Feeling lost

Hello,

I am completely lost as to what to do and feel I have hit a brick wall.

My Mum had a stroke 3 months ago, luckily she wasn’t affected physically but her cognition isn’t great. She has been living with my since she was discharged and I’m finding it tough caring for her, being a wife, looking after my children and holding down a full time job.

She has other problems besides the stroke affects, which means she is on alot of medication. I am trying to make her more independent but there have been a few times now where she has either forgotten to take the meds or taken too many.

She does no exercise (due to shortness of breath) and when I explain that she needs to help herself she thinks I’m nagging. She often goes to bed and says she doesn’t feel well. I am now struggling to get her to eat. I can make her a sandwich ready for her lunch but I’m exhausted now trying to micromanage everything. If I make her something she will eat, if I don’t she will go without. She is now 6st 8.

She doesn’t want a carer, she doesn’t want to go into a care home she just wants to be with me but I’m really struggling to manage. I have to take time off of work to take her to various hospital appointments and my marriage is now suffering.

Is there any advice or someone I can contact to get help. She doesn’t seem to understand the effect it is having on me, I have told her but she just forgets. When I tell her she needs to help herself and there is only so much I can do she just says she doesn’t need my help but she clearly does. She has become very reliant on me and I’m now breaking. All she does is sot infront of the tv all day or goes up to bed. :frowning:

Oh dear @Kimlouise you really do need some help, it’s a huge responsibility for you to shoulder all alone.

You may have to arrange a carer to come in to help look after your mum even though she says she doesn’t want one. Speak to your local authority to have a needs and financial assessment undertaken to start the ball rolling.

Do you have an health EPA for your mum, if yes you will be able to make health decisions for her, if not a social worker from your local authority/council will be able to assess her needs and the financial assessment will let you know how much your mum will have to contribute for the care.

I wish you all the best, stay strong and don’t forget to take care of yourself too.

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@Kimlouise hi I’m so sorry for all this stressful time for you. You seen to be shouldering everything. Do you have any siblings that can take your mum so you can have a break? As @Mahoney says there is support and carers you should be able to have. It will be hard to get your mum to understand after a stroke I think our thoughts spiral. But it also sounds like a bit of forgetfulness has she been checked over recently? I hope you manage to get help so you can rebuild your own life. Sending you best wishes and hope regards, Loraine

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Thank you. It’s so difficult, I’m a teacher so getting time off to make these phonecalls is difficult as by the time I’ve finished they have closed.

I did email but I got no response. She definitely needs care during the day while I’m working.

She hasn’t been seen no. A Dr emailed a questionnaire to me and just said “Do this with her” Her OT did an assessment when she first came home and she was borderline.

It’s the non willing on her part. She has no sense of wanting to help herself and its down to her breathlessness. A nurse has seen her about it and has said she has to exercise. Mum says what she thinks they want to hear but then to me it’s a different story. I’m nagging, I have no idea what it’s like…etc etc.

@Kimlouise I totally understand I’ve had to quit my job in school as the noise is to much for me. Do you have anyone in your family to take her for a week till you can get organised and a breather? Or a rest-spite ? Sorry I feel useless as I just have to look after myself and my husband. Lots of luck Loraine

@Kimlouise so sorry you are going through so much. It is really difficult when they don’t want you to get them the help they need. You need to get an assessment for your mum & carers are probably the way to go and you may have to take that decision out of her hands. Have you thought about speaking to the Stroke Association to see if they can offer any pearls of wisdom to help you through. Some respite care for your mum may be a good place to start. Hope you find some help soon. Best wishes xx

My brother helps at times but he works on a cruise ship and is due to go back at the beginning of April. He works long hours and it was me who offered to look after her but I just thought she would have improved by now. She doesn’t want anyone looking after her. She was such an independent woman. Her stroke was cause by a routine procedure done on the heart so this was all out of the blue.

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Thank you. I will give the Stroke association a call.

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Hi @Kimlouise , just wanted to say that 3 months is still very early days for your Mum. The brain is trying to work out what the hell has just happened, and figuring out new ways of doing things. Memory and cognition issues are very common…and very frustrating to cope with for both the person who has had the stroke, and those who suddenly (more or less overnight) find themselves in the role of carer.

A lot of your situation seems very similar to ours. We are almost two years down the line now since Mum’s stroke, and I can say it does get easier…to a degree. Both my Sister and I live with Mum and are here 24/7, providing all personal care and everything else that she needs. We find it really hard, so I can’t imagine what it must be like for you to be juggling everything else as well.

You must, must, must look after yourself. Seek help from your GP or contact Carers UK to see what advice they can offer. Don’t forget that you also need time to get over the shock of what’s happened yourself. Such a sudden and traumatic life change takes a while to come to terms with, it’s almost like a grieving process which has to be worked through. But there seems no time to work through it when you are being pulled in so many different directions - and just trying to keep your head above water.

Do you have a family member or close friend you could talk to ? I know this doesn’t do anything on a practical level - but it may help to just get things off your chest with someone that you trust.

Just know that you are not alone, and you are doing a fantastic job - even if it doesn’t feel that way sometimes !!

Best Wishes
Karen

Thank you. It’s just one thing after another. One minute I’m dealing with one thing and then something else crops up. She suffers with COPD and is having a flare up so now we have gone back to not eating again. She complains she feels weak but then tells me she hasn’t eaten.

I just can’t deal with the arguments and the juggling of everything anymore. I’m so tired.

Thinking of you :blush: you doing a brilliant job even though it’s very difficult for you take care of yourself also :blush:

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Hi @Kimlouise , it’s such a hard situation to deal with, and it sounds like you really need to get some help from Social Services or a care agency so that you can have a break.

I understand what it’s like with the eating situation, as our Mum’s appetite is very poor and we more or less have to beg her to eat and drink water. When she came out of hospital she was prescribed Fortisip Compact Protein drinks, and this helps to fill the nutritional gaps, so that she maintains weight. Perhaps this, or some other meal replacement drink is something her GP could look into ?

Also - has the stroke affected her swallow function, or her teeth or gums at all, as it could be this that is causing a reluctance to eat ? Maybe try soft foods or some soup in a flask if she is able to manage that physically.

Have you had any help from the Community Discharge / Rehab Service at all, as surely they should still be providing advice and support ? They, or your Mum’s GP may be able to arrange some counselling for her - which could assist her in coming to terms with the fact that she does need help - but that she also needs to help you to help her, if that makes sense.

It’s taken me nearly two years to get to the point where I realise I can’t do everything. You have one pair of hands and can only do one thing at a time - so if that means a few things have to slip through the cracks then so be it. Prioritise the important things - and one of those is your own welfare, so try and find just the smallest amount of time each day to centre yourself and switch off. I know this is easier said than done but it’s vital if you are to remain able to cope.

I wish I could offer more practical advice, and hope that things improve for you all.

Take care, Karen

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Thank you for your reply. Her swallow function is fine. She just doesn’t have an appetite. She is on Ensures and a dietician has prescribed something else but we have heard nothing about it. I tell her to eat little and often.

I have phoned adult social services and will ring social services for an assessment.

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