I must be a very selfish carer!!!

[JackyS]

Hello Ang57, can i just add to this list of people explaining that you most certainly are not selfish - quite the opposite. But, somewhere, sometime you've lost yourself - and I suspect you find caring a drudge now and get little pleasure from the time you spend with Mum.

You need help. And that's not a sign that you are failing in any way!!

Speak to your local Carers' Org. Get them to do a carer's assessment. Not only can they offer support (the opportunity to meet other carers over a cup of coffee or on a trip out (sometimes with the people you're all caring for), but most can also offer real, practical help (eg funds to get a new washing machine or whatever, carers to come in and give you a break for a night, a massage for you, maybe get your nails done. Small things sometimes, but they can be just what you need to lift your spirits.

And, if you can get help with your caring (the dreaded social services perhaps, or if money isn't an issue just google local caring organisations) - maybe an hour a day (to have that bubble bath suggested) or 2 hours once a week (to join a gym, go for a walk, meet up with old friends, whatever!) - then not only will you start to enjoy the time with Mum again, but you will also be sowing the seeds for the rest of your life.

Because, just like any job, there will come a day when you "retire" (or rather be retired) from the job of caring - and you need to start planning your retirement now, I think. You deserve so much more - take a leap and see what's out there. Good luck and keep posting - we're part of your support team, now xx

 

[Saffie]

Gwen you are so right about saying wise words but not necessarily being wise.

People say I speak with wisdom. It totally amazes me every time because I know I am stumbling along, sometimes going under totally, and sometimes just seeing a chink of light.

Jeanette, you are so right but those who profess to be wise and knowledgeable are so often not. We only learn through our stumblings, our mistakes and attempts to put things right. Those who seem to know it all without going through these, really don't have a clue. You really do have to have been there! X

 

[rajahh]

SAffie this is why I find it so hard reading these " help" books about how to care for Dementia sufferers.

I read them and then tut and swear , and it is then I mutter that I must write a book about carers !!!

Jeannette

 

[Saffie]

I'll await the publication!

 

[garnuft]

Nan2seven has published her book of poems about her life with her husband and Dementia and after it's done.

Amazon has it on Kindle.
Kindle can be downloaded on any internet device.

It is 'The Answer to Life' by Janet Behague.

Publish your story too Jeanette, we all need to hear it. X

 

[rajahh]

If I ever did it it would not be about me

It would be about carers

I have a title


WHO CARES ????

Jeannette

 

[Ang57]

it is up to you to put yourself in the picture and make time for your life...if you trudge on and burn your self out that will help no one

Mum is severely diabetic, she's always suffering 'hypo's. I'd feel guilty if I left her and she ended up in hospital, at home I can never rest easy. Tread on eggshells considering it's Mum's house and her Alzheimers dictates I live by her rules, she's a very strong woman when it comes to what she wants and expects. I agree the way I am living will burn me out eventually though. I just don't know how to solve my problem.

 

[Ang57]

A bubble bath is a nice idea, the only problem is that every time i want to go to the bathroom (for any reason) mum seems to need it as well, and since she is on water tablets i can hardly say wait until i've had a bath!

I have the same problem, if I need to cook Mum's tea, she needs the kitchen. If I want a shower (don't have a bath unfortunately), the same applies. I sometimes creep about so that I can avoid her following me, lol

 

[Ang57]

many elderly people get like that. I have 2 grandparents who are not suffering dementia, and they are somewhat selfish and self centred. They always talk about what ails them, and one of them in particular never seems concerned about anyone else, just himself and his own problems. Every time you see him, he has a list of things he needs you to do, and the list is only ever given one or two items at a time, so that he is requiring us to come regularly and do one or 2 small things (i think in order to get us to come often).

Turning off my phone wouldn't work because I live with Mum to look after her. As you have described above, Mum is exactly the same as your self centred grandparent. She appears to thrive on her illnesses because she gets attention, she is concerned about my Dad with advanced dementia who is in a nursing home. But never about me. Not long ago she insisted that I drag a fridge freezer up and down steps from the kitchen to the garage, because she wouldn't wait one day for me to get help. I hurt myself, but she didn't care. And I guess others will think 'I wouldn't have done it'.......... I did refuse, so she emptied it and started trying to move it herself!!!!!!!

