New to forum and riddled with guilt.

[Hamilton123]

Hi
This is my first post. I am caring for my mum as best I can. I work full time and need to work as I while I have a partner, I am the primary wage earner. I am also an only child. I have a long commute to work, at least four hours, but go to see my mum as much as I can in the week. I am the carer at weekends. I also do all the unseen stuff, hospital visits, organising carers for the week, looking after her house and finances and all the endless 'sorting stuff out' which seems to go unmentioned when people talk about caring. My mum has a fantastic carer, topped up by Age UK carers so she has someone going in twice a week. She is not too bad in many ways, she knows who everyone is, she sort of dresses herself but wouldn't make a sandwich, often forgets pants etc.

It goes without saying that I love my funny, eccentric, difficult mother dearly but I am struggling. I have raised three kids as a single parent and I have worked hard to get a phd at the same time. I have a job in higher education that I am lucky to have (although it is now threatened by possible redundancy). I don't want to give up my job, I want to have some sort of life. Is that so terrible? I can't go out for the day or go away for a weekend - at least not without enormous anxiety and guilt and organisation and even then it is often cut short by endless crises. So many people on here have given up work and devote themselves to parents with dementia - I feel so guilty at not wanting to be one of them. As it is I feel my life is totally constrained and am struggling not to get depressed. I'm sure this is a familiar story.

 

[Hamilton123]

amendment

That should have read 'she has someone going in twice a day'.

 

[Cat27]

Welcome to TP

Please don't feel guilty. We all have our limits. You already do a lot for your mum without adding more.

 

[Fullticket]

Riddled with guilt

I am being honest and expect a lot of stuff to fall on my head for saying this but...
I started looking after my mum when I realised she wasn't coping. At that time she still lived on her own but when I looked at her bank account I realised, for example, she had five Sky box insurances, she had a 'boyfriend' who virtually cleared her out of money (she paid for his son's wedding!), she was drawing out more money than was going into her account, she was driving off with her handbag on the car roof, etc. etc.
So I started going over to her three times a week (26 miles across London through the Blackwall Tunnel - London residents will know the problems) while still working full time. My brother and I got POA but in reality it was me that dealt with all the problems, the scams, the phone calls. Then I was made redundant and with the approval of my partner we moved her in with us. And then we felt we needed to move because a two bedroomed terraced house in London was not suitable for a woman who was beginning to have mobility problems. And now she lives with us outside of London and although she goes to lots of clubs etc, it is me who takes her, collects her, takes her to the GP, deals with the dirty sheets and the water thrown down the back of the fridge and the cushions thrown in the fish pond.
How do I feel? Trapped, guilty, depressed sometimes, angry sometimes and constantly questioning why I took this on. But what do we do?? Can we honestly leave someone to live in their own ****, give away all their possessions, possibly fall with no-one there to help?
I don't know what the answer is but all I can say is that we are all probably riddled with guilt - damned if we do and damned if we don't.
Sorry, didn't mean to go on, it's been a hard day!

 

[Shedrech]

hi Hamilton 123
a warm welcome to TP
as fullticket says, we are as carers pretty much stuck between a rock and a hard place, very little gives, and there's just no perfect solution, hence guilt can sidle in from any direction
you have every right to make the choices that are the ones you need to make in your own situation - you arrange and monitor your mum's care: she's fortunate to have you looking out for her
it does sound as though you now could do with upping the care, to maybe more home care visits a day and definitely also at weekends (you have enough to do without those as well) - maybe your mum would do well at a day care centre a couple of days; she would have a meal, company and you will know she is safe - and look into a respite stay for her so that you can have a holiday
ask her LA Adult Services for a re-assessment of her care needs
have you got Powers of Attorney in place ... I'm guessing you have if you are already managing your mum's finances
best wishes

 

[LadyA]

all I can say is that we are all probably riddled with guilt - damned if we do and damned if we don't.

And there, Ladies & Gentlemen, is the story being a Carer, whether full time or not, in a nutshell!

Hamilton, first of all, welcome to Talking point! You have certainly come to the right place! Apart from anything else, we have a special, cyber, Guilt Monster Stick which you can use to bash the Guilt Monster!

As for giving up everything to be full time carer for your mum as others have done, well, everyone's circumstances are different. Believe me, a person needs to think very carefully, and with their head, not their heart, about this. Frankly, the State will not be any way thankful to you, or any way understanding when, once your caree has passed on, you are there with no job, no income, no home. They are not going to say "Oh yes. In view of the fact that you saved us so much money by giving up your entire livlihood and life to caring for your loved one, we will now give you an allowance of £... per week for so long, and ensure you have a roof over your head. It will be "How soon can you get a job, any job? You've been a full time carer? Then you could work with a Care Agency, couldn't you?" and if you give up your own home and move in with a parent, remember that if they need to go in to full time care, their home might need to be sold to pay for their care, leaving you homeless, unless you meet very particular criteria.

