Request for addvice on how carers can maintain their own wellbeing, whilst caring for someone without any help

All about caring
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Hello, I am new here and was wondering if anyone could offer some advice on my situation. I believe the situation I’m in is quite common amongst carers, and I’m wondering if anyone has advice on things they do to help themselves get through the day, and keep their head above water, as it was.

I live with and am the only carer for my elderly father, who has dementia, diabetes and an alcohol problem, I have one sibling but she lives abroad so it’s just me without any outside help. We have hit a wall in terms of getting outside help, as my father still has capacity, and refuses to let anyone apart from me into the house. He’s qualified for a social services assessment but won’t let them in the house.

My father has gotten to the point where he goes wandering, and so I can’t be away from the house for very long. He has also started wandering at night meaning I have to be on alert 24 hours a day, listening out in case he leaves the house. I am also responsible for giving my father all his meals and medication.

I am struggling to cope with needing to be available 24 hours a day with no respite. Over the 7 years I’ve been caring for him, I’ve lost my job, my social life and access to my hobbies, and I’m not sure what I can do to help me cope.
I am wondering if anyone’s been in a similar situation and could suggest the things that help them get through the days, any tips on how to keep going and keep a positive attitude would be so appreciated, thank you in advance.

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Hi @Yasmin3 - firstly a BIG warm hug, and welcome! We know this is your first time posting here on the forum so - YAY! you’re reaching out. THIS is the first big thing you can do for yourself…so BIG hugs and we’re right there alongside you…

Before jumping in with advice - may I ask a few things…
Is there any neighbours, or old friends he has that come around or that he has contact with or you have contact with? It would be good to understand how isolated he’s made himself, and if you have any support at all
Have you had a moment to see if there are local help groups or people for YOU? - there are various possible support groups out there, we don’t know what we don’t know

When you say your Dad has capacity…but then say he goes wandering - I’m interpreting this to mean he has a deluded state of what he’s capable of doing, and his reference points to orient him in the everyday real world are off/not there?? could you correct me about how ‘well’ he functions in daily activities?

Can you share a bit more?
Now you’re here and interacting with us, you may find that this takes a lot of the ‘I’m alone and don’t know what to do’ - Away. The isolation and disconnection are terrible…
May I offer - please DON’T set goals and expectations, you’re doing so much already. Please be kind to yourself and remove any ‘Should’ words from your vocabulary…
‘SEnse of wellbeing’ is SO different for each of us…

I need to do a 15-30min walk-run-walk every day (which I’ve not done for a while & suffering for it now - given I like wine too!) I love to read and write my blog too. For @Chris_22081 his gorgeous Buster will take him on dog walks as his me-time, and @Charlesh47 has photography and @selinakylie has her furbabies-cats…we manage with something somehow…

Please don’t force a positive attitude - sometimes life is only :poop: :poop: :poop: we call it as it is - it’s healthier, and you can vent (best by emojis to avoid getting censored tho :wink: There’s a phrase Toxic positivity… smiling when life is :poop: just means things get bottled up and will undoubtedly explode at some point…

LONG answer - sorry! Just want you to know you’ve made a BIG important step already - we’re a great bunch of people and if you go over to RollCall You’ll see how funny and weird and banter-full we are :wink: https://forum.carersuk.org/t/roll-call-july-2024/125311?u=victoria_1806

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Also - FYI there are devices like this:

that have a ‘Geofence’ you can program an alarm to go off when the person wearing the device has ‘breached’ the limits of the defined area.
There are different products - I got the one that alerts a monitoring team to a possible fall, but there are devices for ‘wanderers’ too.
Not sure if your father would accept to wear it…there are other geo locator options to slip into pockets

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Hello @Victoria_1806, thank you for taking the time to write such a detailed answer and making me feel so welcome here. It’s really helpful to hear about the different things you all do to look after yourselves, and it’s already made me feel less guilty and more hopeful about trying to carve out some time for myself.

To answer your questions, there isn’t anyone to come round and spend time with my father. He doesn’t like social interaction anymore, so he’s quite isolated in terms of having visits from friends and neighbours, he won’t even answer the door if anyone knocks. If he does have to interact with anyone apart from me, he becomes very distressed very quickly.

There is a carers support group that happens once a month, I used to attend this, and I benefited from the in-person setting a lot, but it’s about an hour’s travel each way, which would mean a total of 4 hours away from the house, so now it’s too much time away from the house to leave my dad on his own.

In terms of capacity, we have a visit from a community nurse once a month, who assess my fathers capacity every time she visits, and she says he still has capacity, meaning if social services come to the house, I can’t let them in if my father says no, they have to go by what my father wants, meaning they’ve never been able to come in and do an assessment. I’ve told her about how he behaves with all the wandering, giving her a detailed run-down of what he’s like day to day, and she said even if his capacity is coming and going, as long as he has capacity sometimes, that counts as him still having capacity.