 

[Ang57]

You are not selfish Ang. I'm 60 next month, had so many plans that have all gone out the window! I gave up full time work two years ago to take care of Mum who has AD. This has pretty much crucified me financially. I'm an only child and like you, have no-one else to take off the load from time to time. SS are useless, and I too feel very alone. My Mum is pretty much nocturnal now. Every day its the same old thing, she moans day in, day out, whilst I'm going around clearing up mess and taking care of her every need. It's only guilt that keeps me doing it. I've always had a very turbulant relationship with my Mum (do take a look at my other posts which will give you an insight), and I do sometimes, I'm sorry to say, wish she'd died quickly so I can have my life back. I've already decided that if she's still around when I'm 63 and she'll be 90 I will have to bite the bullet and put her into a care home otherwise I will have no life at all before I'm ill myself. She's a very strong personality and when I try to do things that would help her, I am then nagging her apparently. She refuses day centre and respite. I've got 5 whole days away in May and already she's making nasty comments about it. Tough, I'm going. She can no longer comprehend that I need to escape from her, its not just the case of having a holiday! Take heart that you are not the only one who feels the way you do. Sue.

Gosh you do sound like my twin and soul mate!!! Just knowing that someone else is in a very similar position to me helps so much!! Thank you!!! I'm 55, Dad 81 and Mum 76. Not sure that I will be able to escape at the early age you will, but don't blame you at all. Like you, I'm crucified financially, like you I grew up (suspecting you feel the same) that I wasn't loved by my parents and was actually brought up by grandparents because my parents were so wrapped up in each other. I do love her, and it's why I'm in this position, but also guilt plays a big part too, like you. Mum is very nocturnal too, and is terribly deaf, she keeps me awake loads and then sleeps during the day. I cannot afford a holiday, but do need a rest, I applied for respite (lived with Mum for almost 2 years now, and have been very involved with Dad too), but it's been over 2 months now and have had the assessement only, still waiting for the outcome. Go for it girl!!! Enjoy your holiday, you deserve it!!! Hugs Ang

 

[Ang57]

Hello Ang57, can i just add to this list of people explaining that you most certainly are not selfish - quite the opposite. But, somewhere, sometime you've lost yourself - and I suspect you find caring a drudge now and get little pleasure from the time you spend with Mum.

You need help. And that's not a sign that you are failing in any way!!

Speak to your local Carers' Org. Get them to do a carer's assessment. Not only can they offer support (the opportunity to meet other carers over a cup of coffee or on a trip out (sometimes with the people you're all caring for), but most can also offer real, practical help (eg funds to get a new washing machine or whatever, carers to come in and give you a break for a night, a massage for you, maybe get your nails done. Small things sometimes, but they can be just what you need to lift your spirits.

And, if you can get help with your caring (the dreaded social services perhaps, or if money isn't an issue just google local caring organisations) - maybe an hour a day (to have that bubble bath suggested) or 2 hours once a week (to join a gym, go for a walk, meet up with old friends, whatever!) - then not only will you start to enjoy the time with Mum again, but you will also be sowing the seeds for the rest of your life.

Because, just like any job, there will come a day when you "retire" (or rather be retired) from the job of caring - and you need to start planning your retirement now, I think. You deserve so much more - take a leap and see what's out there. Good luck and keep posting - we're part of your support team, now xx

Thank you for the advise Jacky. I did begin to get out a little for a while. But Mum's physical health now prevents me from doing that unless she is cared for by others. For the last 3 weeks we have had a volunteer from the council who is vetted etc sitting with Mum for a couple of hours on a Friday afternoon. She also goes to a centre every Wednesday, and being honest, I gave up my own home to look after her, so the Wednesday with her not here demanding her rules is wonderful. But it's been going on for so long I've lost most of my friends and on Fridays find myself at a loose end with no one to meet up with. So still lonely and isolated even when I get out without her. Many thanks for being a part of my support team now, it means a lot xx

 

[Ang57]

Ang, maybe you could go to your local library and pick up some leaflets or look on the noticeboard and you might find something sociable to do, a group to join, that you could do while your mum is having her social life.

