Hi Margaret,
Age Concern should be able to help and advise you. Good luck [emoji6]
Thank you,
I will contact them and see if they can help me
Margaret
Hi Margaret,
Age Concern should be able to help and advise you. Good luck [emoji6]
Hi everyone. I'm new to TP and so glad I joined. I think I can relate to all the comments/scenarios you have shared. My OH has complex Parkinsons and now dementia has also been diagnosed. The comments from everyone over the last 6 years "you know it's only going to get worse - take care of yourself" has finally got to me as well. No one asks how OH feels - and how do you look after yourself when you are the sole carer and no sign of respite? It's good to know that I am not the only one who struggles from time to time - so a big thank you everyone for sharing your experiences. We all do our best and we can do it with the support of each other - we all deserve a big hug for what we do.
You've hit the nail on the head here Everton Annie. Nobody can possibly understand this particular brand of pain unless they've lived it themselves. And I wouldn't wish it on my worst enemy.What a lot of people don't seem to recognise is that not only do our lives change because we become carers but also we lose the people they were and that is infinitely harder than caring for him 24/7. Nothing can ever prepare you for that loss.
One thing which my experience with my mum's Vascular Dementia has done, which I hadn't expected, was to highlight who my real friends are. I am not saying it was worth having the experience to find that out (!), but, really, had this not happened, I would still be bumbling along with some people in my life, not realising what complete s***s they really are. There haven't been too many, only two, but without mum's dementia, I would never have seen them for what they really are. I can safely say that these people no longer have the pleasure of my friendship! It's one thing making an allowance for people who don't know what to say, or who say something inappropriate quite innocently because they don't understand, but someone who has a totally lack of empathy or, as in my own case, openly gloated at our misery, has no place in my life!
Hi Marnie,
Yep, as Margaret says, you got that right! Mention of dementia seems to work if you want people to vanish.
Other problem with friends I find is they do not understand that I cannot leave my wife on her own while going out. So get the huff that I will not (cannot!) join them. Trying to get 2hr a week off is hard enough and not often achieved. Saying, "I am off out for the day" is just not going to work. She needs care 24/7 an I am the carer.
A friend of mine recently commented on how she was so sad that my OH's life had turned out the way it has.
Was I just feeling sorry for myself or what because I really wanted to say "what about me, what about my life?"
Is it that some people just don't understand that WE as carers have also had our lives turned upside down too???
I really had to bite my tongue and let the comment go over my head. I didn't want her to think I was been selfish by thinking about myself too.
Yes I love him and yes I would do anything for him but I also know that he will become more and more dependent on me and my life will never be the same again. However, I do not begrudge him one minute of my time.
Through Talking Point I am learning to understand so much more about the illness and your strength is giving me the strength that I need.
Love to all xx
Hi everyone,
I would love to have time to reply to you all individually. However as we all know we don't have much time to ourselves and if we do it isnt normally for that long. I will start this post and probably manage to complete it in a few hours time!!
In saying that I must admit that I do tend to sit up very late into the night and if my OH hasn't settled down I am sometimes logged into TP. I manage to catch up on some of the latest posts and can relate to more and more each time I do.
I'm glad that I'm not the only one who feels the way I do. My daughter who is a Psychiatric. Nurse looked after people with Alzheimer's and different forms of Dementia and said that as much as she loved her job it was extremely hard. Not that she is scared of hard work, she meant it in the sense that it is not an easy job to do. She gave me a bit of an insight into Dementia and how to try to deal with some of the things my OH is experiencing and I know that I can always phone her to ask for advice but as she says one person can be quite different from another. Luckily she understands what I am going through and how exhausting it is. No I'm not looking for sympathy, none of us are but as many of you have said it would be nice if friends asked, even once in a while, how we are coping.
I have asked friends not to just call for a visit without contacting me first. I feel that many of them think I just can't be bothered or that I'm pushing them away. I try to explain that I feel it best to see what kind of a day my OH is having first. I have also had all the " he's doing great, chattering away as normal as you or I" or the worst being him saying that he's fine and I'm making it out to be worse than it is.
Going off onto another subject, today I phoned to ask about forms for DLA and Carers Allowance. Am I entitled to them? Maybe not but I'm going to give it a try. Any ideas on who is the best person to help me complete these forms?
Thank you all for taking time to add to this post.
Talking Point is certainly "heaven sent". As I said on another thread it is so good to talk.
Love and hugs to all,
Margaret xx
Margaret - your local Citizens Advice should be happy to help you with the forms.
You know the worst bit about all this? When someone casually says: "You have to come first. If you don't care for yourself, how can you care for others?" If that was right, we'd all be happy, contented; strong and able to cope with everything!
The truth? Often, it's you're up all night, or dealing with having to clean up, several times a day/night, and you're run ragged. No one sees it who hasn't lived with this. How can you possibly care for yourself when you're just about drained of all function most of the time? That's how it was for me for years. Taking it all on the chin is all we can do, unless we have a barrel full of other people who will happily come in and take over sometimes.
I think that only happens in books? Have a BIG (((((Hug))))), Margaret.
Hi Chugalug,
I was so sorry to read your sad news. I lost my father a few days before Xmas last year so I understand what you are having to deal with. I also had the most amazing funeral directors who were so kind and understanding. It certainly is a big help.
I just wanted to send you a GREAT BIG HUG too. Take care, Margaret xxx
Thank you Margaret. The first few days were like being carried, but I think a bit of hard reality hit today. It was a comment made on the phone which got me thinking: 'Oh, so that's how you feel, is it?' Throwaway comments are sometimes the worst. I'm no good with that whatsoever. But I've planned for it now, and I'll do all the stomping around next week to put everything in place. Getting too reliant on others is never a good thing for me. The promises mount up with not a lot to show for them in the end!
I must do better
Hi Chuggalug,
Some people have no idea how much their comments hurt us.
Please try not to dwell on it. I was much like you and in actual fact I decided not to rely on anyone apart from my daughters. I think what actually got me through was doing the planning and preparing and keeping busy. I did my fair amount of ranting to get things out of my system though.
It's not an easy time and I have to say that I have not experienced losing a husband or partner so I really feel for you. Losing my father was like having my heart torn out so I cannot imagine what you must be feeling.
My daughters said to me to remember the good times, remember how much you loved him and remember that you did everything you possibly could to care for him.
You have done a marvellous job and don't ever forget that.
We are all here for you as you have been here for all of us.
Love and hugs,
Margaret x
A friend of mine recently commented on how she was so sad that my OH's life had turned out the way it has.
Was I just feeling sorry for myself or what because I really wanted to say "what about me, what about my life?"
Is it that some people just don't understand that WE as carers have also had our lives turned upside down too???
I really had to bite my tongue and let the comment go over my head. I didn't want her to think I was been selfish by thinking about myself too.
Yes I love him and yes I would do anything for him but I also know that he will become more and more dependent on me and my life will never be the same again. However, I do not begrudge him one minute of my time.
Through Talking Point I am learning to understand so much more about the illness and your strength is giving me the strength that I need.
Love to all xx