A Carer's frustration

Over several years, I have become increasingly more heavily involved in caring for an elderly relative of my ex ( ex is blind so still running around after him too...) The gentleman still smokes, has been hospitalised twice for exacerbation of COPD but stable for over a year but is now not going up to bed, not going outside (except to smoke), never going to the kitchen to get a drink, neglects hygiene and changing clothes.

This all sounds like I am the worst carer ever BUT he never uses his oxygen, saying "Well I've been told it doesn't help bring my breathing rate down, so I sort of forget...." He doesn't use his nebulizer or Spiriva inhaler either, only Fostair and Ventolin.

Every day I am practically begging him to let me help him get washed and changed, to use his oxygen and to keep moving regularly but he brushes me off. He says he is ok in himself, not depressed but it distresses me terribly he just sits in his chair day and night, watching rubbish TV.

He is very thin and would barely eat if I didn't provide all his food and drink and encourage him to have at least one booster milkshake a day.

I know these lung conditions can be debilitating and being breathless can be frightening but I feel he just won't try to do things he really is capable of ....while he still can.

I have spoken to nurses when they visit - the last time, she smiled and said "Well just keep doing what you can- we all know how stubborn Mr C can be".

Sorry for long post...been following forum for ages and learnt a lot...I am just at the end of my tether, as an (unpaid) carer for a non-relative who won't open up and tell me how he really feels and is in denial about how poor his quality of life has become.

What can I say or do? I do see his daughter occasionally but she has a young family and is going through a breakup- she knows his situation but doesn't want to get further involved.

16 Replies

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  • I'm sorry ellens but I have to ask - Why are you wasting your life on two men who are using you as an unpaid servant?

    You are divorced from one who is no longer your responsibility

    The other is not even related and is unwilling to help himself

    Social services are there for these people.

    Your daughter is right not to want to get involved.

    Please lady, although it will go against your naturally caring nature

    PLEASE walk away . Until you do the agencies which are supposed to provide care will let you get on with it.

    Go and enjoy your life and your grandchildren

    All said with love and concern. Sometimes somebody has to say it.

    xx

  • I agree. I have a "friend" in a similar situation. She cant cope on her own, and relies on friends. To use a phrase, she "whinges and whines" ad nauseam. XX

  • You don't say how old Mr C is but I'm 85 and can tell you that there comes a time when you have had enough. The nurses know this and will have experienced it often, other younger folk find it difficult to understand. The danger here is that you are going to make yourself ill if you are not careful, with your wonderful caring attitude. Please, try to relax and accept that you are already doing all that you can, which is more than close blood relatives would in most cases do. Contentment is a funny thing and it sounds to me as though Mr C is contented, bad though his situation might look to others. Do keep in touch if it helps.

  • Seems relentless your fighting with Mr C daily to get him to wash eat and do little tasks that you feel would enhance his disposition. In doing so your probably frustrated with it all since there not your direct relatives . So long as you pander to his needs then it will continue. Have you tried taking a week off and totally taking on the concept of taking care of you .

    If Mr Cchooses to be like he is that's his way and you struggling with things will take its toll on you .Step back involve social services and the care team that home visits have a holiday and don't feel guilty .If you continue to care for him them your entitled to some allowance ..not being harsh just saying it how I see it xxxxx

  • I agree with your other replies Elfers. And you are not being a bad carer - you actually seem to be being saintly but in a situation which doesnt feel appropriate to me.

    You say you are at the end of your tether and my reply is going to be quite direct. Are you wanting to get out of this? Since this caring appears to be wrecking your life it makes me wonder why you carry on - whether you feel you owe it to your ex, or alternatively whether there is something you get out of doing all this. It's so obviously not your responsibility. Don's suggestion that he may be quite content might hold some truth - he's got you running around meeting his needs while he won't take any responsibility at all.

    No-one will help you until you stop doing this crazy caring. The nurses will continue to be complacent, and Social Services won't help until there is no-one else. My advice would be to give his daughter a few week's notice and tell her she will need to get social services in. Let Social Services know too and tell them clearly exactly why he is not your responsibility. Remind his daughter a few days before you will be leaving - it's her responsibility to negotiate with Social Services. Then leave - and stick to it. If that's what you want.

  • good reply 02trees.

  • Cheers LP

  • Thanks for your comments...I certainly wasn't fishing for sympathy, nor do I nag at the man- far from it. I would just feel happier if I could assist him to live a little bit more comfortably and to take his meds and O2.

    Your comments did strike me Don and I spoke to him at lunchtime. he said he hadn't given up but admitted he had let things slide and was a bit too proud for his own good at times.