Thank you for the suggestions about a tracker, myself and the nurse have tried talking to my father about wearing one, but he’s adamant he doesn’t need one since he can’t remember that he goes wandering, and got quite angry with us.

This is the a recurring pattern, my father will refuse all help, like wearing a tracker, or having an assessment for his care needs, insisting he doesn’t need any help, but then this means I’m having to do absolutely everything, and do it alone withou any help, whether it’s his day to day care, or going out having to look for him when he’s wandering, which is always scary and stressful for me.

I think that’s why I’m trying to focus on ways to mentally cope with the everyday, and trying to make things more manageable for myself in small ways, as he will refuse anything that could make life more bearable for me.
What you said abour toxic positivity really struck a chord, and I think it’s really important that I don’t bottle things up and pretend they’re fine because it’s making me ill, so I’m so grateful to have found a supportive space where I can be honest.

Sorry for rambling on so much, I hope this all makes sense, and thank you again for taking the time to give me so much advice!

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Ohhh pls don’t ever apologise for rambling @Yasmin3 - this is a safe space to vent and share…plus I go on and on and on…just look at how long my reponse was!

Thanks for sharing more about your situation - there’s a phrase I coined in @Ula 's thread ‘Bumper Stickers’ - a discussion I think you’ll like, …the phrase was ‘caresplaining’ …None of us likes it when someone tries to tell us what we ‘should’ be doing to care for our loved one (or person we feel we have to care for…everyone’s situation is different - no judgment here or expectations!)
SO I always like to ask what YOU already know/have experienced first https://forum.carersuk.org/t/bumper-stickers-for-carers/123563/65?u=victoria_1806
Lots to laugh about …enjoy

Here’s a resource that has helped me reframe a lot of things since I read it: Book
if you explore the website she has lots of free resources…she was the one that helped me understand about emotional agility, avoiding toxic positivity and understanding the more we try to deny our emotions…it’s like that chocolate cake in the fridge…the feeling amplifies…(now I’m hungry again!)

I’m going to think about other support-resources…but I keep thinking about the wandering…I know this sounds a bit underhand but if you’re worried perhaps a tracker sewn into clothes to see via an app on your phone could give you peace of mind: Amazon.co.uk : trackers
(yep I do know someone who did this…no details tho)

THat’s a ton of info…so perhaps best I let you ponder…plus going to sleep now! Some of our nightowls (those who can’t sleep and are up around 3am may follow up soon!) . Sending a big hug. Don’t forget that Carers UK have a helpline and online Cuppas: Care for a Cuppa | Carers UK

take care

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Hello Yasmin, welcome to the forum. I’m dismayed at your situation, and the lack of support. Did you know that you cannot be forced to care? You are daughter, not slave! What would you like to happen now? Presumably you live with dad? Does he own or rent the house? How old are you both? Is he claiming any disability payments so you can claim Carers Allowance? Claiming exemption from Council Tax due to “severe mental impairment”? Your answers will help to find the best solution for you. If he wanders off, that suggests he is still fairly fit? (I’m awake at 1am as I fell asleep before 9pm and have only just woken up! Taking some grim antibiotics and need to stay sat up for a while until they have dissolved, otherwise my stomach struggles!)

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Welcome Yasmin from me.

I can relate so much to the ‘mental capacity’ thing and it being ‘fluid’. My husband is 85 and medically non compliant, but whilst he has ‘capacity’ there is little anyone can do. I can get out for short periods but tbh I am always ‘on edge’. A few months ago he let the pan boil dry whilst trying to cook steak - and set off the fire alarm and the smoke was very very bad. Also he uses a lot of ‘threats’ as in 'give me the phone number where you are in case I need you to come back quickly as I am sure you would want to know if one of the cats was ill or had an ‘accident’. They are indoor cats and I now put them in the bedrooms when I get out.

You CANNOT be on call 24/7 long term. One suggestion is that maybe you contact your local Carers and ask if they have a ‘telephone befriender’. These have often been Carers themselves.

What would happen if you refused to care for your father? Would he be safe to live alone? It seems that SS offer you no support? You have the right to a life too. If your father is becoming a danger to himself with the wandering, then maybe it is time to say ‘enough’ and see if a home is a viable possibility? I realise that if he has ‘capacity’ this will be hard. Could you move out? I realise my comments sound harsh but if I had known back in 2013 when my husband had the acute on chronic brain heamatoma, that he would still be alive in 2024, I would not have had him back from hospital. I have been caring officially since Jan 2013 but unofficially a couple of years longer.

