Hi everyone. I am new here. I am an informal carer for my partner who had a stroke in 2024. He has hemiparesis and various mood challenges that I understand are related to the brain injury. He needs a lot of support and I believe the carers and I are taking very good care of him.
We have an 11 year old son.
I work full time, sometimes over 40 hours a week. I do a lot of care despite him having a care package 3 times a day. I cook, clean, manage the house, and take him on holidays abroad. The carers help with his morning shower and ensure he has hot meals and drinks when I am out. He originally had care visits 4 times a day but was unhappy with the night visit, so I now help him to bed myself. I also take him to activities - massage, memory cafe ( when I am off, that is why I announced todays day as a rest day).
I am also going through menopause with pain, insomnia and exhaustion.
Today I tried to take one planned rest day - announced days in advance. I still cooked, cleaned, did laundry and made lunch. I went out briefly with my son to get some air. When we came back there was a significant anger episode - not the first since his stroke. I understand this is connected to his brain injury, but it is very hard to absorb, especially in front of our son. The reason was, that I went out without him and also " You treat me as nothing" he shouted at me. This morning he was so happy - he had a card and flowers for Father’s day. I also cooked lamb - his favourite ( I do not eat lamb).
Why I went out without him? I needed fresh air, as I felt really bad, after he prepared some home tasks, meaning that I or our son need to finish them as well.
I have nobody in my life who knows the full picture of what my daily life looks like. I found this forum tonight and just need to know - is anyone else living this? How do you cope? How do you protect yourself and your child while still caring? I am so exhausted…
Hello Melly1,
thank you for your message. Yes, did explain to my son. He declined to attend young carers groups. He has a lot of arrangements and attend sport classes, and thanks to the good network with other parents, he has no issues with dropping/picking up, when I am not available. After the incident, he made the table for 3 and my favorite salad, just to make me feel better. Also, when his father refused to eat with us, he brought dinner at his room. He has friends and they often come to our house to play. Todays going out was to book his birthday party on the beach. I have also very positive feedback from teachers, regarding his wellbeing - always positive and surrounded by friends. We are going through tough times but I am making sure he is well looked after. He had therapy sessions after the stroke, they helped a lot to understand and not to be ashamed by the reality in our household.
Dearest @Mirra
Welcome
You must be so so tired,
And I wondered if you felt lonely
Please ignore if this feels wrong,
I just felt for you ,
No one knows what your life is like,
Your husbands condition is v sad,
Perhaps he was less angry before he was ill,
Such a lot of loss and grief for you,
I am glad you have your work I hope the people are nice,
I mainly post on roll call as I get v busy,
I and my husband care for our adult daughter with schizophrenia who tries to live independently.
Warmest wishes Ula
Welcome to the forum.
My son, M, is now 47. Brain damaged at birth, he can’t read, write, or do any maths but other parts of his brain are fine,. I never had a totally child free day in 16 years. Which ruined my health forever. In those years I studied for an honours degree in Business Studies. Pure escapism in many ways. I was also supporting a disabled mum and going to steam rallies most weekends. I was absolutely determined to do everything I could for my family but never ever had time off to rest. I developed cancer and had major surgery, my husband died of a massive heart attack in his sleep 20 years ago, at the age of 58.
I’m full of admiration for what you are doing but no one appreciates the toll it is taking on you.
Now I have chronic arthritis and am often awake at this time of day or night!
Welcome to the forum @Mirra its a place where you will be able to vent and others will understand how exhausted you are if nothing else. Ive gotten some brilliant advice and made many friends here.
Your situation sounds incredibly challenging and like you are stuck between a rock and a hard place - caring for your husband and keeping your son safe from the outbursts.
Does he require much in the way of you helping to lift/move him? Have you had appropriate training for that? If not, i appreciate husband may not be happy with the night visit to put him to bed, but from a safety point of view, it may be necessary.
I have heard of people having personality changes following brain injuries so there is definitely an element of that in what you are saying, but it also reminds me strongly of my grandfather. He suffered badly with deep depression and would often snap at my mother ‘don’t you want me to get better’ etc - so i wonder if there is an element of that underlying things as well.
Speaking from my experiences (and i dont have the physical challenges to deal with your husband has, nor a child involved) you just do the best you can. There is no magic button that makes you cope better and it is exhausting. I think carers mask REALLY well, until we cant any more.
I know it can make things worse when you get back but i think its very important that you have things to give you a break that are not work or care related. And your son needs to do things that are ‘normal’ and not care related either.
Your husbands stroke is still fairly recent and i’d imagine he is still healing and finding his new normal - i do think the personality changes should be reported to his care team though as this needs monitoring at the very least
You may also be able to receive therapy etc through work - not every employer offers this but some do, and its worth looking in to. I would even consider scheduling a regular day where you do something for yourself. You could do it for each member of your family so husband can see things are ‘fair’
Id set up a wall chart for the month/year and pick out one or 2 days a month where you can do what you want with no caring responsibilities, like you did yesterday and put them down. Ask your husband and son to do the same. It might not help but it will start to establish a routine and give you a bit of breathing space
Hello Becca P,
thank you so much for your kind and thoughtful response, it means a lot to feel understood.
