Wanted to explode!!

[Margaret59]

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

 

[Casbow]

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

Some people don't think about what they are saying. And with no experience of a loved one with dementia cannot possibly understand the misery and heartache we carers have to cope with. Onwards and upwards I say. We all know what its like. Just that we all wish we didn't know. xxx

 

[Hamster Wheel]

Know how you feel. A freind Who isn't in an ideal situation with her husband and his health, but manages to have a busy social life and lots of holidays, came out with 'I suppose you're more tied than I am'. We are trying to work out what to do with dad so we can visit our son for a weekend, he has just bought his first home and desperate to show us. Tied, tied... Feel guilty walking the dogs never mind holidays!

 

[Malalie]

You are so right - dementia doesn't just affect the sufferer, does it? It's completely understandable to have felt a bit miffed about that comment, but I'm sure that it was well meant.

It's difficult for people to know what to say in these awful circumstances, but I wouldn't hold it against your friend - she was probably trying to be supportive by sympathising with your OH. Anyone who hasn't lived with this can't possibly realise what its like to...err...live with this. They don't understand.

Five years ago, I thought that Alzheimer's mean't that your short term memory was becoming poor..........I have been so shocked to find what the reality of the disease is really like.

Don't lose your friends - just come on here and have a damn good rant about them when and if necessary........xx

 

[Margaret59]

Thanks everyone for replying to my post. Yes I suppose it is hard for people to know what to say and it probably wasn't meant in a bad way. It is so so good to come onto this forum and be able to get it all out of my system.
Love and hugs to all
Margaret x

 

[Zana]

People dont realise.... Like my GP I have been really worn out recently and mine asked about OH I said he is demanding and the GP turned on me and said 'well he cant help it you know' This was the same man who denied there was dementia in my OH for two years!

I think because everything in the media is geared toward the sufferer that people just dont realise the impact it has on the carers.

Mind you, even positive comments can get really annoying. Each time I ask for a bit of help Im told , 'you do so much', 'you do so well', ' you are so creative' .... well I dont always feel like Im doing well, Im not mother Theresa. I get angry, I need support too but people just dont thinkbefore the speak...

I think we all have days when we have to bite our lip... because people dont think.

 

[Tootsweet]

So true Margaret59. I feel the same, especially when OH is so nice to others and you get that comment, "he's not that bad, the things he remembered today". I could scream, as it's almost as if they think you make it all up! Would I really be this mentally and physically tired if he was ok!

As you said CardiffLady let them walk in our shoes, then they would understand just how difficult it is and how selfless you have to become.

Of course we love our partners, but it's hard to like them sometimes when this horrible illness replaces the personalities we knew so well. It takes so much from us, the carers too.

Another day, another story.

Good luck everyone. Xx


Sent from my iPad using Talking Point

 

[Clunchman]

Thank you for posting what I sometimes feel Margaret. I have had people suggest what an easy life it is for a carer. Just sit around all day. One big holiday. As you say the concern is mostly for the one being cared for and little or none for the carer. Holidays? They don't exist. Free time? What is that? I also find those who think it such an easy job are reluctant to take the job over for a couple of hours to give me a break.

Of course we want the one we care for to be given every help, but help for the carer seems often to be an illusion. The fact that the carer's life now just revolves around the job 24/7 and self interest takes a back seat, if any seat at all, goes unnoticed by most folk.

 

[marionq]

Most people who ask after my husband follow it with "This must be very hard for you too". That seems pretty much the right thing to say and I assume they are people with some knowledge from family or friends what dementia is like.

At 73 I am pretty much exhausted from caring but there is no answer except to keep going. My husband is a nice person but so confused and with so little short term memory that I am living with a facsimile of who he was.

It is difficult not to do the woe is me thing.

 

[Clunchman]

I don't think most carers want sympathy, just recognition that their life has had to change for the worst as well. Practical help is of course also welcome. You seem to have met kind, thoughtful people Marion. Much of my experience has been the opposite.

 

[Chuggalug]

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

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.

 

[jenniferjean]

I find the same. I am diabetic and have 6-monthly check ups with the diabetes nurse. I walk into her room and she asks "how's he doing?". We spend 10 minutes talking about my husband's dementia and possibly 2 minutes talking about me. I also get the "you need to look after yourself so that you can look after him". I also feel like shouting "WHAT ABOUT ME".

 

[APPLEANNIE]

want to explode

I find the same. I am diabetic and have 6-monthly check ups with the diabetes nurse. I walk into her room and she asks "how's he doing?". We spend 10 minutes talking about my husband's dementia and possibly 2 minutes talking about me. I also get the "you need to look after yourself so that you can look after him". I also feel like shouting "WHAT ABOUT ME".

I know just how you feel i am also diabetic and partially sighted yet everyone always asks how my husband is. I went to the doctor to tell him how it was getting me down
but we spent the whole 10mins that was allowed talking about my husband Sometimes i want to open my front door and scream " What about me".No one understands they just come to the house for a short while and think he not too bad. They dont realise all the troubles you have had all day. the end result is I feel more like his mother than his wife.

 

[Spamar]

I'm arthritic. So when people said you're doing a wonderful job, I just felt resentful. It wasn't until step kids came to look after him for a weekend that they realised. And me? I tried to cram everything that I missed into that weekend, with the inevitable result!

 

[Philbo]

The comments I hate most are the " well,you know, it's only going to get worse...."!!!

"No **** Sherlock!" I think (or even sometimes say).

I remember some time after my wife was diagnosed in 2014, we were at a New Years Eve do with her sister and husband. As the party poppers went off and we all wished each other Happy New Year, my brother-in-law said " I feel sorry for you now, not having much to look forward to!"

I managed to hold it together but cried my eyes out on the walk back home. Luckily it was dark, cold and wet, so my wife didn't notice.

He had lost his elderly mum to vascular Dementia a few years earlier and had helped his dad cope during her demise.

I did eventually "educate" him as to the effect his "it's only going to get worse" comments were having. It seems to be quite a common response you get from people so I guess we have to develop a thick skin?

Big hugs to all carers out there and everyone affected by this awful condition.

Phil

 

[Clunchman]

You got that right Philbo. Had that comment a few times.

 

[Margaret59]

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

 

[DAL]

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

Hi Margaret,

Age Concern should be able to help and advise you. Good luck [emoji6]

 

[Daisy Garden]

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.

 

[Everton Annie]

Caring is tough. I've been a carer for my 2 sons diagnosed with Asperger's syndrome for the best part of 30 years. However whatever I do for them might lead to a positive outcome and they are unique and individual and I wouldn't be without them.

Caring for my husband is a whole new ball game with no positive outcome for either of us. 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. I never anticipated that by the time my husband was 67 he would have no knowledge of who I was. In fact he gets upset when he tells me his wife died. I live with a man who physically resembles my husband but emotionally and intellectually he has disappeared. It is the same for my four sons who have seen their father disappearing in front of them. Nothing can ever prepare you for that loss. I'd care forever if he just knew who I was, instead I am designated as "the lady who looks after you" , he does say I am the chief one though because he sees me as different people throughout the day. So yes caring is tough but losing the person is tougher and, as has been said before, they forget and we can't. Sorry didn't mean to rant on.