The simple reason being, you matter too!
You are in this together, and as Kev’s carer, you need to watch your health too.
Now here’s the long answer
Your husband is receiving all the care that he needs. But who is looking after you?
Your health could very easily suffer as a result of your loved one’s suffering. It’s very easy to neglect yourself, you don’t even notice it half the time, when you are so busy caring for loved ones.
Whenever someone is seriously like that, it has this domino effect that creeps in gradually over time. The anxiety and stress, not eating/sleeping well puts your body in a vulnerable position.
The psychological and emotional trauma of it all can very soon lead to your own physical illness or major trauma! So if you don’t look after yourself, you could very well wind up in a bed next to him.
Above all else, you need to take all the help you can get or that is offered.
You are going to need to eat well, sleep, talk to others, take breaks plus taking timeout for yourself…to do things that will take your mind off all things stroke and cerebral palsy for a time…even if only for an hour a day. And grocery shopping doesn’t count; I’m talking about “me time”!
Don’t forget to keep up with your own medications if you have any, keep on top of medical checks and take your blood pressure regularly.
And if Kev’s interested and feeling physically up to it, maybe he’d like to join us on the forum himself sometime
Thankyou. I do have a hobby. I knit/crochet teddies. Before the stroke when he used to have a sleep in the afternoon I would do that and it helps me switch off. I haven’t really done much since but it is something I enjoy. I will try and take more time for me
@paula123 my wife uses the computer to ‘switch off’. The way you achieve that is unimportant what matters is getting that break and a chance to recharge the batteries. Make sure you have time for that, it is so important for both of you.
. Got to hospital for visiting and they told me he has got covid now and a touch of pneumonia on top of the chest infection!! Never ends! He’s doing ok though
Oh no I hope he gets over his illness soon so you can move forward with his stroke recovery. Sometimes it feels like it will never end but it will. Stay strong & look after yourself too xx
May things begin to sort themselves out for you both soon. More than ever you need to look after yourself. Take those me time breaks and let’s hope you get him home and feeling better before too long .
Just thought I would give an update. After kev getting covid he passed it on to me! . As of yesterday I was still positive! The good news is that he was discharged from hospital today and moved to a care home temporarily until they can get the carers in place. Definitely going to need two carers four times a day and possibly a visit in the middle of the night too. While he is in the care home he will be getting a needs assessment from social services. Been told the priority is getting him home asap so hopefully it won’t be too long. One step closer!!
I hope someone has talked to you about financial assistance. It doesn’t necessarily come through immediately so the sooner you apply the sooner you will be sorted. Also filling the forms can be a bit of a minefield, try asking the Occupational Therapist if they will give you a hand. Knowing what to say and how to say it can make a big difference.
Well it is good that you and he share things, but I’m not so sure about the COVID.
Remember too about what I said about that time to look after you. It is the way you will be able to cope. I’m pleased that my wife has her computer time, I certainly don’t begrudge her having a little escape.
The fact that you’ve got him home at last will be both wonderful and tiring, for you both very likely, so plenty of rest will be the order of the day.
Despite all this, strive to be happy and to look after each other.
Here’s wishing you both the very best.
Someone from the discharge team sent me a link for a financial assessment form so I filled it out. When I got to the end it said they estimated the maximum I would have to pay would towards care would be around £50 per week. I rang and spoke to them as when it came to household expenses they only wanted to know about rent, water and council tax. I asked about things like gas, electric, food etc. She said they don’t take those things into account but I could put on the notes any expenses I wanted taking into consideration. Just got to get all the evidence sorted that they need. Tested for covid again this morning and although its still positive the line was very faint (at last - been nearly 2 weeks) so am going to take it easy today as I can’t visit him!
@paula123
Thanks for letting us know how you are doing.
When you fill those forms err on the side of asking for more rather than less. There will be times when the bill is higher, always quote for the higher figure. You will also eventually have to pay for attendance, as far as I know only the first weeks are pre-paid.
I am no expert but I stress make sure you get good advice. Again, I’m not sure but perhaps the Stroke Association can help.