I echo Victoria with regard to Roll Call.

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One thing that worries me frankly is that you say that your father has started to ‘wander’. Surely this means he is becoming a ‘danger to himself’?Therefore I would challenge the ‘mental capacity’? Charles is much more experienced than I am with regard to understanding. But in my experience, the NHS will do almost ANYTHING to say a patient has ‘mental capacity’. My GP actually admitted this when I was worried about my late father, and said it all came down to money and rescources as in if they admitted an elderly patient did not have MC then there was nowhere to put them. This frankly forces family often one person into a caring roll. This also was pre covid which frankly terrifies me. Is it worth phoning the Carers helpline? Has your father been diagnosed with Dementia? If so, which kind? Do YOU want to go on living the life you are living? It is only likely to get worse.

I get counselling is not a viable option? Believe me I do understand as I would really love to explore my feelings with a trained counsellor who has worked with Carers. I know I am asking tough questions but you just cannot be available 24/7. What would happen if you did NOT go and look for your father but go the police involved? I would bet they would expedite an SS assessment and maybe help you challenge the Mental Capacity as it would be taking their valuable rescources to look for a vulnerable adult.

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Hi @Yasmin3 - echoing the welcome from others. I will try to reply properly in a while - just dealing with the usual “morning issues” here, but wanted to say Hi.

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Hi @Yasmin3 How are you feeling today? Did you manage to checkout Roll Call or look at the dates for the "Cuppa’ meetings…
We’re all here for you, whatever you need, we’re here to support you we’ve diverse experiences, and tips so I’m sure you’ll find other ideas that’ll help you…whatever’s most comfortable for you.
Take care
P.S I hope the Bumper stickers comments gave you a giggle :wink:

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Thank you so much for writing much a detailed response, I am currently researching these, I really appreciate you taking the time to write such a detailed post because you’ve offered me so much useful information that I haven’t been able to find anywhere else, I’m so grateful thank you!

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@ bowlingbun I’m sorry you were up so late, I hope you managed to get some sleep, and that your course of antibiotics are going well, thank you so much for taking the time to reply. I think perhaps I put too much information in my original post, at this point I’m resigned to how much caring I have to do, over the past few years I’ve tried to access quite a few different services and benefits etc, we are always told ours is “quite a complex case” and we don’t meet the criteria for various supports. So at the moment I’m so grateful to have found this community where I can get some advice on any little things people do for themselves to keep their spirits up in the midst of caring. I’d love to hear about the things you do that help you enjoy life whilst caring, thank you again for taking the time to reply!

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Carers UK has a really good confidential helpline. I am forever grateful to them for making me £50 a week better off a long time ago, when I needed it most. I had been told a number of times that I did not qualify for Carers Allowance, according to the Carers Allowance Unit. The helpline knew the rules and gave me all the information I needed to make a successful claim! I’m definitely on the mend now, thank goodness for antibiotics, I just need to build up a bit of stamina now. Eldest son has 2 days off, so he’s taken me to Costco this morning to get lots of drinks etc. we own a steam traction engine which is 115 years old. Next weekend he is taking it to the site of a steam rally which he first attended in his pram when just 6 months old. At 4mph, it will take a few hours!

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@selinakylie

Thank you so much for sharing your experiences, they sound very similar to my own in terms of the people we’re caring for, and I think you’ve hit the nail on the head saying it’s not viable to be on call 24/7 in the long term. In a way, this situation has slowly crept up on me, my fathers needs have increased bit by bit and all of a sudden I’ve realised just how bad things are and that I am in fact needed 24 hours a day, and am always, as you said, on edge. I have had the same experiences with the NHS insisting capacity is present no matter how bad things get. A telephone befriender sounds really helpful, especially as I’d be able to speak to them whilst at home, as so many supports need to be attended in-person and so I have to rule them out. Thank you also for being open about how long you’ve been caring, and how things would have been different if you’d known back in 2013, I really appreciate you being vulnerable and sharing that, in order to help me assess my own situation, thank you for your kindness. I am going to look into counselling specifically focused on carers, and also have a think about ways to try and have a social services assessment, as I think you’re right that one of the most important steps is being able to have them assess both my fathers day to day needs and his capacity. Thanks again for writing me such a detailed answer with so much advice.

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@Chris_22081 Hi Chris, it’s nice to (virtually) meet you, thank you for taking the time to send a message and make me feel welcome here.

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@Victoria_1806 Hi Victoria, I’m feeling okay today thank you for asking, I hope you’re doing as well as can be.
The bumper sticker comments did cheer me up, it’s so heartening to see how everyone is holding onto their sense of humour and finding time to be light hearted, this is exactly what I’d like to focus on developing within myself.
Yes thank you I am working my way through all the rescources suggested, in a few short days I’ve been shown more kindness in this community than I have by a lot of the support staff I’ve spoken to in the last few years. So thank you to you and everyone else in the forum!

