Wanted to explode!!

[Margaret59]

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

 

[Chuggalug]

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.

I totally agree with your last statement. A huge welcome to Talking Point, Daisy Garden.

 

[sadjane]

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.

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.

 

[father ted]

So true. I have distanced myself from those 'friends' who have proffered advice on my situation. They have never had to cut short a visit to a friend, to get back in time to relieve a carer. They have never gone without a holiday because they put someone else's needs before their own. They have never had to clear up after someone else regularly and never had to just accept mood swings, goading, tears and tantrums without responding.
And I find those who are most vocal never ever offer any practical help.

 

[Marnie63]

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!

 

[Margaret59]

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,
You are so right, you don't know or find out who your true friends are until something like this happens. It's a sad way to find out though isn't it. Better off without them comes to mind.
Your true friends are on this forum and we all know what you are going through. I'm very new to it all and still waiting for diagnosis on my OH. Pretty sure it is dementia with Parkinson's though.
Memory clinic later this week so that should hopefully get things rolling.
Love and hugs, keep your chin up,
Margaret x

 

[Clunchman]

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.

 

[Lavender45]

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.

Completely agree! Whilst mum was at home with me I think some friends believed mum had a pause button I could press and leave mum sitting safely and unmoving in her chair whilst I went out to lunch. They just couldn't get their heads around the reality which was that every free minute came at such a price that it became too stressful to leave her.

 

[suze]

so true....

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

I do feel for you - you probably knew on a 'head' level that your life was on hold but your friend saying what she did touched you on the 'heart level. I think many of us have simmering resentments about how our own lives are on hold and that others don't recognise it...I am 65, my husband 79 and I am in a similar position....you cannot know what it is like to care for someone in these circumstances unless you are doing it....
chin up...try and keep up hobbies....

 

[Marnie63]

While we're on the topic ... ! .... the other thing that has surprised me is that ever since I told mum's remaining friends (as in they are all elderly, so not many left now) she has dementia, most don't call. I'm still here and mum is still alive. It's almost like they are scared they'll catch it over the phone line! They could still call and speak to me and ask how mum is, but very few do. So, what do I do when the inevitable happens? Do I even bother to tell them? If they pitched up saying how sorry they were, I'd be tempted to ask them why they didn't call when mum was still alive. But, maybe I should be more understanding and remember that before this happened to my own mother I had no idea how awful it was either ...

 

[Casbow]

My message has disappeared. Don't know where. I will look again later.x

 

[Olliebeak]

Help with forms.

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.

 

[Margaret59]

Margaret - your local Citizens Advice should be happy to help you with the forms.

Hi Olliebeak,
Thank you for the reply. Am definitely going to need help with forms. I used to be really good at completing them but not anymore. Was at the Memory Clinic today with my OH and as his carer I was asked to complete forms asking questions relating to his condition amongst other things. My mind just went blank for some reason.
Margaret x

 

[Margaret59]

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

 

[Chuggalug]

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

 

[Margaret59]

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

 

[Chuggalug]

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

The comment was: "But you're not paying anything, are you." Truth? I'm going into debt to make sure everyone IS paid. I'm applying for a loan next week to cover care costs and the rest of the funeral payment. That comment came from someone in one of the official offices I've already dealt with.

I think someone else from there was over-confident about the help I'd get. I think also, another person was very over-confident, as I spoke to another person two days afterwards from that office, who knew nothing about my former conversation.

Nopes. I'm all I've got in this game, Margaret. I hate letting people down on here. I get them thinking everything's all right. Then I get hit with the truth and we're all thinking: 'Here we go again...'

Even if I end up paying everything myself, it'll only be another year or so to get it done If I've already survived what I have survived, then I can get thru this, too

 

[Bethanyengland]

Don't feel bad

Dear Margaret
Do not feel bad. Your life counts too and i think we have to start to say that to people.
For the person who has Alzheimers they are in bliss. My husband is completely unaware of the cold way he speaks to me, or the actions he takes. It is us that suffer more.
So do not beat yourself up
Take care
Beth 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

 

[Bethanyengland]

Links to Undiagnosed Aspergers or Autism

I have been with my husband for over 18 years. I am convinced that he has suffered from undiagnosed aspirers/autism/OCD now showing itself or being diagnosed as Alzheimers.

I am keen to "understand" for my own sanity I think more than anything the links, if any, as many people I speak to do not believe me. But I know I am right. Luckily i have documented most incidences as at one point my other half tried to convince me that I had Alzheimers and not he!

I cannot lie my life with my husband has been a mixture of joy and difficulty. I have spent most days thinking "it will be ok tomorrow" but tomorrow just got worse and worse.

He was also very controlling and it is only now that we are separated that I can see clearly how unhealthy our relationship was - me clinging to the support of an older man as I had had a damaged childhood/adulthood, he clinging to the support of a younger, positive, lively woman who could "help" him through life.

Right now we have a happy friendly relationship and I want to learn more to help him through his diagnosis.

Somebody asked me the other day - what do I want? I suppose I feel guilty that I did not get him diagnosed sooner but instead buried any issues I saw in him and protected him from himself.

Thank you.

 

[Grannie G]

My son has a feeling we are all somewhere on the Autistic Spectrum.