    He has agreed to me looking into getting a wheelchair so his friend can take him out, which might help and has promised to talk a bit more openly about his needs and fears.

    I told him we can work on problems but hiding things away so as " not to be a nuisance" is actually stressing me out and making matters worse.

    It's my son's 10th birthday over the Easter weekend and I'd love to go down to Leicestershire to see my parents but even if I freeze meals or buy ready meals, I very seriously doubt he'd bother and he will be there alone (ex visiting his folks in South Africa).

    It's not about me, though but I plan to be assertive, do my best to help but set some boundaries and hopefully persuade him to look into other opportunities of support. In the past he has refused social workers and played his situation down greatly when talking to nurses and other professionals.

    Your comments have helped to give me a sense of perspective so keep "holding on" and keeping strong to deal with all the challenges you have to face- thank you.

  • Hi , you're an incredible lady giving your time and help , I don't know if this would be of any help to you . If you live in the U.K. There is a charity called crossroads, they give 3 hour respite to carrers, some areas are free of charge some not . You can find them on the internet or maybe some of the health professionals may know of them . This would give you a break once a week , some are just sitting services, some more hands on . This charity has been going for about 35 years and has a very good reputation . Hope this maybe of some help .

  • I just don't understand. You say that you are still running around after your ex and yet he is able to go to South Africa whilst you cannot go to see your parents because you are looking after his relative?

    Whilst you act as a doormat both of them will let you. Of course someone will refuse social services when they have somebody like you to care for and wait on them.

    I'm not being hard. I am on your side. I hate exploitation and you are being exploited in the worst way.

  • I see that it is his daughter that you are talking about, not yours. Sorry. Well his daughter has the responsibility towards him, not you.

  • I don't understand why you've taken this man's care on. I have a relative like him, I could easily wear myself out running round after him, he'll accept any amount of help from me, but not social services. In the end though, he'll carry on living his life just as he chooses, which is his right, & the only result will be that I end up exhausted. Surely your responsibility is to your own family, especially your little boy. Don't let this chap suck you dry. I'm sure it's not intentional, but that's what's happening.

  • Agree with all others and contact social services. IF he refuses visit from them, then harsh as it sounds you walk away. He isn't a relative, close friend or anything and even if he was sometimes you just can't do everything.

    There is equipment and services out there to assist. E.g. Meals on wheels or Wiltshire farm foods. If he then won't eat them isn't your fault. You and your family deserve time as well!

  • I still don't understand though Im glad you are talking to him about possible changes. Here are some questions and please don't feel obliged to answer them here as I don't know you and don't want to pry - just things for you to think about which might clarify the situation for you. And they may well be things you have thought about already. Somewhere in what you write I get the impression that you don't actually want to stop doing this caring, just for it not to be so arduous - if Im wrong then apologies and you have a lot of advice to help you break free if that's what you want to do.

    But it might be useful to consider, as I said above, what you are getting out of this. I imagine you must have had a lot of "running around" to do when you were with your ex since he is blind - has that become such a habit that it's hard to imagine life without that role? By staying around are you thinking you might get back with your ex? Could this relative have become a surrogate for your ex?

    We all need to be needed, nothing bad about that. If you carry on with this it might be helpful to know (for yourself, not to tell us!) why you are doing so, and then use whatever support we or anyone else can give you to make it easier and enable you to live your own life with your own family and friends at the same time. Good luck.

  • I agree with the replies you have had. You really need to let go of these self imposed obligations. Talk to Social Services yourself, or ask the daughter to. That way he can have professional help. You can go and visit your grandson. He will soon grow up.

    If you are fond of these men, there is nothing to stop you visiting them socially. Maybe you enjoy their company. You could call in for a cup of tea with them. No reason at all why you can't have a friendly chat. Get up and leave if any demands/requests are made.

  • Hello elfers . Your story rings a bell with me. I know that feeling well as I used to be in a similar situation. The truth is at the end of the day, no matter how good your intentions, every time you give a little more of yourself, you are slowly losing a bit of you permanently because you invest so much of YOU into it. When I was in a similar situation I believed it was going to cement my relationship, but it didn't. It just served to exhaust me , mind and body, and yet I continually put myself last. And then I got irreversibly ill. And worst of all, I forgot who I was and when I looked around me after the fact, I didn't have many of those I use to love there anymore because I had willingly left them out of my life.

    I am sure your situation is not the same as mine. So, I will just stress this is my experience and not necessarily yours. The important thing is not to lose sight of yourself. You need to love you too before you can truly love another.

    Thinking of you.

    Cas xx 🌹

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