You make a really good point about the moving and lifting - I am well trained, in fact my profession is similar to caring, so he is in safe hands practically speaking. My last M&H training was last week.
Regarding the night visits specifically - it is a little more nuanced than it might sound. He requires physical assistance to get to bed, so it is not something he can manage independently, or on good days - it will take him a lot of effort. The care package included a visit at 9pm, but he often watches television and naturally winds down between 10-11pm. The fixed 9pm slot simply did not fit his routine, which is why I stepped in to cover it.
Regarding depression , I have considered this, but he shows no real signs. He eats and drinks well, enjoys going out in his electric wheelchair independently, and is generally content with life at home. The anger seems specifically triggered when his needs are not immediately met. Yesterday he felt he should have come with us on the walk, and in his mind that was a reasonable expectation. I do feel for him. He has a great deal to deal with including chronic pain, but the support he receives is genuinely brilliant. I am proud of what we have built around him. The personality changes are noted with his care team and with me and he has received telephone therapy. Interestingly, after he admitted losing his temper, he was told that anger is a normal response, which I understand, but it does not make it easier to absorb on the receiving end.
The monthly planning idea is wonderful and I will definitely try this. Thank you for the reminder that I matter too, not just as his carer, but as a person. I also know what I need to do, but I have no time or choice.
Welcome to the forum. Gosh, you have so much on your plate.
Well done for getting so much in place for your husband and your son. However, now is the time to put something in place for you. You are exhausted and can’t continue at the pace you have been going. Your care role is likely to be ongoing, so you need to get coping strategies in place now, early on. The longer you leave it the more difficult it will be. Most of us on the forum have got to the point of despair, so there will be lots of people that get what you’re going through.
When I hit a real low, I went on a course for carers run by a Cornish charity Promas and a NHS sleep better course. Both were invaluable. I learnt that to look after Mum, I need to look after myself and that I’m not responsible for her mental health. I make my hobbies a priority, as I need to look after my mental health. I also learnt to record the triggers that were fuelling her outbursts, so I could identify which I could try to avoid, which I could do nothing about, so should not stress about, and what works to diffuse those I can’t avoid. They also taught me to be open and honest with my friends, family and employer and to accept help when offered. Their advice has been so helpful. Not sure where I would be now, a year later. without it.
My relationship with Mum has had its ups and downs. Mum has had difficulty accepting her sight hearing and cognitive skills losses and can get very frustrated. I expect your husband feels that way too. The latest round of strops are because we are going on a proper holiday in September and she’s going to respite care for the first time! She has carers once a day, but won’t ask them to do anything above their normal duties. She won’t accept anyone else except family taking her out or coming in to chat to her. As I’m the only local family it’s all down to me. I’m now at the point that I know she’s lonely, but that I’ve given her options to help her loneliness and that if she won’t accept them, so be it. I can do no more.
I’m lucky in that I’m only a part time carer for my Mum and I only work part time. I also “buy” an extra 2 weeks annual leave. I’m guessing reducing your hours or extra holiday entitlement is not an option.
Hello Ula,
thank you so much for your message. I hope your daughter is doing well and that you are also taking care of yourself.
My work experience includes supporting people with mental health difficulties, so I understand something of what you live with daily. I deeply admire your dedication and commitment ,knowing this field professionally makes me appreciate even more how demanding and relentless it can be from the inside.
What I have seen in my work is that stability is absolutely possible. Many people with complex mental health needs live well for years when they have the right medication, the right environment, and the right balance of social, biological and psychological support around them. It gives me hope, and I hope it gives you some too.
Thank you so much for sharing this , and for the welcome.
I am moved by your story. You carried so much for so long - and you did it all without a single day to yourself. The toll that took on your health is a painful reminder of what happens when carers are invisible, even to themselves.
I am so sorry about your husband. And I am sorry that your body now carries the weight of all those years in the form of arthritis and sleepless nights. You deserved so much more support…
Your words mean a great deal to me, particularly that no one appreciates the toll. That is exactly how it feels. You have named something I have struggled to say out loud.
I will try to learn from stories like yours, to not wait until my body forces me to stop. It is not easy when someone you love needs you, but I hear you. I feel my body is falling apart as well, hope it is not too late.
It’s all very well him wanting to watch TV and wind down, but he’s not the one going to work next day. What about YOU winding down? The world can’t always revolve around him. If he was well it would be perfectly normal for you to pop out for a walk with your son, and maybe as your son is growing up and approaching puberty he needs time alone with you? Can you keep in touch with the young carers group coordinator? With school holidays approaching there might be something your son would like to join in with, or another young carer near him?
