Hello everyone! My dad (56) had a stroke in July, which spiralled into needing a decompressive craniectomy and a lengthy hospital stay. He came home two weeks ago and I have become his carer as my mum is now our family’s only source of income and had to return to work. I have had to defer starting at university until next year to look after my dad, and I just feel so unprepared. He is so fatigued and emotional, which is worsened by the severity of his aphasia. Has anyone else experienced this when beginning to care for a parent? I really want to do my best for him but don’t know how to do that yet.
Thanks, Scarlett
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Oh Scarlet
This must be so hard for you and so draining. Emotionally and possibly physically.
Clearly you will be quite young to be dealing with this, but can see why you as a family have decided to cope this way.
Have you got any external support I wonder? For yourself as well as your Dad I am thinking. Are you the only ‘child’ (obviously you aren’t a child rather a very responsible adult)?
I would have though that as long as you are there for your Dad making sure he is clean, fed and any physio done you are doing a good job.
He will be fatigued of course he will be emotional too. He has lost his place as provider and his own daughter is having to support him he is likely feel that loss hugely.
What does he like to do? Does he enjoy TV? If so what? If it’s cars can you find him things he can watch?
Finally having just asked more questions than answered have you thought about contacting the helpline here for yourself?
0303 3033 100
Hours**: Monday to Friday, 9 AM to 5 PM; Saturday, 10 AM to 1 PM
Textphone**: 18001 0303 3033 100
Email**: helpline@stroke.org.uk
Sending you some ((())) and hopes that the guys here will have some far better suggestions than me
Toni x
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Hello Scarlett and welcome to the forum. I’m so sorry to hear about your dad and sorry too that you’ve had to postpone university. How is your dad’s mobility?
For the first 6 months for the brain, it’s all about healing and recovering. And to do that it’s tiring so he will be resting a lot. The brain is very much in charge, and fatigue is way of controlling how much he does. That’s how I always saw it anyway 
He’s just experienced a life threatening event so naturally he is in shock. Emotions can be very much heightened plus his body is adjusting to the medication. It’s all a bit of a rollercoaster ride emotionally but it should gradually settle down over the coming months.
Is he receiving any kind of speech therapy for is Aphasia.
Also, there may be a local Aphasia group or stroke group in your area he might be able to attend.
They would be an excellent place for confidence building and tips/advice from fellow survivors and their carers.
I attend a local Aphasia group once a month run by the SA, its a self help group. As well as talks and activities, there are regular trips out too and it all helps with building confidence, helps restore a sense of independence and purpose in life, and plenty of practice with speaking to others without feeling a fool.
If you haven’t already, you might find your local Stroke Association’s Aphasia/Stroke groups from the link below:
Support groups in your area | Stroke Association
But don’t limit yourself, there maybe Aphasia groups run by other organisations, just google Aphasia groups for your local area to see what might be available.
Do make good use of the SA Helpline @Mabel1 mentioned above. You are not alone here, there will be many others coming along soon so keep coming back here. And do make good use of the search bar above, just click on the magnifying glass 
above right. There are many carers as well as stroke survivors on here so there are plenty of posts with some good advice. Also check out the welcome post some of us put together on what we wish we’d been told at the start. And here’s some more 40 things
As @Mabel1 said, so long as you are meeting his basic needs, clean, fed, medications and helping with physio, there’s not a lot else you can do. And its hard to advise with knowing his physical abilities are and what he’s capable of.
You will have to take your cues from your dad as to how/when to keep him entertained/occupied, physio alone can wipe out for an hour afterwards, likewise any speech therapy, tv might be too much noise. He may have the attention span of a Gnatt, same goes for short term memory, they too will gradually improve over time. In the meantime though, it means that anything he turns to that interest him or even his physio will all be in very short bursts. 15mins here, half an hour there, it all depends on how taxing it has been on his brain. But give him plenty of encouragement and reassurance that it can and will get better in time. His speech will improve, 6mths from now he’ll be better than he is today, a year from now he’ll be even better again.
Just don’t let him lose faith or hope that it will get better. This is a marathon not a race. And you’re not alone 
Lorraine
Stroke Improvement Group
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Hi @Scarlett-W welcome to the community. Sorry to hear of your dad’s stroke and that you have had to postpone university for a year. Stroke changes not just the life of the person who had the stroke but all those around them too. As you’ve just found out.
You should be proud of all you are doing for your dad. Not everyone would / could do it.
It is still very early days in recovery terms yet & fatigue & emotional are very normal at this stage. Let your dad guide you on what help he needs. Do what you need to but try & resist the temptation to do it all for him.
With any deficits post stroke repetition is key.
Get him to keep trying with his talking & anything else. However frustrating it may be just keep trying…it will get better in time.
@Mabel1 & @EmeraldEyes have given you some great advice so I won’t repeat it. In addition the Stroke Association also have a Here for you service - i believe carers as well as stroke survivors can use it.
https://www.stroke.org.uk/stroke/support/weekly-volunteer-calls
This gives you an opportunity to talk with someone who has been where you are now & can offer you some advice & support.
Please feel free to ask as many questions as you need / want to on here.
Best wishes
Ann
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Hi @Scarlett-W Welcome to the community, I’m sorry to hear about your dads stroke and that you’re delaying going to university.
There’s already been some great advice here from some of our community which I hope you’ll find helpful.
As @Mrs5K has mentioned, strokes affect all family members and as you’re being the main carer I would echo what others have said in that you need to make sure you look after yourself too. Please do make use of our services that have been mentioned.
