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

@Yasmin3 & @5jays @Supernerogirl

How are you all doing? I do realise we have thrown rather a lot at you and you need time to ‘process’ and work through what might or might not work for you. It took me several years to take on board that I could NOT care for anyone else unless I took care of myself and this meant getting out albeit for short periods. Yes, it is a compromise and at times I feel dreadfully bitter. But I try to count my blessings, my few loyal but lovely friends, relatively good health, my darling feline family and my ‘family’ on here. Please feel free to lurk on Roll Call and post as and when you feel able to. Reveal as little or as much as you wish. No judgement.

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Hi Yasmin, i feel so sorry for you. please please get as much help as you can. your not a slave. i had two parents many years ago who used to drink. But sadly they have passed away, but you will never stop a drinker. I used to cook for my late Dad, & he was very ungrateful then would put the plate on the floor for our then dog!! Please join in share & learn . Where abouts are you in the uk? I am in surrey. Any way have a good sunday best wishes Amanda

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@5jays Thank you so much for taking the time to reply, I really appreciate hearing from someone dealing with a similar mix of conditions, it’s so difficult isn’t it? I also can’t really do anything except let my father do whatever he decides to do, because he’s so stubborn and will get angry if I try to stop him. You acknowledging how some days you feel like you’re losing it makes me feel less alone, I have carried so much guilt in feeling that. Thank you for your kind words and I hope that things will get better for you too, and that you will be able to access more support and help.

@Supernerogirl I’m so sorry to hear about your situation, it’s so difficult when the person you care for won’t let anyone else help, and the longer you’ve been a carer the harder it is to make new friends or maintain the friendships, I’m in the same boat not having had a holiday in years, I’m sending you love and strength in the hope things will get better for us both xx

@selinakylie Hi Selina, yes it’s been a lot of information, but I am so amazed and grateful for the amount of strangers who have jumped on and written long detailed posts with both kind words and practical support. Honestly, in the years I’ve been caring, I haven’t had this much help and support from a lot of the agencies I’ve been in touch with, so I just can’t believe my luck that I’ve found this forum. It will take me a while to work through the suggestions but I’m so grateful that I have somewhere to come and ask questions. I just hope I can offer advice to others and give the help back.
I’m also looking forward to joining in the more lighthearted parts of the forum for a bit of escapism!

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@18Amanda27h Hi Amanda, thank you for your kind words. It really struck a chord with me when you said ‘you will never stop a drinker’. I’ve blamed myself for so long, for not being able to reduce my father’s drinking, because I know it’s exacerbating all his health conditions, but seeing you write that has been really helpful. He is also very ungrateful for everything I’m doing, he hasn’t acknowledged the efforts I’m making in caring for him, he will complain a lot about everything I do, it feels like I can’t get anything right, whether it’s cooking for him giving him medication, washing,cleaning etc, and that lack of acknowledgment does make it feel much harder day to day. I think you’re right that the best thing I can do is get as much help as I can, I am hoping to get in touch with a local carers centre (I’m in South London) and I will see if they can offer any support.

@Chris_22081 Hi Chris, thank you for your reply, and I really appreciate how much time it must have taken to write such a detailed answer. I am so grateful for the support.
I definitely relate to never being able to relax, being ‘on call’ all day and night, which I feel is affecting my health now.

I think the walk and talk group you suggested sounds right up my street, I think knowing I’d be meeting people in similar situations would be great, and having people to talk to would make a huge difference. When I’ve tried walking on my own recently, all I do is worry about things back at home, and so I don’t manage to enjoy the escapism of being away from the house, so having company sounds like the perfect solution to that.

A telephone befriender also sounds great, as I’d be able to take the call at home, I have found my world has gotten a lot smaller since I stopped being able to attend my in-person support group, so this sounds like a great help, thank you for suggesting this, as well as the walk and talk group.

I can really relate to losing friends after becoming a carer, you described my experiences exactly with friends not being able to understand why you can’t go to the pub or for a meal anymore, I can’t leave my dad because he’s more likely to go wandering in the evenings. Also, so many friends have not understood the seriousness of my situation at all, and see me not meeting them as me not wanting to make an effort. In the end, even though I’m lonely now, I am glad to not have those people in my life anymore.

It’s really helpful to hear about the services you’ve accessed, the walk and talk, I think this is something I am definitely going to look into locally, as I enjoy being outside a lot, it sounds nice to get out of the house while also chatting to people in similar situations, this actually sounds preferable to the more traditional sit-down support groups I’ve attended in the past, so thank you for suggesting it.

I am going to do some research into trackers as this sounds like the best solution, especially sewing into clothes, as my father won’t take anything else with him (like a bag) when he goes wandering. It would give me so much peace of mind to be able to go and directly find him, rather than having to walk up and down local roads hoping for the best.

Thank you for suggesting a Carers assessment, this is something I’m going to request from the GP as it’s been suggested by quite a few of you in the forum, I think that because my situation is changing so quickly and my dad’s needs are increasing all the time, I really need to make an effort to let them know how overwhelmed I am and how caring alone is affecting my mental and physical health.

It’s really heartening to hear you talk about you discovering your love of writing, I’m so glad you’ve found something that you can do for yourself and that you enjoy so much, and it’s my hope that in time I will discover something like this for myself too!