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Thank you, I will look into the Carers UK helpline, it’s so helpful when people know all the rules, as it’s so difficult trying to navigate services and work out what you qualify for.
I’m glad to hear you’re on the mend and what an amazing thing to own a steam traction engine! How lovely that your son still enjoys attending a fair that he first attended at 6 months old, I love hearing about family traditions, I hope his rally goes well next weekend!

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oh crumbs did you write this or did I ?! your situation describes exactly how things are with my husband and me apart from one thing he cannot wander far as he cannot walk unaided! I just have to let him go along as he wishes reminding him about injections blood glucose tests and now emptying his catheter a new thing! some days are much better than others and I never know what each day will bring just like you I guess ! dementia and type 1 diabetes + a liking for alcohol all contribute to a pretty dire situation you and I and others I expect experience.It sometimes gets to the point when I think I am “losing it” too.Not having any outside action really impacts on one’s self doesn’t it.I am sorry I cannot be more positive and helpful to you but I --Do -send my love to you and wish you some light in this dark situation you are in X

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Hi same here I really struggle to look after my own well being. Just no time no friends other family’s members don’t have a clue. My son whom look after won’t let anyone else help as complex and it’s 24/7 not had a holiday for 5 years. When I’m ill proper I’ll have to put on brave face and keep going. I can totally relate to your post as can all of us xx

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Hi Yasmin - sorry I’ve not replied properly for a while as I promised I would but we’ve had a few ‘issues’!!!

Also Hi to @5jays and @Supernerogirl - welcome all three to the Forum and I hope you’ll find lots of interesting posts and a lot of help too. We all try to support one another and share experiences which can be of help - as you are finding you ar enot alone in your problems…

I won’t repeat what others have said - @Victoria_1806 @bowlingbun @selinakylie have covered many points.

With regard to the tracker - is there any way you can pop one into Dad’s jacket pocket or maybe even sew one into his trousers? I know that’s really sneaky but if it’s for his own good and his safety I think I would consider it.

The one thing that each and every one of us has found is that we never seem to get time to relax and unwind. We are on the go all day and often all night too - alert for noises and calls and problems. That takes its toll very quickly. My sleep pattern is shot to pieces as Graham is up 3 or 4 times a night to the loo - and still we often have major floods in the bed in the mornings. That saps the energy very quickly.

As has been mentioned we have a dog, Buster, who takes me out for walks even when I don’t want to go out (like this morning in the rain). Wow! What a relief that can be - some time for ME walking in the fields or through the village and maybe meeting up with people I know for a short gossip as we both get walked by our dogs!

I linked up with the local Carers Support Service who ran a six week Walk and Talk group - just an hour and a half once a week for six weeks. That was both fun and relaxing as we could all chat about problems (rather like on here but face to face) and it got me out of the house. Easy for me as I can leave G for a couple of hours but not easy for everyone unless you can get a ‘sitter’ (again Carers Support can often help with that volunteer service).

We had both got a referral to a local gym but G had to stop cos of breathing problems and although I continued for a while, when he had other problems I stopped and cant get back into the habit again. It was just two hours away from home again and it DID help.

Our local Carers Support is running a telephone befriending service - again for six weeks - where I get a call from someone matched with my interests etc and we have a chat for an hour about how things are going and how I feel. Nothing heavy just a friendly voice.

On top of that I found about 18 months ago I have a love of writing - I’ve had a story in my head for years and one day sat and started writing. It is not the story I originally envisaged but has taken a life of it’s own and characters have become real as I write more and more. No idea if it will be published but that would be amazing.

Many of our friends fell by the wayside when G had his stroke and couldn’t socialise and even family gave up. We do have just a few good mates who are still there for us but many just cannot see why we couldn’t rush off to the pub or go over for a meal like we used to do. Short-sighted and selfish is how I describe them. Til something happens to them and then they expect people to rally round them!

Have you each had a Carer’s Assessment? As has been said - you cannot be forced to be a Carer - but it does give you some rights to help and the Assessment is the first step. I declined a second in January but I am going to ask for an update soon as things have changed and there are things I DO need help with (oh crumbs I feel like an alcoholic admitting I need help!! - see dark humour comes through!) I really enjoy chatting on Roll Call thread on here where we sometimes get silly, but give and receive amazing support as NO ONE judges anyone else. Why not check it out and when/if you feel comfortable, say “Hi”. https://forum.carersuk.org/t/roll-call-july-2024/125311/126

Not sure if my ramblings will be of help to you, but ask more questions if it helps.

Good luck and hope to read more posts from you soon.

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