I've had another few unwelcome comments and emails - all from people who probably think they're helping, but the reality is they're just telling me what I should do. The thing is, they're saying what they would do in the circumstances - why they think it's also what I (or anyone else for that matter) should do is beyond me, it's very presumptive and/or presumptuous. They don't actually know me, they know only what I choose to put on my blog, plus we all have our own individual ways of doing things, we're not all clones. Yes I do sometimes (quite often if truth be told) have a moan on my blog or even say that I'm having trouble coping with things.....why the hell shouldn't I? It's my blog after all. I say what I feel at that present time, it's not necessarily how I feel the next day. I react to things in the moment, I'm not permanently in the doldrums or feeling under pressure. Neither am I permanently happy and contented. Is anyone?!
I've been making decisions and doing things all on my own pretty much all my life, certainly since the age of 13 when my dad buggered off and my mum went to pieces for a year. I don't rely on anyone else - a lifetime of experience taught me to be self sufficient. The only person you can rely on is yourself.
Husband told me yesterday that the psychiatric nurse told him before we left her office that he doesn't have dementia - I must have missed that because I didn't hear it, or else he misinterpreted whatever she said. I find it difficult to accept she would have said that before she'd gone through his answers to all her questions and tests and scored them, and before discussing it with her superior or referring him for a brain scan. If that's the (instant) conclusion she has actually come to, then I would be forced to ask how she would explain husband's profound decline in his cognitive abilities, or the drastic change in his personality and behaviour over the past few weeks? And if she has indeed come to that conclusion on the basis of just one hour, a few brief tests and listening to him chattering away and joking all the time, then I would be very disappointed. You have to live with him and see what he's like 24/7 to know how it is, or at the very least conduct more and wider ranging tests and investigations.
I've decided I'm going to put myself first and start doing more things I want to do from now on - at the moment (well, for a long time now actually) my life revolves around doing everything in the home and for husband, it's all about what he wants or doesn't want to do. E.g. he never wants to go anywhere - well, nowhere that I suggest, he does seem to like going off by himself to Bridgy on the free shoppers bus.....incidentally, he usually buys himself things whilst he's there, occasionally even something for Betty, he never buys anything for me. I've had my bus pass for a few months now and never used it yet, so I'm going to start going into town - by myself - on the bus once or twice a week. I may even start going to some coffee mornings, talks or even exercise classes, I've seen there's a new chair-based gentle exercise group starting up in town next week, I might make enquiries about that.
Good for you, putting your own needs first for a change. I think many people, women especially, are almost hard wired to put others first. But if we are caring for someone else, we need to be cared for in turn. As the saying goes, you can't pour from an empty vessel. Even just knowing that you have some time for yourself a couple of times a week should make you feel better.
ReplyDeleteAs for advice, it's one thing saying "have you tried this?" or "I tried this and it helped me, it might help you", it's a completely different thing saying you should/shouldn't be doing whatever!
I very much doubt the nurse said to your husband that he didn't have dementia. As far as I'm aware, that diagnosis is made by the neurologist from their assessment and/or scans. I hope you get some answers soon. Waiting and worrying is too stressful. xx
The exercise class sounds a brilliant idea and you would be able to have some free time in town on your own after it. Our WI meeting later on this month is something similar, looking forward to it.
ReplyDeleteIt seems to me that you are in a 'half-world' with your husband.Sometimes you have to allow for his bad moods, bad behaviours, irritations, etc. yet sometimes (like when he takes himself off on the bus to town) he manages quite well. You certainly deserve to lead your own life as well as caring for him, so I hope the occasional 'me-time' outings help you to feel better. I wonder how he will react when you take the action you need?
ReplyDeleteChair exercise sounds like a good plan. I tried some chair yoga recently and enjoyed it. It’s good you have plans to use your bus pass as this helps to cut down the cost of getting out and about. Take care. Catriona
ReplyDeleteI hope you do manage to carve out some time for you away from home and caring responsibilities.
ReplyDeletePerhaps your husband heard what he wanted to hear. I too am very doubtful that she would have made any comment regarding a diagnosis, particularly without ensuring you had heard it too. Thinking of you x
I, too, hate unasked for advice, no matter how well-meaning, although I have no experience of living with someone in what seems very difficult circumstances. I think it unlikely that the nurse said what your husband has reported, and think it likely that she could see through his jokey, blustery attitude and will have marked that in her notes. The only thing I have occasionally wondered is whether you could record his outbursts on your phone (only if you are safe to do so). This could then be shown to the doctors etc., or even to your husband as he seems to be in denial about his behaviour. I definitely think you need to have some sort of respite a couple of times a week, even if you catch the bus somewhere, have a coffee then come straight back
ReplyDeleteIt's very easy for people to say what they'd do... until they're faced with what you're coping with. Taking some time for yourself is a brilliant idea. If I lived anywhere near you I'd gladly meet you for a coffee and we could have a blimmin good moan together.
ReplyDeleteOh, there's always someone who thinks they know better, isn't there! 🙄 I can understand why that's so annoying for you - people love to pronounce on things with little information but plenty of opinion... I think it's really great that you're looking into doing more for yourself. We can end up as housekeeper and general factotum of we're not careful and that's not good for anyone. If your husband is anything like mine in his thought processes, his comment about the nurse saying he hadn't got dementia is likely a story he's thought up for himself. My husband concocts lots of little 'wishful thinking' stories these days which he then pronounces as fact. It makes it quite hard to know what the truth actually is!
ReplyDeleteYour plan to do some self care sounds very healthy. A bus ride, having a coffee at a coffee shop, whatever you like.
ReplyDelete((Hugs)), I hope that you just ignore those posters who think they know better than you.
ReplyDeleteGod bless.
I think you’re right to prioritise yourself, too many women don’t in my opinion. I can’t imagine the nurse said that to your husband, he’s either misheard or is making it up because he doesn’t want to hear the truth. It must be very hard for you to be living with this. I hope the nurse calls you today. Take care.
ReplyDeleteSending hugs.
ReplyDeleteNo-one can know what you're going through, and nothing in real life is as cut and dried as some text showing on a computer. Keep on keeping on, and I suggest that you use this as your wailing wall if you have to and ignore those who think they know stuff.
Having had a relative diagnosed with dementia, I doubt that the nurse said anything of the sort. I heard all sorts of tales and stories and I learned to nod, smile and make decisions regardless of what they said.
Take care of yourself.
I agree with Happy Hooker. Only a consultant neurologist can make that diagnosis. I think that’s a great plan Sooze. I know most of the time I feel like an unpaid housekeeper and all my life consists of is housework and organising. It feels like I’m drowning. Sending love. June
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