Thank you for all your suggestions and sharing so much with me, it’s comforting to hear from other carers and the suggestions are so valuable coming from people who are living in similar situations to me, thank you again.

Hi again Yasmin.

No problem. My typing speed is good enough that I can ramble and it doesn’t take a lot of time!! I once had to take a typing test for a job and needed minimum 20wpm - as I was at around 120wpm at that time I completed the piece three times in the allotted time (five minutes) and shocked the supervisor. As I am lost in writing stories, the speed is staying up. Anyway enough boasting.

If you search ‘Carers Support Centre’ for your local area, or on local Council website you should find more details. Failing that you GP may well have information and posters (ours does) giving info.

Walk and Talk group is fun and since it was just for six weeks we have all kept in touch and organising our own walks now. Someone even suggested a Christmas meal - on no, please no!!! :rofl: As you say it was nice not to have to explain, but to just be able to voice concerns or ‘talk normally’. We usually have a coffee after the walk and recently just three of us chatted away in a different coffee shop and found the atmosphere better than where we usually stopped and opened up much more. I discovered that one of the others is in a similar situation to me financially and without disclosing too much personal info, we shared experiences. A great help!

When my Dad spent a little time with us in his early 90’s just as dementia was diagnosed, we were lucky he didn’t wander. Our main worry was that he left the front door open and anyone would walk in while he was upstairs - as happened when my S-i-L visited one day and he was playing music and had no idea she was in the house! You can buy small trackers from Amazon as well as a lot of other places. Dad habitually wore a jacket so it would have been easy to conceal one in there without him being aware, and take it out before washing or sending to the cleaners. It would certainly be a comfort for you to know you CAN find him and gently guide him home without him knowing how you found him! It’d be a relief for you. Forgive me saying it, but when I bought a tracker for my last dog, it took a lot of worry about him running off in the fields s I knew exactly where he was within seconds and could even track him if we went out in the dark and see where he had been as well. :grin:

Your GP has a duty to ensure you receive the care and support you need. Have you registered as a Carer with them? If not, may I suggest you do so. It opened up a few extra services for me. Our Carer’s Support Service also has an Emergency Contact Card which means if anything happens to you, Emergency Services can find the card in your purse/wallet and call a number quoting a reference and that alerts people to check on Caree and alert neighbours. That’s FREE and they hold personal information confidentially and only access it in an emergency situation. They have our neighbours details as well as KeySafe code etc.

As an example, I have just written to GP about Graham’s latest continence problems and pointed out he is not sleeping properly and that I never get a full night sleep and I am exhausted. I am hoping he will see that and address the problem for me as well. Great example as if he rings later today I can say ‘Yes, Graham was up around 1am and I didn’t sleep again and got up at 3am…’

Good luck with everything.

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Hello Yasmin
I also care for a parent with dementia and I just wanted to share with you what has helped me, mentally. There is always so much sadness and worry going round and round in my head about Mum that I realised I needed to find a way to cope mentally or I could be overwhelmed. I decided to try meditation. My ability to cope mentally has really been changed by this.
I realise in your situation it may be difficult for you to find a quiet place and time for yourself but if you can, I do recommend this.

I cannot change the sadness and worry but I am now also able to move myself into a peaceful place in my mind for a while and it makes the world of difference.
The most important thing I needed to realise is that I am not blocking her out just allowing other things in.

Regular practice, even if very short helps the brain get used to moving into a different more peaceful place inside. It just feels more familiar with repeated practice. It is not always easy and don’t feel you have failed if it doesn’t work sometimes. That happens to me a lot but remember, it is what it is. You may get a short feeling or glimpse of some peace one time and another time not. Sometimes you may find yourself in a deeply peaceful state even if just for a few minutes. I find that happens more and more now. It can be so refreshing and honestly, for me, it is changing my life, and really helps me to cope.
Even though the worries and sad feelings come back afterwards because the situation is still the same I have proved to myself that there is also a place inside of myself where I can feel peace and I know I can go there.

There are so many of us who feel for you and we all just want to help you feel better. I hope some of what you read from all of us will help you.
All the best

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Hi Amanda, thank you so much for sharing what’s worked for you. Since I feel so stuck in my role as a carer, it makes me hopeful to hear about your experiences with meditation to take you away from things for a while, and how it’s helping you manage caring for a parent with dementia.
I have only given it a quick try in the past and feel I dismissed it too quickly, but as you said, regular practice is what it takes. The idea of being able to move my mind into a more peaceful place sounds like exactly the escapism I am hoping to find within the confines of my situation. Thank you again for taking the time to write this for me, I feel so supported by yourself and everyone in the forum who’s left me advice, that in itself is lifting me out of a dark place.

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Hi Chris, even with your exceptional typing speed, I am still grateful for your messages to me! Thank you for telling me about your personal experiences of the walk and talk group and using a tracker, hearing about people’s first-hand experiences makes all these things feel less daunting to me, and makes me more likely to be able to try them, so I truly appreciate it. I am going to have a look for a local carers centre, as well as making sure the GP is aware of the extent of my caring responsibilities, and these will hopefully open up new avenues to me. Your situation sounds so difficult, I hope your GP can refer you for some practical help and that you can access more support. Thank you again for sharing so many anecdotes and helpful solutions.