How do you cope with caring for a parent?

[Caz10]

My poor dad has just been diagnosed with a degenerative illness. He is fairly well just now but could become very poorly and dependent quite quickly, it is very unpredictable. While nothing on the surface has actually changed since his diagnosis, obviously in some sense everything has changed. He lives with my mum, they are both active and independent, unless her health deteriorates she will become his cared when that day comes. Selfishly I just can't get my head round how I will cope with this all- seeing him going downhill, helping my mum etc. I have young children, which gives my dad great joy, so I also worry how I will juggle all the committments and still do the best for everyone. I worry I won't cope with seeing my dad become ill. If you have been in this position, can you offer any words of wisdom?

do you live close to them?

it isn't easy but I guess you know that. I find it harder if I haven't seen them for a while - you notice the deterioration more then.

At some point, and it will take a while, you will come to the conclusion that you are the reliable adult in the family looking after your own dcs and your parents. It's quite a scary realisation but if it makes you feel any better, it is the reality for a hell of a lot of people.

I think one of the hardest things is watching them cope :(. You know you can give yourself a kick up the backside. But watching them know they are deteriorating when there is nothing they can do about it is hard.

You will cope because you will have to. You will draw strength from your mum AND your dad and of course your lovely kids.
Your not in this alone, its your full family, so use each other to talk to, no-one else will know better what you are going through than them because they are going through it right alongside you.
Talk to them x

I may be out of date on this subject and some of the following won't apply, or not yet, but:

check the GP and social services are regularly involved. If he is assessed by SS, and gets in the system, he can get carers and occupational health aids, and physiotherapy, so your mum does not become too exhausted. I'm sure there must be someone on MN who knows the uptodate position. Your mum may not want strangers in the house, but push for it when you see her struggling.

You will need to monitor the situation as much as you can, check the carers are turning up, check that he is fed in hospital, check your mum is sleeping, check she has help with the shopping etc. There is sometimes a prescription delivery service. Maybe order online shopping for her. Food and clothes. Ready meals can be delivered to the door. Sit in with him to give your mum a break. Take them out in the car to get them out of the house. Talk to your mum and find out how she is coping. A third party observant eye (yours) is essential to watch how life could be made easier for them, eg, oil that door, organise shopping etc. Get a battery alarm system/bell so he can call her from his bed when she is downstairs.

St Johns Ambulance used to and may still run courses on moving and handling, first aid, and a carer's support group.

Make time to let him enjoy you and your family. You will regret it forever if you don't and its too late. If he hasn't much time left to be fit, he is a priority for you now. See lots of him now whilst he is still fit and you can remember him as fit. Get out the old family photos and ask him all about his early life, and their courtship, his parents, and all sorts of family history that is only in his head. What about Skype to let him keep involved with the children's lives.

You will have heartbreak. But the more you are able to help them, the better you will cope.

You do what you have to do, a day at a time. My father has been in a care home for 5 years with dementia, and my FIL has also recently gone into a nursing home with dementia. Don't spend too much time worrying about the future, because you don't know what will be happening in 6 months time - just cope with this week and this month, and help your mum to do so. And countrydreamer is right - there is still quite a lot of help out there IME, but nobody tells you about it in a very joined up way - get onto Social Services and see what they can offer you, sooner rather than later, because it all takes a long time to process. Facing up to reality and supporting your mum and dad just by being there will be a big help, I think. It's a horrible position to be in - I hope you all get through it ok.

Thank you all for lovely and practical postings. My initial reaction was what can I do, followed by am I ready for this, so practical and emotional advice very much appreciated. We live very close to them, just 5 mins drive, but tbh have not had a massively close relationship, we are not the type to turn up unnannounced for a cuppa for example. I may be wrong but I think my mum is likely to stick her head in the sand re needing support, I think I will have to broach that one carefully. They tend to keep things from us, still protecting their children I suppose, I just hope they will let us in.

I've been the carer for both my elderly parents for a couple of years now.

I think you have some great advice above, but do also be prepared to be angry and frustrated at times with your parents, your situation and the lack of support you receive.

SingleMan -
have you read and would you recommend
The Selfish Pig's Guide to Caring: How to Cope with the Emotional and Practical Aspects of Caring for Someone by Hugh Marriott

I was given this through the St Johns Ambulance carers support network. I seem to remember that it would be really most useful to the main carer, ie. Caz10s mum. Maybe it's something Caz10 could investigate and bear in mind as a help for her mum, later on when things have become really tough.

its available from amazon. and see also nhs.uk/blogs/carers/archive/2011/03/26/the-selfish-pig-s-guide-to-caring.aspx

Thats quite some title!

