No longer a carer..

lallysmum

No idea really what I'm saying, so please bear with me.

I have been a full time carer for my mum for the last 15 years (am 34) Over the last 10 years she has gotten progressively worse until the last two when she was diagnosed with dementia and vasculitis. I have never had any respite and was finding it increasingly difficult to cope. (Added to mum I have a 15 year old dd and a 4 year old ds with ASD) The dementia meant that she was/is unremittingly nasty all the time. She was absolutely awful to me.

A couple of week ago she was admitted to hospital with pneumonia. I spoke to the nurses and insisted that she had a care package put in place because I couldn't look after her alone anymore. Upshot was, mum spoke to social services and told them she wanted to go into a care home. This was on the Tuesday. On the Friday night (last week) she was discharged to a care home about 20 minutes drive away.

I have her all settled it, stuff from home, pictures, etc. I bought her a new freeview tv/dvd player. A mobile to call me if she needed to (she used £20 credit in a day so I won't be doing that again, lol)

I spoke to the manager yesterday as mum had spent all day calling me, telling me how much she hated it there, they were trying to kill her, were nasty to her, how I'd abandoned her just so I could take her house (we've lived together in the same house for 13 years, owned jointly) basically being horrible. I asked the manager whether she was settling in ok, and she said that she would but at the moment she wasn't letting herself settle and that I should maybe not visit for a few days. As I say, she went there Friday, I was there Friday, Sat, Sun and Tues. Was going to go today but didn't.

I currently feel like I have abandoned her somewhere she hates and I just can't relax. I can't stop thinking about how she's doing,, whether I've allowed this to happen to be selfish. She's, for wont of a better word, owned my time basically my entire life and now, I don't know. I feel idle, and guilty and awful and like I should be there for her.. just.. Gah. What do I do with myself?

I think it's just that I've never been able to just do as I please and now the sheer idea of it is freaking me out. Has anyone else felt like this?

Savvy_Sue

lallysmum wrote: »

I think it's just that I've never been able to just do as I please and now the sheer idea of it is freaking me out. Has anyone else felt like this?

Not to the same extent, but reading your post I'd say hang on in there girl, get used to your freedom, seize it with both hands!

Obviously with the dementia, what your mother says cannot be relied on. She may indeed hate it, you may even be trying to get the house off her, but it's unlikely that the staff are trying to kill her. However you've had years of her being horrible to you, so if I could gently suggest this, she sounds pretty much like her normal self, doesn't she?

Take the advice of the care home, phone them but don't visit, let your mum's calls go to answerphone, and start to breathe again.

lynnemcf

My gran had dementia and moved in with my mum and dad when I was 7 years old. She took over my bedroom, would take the food off my plate, would grab at my clothes when I was watching TV or reading. She made my mum cry and my dad spent longer and longer at the pub. I guess I am saying this because I am thinking of what it is like for your DD and DS. It wasnt my grans fault but I was afraid of her and angry that she made my mum so unhappy. It is 40 years since she died and my memories of her are all sad ones. My mum would tell me what a lovely gran she was when I was a baby and how she had been a wonderful mum, but I only remember her being sick. Plan some lovely things to do with your kids.

Richie-from-the-Boro

Whatever you see your future as in say 13 weeks from now, you start doing that now, right now.

Given your personal,family,friends and your new found freedom your circumstances, habits, social life will change. You mother also, will, given time change. Both yourself and your mother will have to accept your new circumstance, your mother in particular and her carers in general however will settle to that new role much easier and quickly if there is a well regulated visiting and communicating regime between yourself and your mother. That's why I said 13 weeks in the future, if you think you will ring your mother twice a week on Mon at 7pm and Thur at 7pm, stick to exactly that 1st rule, and the 2nd rule on visiting if its to be once a month or twice a month at 3pm for two hours on each visit stick to that also.