This is an idea that I will take a look at!! My problem is that only recently do I have some time to myself again, and I don't know where to start looking for friendship and just other people to interact with any longer. Being sceptical, I won't hold my breath that any social events will be at a time when Mum socialises. But definately worth a try though. Thank you!!!!

 

[Ang57]

If I ever did it it would not be about me

It would be about carers

I have a title


WHO CARES ????

Jeannette

I do hope you write your book Jeannette!!! The title is perfect!!! I've read The selfish Pig's Guide, found it helpful to a degree. But I don't think there are enough books out there regarding the carer's perspective on how caring affects us all, good luck, and thank you for your posts.

 

[Ang57]

Thank you to everyone who has replied to my post. There is so much good advise from everyone and I'm very grateful xxx

 

[Ang57]

Long time I know

I tried to find a crack, a puppy for me to take out for only half an hour twice a day, to give me something of a life too. Mum has a full social life, so why not a little for me.

I just replied to a thread on here from a carer who believes that some caree's believe that the carer is some sort of criminal, and I've suffered that for 2 years now. I've done nothing but look after my Mum and have no life any longer, due to my dedication to her and Dad. Yet I've never been able to do enough, or good enough.

Mum is in for a rude awakening, because I've had social service here today telling them that as soon as they have a care package in place for Mum I intend to leave. Despite her calling me terribly, they tried to talk me into continuing living with her, but I held out.

I'm fed up of waking up daily trembling, worrying what she will be saying bad against me next, when it's all in her mind.

Just had enough, during the whole process today, Mum was fine, I was the one crying and trembling due to having 2 years of feeling the need to defend myself against her lies.......... she had my Dad sectioned because she is so good at playing the victim, and even said that she feels like a victim today today to social services, next thing she is saying that she doesn't want me to leave!?

I would have thought that would have given some sort of idea to social services that she's lost the plot, but because she kept insisting, they said they couldn't believe me.......... What???

I only got them involved so that Mum wouldn't be left to suffer for heaven's sake.........

Her wants will never be met, I gave social services a list of her needs that are important, but they cannot even say they will be met..... a lot of different suggestions were made to Mum, but she found a reason to say 'No' to every suggestion by Social Services.

It's not nice when they see for themselves how unreasonable her dementia makes her, yet have to do what she wants even though she's incapable of making decisions in her own best interests.......

As long as I live, I will never understand that social services are a complete waste of time for everyone involved, they seem to think they can make a decision based on an hour!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Scarlett123]

If I ever did it it would not be about me

It would be about carers

I have a title


WHO CARES ????

Jeannette

Well I shall buy it, definitely!

 

[1954]

Ang57

Will you actually go? Leave I mean? Where will you go?

 

[Lowlander]

Ang57
Things sound really awful. Your description of waking up trembling..... Dreadful.
I was just going to say though, you perhaps don't want to be making too many conditions about her needs being met?
If you do leave, there might be financial implications regarding the house.
I know what you mean about having no social life. I spoke to no one but support workers for years. MH was out and about 4 days a week. I felt envious too.
I joined a study group/ course lasting a morning. MH needed extra care and his social worker, a lovely chap, sorted it out for him.
I believe it's important to get out of the house. Get right away.
You might not find friendship, it's a tall order. I found people with a similar interest, a bit of time to chat ... about nothing at all to do with caring (!)

You sound at the end of your tether. Wish I could offer something practical.
L

 

[Grannie G]

Ang57 Please think of yourself now and do the best for you.




Don`t underestimate yourselves Girls. You are all experts at spinning plates, all you need to do is value yourselves a little more.

 

[rajahh]

Having made the stand, don't back down. I agree about not making too many conditions about your mothers care, let as sort that out themselves.

Walk away. This is what I would want my children to do if I became like your mother.

You have Alfie to be lived, go out and live it