No longer a carer..

lallysmum

Just thought I'd add a small Christmas update.

Well, I'm 6 weeks on from mum going, and oh my goodness, life has changed. I suppose it took about 4 weeks for me to properly calm down and stop worrying so much about her. But I finally realised that she is settled, well looked after and as happy as she is ever going to be. And wow, my life has changed.

DS (ASD) is coming on leaps and bounds now we have proper 1 to 1 time. He's just a little star. We can pop out to soft play, or MacDonalds (he doesn't eat anything but bread and butter, finally ate a bite of a fish finger, lol) or even just sit cuddled up on the sofa watching a movie.

A little part of me was starting to think that I had some sort of heart condition as I kept getting palpitations, turns out it must have been stress as I haven't had any for a couple of weeks. My excema has just about cleared up. I have NO black bags under my eyes! None! I can go to sleep when I want, no more up 4/5 times a night after going to bed at 2am. I'm asleep by 9.30 most nights.

And yesterday, for the first time ever, I threw a party. In our house for my soon to be 5 year old. Noise, people (just family) and lots of food, without having to keep everyone quiet in case they disturbed mum, or run up and down stairs 50 times. It was brilliant.

Thanks again to everyone who said that it would get better. I can't believe the difference in our lives now. I suppose I'll always feel a bit guilty, but I now know that I have done my bit. She got 20 odd years of me looking after her, now it's my turn to ... well.. do whatever I want, ;lol. Now if I could just win the lottery!

Richie-from-the-Boro

Freedom & liberty is in the hearts of all people, achieving it however is sometimes difficult with the pressures of this modern society. You lallysmum, earned yours the hard way, an unselfish 15 sustained years of putting others before yourself.

I'm pleased you have taken such positive outcomes from your new circumstance, things really are on~the~up for you and your family, the best to you lallysmum

Jojo_the_Tightfisted

You've been imprisoned for 15 years.

Enjoy your freedom without guilt.


I look at my daughter (12) and I would hate to have her give up a future and a fulfilling life to wipe my arze or remind me who she was ten times a day. I would rather she put me in a home - or better still, for me, get me a gun to shoot myself with before I lost all capacity to reason.


A good mother wouldn't expect it of their child before they got ill - once they do get ill with such a vile disease, well, they aren't anyone's parent, I'm afraid, in my opinion.


To give you an idea of what your bravery - in admitting you cannot and will not endure this anymore - a friend cared for her mother who had exactly the same. She took until she was 86 years old to die. So my friend lived with her, her marriage never lasted as she was always having to return to help her mum, and amongst other things she did, she hated cleanliness. The flat would be cleaned and two days later, she would have systematically smeared food, the contents of the bin and eventually, human filth over every wall.

My friend's partner (who had the patience of a saint and spent hours cleaning the flat) had immune problems due to liver disease - he died of septicaemia at the age of 42 following her scratching him as he tried to stop her attacking my friend for wanting to leave the flat for a neurology appointment (she has MS).

So now my friend is alone, ill with MS and has nothing to look back on other than memories of being shouted at and kept inside as a fully grown woman for years due to her mother's medical condition.



You are not a bad person - you have done your time and you are now free. And thankfully, you haven't had to live the life my friend had.

Mojisola

Jojo_the_Tightfisted wrote: »

You are not a bad person - you have done your time and you are now free. And thankfully, you haven't had to live the life my friend had.

Jojo - that's such a sad story and, like you, I'm glad lallysmum is enjoying this new stage of life.

I'm my parents main carer and have gradually had to increase the amount of paid carers coming in to them because I was making myself ill. Although I will do what I can for them, I do have limits and know there may be time when we have to look at residential care. As long as I can find a home where the care is good, I won't feel guilty about it.

I think, even now, if they realised the impact caring on them has had my own family life and health, they would feel awful and they certainly wouldn't want me to increase the load.

I talk to my children about it because I don't want them to get stuck in the same situation caring for my and OH.

CrazyRed

Jojo_the_Tightfisted wrote: »

You've been imprisoned for 15 years.

Enjoy your freedom without guilt.



