People not "getting the carers role"

Why do you not next time this woman says "Oh I forgot" not tell her how hurtful her forgetfulness is?

People do not get the carer's situation, nor will they, as long as those of us who are the carer don't tell them exactly what it entails, and that it is hard enough and emotionally very taxing without so-called friends refusing to acknowledge the situation we are in for what it is.

62Granny

My DH had stroke 9 years ago his disability is getting worse as he gets older, he isn't independently mobile any more. I have a group of friends who I meet regularly usually for coffee but occasionally lunch. One of the group just doesn't get that I am unable to meet up for long periods 2.5 to 3 hours maximum that includes my travel time. She constantly suggests days out or sometimes weekends away, or that we go places that would take longer than this . Every time I say that doesn't work for me but please go and enjoy I get a pathetic look and "oh I forgot" . Not sure what I can say , except smile and his I don't think she will change.

I understand, I’m the same, my husband had 3 strokes 4.5 years ago and can no longer walk and had to be hoisted. I can leave him for 2.5 - 3 hours, but feel uncomfortable leaving him longer. What I find people don’t understand is how hard it is, it’s not just the physical work of all the jobs involved in just a rung for him, it’s the mental strain of doing my life, his life (he can’t do anything himself now I even have to feed him) the dogs life and everything g to do with the running of the house. The sheer volume of admin sometimes is a lot!

Sending empathy and hugs.

I’m in this situation and don’t go out for more than 2 hours. I have installed a ‘nanny cam’ in the lounge where my husband sits and I can check it on my phone to make sure he hasn’t fallen. It has helped my anxiety about being out.

An awful lot of people don't understand what it's like to act as carer to someone with a brain injury (from accident, stroke or some other cause). I think it's partly because they're coming to it from the perspective of someone who thinks socialising (or not) is wholly a matter of choice. Sometimes I find it irritating, mostly I shrug and think, it's the life I have now and at least he's still in it. It's just him & me against the world sometimes, and I know that many carers on this site will know exactly what I mean.
Just as you can't describe childbirth accurately to someone who hasn't been through it, so you can't make someone "get" just how reduced your life can become - through no fault of your own - when you're responsible for everything you both do.

Speclalk, I would love to know where you got your nanny cam from. Getting one might enable me to go out by myself for a couple of hours (currently, we're joined at the hip - if he can't go out, I can't). I've tried him with several "simple" phones but his memory facility is too damaged to cope with it.

CarrotTop

Speclalk, I would love to know where you got your nanny cam from. Getting one might enable me to go out by myself for a couple of hours (currently, we're joined at the hip - if he can't go out, I can't). I've tried him with several "simple" phones but his memory facility is too damaged to cope with it.

I am in the same boat, a nanny cam would be good but don’t know how they work. My DH also has memory problems and so can’t use his phone unless someone is with him.

Reading this thread as someone building a company in this space has been grounding. What strikes me is how much of caring is invisible vigilance: noticing the small changes, carrying the worry between visits. My team talks a lot about how any help we design has to be acceptable to the person receiving it, or it just becomes another burden on the carer. Thanks for sharing so honestly here.

62Granny Your situation is similar to mine. I have loads of friends who stay in touch which is good but they think I can just drop my caring role at the drop of a hat to do something with them but I can’t! When we do manage to get together all I hear about is holidays, cruises, days out etc. We can’t even manage a walk on the beach now with a wheelchair.

Ì feel so sorry for my husband who cannot do much for himself at all but I also feel sorry for myself and both of us as a couple.

I managed 2 hours out on my own yesterday to return/exchange some clothes but the whole time I was worrying about how he was. I just never relax.

Last week I was not well at all as I had a tooth extracted and ended up with a painful dry socket. I also had a heavy cold and felt awful. Under normal circumstances I would have gone to bed and rested but now I can’t even do that. Caring for someone with such extensive needs is full on!

I have lost count of how many times I have heard “you need to look after yourself too” but no suggestions of how I manage that!