I hope you are both up to full strength very soon.
take care with yourselves and one another.
Citizens advice bureau and equivalent local charities which are often small high street advisors know how to fill in the forms with the magic words that boost your chances of being allocated. Have you applied for PIP yet - if not apply and your payments will be from the application date but expect it to be a long and painful process
Hi. Another bad day! Rang the care home to check how he had settled in to find out he had been admitted back into hospital last night. The number they had been given for me was wrong so I didn’t get any messages. He now has aspiration pnuemonia! He was out of hospital for 6 whole hours! He spent most of the afternoon getting mad at me then begging me to stay when I had to leave at 9pm. I knew to expect ups and downs but this is ridiculous!!
Sorry to hear that @paula123 just when you think things are heading in right direction. Hope he’s soon on the mend & back at the home to continue his recovery. xx
I just need some advice. So kev is still in hospital being treated for chest infection which is getting better but over the past week or so he has been getting mad with me and the nurses. Not being cooperative when they try to examine him etc and refusing to do physio. I can only imagine what he is going through . What can I do to help him? Are the mood changes likely to be permanent? Thanks.
I understand and sympathise with you but I also feel for him. Being stuck in hospital is horrid and he must have been so pleased to be coming home. Then no, more hospital.
I’ll say this, stroke is a trauma, it is terrifying, the effects are difficult to cope with. Getting worked up is almost a certainty. Things will calm down as he comes to term with his predicament and gets home.
He will still have his moments, stroke creates difficulties and tiredness, uncertainty, fear even will cause emotion to boil over.
In the long run you will both get to know the territory and then start making a better job of coping.
You have a rough patch yet to go through, but there is a tunnel and a light at the end of it.
In the meantime I’ll offer my motto which might help you through, both of you.
To better days,
keep on keepin’ on
keep coming back too.
Someone if not I will have kind words, understanding and a listening ear.
We do know what you both are going through.
Be brave.
I imagine he is probably rather fed up of everything that’s happening & with staff examining him a the time. I imagine he saw some light at tye end of the tunnel when he left the hospital, albeit briefly & being back there is not where he wanted to be. And as with everything we always take it out on those we love. It must be so tough for you.
Hopefully as his infection improves he’ll calm down again. Infections can make people agitated etc.
Personally, I see this as a positive sign…even if you and the staff bear the brunt of it. He’s fighting his way back. Speaking for myself, you do get angry, out of sheer frustration, when you have to spend any length of time in hospital. Especially when you are told you can go tomorrow and tomorrow doesn’t come or you get one foot out the door and your body lets you down again. Just to keep yourself distracted and entertained, in one place for days on end, is a trial for every patient on the mend. How much more of a trial must it be for anyone who’s had a stroke, so so much more limiting to keep yourself entertained and distracted. And then you’ve got the constant disruption of sleep at night, bound to make the healthiest of us cranky.
In saying all that, he is not a child, he is a grown man who should know how to treat people with the respect they deserve. So don’t ever hesitate to pull him up on his behaviour when its needed and let him when him know when he’s behaving like a spoilt child
Thankyou for your reply. I never thought of it as a positive sign but it makes sense. It has got a bit much a couple of times. I went to put my coat on to leave and he said “I’m sorry. Don’t go”. I can only imagine what its like for him trapped in his body to know what is going on but having trouble communicating. Physio came this afternoon and he although he wouldn’t do anything he said he would tomorrow. We will see. Over the last few days two different professionals have told me his progress has plateaued and IF he does improve it might not be much more. Isn’t 9 weeks a bit quick to be writing him off? Hopefully he can start to feel more positive soon and he will always have me encouraging him even if it does get him mad
.
. As of yesterday I was still positive! The good news is that he was discharged from hospital today and moved to a care home temporarily until they can get the carers in place. Definitely going to need two carers four times a day and possibly a visit in the middle of the night too. While he is in the care home he will be getting a needs assessment from social services. Been told the priority is getting him home asap so hopefully it won’t be too long. One step closer!!