He used to be here but is slowly sneeking out the door! I really don't know how best to help him, or if he needs help? He can't live independently, he gets 'frail' days, forget that he needs to drink regularly, he can't remember how to make a sandwich, can't even remember if he's eaten. You will recognise these things I'm sure so I'm not asking you to feel sorry for me.
But as dementia, Parkinson's, multiple sclerosis, whatever is affecting the individual, progresses, no professionals seem to understand that it is not so easy to take care of yourself! Funding is finite, voluntary sector are flat out. So, how can we look after ourselves...when there is nobody to 'take over' whilst you 'take a break'?? I couldn't leave my dad for 4 hours whilst I attended a diabetes clinic. He would fail to have a drink. So, who got the black look from the gp?? Does the GP really understand how losing cognitive function means that you can't process your peripheral vision? No peripheral vision means that anything out of immediate sight is forgotten. Now apply this to seeing a cup of tea on the table in front of you, or the careline around you neck/on your wrist, or that the light switch is just at the side of you. Add to this the inability to use the power of thought, such as standing up and not remembering why you've stood up. Going to the bathroom and not remembering why you are there, and end up with wet pants.
Yes I'm moaning/ranting, but it makes me so mad that they expect untrained people to look after a person who is getting progressively weaker, in one way or another, and then tell you to take a break or go to a carers' group. How? When? Who with (not much fun being on your own again, but in a different way)? Carers' allowance is significantly below minimum wage/living wage. Even with top up 'benefits' we are still below minimum wage. So how on earth can we afford to take a break?
So, has anyone really seen my dad??
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lell1
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not sure I like being called a monkey!! But yeah ur right. They get paid more than us! Maybe I shud start eating bananas?? I worked in care for people with learning diffs and came across a lot of bad practice, but there is also a bunch of really good people and you don't have to look hard to see who does care!
It's awful, isn't it lell1, not only to watch a loved parent slipping away from you in this way, but to find yourself under so much stress in trying to find the time and space to care for yourself?
But I'm not sure you're right about professionals not understanding our difficulties. I think they know fine well, but prefer you to say nothing, or they may need to help you. They know that systems are critically short of money and squeezed to the bone and that respite care, once upon a time readily available in most places, now almost doesn't exist. And so they won't raise issues of your ability to cope.
Which is why you need to direct your 'rant' in the right direction. It might be a rant in your eyes, but it's really a deep cry for help and, if you don't get respite in one form or another, you'll slowly go under, and you won't be of any help to anyone. So make your 'rant' count. I think I can safely speak for all of us here at HealthUnlocked that we are really happy to offer you a shoulder in support but we can't physically help you.
Professionals can, if you really tell it as it is, (politely preferably), but if you have to rant, do it all the same, and refuse to have them believe that you can, or will cope endlessly, without some kind of help. It doesn't matter how much you love someone, you can't be their sole supporter.
I agree entirely with your comments as it was this that was underlying my rant! Then add to this the increasing population alongside the decreasing services/resources. Doesn't take a professor/think tank to tell us that the balance is wrong. I would rant at professionals....only appointments are like dreams!
So sorry to hear lell1, but glad to hear from you at all. I hope you can hang in there. Like CUmbrialass, thinking of you and hoping you'll feel a bit brighter soon.
Still waiting for the miracle Cumbrialass! Was looking at carer support locally...there's a bloody waiting list! When I took my dad to the docs the other day I went over to have a look at dementia board. They have been awarded recognition from Alzheimer's society for being dementia friendly?? Most of blurb on the board is out of date. Ready to be replaced by a nice new shiney set of up to date, different but the same pointless signposts that send you round and round til you give up. So, I moved on to the carer support board...all the leaflets that are available on line, or wherever you go to 'discuss needs' and they throw em at you over n over!!
So sorry about that, still having discussion with our local health group re lack of permission to see a professional Occupational Therapist, we are coping but it’s become a matter of principle with me now. Difficult northerner! Take care, hope you get some help eventually. X
Good to hear from you as was worried, we are ok, been extremely fortunate and had few days in Suffolk which was good but too hot at times. Feel very lucky, managing heat but very tiring, oh having noddy now whilst watching tv! Just had different cleaner here, don’t like change but other one on holiday. Take care.