Gingster

My Dh had a stroke 18 months ago and his mobility is very bad.
I worry if I go out that he falls. He has a phone and an alarm bracelet so all things are covered.
Now and then I go out for the day, coach trip or Into london.
I have a lot of support with family/friends willing to pop in and sit with him, but he makes such a fuss and sends people away.,

I’ve explained to him that if nobody comes in, I can’t go out as I would worry the whole time.

That is great for you that you have your family to support you.

Technically once a partner becomes housebound, the other half becomes housebound too if they have no support.
I helped my mum with my dad a few times a week staying overnight to get up in the night with him. Also staying in with him on a Saturday so she could get out for the day. I couldn’t be there all the time as I have my own life.
You could get on to the social services, they do a pre-loaded card (think they will check your finances). That would pay for a respite, or spread it out & get your partner one days respite so that you can have day to yourself.

I am a full time carer to my husband who has Parkinson's and Lewy Body Dementia. Six years of all of our retirement so far. Life has ended, in effect, for us both. He can do nothing for himself, is doubly incontinent, and cannot be left alone for five minutes, as he is still reasonably mobile. He won't go out, in part because he gets exhausted extremely quickly and also because he is apathetic (Parkinson's symptom). I get very frustrated that unless you are a carer, you cannot possibly understand. People close to me, who do often seem to understand, then say things like 'when things get hard, go to your craft room and shut the door on him'! Of course I can't!! I dread to think what I'd open the door to - it takes seconds for him to smash glass and then walk bare-footed through it, to pooh on the floor because he doesn't understand he needs to keep his pad on, to leave the taps running on full and flood the bathroom. Etc etc, endlessly! As for respite, it is so easy for those who have no clue, to suggest respite. Do they know just how expensive respite is? And how incredibly difficult it is to get free respite? Nearly £2000 a week in a care home, or £40 an hour for care in the home. Even if you have some savings, those are gone in the blink of an eye! And once gone, it's almost impossible to get any respite through the council. I'm lucky I get six hours, once a week at a day centre for him, only having to pay for the transport and a cooked meal (how many people couldn't even afford that?), but even that depends on where you live, so most wouldn't even get that! And as for people who say thoughtless things like 'How is he?', rather than also 'And how are you?', or, if you dare to moan about anything at all 'Don't be mean, it's him with the dementia'! No, it isn't! When caring for someone, it's both of you suffering, in fact my husband often hasn't a clue due to his lack of memory and understanding, and he's happy to just sit in front of the TV all day, sleeping whenever he wants - and before anyone criticises me for saying that, he has told me that, and always was one for napping and watching TV even before - therefore, in many ways, I am suffering more than him. And unless you are a carer, you will never understand that! I am not saying it hasn't been hard for him, or sad, of course it has, and I stay because I love him and will care for him as long as I possibly can, but we're all different and cope with things differently, but now my retirement is gone, made worse only by people who feel entitled to make nasty or unkind comments if they feel I'm not coping as well as they're sure they would if they were a full-time carer! And as for going out for a day - if I want to continue to go to my WI meetings once a month, it costs me 3 hours, including travelling time, for dom care, and I can no longer go to WI day trips, or over to visit my children and grandchildren on the other side of the city even with him going to the Day Centre I cannot do these things, day trips always being longer than that, and also, I have to use public transport, which is poor and unreliable. So, sorry if I offend anyone, but think carefully before you make comments that don't help 62Granny, and sometimes can only make her feel worse. I'm sure she has thought of everything , including respite, as have I, but for numerous reasons, these 'ideas' just don't work. Sorry, 62Granny, I have no suggestions, as even saying something to her to spell it out, doesn't necessarily make them understand. I wish you all the best and hope you manage to stay strong.

If you feel up to it, I have found inviting one of the disbelievers to have coffee at your house is worth while. That way it is actually good if your husband is having a bad day, when they can actually see what being a carer full time involves. How you can never finish a job you are doing, if needed to do something for them etc. How tiring and exhausting it is just getting through the basic days tasks never mind attempting something extra. If you think it is safe to do, then you could also ask them to stay and look after the person whilst you just go for some milk or stamps from a local shop, and then they will begin to understand , not just the physical requirements, but the more exhausting mental ones, where for everything you do, you have had to think ahead and how your loved one will be whilst you do whatever job is necessary. There is not even much respite by going to a shop, as you are still constantly thinking if they are ok and the need to get back asap.