You have worked very hard to achieve what you have. Caring for someone does not always mean doing the hands on, day to day stuff. It can mean being the one who pays for the extra care, who organises the stuff. And, as has been said, you are already doing an awful lot, as well as working with such a long commute. Whack that Guilt Monster hard! It has no business with you!

 

[marionq]

I'm posting as a sole and full time care for my husband but I'm also mother to three daughters in their forties. They have worked hard for their careers and we worked hard with them every step of the way. I would rather die than have my daughters give all that up to be a carer for me and I bet your mother would too.

Now I'm not suggesting you or anyone else neglects their parents but we have to be practical about what we can and can't or shouldn't do. Don't give up your career it will destroy you. The boredom and frustration is worse than looking after toddlers because there are few if any rewards and little or no progress.

I have just been out for a walk with my husband on a beautiful sunny night and I could see the pity in the eyes of passersby as he staggered and stumbled doubled up and frail. My shoulder is nearly out of its socket supporting him. I do this because I can. When I can't do it anymore I will make other arrangements but not involving the sacrifice of my daughters.

 

[Hamilton123]

And there, Ladies & Gentlemen, is the story being a Carer, whether full time or not, in a nutshell!

Hamilton, first of all, welcome to Talking point! You have certainly come to the right place! Apart from anything else, we have a special, cyber, Guilt Monster Stick which you can use to bash the Guilt Monster!

As for giving up everything to be full time carer for your mum as others have done, well, everyone's circumstances are different. Believe me, a person needs to think very carefully, and with their head, not their heart, about this. Frankly, the State will not be any way thankful to you, or any way understanding when, once your caree has passed on, you are there with no job, no income, no home. They are not going to say "Oh yes. In view of the fact that you saved us so much money by giving up your entire livlihood and life to caring for your loved one, we will now give you an allowance of £... per week for so long, and ensure you have a roof over your head. It will be "How soon can you get a job, any job? You've been a full time carer? Then you could work with a Care Agency, couldn't you?" and if you give up your own home and move in with a parent, remember that if they need to go in to full time care, their home might need to be sold to pay for their care, leaving you homeless, unless you meet very particular criteria.

You have worked very hard to achieve what you have. Caring for someone does not always mean doing the hands on, day to day stuff. It can mean being the one who pays for the extra care, who organises the stuff. And, as has been said, you are already doing an awful lot, as well as working with such a long commute. Whack that Guilt Monster hard! It has no business with you!

Not quite sure I am doing this right! But thank you for this, your response is so helpful - reasoned and useful. Thank you.

 

[Hamilton123]

I'm posting as a sole and full time care for my husband but I'm also mother to three daughters in their forties. They have worked hard for their careers and we worked hard with them every step of the way. I would rather die than have my daughters give all that up to be a carer for me and I bet your mother would too.

Now I'm not suggesting you or anyone else neglects their parents but we have to be practical about what we can and can't or shouldn't do. Don't give up your career it will destroy you. The boredom and frustration is worse than looking after toddlers because there are few if any rewards and little or no progress.

I have just been out for a walk with my husband on a beautiful sunny night and I could see the pity in the eyes of passersby as he staggered and stumbled doubled up and frail. My shoulder is nearly out of its socket supporting him. I do this because I can. When I can't do it anymore I will make other arrangements but not involving the sacrifice of my daughters.

Thank you. I'm very glad I joined this forum, what you have said means a lot to me and I'm sorry you are having such a difficult time yourself.

 

[Hamilton123]

I just want to thank those who have posted. New to the forum and grateful for support and sensible, wise words. I cannot tell you how much I appreciate your help.

 

[Hamilton123]

hi Hamilton 123
a warm welcome to TP
as fullticket says, we are as carers pretty much stuck between a rock and a hard place, very little gives, and there's just no perfect solution, hence guilt can sidle in from any direction
you have every right to make the choices that are the ones you need to make in your own situation - you arrange and monitor your mum's care: she's fortunate to have you looking out for her
it does sound as though you now could do with upping the care, to maybe more home care visits a day and definitely also at weekends (you have enough to do without those as well) - maybe your mum would do well at a day care centre a couple of days; she would have a meal, company and you will know she is safe - and look into a respite stay for her so that you can have a holiday
ask her LA Adult Services for a re-assessment of her care needs
have you got Powers of Attorney in place ... I'm guessing you have if you are already managing your mum's finances
best wishes

I do have POA and yes, you're right I need to prioritise a day centre which she would like - particularly if there are men at it (dementia dating?). Thank you.

 

[theunknown]

You have far too much on your hands. If you can cope with it ok, but you really need to put yourself first in order to help others. You're doing plenty.

