Support for carer

Hello everyone!
I’d just like a bit of advice from any carers as to what would really be beneficial in terms of assistance.
My mother in law is caring for my father in law, diagnosed 19 years ago and in end stage now. She won’t accept they need more help. He regularly faints/fits, is catheterised and is on pretty much the strongest doses of Stalevo, Madapar, Amytriptiline plus others I don’t know about. I feel helpless in terms of supporting her, she’s a positive and brave person and wears it lightly in public but I know she’s struggling.
If anyone could suggest what could possibly be of most help, I’d be most grateful. We are able to sort the catheter so she is able to go out with her friends on occasion but I don’t think she likes to leave him for too long.
I worry about her so much. (I worry about FiL too, but she looks after him so well, I don’t think people realise the strain on her)

Hi @clayangel174, :wave:t5:

Welcome back to the forum.

Your concerns for your mother in law are completely valid and you’re doing an amazing thing by reaching out for help.

A break from daily routines and responsibilities is important, especially if someone cares full-time because you are retired or don’t work and are with the person they care for 24 hours a day.

Breaks from caring are often called ‘respite care’. This care can vary from a few hours’ break to a longer holiday. The person may want to go away alone, or there may be the chance to go with the person you care for on a holiday where care is provided.

Time off from caring responsibilities can be vital. Respite care can help both you and the person with Parkinson’s. It allows you both to have a break, and perhaps to socialise with other people.

This may be an option for your mother in law and we have a lot more information on this along with other useful information and resources on our website here.

However, if you’d prefer to speak to someone about this in more detail, please give our helpline team a call and one of our advisers will be happy to support you further on this. Give us a call on 0808 800 0303.

Best wishes,

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I am with you. I just made a very similar post about my mum who is 80 and has had Parkinson’s for 19 years. My dad is the main carer at 82 and as you know it is too much. I don’t know what the answer is. It is all a struggle and very difficult to navigate through. I empathise. And we are in the same boat. Albeit a boat that’s not one you would want to be in!

Thank you so much for your reply, Reah. Respite care would be ideal, she absolutely refuses as she thinks no one can look after him as well as her - she is probably right but it’s going to break her. We will have to keep offering help and hoping she starts to trust us to lol after him as she does :slightly_smiling_face:

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Thank you for your reply, it’s good (though heartbreaking) to know it’s not just her that’s over-coping. Sending love to your family, and all who are living with this.

It is a difficult one because your mil obv feels it is solely her role and in doing a wonderful job. As a retired full time carer myself of my husband with Parkinson’s I also have to care for my 93 year old parents who live nearby. The things I think I’d find the most helpful are friends/family coming to spend some time with my husband or having somewhere I could take him for a day where he could participate in something. Neither thing happens. Someone to come clean the house and/or cut the grass would also be helpful. Does your mil have those sorts of help. If your Fil is in late stages she may also benefit from someone staying a couple of times a week to ensure she gets a couple of undisturbed nights of sleep? Without her opening up and confiding in you it will remain difficult.
She is very lucky to have someone caring about her, maybe some periodic flowers would be a nice idea to let her know you’re there for her.
Good luck

Hi @clayangel174, :wave:t5:

You’re welcome and once again, please give us a call if you need someone to talk you through this process. :slightly_smiling_face:

Best wishes,

Hello Clayangel

Yes I have been in the same position as your MIL. I reaching breaking point, where I felt I was disappearing as a person. We now have 24/7 live in care, always subject to annual review, I had period of counselling 10 months privately funded which reflecting back was a life changer for me. My husbands care is very complex, he has dementia and damage from long term delirium whilst in hospital,and there is no way I could go back to full time caring.
It is possible your MIL feels this is what she has to do but maybe she needs to understand that if she breaks then her husbands care will rapidly deteriorate and stress the importance of looking after herself to ensure your FIL continuing good care. Yes, his care at home will be far
superior to to a care home. Contact Carers UK for a carers assessment, they will visit and have a raft of really useful information. Ensure your MIL is registered as a carer at the doctors surgery. If you can encourage your MIL to offload by providing a safe non judgemental attitude/ or maybe she has a close friend she could visit to do this. Ask the PD nurse to visit and discuss CHC funding for more care and generally to discuss care needs. Is it the right time to think about having an advance care plan. It always helps to have a plan when dealing with complex and unpredictable needs.

Your MIL will be struggling underneath the “brave Face”. She is fortunate to have such a caring daughter in law. Well done.

The care system is really struggling at the moment, you will need to fight really hard to get the care your in - laws deserve, as does everybody

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Thank you so much for your reply. I’m finding so many brave and resilient people here. My Mother in law is a coper and will definitely put a brave face on it, alway. She doesn’t confide in her friends as she’s trying to pretend they are a “normal” couple but she will occasionally be honest with me about how he’d she’s finding it. I think counselling is a great idea and I will definitely suggest this to her, and will also investigate Carers UK. She’s adamant she won’t get care for him as he wouldn’t do it for her (he absolutely would) and she feels he wouldn’t be looked after properly, but I’m working on it!

She definitely feels it’s all down to her, and that she’s the only one who can provide for his needs, which is correct to an extent, but I worry for her. We sat with him at the weekend so she could meet an old friend for lunch and a show, she came home refreshed but the next day he had a series of collapses so any benefit she may have had was soon lost. I love surprising her with flowers, she’s always almost in tears which makes me sad that she feels the need to be so grateful!
Thank you for your reply, and love and strength to you