A possible thing you might consider, is if the problems are just physical, and they are able to play cards or chess or whatever, that you might be able to organise a game for them, with the doubters. That way it is an enjoyable experience for your partner, and even if it allows you to disappear upstairs for ten minutes lie down on the bed, or the pleasure of a shower or bath taken without the anxiety of worrying if they are ok, as there will be other people there, or even a trip to the library to choose something for yourself. Then there might be a possiblity of expanding that into a regular say once a month game of whist or whatever, where you could actually know in advance that you have that little space to g o to the hairdressers in peace or something. At the very least, it might let these thoughtless people have some inclination of your day to day life and perhaps make some effort to improve things for you, not remind you of what you can no longer do!! When my husband was alive, as he got worse physically, we had to arrange to meet at a cafe or back at the car, because to walk as slowly as he did, really made my back hurt even more than usual, and I didnt want him to try to walk at a faster pace than was comfortable, yet still had people asking why we didnt go round together, despite explaining the reasons!! You can only live your life the best way you can manage. I am the slow poke now, with my back problems and get very annoyed at my snail like progress in the market, but oh how I wish I could have just one more day with my husband and I competing for slowest mover in the market!! I did once show a group of people what it was like tobe involved as a carer. We got this group together and I then took the role of the person needing care, and sat in a chair and each person then took turns being the carer. For each one I was able to promise them that everything that I was doing had actually happened in real life. I quite enjoyed myself. So would wait until they had sat down and then ask for a drink. As they brought the drink I would drop the pack of cards all over the floor, and ask them to pick them up. As they slowly got up with the now restored pack, I would say it is time for my tablets, then as they came back from the kitchen ask them to go and get a specific cardigan from the bedroom as I was feeling cold, and no I didnt want the one that was available.The minute they arrived back down I would send them back up to get my magnifiying glasses etc etc. Five minutes of this, with me being pleasant but constantly demanding was enough to give them insight into the day of a carer. Then with another person I would go through similar, but explain to them that I was having a bad day, with a lot of pain and even less mobility than usual. I would be stroppy and get annoyed at the wrong item being brought or change my mind the minute they arrived with whatever I had asked for. These practical demonstrations do far more than just telling people, they actually get a taste of your day, and the fact that in the morning you have no idea what kind of a day you are going to have!!That mental effort to be ready for whatever the day throws at you, is the most tiring of all. Then of course you could also show how someone with dementia might be, so constantly asking the same question, or wondering where their mother is, although you have explained that she died many years ago. Letting people see that you desperately need that little time to yourself to enable you to continue caring. Those people who have just been thoughtless but genuinely want to help, may then have some insight into your world, and even if they offered to collect shopping or prescriptions for you, or better still could offer that card game or making a jigsaw with the person for half an hour would be the best help you could want. It also means that the person you care for gets used to another person being there on occasion, as there is always that worry that you might have an accident or become ill and have to leave them with someone else. Having someone they know available is a great help too.

Oh Cornflowerblue ... I was in similar situation as late OH had PD.

I wonder if your description of your situation might usefully be sent to Andy Burnham who has care in his sights.