To give you an idea of what your bravery - in admitting you cannot and will not endure this anymore - a friend cared for her mother who had exactly the same. She took until she was 86 years old to die. So my friend lived with her, her marriage never lasted as she was always having to return to help her mum, and amongst other things she did, she hated cleanliness. The flat would be cleaned and two days later, she would have systematically smeared food, the contents of the bin and eventually, human filth over every wall.

My friend's partner (who had the patience of a saint and spent hours cleaning the flat) had immune problems due to liver disease - he died of septicaemia at the age of 42 following her scratching him as he tried to stop her attacking my friend for wanting to leave the flat for a neurology appointment (she has MS).

So now my friend is alone, ill with MS and has nothing to look back on other than memories of being shouted at and kept inside as a fully grown woman for years due to her mother's medical condition.



You are not a bad person - you have done your time and you are now free. And thankfully, you haven't had to live the life my friend had.

Jojo, what a shock to see your friend's story - so much of which I can relate to from personal experience with my own mother. You friend's father's death at that age too, shocked me - my own Dad passed away at 48 from virtually the same things.

To the OP - I can only echo Jojo's heartfelt post above. Please don't feel guilty - for years you've given yourself selflessly to another who has rarely appreciated your efforts, and done your level best for them at enormous personal and emotional cost.

Enjoy your new-found freedom - you've more than earned it. It's a hard, unappreciated life as a carer, with little thanks but you've made the right decision, and your quality of life can only but improve from here on in. It sounds as though you've made a fantastic start and I really hope that things continue positively for you all.

debtfreenow

Just come across this thread and just wanted to say "Congratulations to you O.P. on being free at last to get on with your life".

Your experience has only served to confirm what I have always known (ie that I simply couldn't be a carer myself). I have read far too many experiences of how hard it is for people who are carers to ever consider being one myself.

I am feeling very nervous, as my mother is steadily getting more and more ill and is basically housebound. If my father dies, then she will be living on her own without any transport.

I have my own house, which is near enough to go and visit, but not to pop in on a daily basis and don't have any transport myself.

Fortunately, she has good neighbours, who give them lifts to hospital appointments on occasions my father can't drive. Her regular supermarket is a reasonably cheap distance away by taxi (so she could get there and back if need be that way). The house is modern and therefore pretty easy to care for and they have a gardener come in occasionally for the odd bit of maintenance work required on that.

It's started to look rather to me as if they have all along regarded me as a potential "carer" if required, but I am not the sort of person to be a "carer" and have my own life to lead. I have loads of interests I have been waiting for enough time to persue these interests and am scared that it feels as if they see My Life as expendable in the cause of being a carer if required.

I am a decent/normal sort of person and do visit regularly and can do odd things (when there) if required. So anything a bit more "strenuous" (like cleaning the top of cupboards/taking curtains up and down/etc) could be left for me to do. I couldn't deal with any "taking to non-local medical appointments"(because of not having any transport)/"doing the level of housework my mother expects her house done to" (her standards are too high and I have A Life to lead)/etc.

I've worked so hard over the years that I am thoroughly looking forward to having some more time of my own soon and now find that they seem to have these "expectations" as to how they will fill my time for me!

Obviously, I want to know my mother has what she needs on the one hand. On the other hand I have A Life to lead. There must be a lot of other people in similar situations, so I would be interested to know what tips people have for ensuring a relative has what they need on the one hand, whilst still maintaining A Life themselves on the other hand.

So, as stated, the gardening is already dealt with and the shopping could be dealt with pretty easily (those taxis). So, that leaves any everyday type housework my mother couldn't manage (probably along the lines of how to persuade her that cleaning a whole house only takes about 2 hours once a week and she would have to accept it simply wouldn't be done to her standards, because her standards are "unachievable" by anyone else). Fingers crossed there would never be any "personal care" needs arising, as I know I definitely couldn't even think of anything like that, so someone else would need to do it. Who would the "someone else" be if it came to it and how would this person's wages be covered (as my parents aren't well off)?

Sorry to leap in on someone else's thread with my own queries here, but I couldn't see a "How to ensure someone's needs are dealt with, without becoming a carer oneself" thread/website or anything else on either this Forum or the Web as a whole, even though I'm sure this must be a common problem.

