I’m sure many of you have experienced a similar dilemma and hopefully will have some advice for me.
My wife had a stroke in May of ’22 and a subsequent unrelated brain bleed in April of ’24. I’ve been her only carer throughout these challenges and as you might expect, the experience has not been easy for either of us.
She’s gone through some serious behavioral changes: anger, denial, paranoia, memory loss-the list goes on and on and there’s no need to elaborate. These are issues over which she has no control and I accept them as such.
My problem is me. As time goes by, my patience is strained and my temper is more easily triggered. This leads to arguments which upset us both and I feel terribly guilty, but the more we are together, the more I find myself reacting badly to her when she flies into a rage or is aggressive and demanding.
We spend virtually all our time together-I manage an occasional trip to the gym and a couple hours each morning before she wakes (she’s a night owl-We’re up until the wee hours every night and she gets upset if I don’t keep her company).
I think I need some help, but don’t know where to seek it and don’t want her to think I’m ‘passing her off’ to others. There are no close friends who can help so I’m pretty much on my own.
@Steve_2208 I can relate to your post. One suggestion is to see if you have a local ‘Support for Carers’? If so they may offer meetings. I accept you may struggle to leave your wife to get to these but another option is a Telephone Befriender. Often they have been Carers themselves.
It does sound as if you desperately need adult company? I wonder if there is any way your wife would accept a carer coming in for a couple of times a week so you could go out?
Believe me it is emotionally draining to be a Carer on call 24/7 so you have every right to get impatient. I have had to make so many compromises as my husband is much older. I do get out as much as I can but only locally and only for an hour and a half or two hours which is mega restricting. I think it is natural to feel some bitterness and regret for the life you have lost? I would urge you to try and work on a social circle and making friends as caring needs tend to increase. So getting help for your wife now might be at least worth progressing?
Steven, you are in such a difficult situation.
You need a third person helping you and your wife, because your mental and physical health is so important.
You need a break!
Have you been offered carers? Carers Assessment?
Is your wife receiving all the benefits she is entitled to?
Has she ever had an NHS Continuing Healthcare assessment?
Many of us have probably experienced this Steve. I know that as the needs of my mum (I’m her sole live-in-carer) it means that the amount I’ve had to help her has increased dramatically. I think the first time I lost my patience with my mum was when she had called me in four times within the space of about five minutes. And this is doing everything I can to minimise this. "Ok mum, have you got everything you need, do you want a coffee etc. She would say “No, I’m not thirsty” and then within one minute would ring me to ask “Can you make me a coffee”.
Are you able to get suport from anyone? Any family members that live close by?
Hope you manage to find a solution. Us carers will always need someone to help us, we all need breaks, you wouldn’t apply for a paid job (or a volunteer job) that didn’t allow breaks. Good luck Steve.
Hi
I use a skill to help me that I have to practice when it is not to hard or too late, so I can get good at it and use it when things are hard,
Discard my idea as an autumn leaf if it feels annoying or impossible,
I struggle with emotion regulation,
So I think to myself- do what works,
Not what’s fair or right, stay away from thinking what’s right and wrong,
Do what is effective, this will be wise and kindest for me in the long run as I need to conserve my energy,
(Dbt skills I have been practicing- lots of info from Marsha Linehan) hope I spelt her name right,
Anyway we are all human so we cannot be perfect
BW Ula
I am afraid when it really gets too much I develop ‘selective deafness’ and go upstairs. I also do thinks such as turn the ringer off the phone as husband went through a stage of entering competitions and giving out my ex directory phone number. So we got inundated with cold calls. He would be on the sofa and call me to answer the phone because he could not or would not get up. I also end up muttering to myself ’ I am NOT drudge or slave to be on call 24.7. But tbh I do not love or even like my husband so it is easier for me to disengage to a degree. What I do find hard though is to ascertain if he really is feeling ill or if he is just saying it to stop me going out or ruining things for me if I do go out. I only see friends for a couple of hours for coffee and I stay local.
I think you both have to accept that you are in very difficult situations with little support or help and be kind to yourself if you do snap or lose your temper. My husband is very deaf which is just as well given what I mutter when he really winds me up.
I can sympathise with you wholeheartedly. It’s really hard not to lose patience and I often find myself flying off the handle. Mum and husband both have vascular dementia I find I don’t lose it with mum at all because she’s always very apologetic and anything I do for her she’s grateful for, however with him indoors it’s like nothing I do is good enough and he will pick pick pick at something even when he’s had a perfectly good explanation as to why something isn’t done the way he wants it, or why I’ve not had time to do something etc.I will eventually lose it which results in a war of words which I feel he instigate on purpose. I find taking myself away to another room is the only way to keep my sanity, if it’s only for 10 mins to have a good cry.
@Tango59 My husband will argue with his own shadow. It is emotionally draining. I work hard on disengaging and like you, remove myself when he really does go on and on.
It’s soul destroying isn’t it… I’ve been busy all day prepping paintwork so that I can crack on when I next get a day off. 3 times he’s come into the kichen where I’m working to ask what time is tea, what’s for tea etc. I’m overwhelmed with jobs I’ve got to do while he sits in front of the TV all day… Doesn’t even make me a cuppa. So I say at this rate I’m going to be in my grave before you and then what are you going to do… Who’s going to make food for you then. His answer… I’ll make it myself I can read instructions on a packet. So OK then why can’t you do it now then and help me more. Because I don’t want to, that’s what your for, it’s your job. Sorry saw red… I’m not your personal slave,I won’t be waiting on you hand and foot… Make it yourself
Now currently in my room seething because yet again he’s pushed my buttons
I’m sort of in the same predicament. Mum is too proud to accept support or help and siblings just don’t give a ****.