Thank you both madeleine45 and Luckygirl3 for your support and understanding. I notice both of you have been carers, hence the understanding!
madeleine45 Those suggestions are brilliant, and may help many others. Unfortunately, one of the many symptoms of Parkinson's is that despite the fact that he struggles with his speech (very slow, quiet and mumbly), and he can't process his thoughts to keep up with conversation, and he may nod off in the middle anyway, and he often doesn't understand the basics of the conversation, it's quite amazing (and this is quite common, I understand, with Parkinson's!) that when we have visitors, he is 'on his best behaviour'!! He makes such an effort to talk and to try to keep up with conversation, tries the best he can to appear 'normal' , that people, I'm sure, think I'm exaggerating. Afterwards, he is so exhausted, he is worse than ever. Parkinson's, and I'm sure many diseases like this, means he has absolutely dreadful days, and a few not so dreadful days - I won't say good and bad as 'good' days are extremely rare. And of course, the other difficulty for carers is that it is often very lonely, no one to have any real conversation with, stuck in the house almost the entire time, and many of us don't have many friends, at least not ones that you can rely on in any small way. I have one very good friend, who has now found herself in very much the same position as me - and we're both quite 'young'! Everyone should remember, this could happen to any one of you at any time. Granny62 - I hope some of madeleine45s suggestions might be able to help you.

Cornflower describes what life with my late DH was like in a way which has reduced me to rare tears. Not only was life absolutely exhausting, it was incredibly lonely as the person who had been my support and the love of my life disappeared. No suggestions but lots of empathy.

It is indeed lonely and very hard to describe to those who have not been there. There is a danger of becoming isolated and losing sight of what normal is, as your own "normal" has become so distorted.
This is why it is so important to ringfence some time away from the person you are caring for ... I know this is not easy and can be financially challenging, but it is vital.
I absolutely identify with the scenario where the spouse makes a superhuman effort to seem normal in company and you both pay the price afterwards.
My OH's most florid paranoia only became truly apparent to outsiders in his last months .... prior to that were years of me dealing with this on my own behind the scenes.
To all carers out there .... please find a means of retaining some normality for yourself.

CornFlowerBlue
Your story brought both me and MrP to tears.
We are so sad and angry in equal measures on your behalf.
If you live in the Southend area, send me a PM.

Luckygirl3

petra Thank you. I'm way over from the other side of London, but thank you.

CornFlowerBlue and 62Granny I have been in your position and recognise how indescribably bleak it can be.

My DH died last year.

It used to amaze me that the majority of friends and relatives would visit and expect to be fed and watered so it was not at all a relaxing experience for me. There was just one set of old friends who would bring a meal and make me sit down and be cared for.

I am not sure there is a clear answer to dealing with the sort of help that carers themselves need.

CornflowerBlue every word you say resonates with me.
Yesterday I needed to go out to the supermarket. I was up at 7.15, sorted out the medication, made tea and toast. Got the bathroom ready for his wash. He went to go to the toilet but was too late so diarrhoea everywhere. Stripped the bed and his pants and washed excess off before putting in w/machine. Fetched clean bedding and clothes. Emptied and reloaded dishwasher. Remade bed. Got myself dressed while he was washing and doing teeth which takes forever. Got him settled in wheelchair. Put TV remote and cold drink within reach. Put TV on. Hung washing out. Got myself washed etc. it was 11 o clock before I got out! Left him in the care of my son who was waiting to go out himself. Drove to supermarket, got shopping, went to garden centre and bought top soil and grass seed for virtually dead lawn. Came home made quick lunch and spent all afternoon doing lawn.

What I miss is just nipping out when I want to. I miss proper conversations as his speech is very poor and his hearing is affected so I have to repeat everything. Like you, I feel our retirement is over. I badly need a break but that isn’t going to happen. I don’t think I could cope taking him abroad in a wheelchair with all the pushing about etc and it wouldn’t be a rest for me. We spend as much time as we can outside in this great weather but I can see a long winter ahead.

We’ve had two breaks in this country in easy access caravans which were quite nice but hard work. I need sun, peace and quiet and somebody else handing me food and drink and no driving about. This is not the life I ever imagined.😥
I have bought a stack of large piece jigsaws for us to do in the winter and I plan to try to get him trying water colours with his good hand (the wrong one) and we also do some baking together. I have to bully him into doing any physio now between private physio visits at £110 an hour. There is precious little help available for Stroke sufferers especially those really badly affected and not many people realise this.