Went into town and paid a fortune for taxi back, uses all to pot as part of A bridge damaged with rain! Got wet walking home from nearby supermarket last night too.
Wot u like?? Good to hear that ur ok. Did wonder how the rain would treat u guys. Glad u managed to get away for a break (heat not withstanding!) These cleaners have a nasty habit of having holidays eh? Snot like they even think of your dust whilst they enjoy themselves!! U could be buried under the stuff! How's the family?
All well here, how are you? Had eldest daughter and husband here for few days and enjoyed it this time as they took us out a couple of times instead of having lots of jobs to do. Was too hot at times on holiday but good to have someone else to cook etc and company was good. Used local firm who collected us from home and back. Waiting for the storm to arrive, gather yiu had lots of rain in Derbyshire the other week, we were lucky as it as bad up here. Take care, hope yiu getting some help now. X
Not my year, frustrating time with contractors, useless replacement cleaner, unco-operative NHS. Last weekend missed last step on stairs early morning so been in agony since so hoping soreness clears up soon. Sorry to moan.
Hello CUmbrilass! Have u located a decent cleaner yet? Is Brian able to help around the house? The best bet is to go out...that way you won't see the horrors of housework!
Hope you are feeling brighter and coping ok. I am feeling easier now but not the best of times. Was glad to see normal cleaner back, not been out much only manage to walk to. Sainsburys which is just up road from us. Just have a coffee for a change of scenery and usually see someone we know as don’t have many other visitors now apart from family and one lot of close friends, everyone getting older like us, (84 & almost 87).
Hope you are coping ok, been out this afternoon after we had a very heavy shower. Went to local church group, very friendly and kind lady brought us home. Thought I had better put something on here as got a reminder about it.
Hi CUmbrialass, I haven't had any contact for the past couple of weeks, but at that time we exchanged a couple of comments on my 'cat' post. Maybe lell1 will read your inquiry or my answer, and let us know how she's doing.
Oh bless you CUmbrialass, I can understand how you might be puzzled, but believe it or not it all started with a picture of my cat Kasar, and not related to medicine or care at all. So just about one of those furry things with a leg in each corner which lell1 was saying she's not too fond of. But yes, hope all is well with lell1 and with you too. Very best wishes.
Here I am! How's things up there? Strange old time with the weather huh?? How's Brian and the grandchildren? Christmas coming up so I guess you're going to spoil them? You've not taken up karate to replace falling down the stairs? Probably get less bruising! Have been struggling with dad, he's not been quite the ticket (and certainly no refunds on the return ticket!!)
Is it just me, or is support just a fantasy? Waiting lists for carers groups, when I do see one, it's too far away to go and leave my dad on his own! Have managed to get him into daycare twice a week, but this means I have to get him up at 6.30 to be ready by 9am! have also managed to get carers coming in now to do personal care for him. He's gotten to the point where he needs reminders for cleaning teeth/shaving.
So glad to hear from you, was worried. All ok here, thought you may have been struggling with Alfie so hope things are a little easier for you now. Not doing Karate yet but feel like practising it sometimes on the wall! Brian not doing too badly but very slow walking now but we have been out most days even just for a short walk and a coffee (very frustrating at times and feel guilty but sometimes feels as though everything is passing by and one day runs into another). I have a volunteer coming to stay with Brian for four hours on Tuesday afternoon, through our local Carers group, not that he thinks he needs him but he is a pleasant bloke and they have some places they know in common so hoping for a dry day for a walk if possible as very short of exercise. Our local hydrotherapy pool is closed for a month for repairs and I had just got back to going there. Not seeing family at Christmas so booked a coach trip to Scotland for five days. Grandson and family coming over from Holland for Christmas and staying in a holiday cottage in Norfolk so won’t see them and other going to her mums for it. We usually spend it with a couple of friends but not easy at their place last year and didn’t want to cook so decided to go away. Hope you see some of the family then even if just a brief visit. Take care, good to hear from you. M
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