Mojisola

debtfreenow wrote: »

Sorry to leap in on someone else's thread with my own queries here, but I couldn't see a "How to ensure someone's needs are dealt with, without becoming a carer oneself" thread/website or anything else on either this Forum or the Web as a whole, even though I'm sure this must be a common problem.

It would be worth starting a thread with that title! It's an issue that is going to affect a lot more people as the post-war population bulge gets to the stage of needing help.

I am a carer for my parents. It's easy to just slip into it. I live near them - my siblings don't. I wasn't working because of my health and my siblings had full-time jobs so I was "available". I wanted to keep them at home as long as possible because they wanted it and it would be very difficult for family to visit regularly if they had to pay for a hotel.

Things started off in small ways but the time I needed to spend with them gradually increased. It was only when I realised that my own health was deteriorating because of the time I was spending with them that I had to take a step back and start employing carers to do some of the care.

My husband and I are very aware of the effect it has had on our lives and we are hoping that we can manage our needs as we get older so that we don't suck our children into giving up part of their lives to look after us.

Newly_retired

debtfreenow - despite your best laid plans, there may come a time when the neighbours start to get in touch with you a bit more to express their concerns for your parents. They are on the spot and will see their needs on a regular basis. They cannot be responsible for your parents, however helpful they may wish to be. My parents' neighbours contacted me, when I worked full time and, apart from visiting about every 2 weeks and doing what I could whilst there, it was not easy and whilst I did not feel guilty, I felt very concerned. I lived 80 miles away, so couldn't visit more often.
To cut a long story short, just before Dad died, Mum said that if he died before her, she would like to go into a care home. It made decisions so much easier, her having said that. She enjoyed 7 really good months in a care home before she later died.
Like you, I could not have been a carer.
I am so grateful to my parents for not expecting me to. I too had my own life to lead.
But it is vital that elderly parents' needs are met - and it is not the neighbours' responsibility. Their phone calls were a wake-up call to me, that all was not well.
I do not have any easy answers.
I wish you well.

LolitaLove

lallysmum wrote: »

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?

You've spent your whole life devoting yourself to your mum. You are a good - no, a fantastic daughter. You have given more than enough. Now it's time for you.
Dementia is a cruel disease. Try not to take what your mum says to heart. I'm sure there is no truth to what she says - especially that the care staff are trying to kill her! But, for the last fifteen years, your mum has had you there for her. Now she hasn't, and it'll take some getting used to. She might rant, rave and scream, make threats....but she will eventually get used to it. As much as you might want to care for her, it's not fair. Dementia is a tough disease to deal with, and requires 24/7, full on care...it's so demanding. If you tried to care for your mum, you'd end up physically, mentally exhausted and with low confidence etc from the verbal abuse...and then what will happen to your children...they need a strong mum.
Everyone deserves a life. You deserve a life. Maybe when other people your age were going to college/uni or pubs/clubs you were devoting yourself to your children and mum. Now it's time to devote yourself to you.
Explain to your mum that you love her, and will always be there for her. Ignore her threats etc....don't reward them with attention. Visit but keep your visits brief...orientate your mum to the date/time, and maybe bring a little gift each time so she looks forward to your visits and sees them as a treat.
Sounds as though your kids are growing up soon so you do have to look to the future now sweetie. Why not start by making a list of all the things you wanted to do....when you finished school, what was your plan? You can go back to college....contact a local college for part time courses you can work around the kids school times. Make friends at these courses if you can and schedule in a night out once a week. Explore who you are as a person. Maybe you could get a job in care work...you have enough experience! Maybe you couls train as a social worker, or a nurse? It's entirely up to you, you know what you want out of life....it's just a case of finding out what it is you want and then taking steps towards achieving it.
Just remember, everyone does deserve a life. You've devoted enough of your time to caring for others. Now it's time for you. There's a big wide world out there...go get it Hope this helps x

LolitaLove

debtfreenow wrote: »

Just come across this thread and just wanted to say "Congratulations to you O.P. on being free at last to get on with your life".

Your experience has only served to confirm what I have always known (ie that I simply couldn't be a carer myself). I have read far too many experiences of how hard it is for people who are carers to ever consider being one myself.

