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I need help - Carers UK Forum

I need help

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Hi everyone
Sorry if i am doing this all wrong, but i don't know what else to do.
I have 2 elderly parents, who are both ill and live in their own house. They refuse to have 'outsiders' in to help. I work fulltime and live 50 miles away, i want to help, but dont know how i can, i cannot afford to stop working. It breaks my heart everytime i see them.
Thanks
Jo
Dear Jo

Although your parents are both ill, are they mobile? able to get out at all? As you live 50 miles away I am wondering do your parents live where you grew up - if so do you have any friends back home who could be an ally to you by visiting your parents or phoning them then letting you know if there is anything you need to know. Also local knowledge might produce some options you would not be aware of. Although they do not want to have "outsiders" in to help, would they be able to go out, even one day a week, to day care where they would meet others, hear how other people cope, the help that is available. Some organisations eg Salvation Army run luncheon clubs.

Anything that might get them in the company of other folks where they will have conversations and gain information rather than someone telling them they should do this or that.

I'll tell you something Jo, as a 73 year old looking after my hubby, I think it's lovely to see your warm hearted concern for your parents.

Hope you can manage to work something out - and welcome to the forum xx
My parents stubbornly refused help for years too. Finally they admitted it was necessary, dad died two weeks later, before it had been arranged. I would start by having a word with their GP, to see what services they offered to elderly patients. If the GP is good, you could ask for him to make a visit to your parents; or perhaps the Health Visitor or District Nurse. IF they will agree to it, a social worker from Social Services could call and talk to them, see if they could help in any way, but I guess they might not agree to this. If you look at the top of this page there is a "Help and Advice" tab, click here and a brilliant booklet appears, with loads of basic information. Sadly, it may take a major incident before mum and dad accept help. Make sure that you don't make yourself ill, it's OK to say "Mum, I'd like to help but I really can't do it, you need to have someone local to do that". I found saying "No" the hardest thing of all.
JC- YOU need HELP more than your parents for your peace of mind. No one wants to change their way of life especially when they are ill. The problem with the SYSTEM is that either nothing is done or things are attempted that no one wants done! Your parents do not want their lives disrupted by 'outsiders'- very few of us do anyway - I certainly had enough on my plate keeping my wife alive every day-I did not want other people coming in and 'turning my home upside down' on top of everything else. There are people out there who will just visit and some can become good friends with those they help to live in their own homes. By help I mean just be there if that's all that's needed. We don't know what your parents want and need, a friendly chat, shopping or serious health care! You know what they need more than they do I expect. Contact their GP and get advice on local help for them. There are many kinds of services available if you ask the right questions to suit your Mum and Dad. Persuade them gently to accept what they need to keep you from worrying yourself to death every minute of the night and day.
Let us know how you get on what you find out may help others too!
Good heavens my girl - the answer is staring you in the face! It's obvious, isn't it?! What you have to do is give up your job, abandon your life, move into your parents' house and look after them hand and foot non-stop 24x7 until they die in 25 years time......and you surface to find they have eaten your life up....


..........

Seriously though (sorry, I speak a bit as i feel - doing the above would 'solve' my 89 year old MIL's situation completely....at the price of my own life.....)....although it all seems intractable and overwhelming, can you try and isolate just what it is that needs to be done.

You say 'ill', but what exactly is their physical/mental state of health - and what sort of 'care' do they need? Is their illness progressing and will it worsen, and over what time frame (and of course they will continue to age and weaken anyway)

Once you've identified this, then you can proceed on to the 'how to supply that care' question.

Would, for example, it be enough for you just to visit every w/e, staying to restock fridge, give them decent meals, check the house over, etc etc, or do they need daily care?

If daily care, do they need continous care - someone else in the house all the time? Or just 'now and then' during the day?

Are they Ok at night on their own still?

Could they move closer to you, so you can 'pop in and out' daily? Could you move closer instead? (DO NOT MOVE IN EXCEPT AS A VERY LAST RESORT OR MY DIRE PREDICTION ABOVE WILL COME TRUE!!!!) ('Care' is a lobster pot - once you start it, only death will release you...and it might be your own!)

If they don't want 'outsiders' what do they want? Is this just a 'ploy' to come and get you to look after them, or is there more to it than that?

Can you slowly introduce outsiders, initially in medical terms (the nurse is here to check you out Mum/Dad, etc) to let them get used to the idea, before actual carers arrive? Could the carers start out as 'visitors' or 'staff' (eg, 'cleaner'). (This might work if their objection is becuase they don't want to be dependent on others, they don't want to think of themselves as needing care, etc

Could you take a day off work every week, eg, Wed, and spend that day over at your parents' house?

Do you have any other siblings that can share the load (I don't say 'want to' I say 'CAN' - a lot of carers are 'dumped on' by their selfish siblings, who only appear at the funeral and have their hand held out for their legacies!)

Whatever you do, make very careful choices - offer care 'little by little' rather than rushing in on a knee jerk reaction (I am learning this myself!). Yes, you love them, but giving up your life to them is NOT what any child should do. And no parent should expect it of their children.