If you need anything whilst you’re using the Online Community please don’t hesitate to tag me using the @ symbol.
Anna
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Hi Toni, thank you for such a kind response. Luckily my university have been incredibly supportive and have offered a lot of support even while I am away this year. I terms of support for my dad, we have community physio, occupational, and language therapists that come to our house a few times a week, but my dad has completely refused any help from community carers. I am an only child and we have no extended family, it’s just me, mum, and dad.
He absolutely LOVES our dog, so we try to get out on small walks everyday, and we have Sky Sports on pretty much 24/7. I think it’s just me over-worrying to be honest, but I will bear in mind what you say about keeping him clean, fed, and content.
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Hello Scarlett, I agree with all the replies and suggestions you have had from other forum users. It’s very early days for your dad and he’s had the addition of surgery so he’ll be feeling very vulnerable. When dad is feeling a little more settled it may be an idea to go with him to a stroke group if there is one close to where you live. I want to assure him and you and your mum that he will be welcomed into the the group by people who fully understand what he’s been through and most of all he won’t feel so isolated which can sometimes happen when you’ve had a stroke.
At the group I go to we have sports activities, a couple of husband and wife singers, we have a couple who show us film of their travels (which is really interesting) and we do crafts as well. We have an occasional meal out a couple of times a year.
The groups are very sociable and I’m sure he’ll enjoy them.
Ask anything you want someone will know the answer.
Ann
Stroke Improvement Group.
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Sorry to hear about your Dad Scarlett. He must appreciate all you are doing so much but please do remember to take time to care for and be kind to yourself.
I notice you mentioned about fatigue and you said you have the sky sports on in the background a lot. I watched a lot of tv early on but eventually found having periods with no stimulation and just either sitting quietly or napping helped a lot with fatigue.
You wouldnt really think it but the tv does seem to use up part of a limited brain battery when its trying to fix itself up. 
Please dont fret about uni. They sound rightly understanding of your situation and im sure they will help you to work things out when you are ready.
All the very best.
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I will keep in mind what you say about the TV - it really wasn’t something I had thought about! Luckily we have been working together on basic tasks like turning the TV on and off, so I think he would be able to turn it off or communicate with me to do so when he wanted to. As for myself, I have decided to take up crocheting to keep focused on something, so I’ve got my dad modeling for hats and scarves! Thank you for your response, I’m eager to soak up as much advice as I can get
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Thank you for your kind words and advice, Ann. I feel lucky to have found such a wonderful and supportive community for this tough time
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You are very welcome Scarlett. These are early days and for me at least it was a very bewildering time where everything was a struggle mentally while my brain was trying to heal and even simple things seemed hard and complex.
That did improve over time as others have also pointed out. I’m sure your Dad is extremely grateful for you keeping him compamy and will be enjoying spending time you both hanging out together.
I hope your new crotchet project goes well.
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You mention a really good point there re the TV. The TV, radio, music etc all stimulate the brain & can lead to fatigue. Resting the brain properly involves sitting quietly & doing nothing. I usually spend (or at least try) an hour each day sat in silence with my eyes closed to give my brain a complete rest.
Easier said than done though .
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Hi @Scarlett-W
Hello and welcome.
I’m a little later than normal to the thread for my own health reasons
Emerald has covered off the main things and the other words you have had will I hope be some reassurance 
I hope that 40 things Emerald referred you too will give you some insights such as the fatigue triggering that is anything blue light like phones tablets and televisions - also healing in the head uses a lot of energy internally and it isn’t available for use externally - rest is important
I wanted to add or emphasise a few points.
While no one would ever wish it upon you as an opportunity The experience you’re getting by being a carer will be invaluable throughout life forever.
Its Very much more relevant & useful and a preparation for the rest of your life in every way way better than a year at university - That is provided You keep an exit route to a life after the acute needs for caring settle-down.
The short-term adjustment and pressures maybe very very hard. It’s vital you and your mum have some escape valves and respite
Especially as the council social services will be very keen to leave any solution up to you rather than allocating resources. You must find avenues by which you can take a break and have some peer support and advice to show you you’re not alone and help you navigate the families new dimension to everyday living
others have suggested groups although the two mostly useful links are
Https://www.stroke.org.uk/stroke/support/groups/map-local
Https://differentstrokes.co.uk/all-groups/
And also
Maybe Contact us - Citizens Advice and ageUk to
Also have a look at Extra help and concessions
I don’t have the spoons to signpost more but there is much more here discoverable by searching
Caio
Simon
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Hello Scarlett,
I’m so very sorry this has happened to your dad, to you and your mum.
I have been immersed in caring for my mum since she had a severe stroke earlier this year. My mum has global aphasia but she’s slowly re-learning to talk. We have had to pay for a private SLT to fill the NHS gap in SLT provision. We’ve also had to get an NHS private physio for the same reason. But we live on the Suffolk Coast which is under-resourced generally. Your dad will hopefully have access to more NHS support.
Has your dad’s community social worker visited yet to do a care needs assessment? This will be an opportunity to explain how you feel.
Happy to DM you or your mum if you think i could help more. The NHS and social work teams are a labyrinth and I wonder if your mum, relative or family friend can navigate it for you.
You need to be a daughter, not a carer, although I fully understand that the suddenness of stroke throws us into caring roles unexpectedly. But you can get some of the ‘burden’ of care removed.
And as others say, your dad has had a very rough time indeed, and he’s doing to be very emotional for a while. It’s taken a few months for my mum’s emotions to stabilise but she’s now a lot stronger mentally and emotionally.
And keep using this forum - it’s very helpful and supportive.