Can anyone point me in the direction of support groups online for me to chat, I have lived with my husband for 14 years, married for 3, he was disabled 15 years before I met him, I have no problems with the care (my job is a carer for a company) my frustrations are dealing with my husbands moods and finding a way to vent my frustrations without shouting and arguing with him. His disability has got worse over last 6 months and He is now in a wheelchair permanently and becoming more incontinent, he is struggling to accept this, which I understand, but takes his frustrations out on me. (He is 65, I am 56)I am becoming very low and depressed. Because his accident (which caused him to become disabled) involved a brain injury, he does quite irrational things and his memory is really bad he denies his actions. To be honest all I need to do is talk to someone to try and help with my feelings, and spoke to my doctor and they referred me to ITslk but have not heard anything from them. Any guidance would be gratefully appreciated.
Welcome to the forum.
You sound very tired, when did you last have a break?
Iāve been caring for my son, brain damaged at birth, for 42 years. I am nearing 70, tiredness is my biggest enemy.
Are you getting any help with your husband?
When did he last have a review for his brain injury?
I too am a unpaid carer for my husband, he has been in a wheelchair for 6 years , he wouldnāt persevere with prosthetic legs and is also obsessed with going to the toilet , he uses catheters to empty bladder ,but struggles with any thing else , he needs me for assistance with personal care which I accept ,but uses his need for the toilet to keep me with him, , I looked up narcissism and it described him to a T. Iam questioned continually as to where Iām who am I talking to and all aspects of my movements , so bad I literally lose my temper and try and get my own space, although I can hear him shouting for me , no idea how to deal with our situation
Wendy, when did you last have a break?
I know this looks like an idiot question, but itās very serious. You canāt keep being slave 24/7 for the rest of your life.
You need to go out, feeling free, some of the time. If you love him enough to care for him so much, shouldnāt he love you enough for a 2 week break???
Tried getting a break ,but unless he volunteers to go somewhere they canāt make him ,and he refuses, he canāt be cared for at home as they canāt make sure someone is here when needs the bathroom, ,i do see two very supportive friends an hour or two a week , but they canāt even come to me as he is very abusive and accuses them of taking me from him , I just go for walk or go out for an hour or two at most , we are both in ourseventies ,and his unreasonable behaviour has ruined our final years , I no longer even like him which makes it harder to suffer his abusive talk ,
Wendy, nobody has the right to abuse you. And you have the right to leave an abusive relationship. It may sound really scary because there are lots of unknowns, but to be honest, to me your situation is not something anyone should expect you to put up with - and anything, no matter how scary, would be better.
With you leading your own life, heād have no choice but to accept others.
Think about it - what if a friend was in your situation? What would you say to them?
I donāt want to be a burden to anyone, but I donāt know how to cope with everything by myself. I knew I couldnāt do this on my own. Talking to someone like a therapist, family member, or close friend can really help. You donāt have to go through everything alone. There are ways you can get help with your feelings and get through this. wordle unlimited wordle
Jacqueline, may I ask how old you and your husband are?
Nothing is going to change for the better unless YOU do something.
If you āno longer even like himā why do you stay?
Have you told your doctor how things are at home?
Considered counselling?
What would happen to him if you fell ill?
He would have no option other than to accept outside help - a nursing home would be the only option, given his need for help with the toilet.
Jaqueline, frustration is hard to deal with, and leads very easily to guilt.
My wife was diagnosed with Alzheimers 2 years ago, and her behaviours and moods have changed and are still changing. She too has mobility problems, and anxieties about leaving the house, and about meeting people, which got worse during lockdowns. I am now a full time carer, and whatever goes wrong, I am to blame.
I often get told to take a break, but how? The support organisations in our are are running short staffed due to covid testing. There are also long waiting lists for help.
I wax offered a carer coming in for a couple of hours a week by one organisation, but what can I do in a couple of hours during the day, except go for a walk and worry if my wife is OK.
Weāve been married for 40 years. Wherever Iāve gone , weāve gone together, shopped together, gone to cafes together, pubs
together, gone for walks together. So where does a 60 year old man go on his own for a couple of hours?.
I have found calling MIND, or carers uk, or the Dementia helplines useful, just for someone to talk to, when the frustration, and loneliness get a bit too much. Its either that or have a bloody good cry, and sometimes its both at the same time.
I can relate so much to all the things everyone here has said. As carers we cope with so much, both physically and mentally, often tolerating behaviour that we would not otherwise accept from that person in different circumstances. We make allowances, we overlook the nasty stuff, we forgive the (sometimes) unforgivable. But all that comes at a cost, to our own wellbeing.
Pointing out to our caree that if we werenāt around to look after them they would have to either: manage / accept outside help / go into a care home; is all very well, but we have to live with the fallout of being brave enough to say that. Sometimes the fear of the fallout outweighs the need to say how we feel, so we bottle it up, for an easier life. A person canāt have external support forced on them either, even if it would be in their best interests. Many people feel literally stuck in their living situation because there is no quick, easy fix.
Most people canāt ājust leaveā however much they might feel they want to. Intertwined lives, homes, finances canāt be undone just like that. Leaving a partner whom one has been close to and looked after for a long time is not an easy decision to take either practically, logically or emotionally.