Your mother will settle more quickly if she knows what the rules and boundaries are, and the staff will be able to use the regularity of your calls and visits as a motivator to help settle your parent into a 'looking forward' frame of mind. I agree with both of Sue's points your mother will hate it for months, and your 3rd rule should be that you resit being at the 'beck & call' of your mother by accepting the relentless stream of phone calls that there will surely be in the first 4 or 6 weeks. That too will help your mother settle her new life.

Best to you lallysmum.

picnic

i have no wise words... just good luck and hugs.. im sure everything will work out xxx

mandrose

I just wanted to say that you are a fantastic daughter and I'm sure, in her lucid moments, your mum knows that.

You've given everything to look after your mum, now its the turn of the professionals, who I'm sure will give the best care possible!

Please push any guilt away and start to recapture some of your own life, you really deserve it.

Much love & hugs xx

DavidF

None of us here are going to be able to help with that little voice at the back of your head. Only YOU can fight it. You have just done the right thing for both your mother and yourself. Your mum is ill and it has got to a stage where you cant cope. NO shame in that. Infact you should be proud of what you have achieved thus far. You have come through 15 years of what can be hell. Add to that you two kids have extra needs....You have needs too.

I can't give you a magic pill. But I can tell you that you are not alone. Things will get "better" if you allow it.

Get yourself the help that YOU need to make you feel a little normal again. Just remind yourself that you done you dam best and thats that. No if's no buts.
Remember your mum's anger isnt really directed AT you it is more likely frustration and confusion with a bit of fear thrown in to boot. You are not really the target you are the closest sounding board that she has. She doesn't really mean it.

Remember to start looking after yourself. Or it will be your kids looking after you alot sooner than you would probably want.
Take Care.

lallysmum

Ok, well you all made me cry Thank you so, so much.. I think I expected everyone to lecture me for giving up looking after. I think a bit of me won't be satisfie unless someone does that for some reason. No one family wise has done it, they are all pleased for me and expect me to be suddenly over the moon. I mean, I've been desperate for a year to not do it anymore, but now it's actually happened.. I don't know what to do with it.
I have to say I am absolutely loving the freedom to go out when I want without having to leave her alone and deal with the endless phone calls whilst I am gone. And absolutely loving the being able to take the children out when I want. I even went windowshopping today!
Thank you again.. I'll maybe update in a couple of months and let you all know how we're getting on.

(Oh, and to be fair to her, she hated me from her own bed, so this is not really any different apart from distance, is it?)

Oh, and hey.. as long as I can find one that'll fit in with Ds's school hours (he wouldn't understand or be able to cope with an afterschool childcare thing) I'll even be able to get a job. I've dreamed about working for so long!

thanks all again.

DavidF

Don't forget to cry often and even scream loudly (in private) if you feel the need. It helped me big time. Don't expect miracles from yourself. You wont know what to do with yourself for a while and you will be like a yoyo (up an down) just remind yourself that there is light at the end of the tunnel. One day at a time and one step at a time.

formaldehyde_perfume

I think a good way to cope is to start focusing on your children, being a 'normal' mother as that will fill the massive gap left from the caring of your own mother, then once you are in that frame of mind you will find time for yourself too and relax in to a routine.

Please don't beat yourself up about relinquishing care of her, remind yourself that you still love her deeply and that because you love her and want the best for her, you have taken the responsible decision to let her be cared for by others. This was the best thing for her because you have other responsibilities too which means you couldn't give her the care she needed. You have not abandoned her!

Perhaps you could find a local carers group, now that you (ironically) have the time. Don't feel like you don't belong to that group just because you don't care for your mother day to day any more, you did it for 15 years which certainly makes you a carer, and you also have a child with ASD. You also might be able to help other people experiencing similar things that you have gone through.

Mojisola

lallysmum wrote: »

No one family wise has done it, they are all pleased for me and expect me to be suddenly over the moon. I mean, I've been desperate for a year to not do it anymore, but now it's actually happened.. I don't know what to do with it.

It will take time to readjust. Enjoy the small things and give yourself time to rest and relax.

One problem that some carers can have is that they feel so lost that they find someone else to care for. Make sure you make the space in your life to do your own stuff - you've more than earned it!