No I've not read this; I'll have a look thank you.

Countrydreamer - I've now read the Amazon reviews I see you have a good heart. Thank you

What a title! But I like the look of that, thank you.

At the moment he appears perfectly healthy but I know that will change - at the point where we start to think more support is needed, where is the starting point? GP? Social Services?

Hi - my heart goes out to you, it's a horrible situation to be in. My mum has had dementia for some years and now lives in a care home. She is a widow so had no-one living with her - my sister is local, and I'm 3 hours away, we both have young kids, so it has been very difficult for us as a family. Ultimately a black sense of humour has been essential for us - poss that's a dementia thing as mum comes out with some cracking comments at times - or possibly it's because this is normal life for us now.

You should be able to get support from an NHS/Soc Services carer - we found them brilliant - your parents would pay for this (well we did, not sure if this is a postcode lottery thing) but should be entitled to attendance allowance, which we found covered the cost. The carer was arranged via referral from GP or consultant, afraid I can't remember, but GP is your starting point for help.

See link here re attendance allowance www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Disabledpeople/DG_10018710

Unfortunately only time will tell how your family will cope, but it seems from your posts that you are close and will pull together. Important that you all get time for yourselves as well as time caring for your dad - your mum especially.

Hope you work things out and your dad's illness is managed well [why doesn't mumsnet have a hug emoticon].

What countrydreamer said. I am a carer and even doing the job every day, I couldnt have put it better.

I really wish you well. I am sure you will cope, because you obviously care.

Forgot to add - if there's anything you're concerned about re your dad's care, or level of assistance your mum is getting, or anything else, then (sad but true) "he who shouts loudest" seems to work. Keep hounding, whether it's GP or social services.

I take it from your post that it's a physically degenerative illness? Caring for a parent is all levels of tough, but it can be different levels and types of tough depending on whether it's a physical or mental illness they're suffering.

On a practical note- second everything that countrydreamer said. Would also add-

• Your Dad, as a person with a disability (this is the best way to think of it for the below), or your Mum as his carer will be entitled to some allowances. When we went through it, it was Disability Living Allowance for the individual, and also carer's allowance for the carer. WARNING- things may have changed, and if they don't, it's dependent on age, savings, etc, and the forms were designed by some sadist who'd obviously never had to do it themselves. My mother and I have the equivalent of 8 degrees between us and it took hours and half a bottle of vodka to get through... I'm saying this as the sooner you look into it, the better.
• If it's still in existence, the benefits helpline is excellent for advice.
• When filling in forms, speaking to health professionals, etc remember to think about what your Dad is like on his worse day, and get the help and assistance that's appropriate to that. My Mum-and I know a lot of people are the same- try to minimise the issues (for a whole host of reasons) or think 'well I wasn't too bad last Wednesday' and base their needs on that..which is of no use on the days one/your Dad is really bad.
• Keeping in touch with the GP, whether it's your Dad, Mum or you, is important as they will be your link and gatekeeper.
• You will need to think about the future: I got an enduring power of attorney for my Mum, which has now changed to something slightly different, and may not be applicable if your Mum can is still around. However, the ability for me to be able to leap in and handle all of my Mum's affairs, both legal and financial, saved so much hassle I can't begin to tell you.

On the emotional side...

• Becoming the parent to your parent, at whatever stage and in whatever fashion does turn your world upside down. It's something that you will need to talk through, so let your partner know, or a friend.
• If you are supporting someone, you need support. Don't forget your own needs, and don't feel guilty about them. Neglecting yourself only has bad outcomes in the long run- I can testify.
• Your parents will be both be emotionally up and down, and the best you can do is listen and offer advice if you feel you can. It will be draining.
• Try to be positive with them: do things that you all enjoy. Although you will all get down at points, try to give them things that only you can and that they will appreciate...like time with the grandkids, trips out, just a glass of wine and a laugh...
• CBT may be helpful (and anti-depressants may feature) at some point for any of you. Don't worry about doing what's needed to get you through, and don't bottle up or ignore; hard I know when you have your own life, work and family to deal with.

As you can see, I could go on about this for ages...my experience has been compounded by a total lack of other family, long distances, and a wonderful variety of other crap that landed on me at the same time.

You will manage; don't be afraid to ask for help, for yourself or your Dad; and know that your feelings, level of help needed, etc, will change and you'll have to go with the flow in some respects. Good luck (and congratulations if you've managed this far!)