I speak from personal experience, of having been both a carer to my Mum (now deceased) and my husband of over 3 decades, but now dealing with health issues of my own as well. Living with someone 24/7/365 without a break can take its toll on even the most patient and tolerant of people.
I donāt think there are any easy answers here. Looking online for group/peer support is one option. If one can afford private counselling, that is another outlet which might be helpful. Organisation helplines, specific to the health issue is another possibility. If really in despair, a call or email to Samaritans is another possibility as they are available 24/7 when most other places are shut.
I have tried combinations of all of the above at different times depending on the context and situation, all can be helpful. I would say just reach out to someone. No one can fix or make another personās situation ok, but sometimes just sharing and not feeling so alone with it all, helps.
really sympathize with your situation, I suppose you need some rest
I did everything possible to support the ten people in the family who needed me. When I was very, very Iāll none of them lifted a finger to help me. No get well cards, no flowers, nothing! I wrote to mumās GP, same practice as me, said I could no longer support mum, but her GP just ignored that!! One of the doctors even bully me to look after mum over Christmas! If you donāt stick up for yourself, no one else will.
Has anyone noticed that this thread has had a massive 17,000 views?
HI BB. I hadnāt noticed, but then I was following up on your report!
Dodgy post removed.
There could be many reasons he is being this way, frustration, depression, anger, resentment, fear of the age difference and you leaving, wanting to prove he can still do things, or heās feeling vulnerable and frail and is trying to protect himself by saying such things or is over sensitive - I really couldnāt say but ageing affects some more than others and can manifest in many ways.
Is he picking up on your vibes and then you leaving the room?
Do you reassure him that you are trying to help? do you ask if he can manage to get that or can you reach it for him?
Are you ok with that? How are you doing there? Can you manage with that? Can I help you? Give me a shout if you need me to help.
Thatās how I operate with my mum at times.
They can be determined to do things and donāt like being told they canāt - they have to find out they canāt do it and concede. Their mind wants to but forgets that their body canāt.
You could contact the helpline for leads to ask for advice about this.
Carers UK information and support
Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am ā 6pm or you can contact us by email (advice@carersuk.org)
Short term memory can reduce with age, saw it in my dad and now in my mum, they were 19 years age gap.
Short term memory can be affected by change in circumstances, shock etc eg you going for a procedure could have unbalanced something.
Itās all just things that I have picked up with my parents, elderly relatives and friends parents.
You have my sympathy my husband is 23 years older and I can relate so much to your post. Sadly any love has died as the abuse will break the strongest. He too does not accept I am his āCarerā yet puts me on to deal with GP calls as he is very deaf. I get the ātotal denialā. Do you think they are so used to being the boss that they are terrified to lose even a tiny bit of control.
I do not know your finances but have you thought about leaving? Only you can make that decision and counselling to look at options would be one suggestion.
I donāt have any answers or expertise but it seems to me that he is deflecting his fears onto you, the last part of your reply seems very telling - but that just gets accusations of ME becoming more objectionable and abusive and difficult with age!
Please do contact the helpline and have a look around in Age UK
Just returned to the forum after a long time away. This thread has struck a chord with me. I am now 5 years into caring for my husband (50) who suffered a massive stroke with now long term physical disabilities and severely limited speech. Iām 46 and get 3 hours twice a week to go out by myself but this is not enough now even though at first it seemed a luxury. My husband refuses any additional help, no extra sitting service, no respite care. I managed a night away with a friend in May to watch a theatre show but on returning home his sister who was looking after him had evidently not coped well.
Although Iām not on antidepressants anymore I feel trapped and resentful and either angry, sad or just numb. In the beginning of caring this was not something I felt but now I suppose his recovery is nonexistent and I realise this is going to be it for us for years/decades to come.
I also think that if I did get a two week respite holiday (which is the holy grail for me) I would struggle to return to my ācaring bubbleā having experienced some kind of happiness, joy and freedom.
Sometimes I catch a glimpse of other peopleās lives and am gobsmacked at how different there lives are to ours yet seem just ordinary to them. Especially as pre-stroke we had just a normal family life. This realisation can really shake me to my core.
Wishing everyone on here the best xx
Silver_freemark,
Your lives have changed beyond recognition, no wonder you are struggling with the enormity of it all.
Is your husband still cognitively able?
I think itās time for some difficult conversations about how the stroke has affected both of you. Difficult though it will be someone (you/ a member of your family / family friend /professional) needs to talk with him that if you are in this for the long haul then you need help - help to care for him, help with which ever household jobs you find most effortful, regular breaks and your fortnight off. He needs to know that without this support in place for you - you really canāt carry on caring indefinitely.
Melly1
I agree Melly and thanks for the response. I donāt know who is going to get through to him as we had a social services visit many months ago and unless he gives the go ahead there is very little I can receive in terms of extra help.
He does not recognise that my time is as valuable as his and I believe that it is, (although it took me years to recognise this). I am standing up for myself more and I go out for a walk for an hour on a Saturday and Sunday while he is occupied with some speech therapy tasks and our 17 year old is at home. He resents even this. I do it anyway.
I have asked if he would like to visit a relative and get out and go round to their house for a few hours, but he refuses and he is so stubborn.
I would like to know the experiences of other long term spousal carers just to figure out how to get through this as I donāt want my own health to start to suffer and I already have regular flare ups of sciatica.
Anyway, thank you for reading this xx