I meant to say. Hubby so bad this week I phoned his GP. Through the receptionist she said give him paracetamol and check his temperature! He has Parkinsons not flu!!!
Hey there Autumn lady
In a moment of possibly misguided humour, am tempted to ask what has stopped you from setting up an orphanage for homeless children in some war torn part of the world…surely you have had time and energy for that?
You know, however much we think we have reason to feel guilty, and whether we do or not, it does us no good…( unless we have done something truly bad in which case we might get locked up, or our OH removed to a place of safety…problem solved! ) in fact it makes our job even more difficult, so even if ( which I strongly doubt) you had a reason to feel guilty, don’t. Tell yourself that it is not helpful. So you shouted, were impatient, felt murderous , felt like walking out, did walk out for the sake of your sanity and safety, so what? You are human and you are still there and still doing your best which is good enough. It may not be the best ( what is…and who is in fact doing that?) but it is good enough and that is what matters. Really. Whatever other people look like on the outside, you can be sure they are feeling like you on the inside and doing / thinking all sorts that they would not want other people to know about.
Secondly, if you were being selfish, you would not be looking after your OH and putting your own health needs second ( or third or fourth). If you were being selfish , you would be ignoring his needs and what is right for him ( which for some people includes finding residential care) and you would be doing anything you can to make your life easier, not his. Even taking a break, as your carers’ support suggest , is not being selfish, it would be trying to make sure you can continue to look after your OH, ( unless you are planning a six month world cruise but somehow I doubt that comes into the equation) , even though you in your own right deserve a holiday, just like anyone else, carer or not. Most people take such things for granted and never question their “ right” or need to take a break. A week (or better two) ‘s holiday in the sun, by the sea, up a mountain, in a darkened room, whatever (we can but fantasise) might look “ selfish” to someone who is wholly ignorant about the life of a carer, but it is a matter of survival and making sure that tiredness does not turn into exhaustion then burnout and all the associated risk of harm that comes with that, to our own health as well as to our “ loved ones” ( dare I say not always very loveable). How does it benefit them if we go under? We owe it to them as much as to ourselves to have a break. It might be impossible to arrange that at the moment, but we can plan, start saving maybe, getting into the right mindset which will make it possible ( please read the relevant chapter in Hugh Marriott’s book for carers if you have any doubts about this whole issue).
I know it is a rather overworn metaphor, but we cannot help someone who is struggling in the water by getting in and struggling with them. I hate with a vengeance the fact that my OH has PD and PDD, I wish I could take it away and I feel so helpless in the face of it, and I know he cannot help ( most of the time) the things he does that drive me crazy, but the harsh reality is that he has it and I don’t ( though some might argue that I do “have” it, just in a different way to him) and it does neither of us any good if I get in the water with him, as it were. In practice that looks like taking a break (!) when I can , doing something for me that is unrelated to him or my caring role and not feeling guilty about that. And doing it for my sake because I deserve a life too. There is little enough opportunity for such things so why spoil those few minutes or hours even , feeling guilty and selfish, like when he is in bed, when it is possible?
As for me, I have good times and bad times…the latter when I seem so full of tears that I can barely function, and other times when I feel a little more in control and think, “ Hey, I can do this”. Have yet to work out how to hold onto the latter for longer than half an hour! I try to lower my expectations of what can be achieved during the day, but mostly fail at that, hence the frustration. I don’t have my own health problems to deal with thankfully ( except the obvious mental health ones) and I appreciate that it must be so tough for you to be battling with that too…all the more reason to prioritise you and your needs from time to time.
As I read your post. It fits my experience to a T Carers are the unsung heroes and with very little support. My partner is now hiding medication and so I have to monitor it like a Jailer, plus wake up every 2 hours at night for toilet duty. Sorry cannot be positives!,
Welcome @Rosielee, you are another of life’s unsung heroines. Your experience of your partner hiding his medication is something i’ve never come across before but then again you learn something different on here everyday. Obviously not very amusing to you but to me, reading your post, hit my funny bone, sorry. You do seem to have a frustrating time with him but you’re still hanging in there which is a credit to your resilience. Stay strong and stay SAFE !!
Meg I would say make sure you are not being taken advantage of? I am the sufferer of Parkinsons but my partner of 47 years went one better and developed Dementia before me so I am his career. He is very demanding though physically able his mental capacity makes him the meanest Bastard on God’s earth. As a sufferer of Parkinsons there are some things I cannot do so I make the best of it, I can,t put my socks on so I go without socks. Not the end of the world. He doesn’t think to bath for the last 5 years, sod it no skin off my nose? I struggle to keep myself clean I am not going to use my time slapping a hot flannel around his grubby bit,s. He has not left the house for the last 5 years and refuses to see or speak to anyone other than me, so what? He is in total denial and I leave him in his own little world. Going back to me and the message I want to send you is that whilst there are things I can,t do there is still a lot I can do, Your partner needs to lower his sights and expectations? Is there any reason why if he is up and in situ with his essentials about him you can’t just carry on your own life? Just trying to say make sure your (or his} standards are not too high. Things change with age and we can,t have what we have always had. Make sure he knows this. X