All the best in tricky times, Jenny

PS - guilt, yes, but remember remember remember, your parents have HAD their lives - you haven't had yours yet! You CANNOT and SHOULD NOT beliving THEIR life.....
Hi
Thanks everyone. Image
My dad is 81, he had a blood clot on his brain 18 months ago, which has left him unstable, unable to drive, slurs his words, he is still sort of active but gets very tired and forgetful (which i think is getting worse). He is no longer the big strapping man he once was. When we go out people think he is drunk. He keeps falling over and hospitalised himself by falling down the stairs 6 months ago. And only on Sunday he had fallen over again, tripped and bashed his nose. My mom is 79 and 6 and half stone nothing. Her health is ok, but she is very frail and forgetful, and thankfully (for everyone) isn't driving anymore. Their house is large and she is a tremendous hoarder Image . So much so, i did take 4 days off to help them a few weeks ago (unpaid) and cleared the kitchen & garage of 60 black bin bags of out of date food out. And this is just the tip of the iceberg. Image

I am their youngest daughter, young being 45! I have an older sister and 2 older brothers, My sister & her partner do go around once a week to help, she lives 10 miles away. But my brothers, esp my eldest brother doesn't want to know, they live 5 and 10 miles away.

It's fustrating, heartbreaking, annoying, maddening, and so very, very sad.

Jo
Hi Joanne,

And a warm welcome to the Forum Image .

Yes, very sad and also very common. I think now is the time for subterfuge. Depends on the relationship with your siblings, is it worth a council of war to see who is going to do what or would it be a waste of time?

In any case, I think you need their GP on your side. The GP will probably not discuss them with you for reasons of patient confidentiality bla bla. However, that does not stop you writing to the GP expressing your concerns and asking if he might invite them for an "over 70s or 80s review" etc etc. Then the GP can be blamed if Social Services are contacted and not you! SS will then do a care assessment (means-tested) and hopefully get them some form of support. Other things to consider are lifelines (to be worn around the neck) if they have a fall, key safes etc.

It may also be worth considering Power of Attorney so that someone has control over their finances if they can be convinced.

It took me forever to get my mum to accept careworkers. I told her eventually that they were there for me, not her. She constantly "sacked" them, claimed they were useless etc etc. Now she has learned to accept them, same thing with the cleaner who I introduced as a "home help". It's not easy but I do think their GP is your first option.

Good luck, Anne
Oh my god! I thought I had it bad... nothing like this. May be that's to come.
Hi Jo and welcome

I just wanted to add a different reply to your situation and let you know that if you do move in with your parents to look after them, it isn't as bad as it seems
My Mum became ill 9 years ago when I was 39, I gave up my job, sold my house and moved in with her. My Mum is bedbound and cannot move or speak although she can still manage a smile which is a Godsend to me. I sit in her bedroom with her everyday all day. I do not go out, have days off or holidays but I am fine and happy. Yes, my life may have been eaten up with caring and people will say that this is no way for me to live, but I really am ok and I wouldn't have it any other way. I also do not have family or carers coming in to help me, it can be done on your own if you want.
I am lucky that I sold my house as this money is what I have lived on over the years so I do not have benefits, but maybe you would qualify for them if you had to leave your job?
My post is not full of advice on what you should do, but I want you to know that if you do move in with your Parents, you will be ok and I hope as happy as I am.
Good luck Jo
And another perspective or two!

From what you say I am unsure if your parents are actually asking you to do more or not. Actually I can't possibly guess at what lies behind this, apart from your genuine concern and worry for them which, like Wifey, I applaud. I don't leap to conclusions. I am sure they are grateful for the visits you give them. So I will talk in general terms ok?

Brace yourself I have not only been up ALL night with a poorly caree and I have been out today lunched well and had two rare glasses of vino! So I am talking from my heart.

They want to be independent yeah? Don't we all want that? It may well be dangerous but it is their choice.

NOBODY has to "care" any more than the level which they are comfortable with. In my opinion there is nothing worse than reluctant caring to the point where bitterness appears. It is common. It is no good for the caree nor the carer.

So listen carefully to Bluebirds comments. Caring can be very rewarding.

Personally, I have given 24 hour caring and nursing care for many years. Similar to That which Bluebird willingly gives(x) but in my case for my husband. Emotionally, physically, or financially..... Only you can make the choice on what you are ABLE to give back to your parents. You may in fact be fulfilling all their expectations. I DONT know. I don't know you or your family.

The next generation. Personally I have it made it clear to my family that should I ever need care, temporary or permanent, I would not want personal care from any of them. Luv em to Kingdom come but I want their lives to be free. Am I stubborn? yeah probably.And proud of it.

EVERY family is UNIQUE. And yes, it's shit (scuse language) watching our loved ones age and become sick. it comes to all of us in due course. The natural order of things Old age seldom comes without deteriorating health.

The older I become the more accepting I am about the realities of life, the circle of life.

I further suggest that your parents understand what I am saying and are perhaps more accepting of it than you yet are, as the "child". All perfectly normal and natural.

I don't know if any of this gives you any comfort or room for thought. I hope it does.

As I said .... Just further perspectives to ponder. X