I started a group for families called SCARF about 40 years ago to support families with a disabled child. For the last 2 weeks of the school holidays we rented the local youth centre, the whole family could join in with a range of activities. Each parent agreed to arrange one activity. This meant the siblings of the disabled child could have some fun too, and make friends with others who understood. Only recently, when I needed some new tyres, my eldest son suggested that I contact a tyre company run by one of the siblings he’d met then.
Does your husband belong to any social groups?
Welcome @Mirra. You have found the right place. It has saved my sanity and at times Ive felt there strength literally at my back when things have been tough. I have a covert narcissist mum of 93 I’m 66 an only child. I finally hit burnout last June. My body felt like it had slowly slid down a tree trunk and I was sitting on the grass. My brain did not care anymore it had no empathy or love for my mother. It was sudden like a switch. It was my brain and body working to stop me ending up hospitalised with a full breakdown. Anyway that’s my story.
You are doing an amazing job well actually 3 full times jobs work husband son. You do need space for yourself. The calendar idea with advance you days is great. So much rich ideas and advice are here. I worked with a lady who’s husband ended up with “ locked in syndrone” basically a type of stroke where he was paraysled completely but his brain was fully functioning thought wise. He did get home full time carers uses a computer to talk etc etc. She did eventually get help though SW and every month has 2 days to herself completely to do what she wants. Made a huge difference. Their Granddaughter how has been brought up with her Grandad like this just takes it as normal. His electric wheelchair his tubes etc. She sits watching TV on his foot rest and hugging his legs. He too has bursts of anger but they are no verbal it’s more in refusing food or medication or typing out vile things.
It’s hard on your son and he will be wanting to care for you make sure you are ok. Because I know you are a great mum. It’s great he brings his friends round so he like you can have some proper me time
So where is the calendar …….
@Mirra welcome to the forum.you do have a lot to deal with and have already been told lots of things I would have said. One thing I did think of as I was reading your messages but I don’t know if it’s suitable. The carers used to come at 9pm and your husband didn’t like that because he likes to watch television till 10pm-11pm so now getting him to bed is left to you and if you are tired you may want to go to bed earlier. Or want to relax and wind down yourself at the end of the day. What about having a television upstairs. So the carers can come at 9pm put him to bed and he can watch telly in bed and then go to sleep. Then you can do what you need to do at the end of the day and sit and relax before bed without this extra job for you. I hope you have a good day take care.
Thank you, HorsyDeb.
I will try to connect with this charity, we live in Cornwall as well.
The financial situation is not great, and I can not reduce hours, in fact I will need to increase them. I have planned our next holiday, but today I am not sure that I want it. This morning my partner came to me in tears, hugged me and said that he is living for us and we need to stick together. I said we need to talk, we sat down and I explained that I am not tolerating this behaviour, i do not want for him to thank me but I also do not want to shout at me. This became repeatable. I asked him why - he said that he needs attention and love at least once a week, I asked if he thinks he does not receive this? He then said - because he is a man, he has the right to shout. I wonder - is this stroke speaking here, or who believes he is in our relationship. I am scared and really not sure what to expect tomorrow. The trigger could be anything that he thinks he is not included/not done the way he thinks. I just can not find decision…
Thank you for your advices.
Husband spent a lot of time in social media, Facebook mainly. We have also a few close families, and they are all very supportive. A very closed friend from his childhood, with his family, came to visit us for Easter.
This is a link to the charity I talked about. At the time, I took 2 days off work for the “caring for dementia carers” course, time I felt I didn’t have. The two days were exhausting as it covered so much and it was emotionally draining. I also took extra time off to digest all the information and put in place some of the suggestions. I thoroughly recommend attending one of their courses (maybe caring for carers). It’s been life changing for me.
Dearest @Mirra
Bless you,
Your a gem,
I was so moved to get your message to me,
Even though you are evidently having a very tough time,
You took time to be v supportive of me.
You helped my day feel brighter, hugs Ula
@Mirra am in a very similar situation. Husband has had 2strokes in 18 months. The most recent one has badly affected his speech and he knows what he wants to say but often can’t get the words out. He is prone to falls, cries a lot because his life has changed completely and he can only use one hand (the wrong one) and he is mainly in a wheelchair. Just been prescribed some different antidepressants so will see if they help.
I seldom go out alone and no longer have time to socialise, go for walks, get to Aquarobics, go on a bike ride. I miss all of this but feel so sorry for him as apart from watching TV (and he never was one for it) and an occasional jigsaw there’s not much to occupy him. I take him to Drs appointments, we have just started with a private physio and we try lots of exercises online. I do the garden, all the driving, cooking, cleaning, washing, personal care, shopping etc and things like car wash, gutter cleaning, big hedge cutting, pressure washing I have to pay other people. Most of the time I am exhausted like you!
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