I don’t often lose my rag with Mum but I do with the ******** siblings who are still at home. I tend to storm out of the room and go talk to a teddy bear I have there.
It is hard work though. The suggestions on here are really good but I’ve found it very daunting to reach out and I would be petrified to go to a meeting in person. I know they take place in my area because they hold them in the building where I used to work.
I have found the carers trust the most sympathetic so far plus forums like this one are a godsend to give vent to feelings. It might be that I was unlucky but the Admiral nurse I had was next to useless. I thought when I was advised to get in touch with them that they would be really helpful as they are meant to have the best interest of the care giver, that wasn’t the case for me as all she did was tell me how best to help him. For example my husband has an obsession with food… Asking what’s for tea when we are eating breakfast and all through the day he will ask what time is tea, what are you making for tea,literally when he’s just eaten breakfast or lunch
She turns round and says… I should be asking has he had enough to eat and can I make you something else ffs how is that helping me… Thats more bloody work for me as if I haven’t got enough to do.
The man has a food obsession, he gets plenty to eat, he’s gone through 5 family sized tins of biscuits since Xmas day as well as an 8" Xmas cake, 2 boxes of mince pies, and 2 tubs of sweets… No I didn’t buy all that junk food it’s mostly stuff we were given
So for her to tell me to ask him if he wants me to make him more food is ridiculous.
Anyway I digress. You will get a lot more solid advice on here
@Tango59 I was amused when the lady from my local Carers asked how husband would cope if HE wasn’t well enough to cook. He does not cook for himself much but he likes to fry steak in oil and butter. I am a vegetarian and just could not do this. I would microwave ready meals but he would not consider them…But it came through that I was a ‘wicked little drudge’ because I did not cook for him. However in all our marriage we have never eaten together unless out as he wont eat at regular times. I do everything else in the house like the food ordering.
He keeps knocking his inhaler onto the floor under his table but it now stays there. I am NOT going to crawl on the floor to pick it up AGAIN.
I am sorry that the Admiral nurse was so unsympathetic. I was furious with the GP I saw before Xmas for saying he would prescribe sleeping pills but what would happen if husband needed me in the night? One of the major reasons I do not sleep well is his coughing which I feel is due to his non compliance with regard to using the inhaler. But no I am supposed to be available 24/7. I am not disengaging…maybe work on this to? Hard I know but WE matter too and if we are not healthy how can we continue to care? I do not want to frankly after 14 years of it but it is the only way to keep my home and cats safe.
I hear you loud and clear. Sounds like we are in a similar situation. I swear he’s become even more entitled since diagnosis. He does treat me like a slave and will have a hissy fit if he doesn’t get his own way. This sort of behaviour I ignore.
My own health has taken a back seat. I’ve not seen a dentist in 4 years ans a Dr probably 2 years… Luckily I’m a Pharmacy Technician so anything I need I can get in work though there is a lot of self diagnosis going on and even though I know what I’m talking about some things I can’t treat so I’m going to have to make an appointment for myself at some point.
Yeah, I feel like my mum treats me like a slave. When I was young if “I” or my sister or brother would ask for something simple we were always told (usually by our mum). You can do it yourself can’t you, what did your last slave die of? Now it’s even worse, I get called into the sitting room for her to ask me nonsense ie. “When they arrive can you let them in”. Who? I ask. Last time she replied “you know, the woman”. Who, do you mean the carer(s)? No, it was some fictious woman my mum was expecting. Funny, she never turned up.
The mental health nurse told me they have difficulty separating fantasy from reality ie your mum may have dozed off and dreamt that someone was calling or she may have been watching something on TV where someone was awaiting a visitor therefore to her it’s becomes real
That happens an awful lot in our house.
Alan will wake me up sometimes at 6am…swears blind I’ve told him I’m working even if its a day when I never work
Last week he came into my room at just after midnight to ask me if the girls were home from school yet… They are 34 and 37…onbiously dreaming in the past
Dear Steve, i completely understand, my partner had Parkinsons and her constant falling off chairs, odd behaviour because of medication as well as other underlying problems which no one was aware off i had real trouble with patience and anger, i shared and there turned out to be many people in the same boat, the only thing i will add, i lost my partner last August and to this day i still get pangs wishing id been ‘nicer’ overall, feelings cant be helped in our position we can only do the best we can and in the long run it will be a comfort take care and hugs tony
I feel terrible because I get tired then angry, and say horrid things. I know my husband is vulnerable but in my frustration I sometimes think he is taking advantage, acting more poorly to get sympathy. I tell him that is not going to help him stay better, recently diagnosed with Parkinson’s, after having major spinal op, then slight stroke, with no apparent after effects, mobility probs after op, Is his reliance on me so total because he is worried I will not take care of him , which I will always? I worry I may get ill so wonder who will take care of him, he is nervous about people coming in, so I try to make him realise he must do things like cook, etc, but he just sits or sleeps. At my wits end, called 111 for advice but they just say get mental health help for myself from GP, have had CBT about the frustration, but talking doesn’t help. I just want him to do his exercises, and try and help himself, but I do not ever make him so nothing happens. Am I doing things wrong? Suggestion I get carers assessment but that worries him. It’s all so sad, as I love him and don’t want to ge this ratty person.
@Elisemig
You are only human and tiredness makes even a saint ratty in the end.
His need to sleep a lot could be because of the stroke.
It sounds like all that has happened to him means he has lost confidence and for want of a better word - become very needy. This in turn is very draining for you.
It sounds like you need some ‘me’ time each day.
If you haven’t contacted the Parkinson’s association yet, then I recommend you do. They have useful information but most importantly have details of what support is available locally.
Hopefully you’ll find a group/ activity that will interest him and give him something to focus on. This in turn will reduce his reliance on you a bit.
if it feels annoying or impossible,