 

[Pickles53]

I'm posting as a sole and full time care for my husband but I'm also mother to three daughters in their forties. They have worked hard for their careers and we worked hard with them every step of the way. I would rather die than have my daughters give all that up to be a carer for me and I bet your mother would too.

Now I'm not suggesting you or anyone else neglects their parents but we have to be practical about what we can and can't or shouldn't do. Don't give up your career it will destroy you. The boredom and frustration is worse than looking after toddlers because there are few if any rewards and little or no progress.

I do this because I can. When I can't do it anymore I will make other arrangements but not involving the sacrifice of my daughters.

So poignant and very well said Marionq. I don't know any parent who would want their child to sacrifice their own life and future. I've told my only daughter many times: spend as much if money as you need to but do not feel guilty about paying carers or care home fees if that's what is needed to keep me safe. Just come and spend time with me. I want you to be my daughter, not my personal carer.

 

[jknight]

Welcome, Hamilton! This is a wonderfully supportive community! I wouldn't survive without Talking Point xxx

 

[Lawson58]

Hi
This is my first post. I am caring for my mum as best I can. I work full time and need to work as I while I have a partner, I am the primary wage earner. I am also an only child. I have a long commute to work, at least four hours, but go to see my mum as much as I can in the week. I am the carer at weekends. I also do all the unseen stuff, hospital visits, organising carers for the week, looking after her house and finances and all the endless 'sorting stuff out' which seems to go unmentioned when people talk about caring. My mum has a fantastic carer, topped up by Age UK carers so she has someone going in twice a week. She is not too bad in many ways, she knows who everyone is, she sort of dresses herself but wouldn't make a sandwich, often forgets pants etc.

It goes without saying that I love my funny, eccentric, difficult mother dearly but I am struggling. I have raised three kids as a single parent and I have worked hard to get a phd at the same time. I have a job in higher education that I am lucky to have (although it is now threatened by possible redundancy). I don't want to give up my job, I want to have some sort of life. Is that so terrible? I can't go out for the day or go away for a weekend - at least not without enormous anxiety and guilt and organisation and even then it is often cut short by endless crises. So many people on here have given up work and devote themselves to parents with dementia - I feel so guilty at not wanting to be one of them. As it is I feel my life is totally constrained and am struggling not to get depressed. I'm sure this is a familiar story.

There are numerous people on TP who admit to feeling guilty about what they can or cannot do for their loved ones, and feel that their obligations should override everything else.

But I always wonder if the guilt exists because of how much resentment and anger we feel about how this disease affects our own lives, when you have worked so hard for what you have only to be deprived of your goals and ambitions through no fault of your own.

As carers we so often lose sight of our own needs or we try and bury them. But it is never selfish or wrong for us to have those needs met and we all need to remember that being a carer doesn't define who we are. You are a mother and a daughter but you also have a profession that you enjoy and that provides you with an income.

Finding the balance is not always easy but it is responsibility that you have to yourself and your family. There's the old saying that says you can't light a fire under yourself to keep another person warm but it happens to some of us as carers.

A huge percentage of carers suffer with depression at some, me included. Perhaps you need to get a little help for yourself so that when the time comes to make a decision you can do it in the right frame of mind.

I wish you peace and strength.

 

[Al-4]

Don't feel guilty you are doing really well. I have a brother and sister and although we all do our share of caring each of us feels the pressure now and then. I say this as it must be really difficult with no siblings to share with the caring. You need to find out about all the help you can get over and above the twice daily visits in order to give yourself some rest. A good social worker can provide you with information on local organisations. Alzheimers Scotland or Alzheimers UK are also good sources of information like day care centres and befriending services. Both Social workers and Alzheimers UK/Scotland can also give good advice on other matters like welfare in the home, finance, monitoring devices etc. You may have to pay for some of the services but the costs are reasonable and the main thing is that they'll give you some needed space accompanied with peace of mind. As long as your mum goes along with whatever you choose to put in place it will benefit her to.

Sent from my GT-I9505 using Talking Point mobile app

 

[Al-4]

I meant to say in the last post about hiring a cleaner which would free up a bit of time also.