I am feeling very nervous, as my mother is steadily getting more and more ill and is basically housebound. If my father dies, then she will be living on her own without any transport.

I have my own house, which is near enough to go and visit, but not to pop in on a daily basis and don't have any transport myself.

Fortunately, she has good neighbours, who give them lifts to hospital appointments on occasions my father can't drive. Her regular supermarket is a reasonably cheap distance away by taxi (so she could get there and back if need be that way). The house is modern and therefore pretty easy to care for and they have a gardener come in occasionally for the odd bit of maintenance work required on that.

It's started to look rather to me as if they have all along regarded me as a potential "carer" if required, but I am not the sort of person to be a "carer" and have my own life to lead. I have loads of interests I have been waiting for enough time to persue these interests and am scared that it feels as if they see My Life as expendable in the cause of being a carer if required.

I am a decent/normal sort of person and do visit regularly and can do odd things (when there) if required. So anything a bit more "strenuous" (like cleaning the top of cupboards/taking curtains up and down/etc) could be left for me to do. I couldn't deal with any "taking to non-local medical appointments"(because of not having any transport)/"doing the level of housework my mother expects her house done to" (her standards are too high and I have A Life to lead)/etc.

I've worked so hard over the years that I am thoroughly looking forward to having some more time of my own soon and now find that they seem to have these "expectations" as to how they will fill my time for me!

Obviously, I want to know my mother has what she needs on the one hand. On the other hand I have A Life to lead. There must be a lot of other people in similar situations, so I would be interested to know what tips people have for ensuring a relative has what they need on the one hand, whilst still maintaining A Life themselves on the other hand.

So, as stated, the gardening is already dealt with and the shopping could be dealt with pretty easily (those taxis). So, that leaves any everyday type housework my mother couldn't manage (probably along the lines of how to persuade her that cleaning a whole house only takes about 2 hours once a week and she would have to accept it simply wouldn't be done to her standards, because her standards are "unachievable" by anyone else). Fingers crossed there would never be any "personal care" needs arising, as I know I definitely couldn't even think of anything like that, so someone else would need to do it. Who would the "someone else" be if it came to it and how would this person's wages be covered (as my parents aren't well off)?

Sorry to leap in on someone else's thread with my own queries here, but I couldn't see a "How to ensure someone's needs are dealt with, without becoming a carer oneself" thread/website or anything else on either this Forum or the Web as a whole, even though I'm sure this must be a common problem.

As I said to the OP, everyone deserves a life. You shouldn't feel guilty, as if you started to care for your mother when you didn't want to, you might start to resent it and it could have a negative affect on your relationship.And no-one knows what could happen in the future...it's best to stay on good terms, none of us are guaranteed tommorow.
Why not try contacting the elderly care department of your local social services? They could point you in the direction of charities etc that can help. For example, age concern provide low cost/free meals to the elderly, and day centres, activities, lifts etc. Many hospitals have charitable schemes to help people with limited mobility get to and from hospital. They have volunteer drivers pick people up in cars. Why not look into that, see if she can get transport that way?
It might be worth, if you can afford it, paying a cleaner to go in for a few hours a week. Your mum might not be so demanding of a cleaner! It's easier to be more demanding and expect more of family/people we know well, so maybe your mum will be happy with the cleaner's work.
If you contact social services they can also help to arrange a package of care should your mum need it. Things like personal care etc are a bit personal for family to help with: social services can arrange one, two or three call outs a day for example, where carers come in and help your mum to wash/dress etc.
If your mum wishes social services can also help with finding a care home. Who pays the fees will depend on your parent's assets...the cost will be covered by the local authority and your mum, on a sliding scale I think...e.g the more assets they have the more they pay. I'm not too sure...social services should be able to help you, citizen's advice or maybe even age concern/an older person's charity.
Another thing to think about could be sheltered accomodation. Your mum could still have her independence, but there is the warden to watch over everyone and check everyone is okay. There's coffee mornings, and a little community within the accomodation, and the warden will help with things like organising transport. That is of course if your mum is happy to leave her home. If she isn't, carers would probably be your best bet.
As I said, contact social services and they'll let you know what's available to you. Hope this helps!