance.

But it really depends on the needs of your Dad, and whether the main impact is cognitive, physical or both. We had a local neuro team that provided (very) limited home support with a bit of rehab work but that was just a few hours and so the main work was just us - we later paid for private physio and speech therapy until it was too expensive but the cognitive rehab was slowly done by us as a family. If you can get some locally funded support that would be best.

Hopefully before he is discharged, they will explain what he needs the most - e.g. relearning, peace and quiet, physical help - and you can try to focus on that. Brain injuries are mentally and physically exhausting so your Dad will probably need lots of rest. If he is able to talk, then perhaps you can ask him what is most difficult/frightening/worrying for him. My husband was too tired to even watch TV and just needed quite time alone but I needed to watch him to make sure he was safe and not endangering our kids as they were quite young at the time.

Please take it easy, this is a very stressful time for you and your family, and just take each day as it comes. I definitely think it’s best to start small and don’t plan too much, as you probably won’t know how best to approach it and easier to just take it day by day. I found the first year incredibly hard, but things do get easier. Good luck to you all x

[CJM85 in reply to Ballsintheair]

Thank you so much for your reply and sharing your experience.

Dad is looking at a cognitive and physical recovery, but his physical recovery is mostly just re-conditioning after such a long period of illness.

I'm probably being impatient and feeling a bit helpless as there is so little we can do at this stage. We're very practical people and waiting whilst doing nothing is hard. But you're absolutely right, we need to stop racing ahead and just take it day by day. In the meantime, I hear what your saying about local services and have no idea what he'll be able to get with the NHS when discharge happens. So I'll have a look at provision in the area and see what other support we might be able to afford.

Thank you. 🙂

[Ballsintheair in reply to CJM85]

I remember that the rehab clinic told me that the best possible rehab is a) lots of rest and sleep b) time with people he knows and trusts. 😊

[Pairofboots]

Hi, headway is a good starting point, headway has a raft of resources and services for survivors, carers, and family, they are contactable by telephone, 08088002244 during office hours, they have professionals that you can talk to, or you can contact them via their website headway.org.uk . This forum is made up by survivors and carers that have a wealth of lived experience, you can ask anything, someone will respond.

[Pammyi1]

Different Strokes charity have a great closed Facebook group for stroke survivors and their supporters. It's a great source of information. They also have Zoom meetings for carers too. Yhou can find out more here: differentstrokes.co.uk/virt...