Sent from my GT-I9505 using Talking Point mobile app

 

[Rosnpton]

Hi
You need to keep working if only to have your own identity as a person in their own right and not 'just a carer'- and I don't mean that as a derogatory comment.
I'm currently off work with stress and anxiety -normally work full time but shifts.
Mum is in ch but recently lots of major problems to sort. Also,dads carer- he lives in own home but needs shopping washing done appointments sorted etc- we did get him to agree to a cleaner finally.husbands company shutting down end may,so will be redundant.
I thought I was managing fine until at work,the same week as dealing with another crisis which meant rushing out off work 2 days in the same week and not getting back for several hours, I had my annual appraisal. I'd gone from 'exceeding all targets and on route for promotion' 6 months ago to 'met targets.needs to improve overall commitment to work'. Husband,not realising I'd had appraisal and been at ch again (he works nights) commented that at our age-mid 50s- and with our girls both settled he had hoped we would be spending time together,having holidays and days out.not spending all our spare time sorting out our parents!
Work is my escape from caring duties,and I was so shocked to be told I was being side stepped,and need to pull myself together etc I went to gp.who said I was to take a month off and 'try and sort out a support network to help with mums care and get my head back in order'! I was expecting a tablet,pep talk, and back next day.
I took sick note in to work,wanting to talk with my manager etc,and a 'colleague' said wasn't I lucky to get a month off in spring when I know we will be busy.
It just shows how little others comprehend the stuff carers have to do.ok-mums is in a ch,but it still means visits are made,problems dealt with,dads shop done etc etc.and trying to motivate husband re looking for a new job when worked in same company 35years.
Keep your own life as much as you can, having given up a lot to care for mum when she was at home- and I wanted to help her as long as possible-I have found friends are now few and far between. You can only cancel days out so many times before you get missed off the list.
Thinking of you
Ros

 

[Hamilton123]

Hi
You need to keep working if only to have your own identity as a person in their own right and not 'just a carer'- and I don't mean that as a derogatory comment.
I'm currently off work with stress and anxiety -normally work full time but shifts.
Mum is in ch but recently lots of major problems to sort. Also,dads carer- he lives in own home but needs shopping washing done appointments sorted etc- we did get him to agree to a cleaner finally.husbands company shutting down end may,so will be redundant.
I thought I was managing fine until at work,the same week as dealing with another crisis which meant rushing out off work 2 days in the same week and not getting back for several hours, I had my annual appraisal. I'd gone from 'exceeding all targets and on route for promotion' 6 months ago to 'met targets.needs to improve overall commitment to work'. Husband,not realising I'd had appraisal and been at ch again (he works nights) commented that at our age-mid 50s- and with our girls both settled he had hoped we would be spending time together,having holidays and days out.not spending all our spare time sorting out our parents!
Work is my escape from caring duties,and I was so shocked to be told I was being side stepped,and need to pull myself together etc I went to gp.who said I was to take a month off and 'try and sort out a support network to help with mums care and get my head back in order'! I was expecting a tablet,pep talk, and back next day.
I took sick note in to work,wanting to talk with my manager etc,and a 'colleague' said wasn't I lucky to get a month off in spring when I know we will be busy.
It just shows how little others comprehend the stuff carers have to do.ok-mums is in a ch,but it still means visits are made,problems dealt with,dads shop done etc etc.and trying to motivate husband re looking for a new job when worked in same company 35years.
Keep your own life as much as you can, having given up a lot to care for mum when she was at home- and I wanted to help her as long as possible-I have found friends are now few and far between. You can only cancel days out so many times before you get missed off the list.
Thinking of you
Ros

I understand. The endless round of things to sort out... hospital visits to make, care to establish or change, medications that aren't delivered or are wrong, financial stuff, shopping to get etc etc etc is overwhelming and unacknowledged. My work has been sympathetic but now the possibility of redundancy has raised it's head and I feel that I can't be seen to be asking for any special treatment. My partner also is 'depressed' because of our situation, can't go away for a weekend, can't go out for the day. I just want to say 'well you can go out as much as you want!'. I often find it difficult to read about other people's experience on here as so many people are living with relatives with dementia and I feel that my experience is so much easier - it is but I am really struggling nevertheless.

 

[Rosnpton]

Hi
I do hope you are able to continue work,and support your pwd as much as you can.
I took a print out about carers rights- care fact sheet for employers from 'dementia action.org.uk. ' Sorry,don't know how to put the link
It is a study from companies -one being British gas- about the extra problems carers for dementia sufferers may experience.
I've got a councelling session tomorrow- another thing work said I had to do before being allowed back.
I am dreading going back 1june-not because I dont want to be at work-I'd rather be there right now-but because I rather think the expectation will be that the month off will have sorted everything out,and I will be back to working a full shift with no time out to answer another call etc
Sending you best wishes and a hug
Ros

I understand. The endlessround of things to sort out... hospital visits to make, care to establish or change, medications that aren't delivered or are wrong, financial stuff, shopping to get etc etc etc is overwhelming and unacknowledged. My work has been sympathetic but now the possibility of redundancy has raised it's head and I feel that I can't be seen to be asking for any special treatment. My partner also is 'depressed' because of our situation, can't go away for a weekend, can't go out for the day. I just want to say 'well you can go out as much as you want!'. I often find it difficult to read about other people's experience on here as so many people are living with relatives with dementia and I feel that my experience is so much easier - it is but I am really struggling nevertheless.