Primrose53 You're so right! Not only is there precious little help, so long as there's a wife/husband/daughter etc. to put upon, they will, and take advantage of the feelings of guilt the carer feels when saying they're struggling to cope.... only to be told we're doing fine!!!. To be fair, I'm luckier than many, in that we can afford the occasional couple of nights respite for me to have a break, but even then, there's the fact he doesn't want to go into respite (or the day centre) and 'punishes' me for it afterwards by being selfish and cantankerous and sulking, to the point that within an hour of returning, I don't feel I've had a break! He won't go on even the simplest holiday, and to be fair, I'm not sure I want him to any more as it would be so difficult. He thinks any activity (exercise, crafts, jigsaws, whatever), is a complete waste of his time, yet will spend an hour at a time emptying all the wardrobes and drawers into a heap in the middle of the floor, including the dirty washing, and often put some of it (and sometimes my personal items too) into the dustbin (and swears it wasn't him!!). Like you, I miss conversations and I'm sick of repeating things a million times a day, and sick of searching for where he's 'hidden' the dinner plates this time, and wondering where the pong is coming from, only to find he's removed his dirty pad and put it behind the wardrobe!!! And it's not just care that costs a bomb - I've had to replace so much stuff that he's broken, lost or binned for no reason, and we now have to pay for any DIY, gardening etc round the house, as I just no longer have the time or energy for it, and taxis for any appointments due to neither of us driving, and it all adds up. So I do get angry when people say something like 'why don't you look into respite' or something, like 'dur, I never thought of that'!!! Like money is no object. And although we have a little savings, we have no idea how long they need to last (and they won't!). Sorry, I'm venting, but then that's another problem, isn't it - people who don't get it, don't allow you to vent - sometimes, it's just an ear from someone who cares and doesn't judge, but all too often, all you get is either criticism or avoidance. I only hope those people never find themselves in the same position.
Anyway, I feel for you Primrose53 and all those like us. It's not much of a life. Hugs xx

Primrose53: Ì feel so sorry for my husband who cannot do much for himself at all but I also feel sorry for myself and both of us as a couple.

This brought a lump to my throat, just the sheer truth of it. A long time ago, a year or so after my son died, I realised that my grief was outstaying its welcome with other people. That's fair enough - nobody likes a whinger, so I changed my tune and kept my unhappiness inside. A lovely lady, who had lost much more than any other person I know (a Holocaust survivor) gave me a tip on how to manage disaster without disturbing other people with it. "Just imagine a woman nearby who is you when they told you he was gone. In your mind, go over to her and put your arm around her shoulders. It can give you just a tiny little crumb of comfort for yourself in a comfortless world."
It does work for me, mostly. Maybe it could work for you.

Thank you CornflowerBlue and CarrotTop.

I am pinning my hopes on winning the Lottery! 🤣 I will buy a massive bungalow where all areas can be accessed by my husband in his wheelchair including the garden which will have raised beds and an indoor swimming pool.

I will employ a full time physio, Speech Therapist and PA so I can get some time to myself to go out or just do what I want to. Oh and I will get a large fully accessible people carrier so we can go out together in comfort.

Have I missed anything? 😉 Fingers crossed 🤞

All I can say is that if you lose all of your activities and contacts through your situation, you will be isolated when he is gone, so you need something small.
(I watched an aunt spend all her waking moments (getting very little sleep) entertaining uncle. In some respects his last weeks in hospital were a blessing because they made her go home at night, and she helped out a bit on the ward, so they sent her to the social care team when he passed who helped her reconnect)

My advice is that you make sure that you attend to your own health and well being too.
(My good friend was tied to the house by her DH when he became ill and would scream if she so much as went outside the door and he could not hear her. Her niece forced her to the doctor, who sent her for a scan, and he was forced to take respite care while she went into hospital herself, but it was too late - the cancer had spread)
I would advise also that you be very assertive with care professionals who are only too quick to provide care of the palliative kind, but speech therapy active physio and mobility assistance are not often offered. (A big difference between my brother who received this because he lived alone, and my friend who is married is that one is independent, with cleaners and shopping deliveries (and me to do his paperwork), and the other is bedridden and now too big to get himself out of bed without help - they have now moved him into the open lounge with a commode and effectively given up on his recovery)