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I just want to run away and never come back

RedShoes23

Registered User
Jun 1, 2017
3
I’m crying my eyes out writing this, in fact writing this was my last resort as no one knows what I feel apart from you all.

When Mum started getting unwell, I went through my “boohoo in early twenties and my mum is careless about me and my stuff and doesn’t care like she used to” phase. It was hard coming home and my mother didn’t care about my graduation or new jobs or achievements. I know she cares and this isn’t her, but at the time it hurt me. I took it to heart.

I came home for xmas and New Years after not seeing her for a few months (she lives alone but in an older people’s property) and it just hit me all over again just how much she is changing. She comes across as very bitter and has nothing good to say about anyone. She sometimes says things that make no sense, or she mixes up words or even lies about things. And sometimes it seems like she’s just difficult for the sake of being difficult.

This evening I shouted at her and I feel so guilty and upset about it. I shouted because I was scared. She had an iron and was trying to iron some new curtains and put water inside the iron as you normally do BUT the iron was faulty and leaked and I just LOST MY MIND out of fear for her and talked down to her, shouting “what is wrong with you!!!” And she got up and sat in the other room and I felt awful. I have managed this whole visit without raising my voice and tonight I screwed up.

It is SO HARD. I try and try to bite my tongue, to not question her when she says weird things, to not take it to heart when big events happen in my life and she’s more interested in what happens in her tv soaps. I really do. But tonight I just lost it.

I really feel like I just want to run away and never come back. I won’t ofcourse. She is my mother and I love her. I just don’t know how to cope when I come home anymore.
 

RedShoes23

Registered User
Jun 1, 2017
3
Another thing I forgot to say... I live abroad as I work abroad, so I don’t get to visit a lot (only Easter, summer, Christmas and the odd weekends but I call every day without fail)

I was once told I should quit my job and move back to take care of her...

I know this is selfish but mentally I don’t think I can. I’m battling depression, awful anxiety (I’ve gotten to the point I have panic attacks in work) and I honestly think I’d end up doing harm to myself if I moved back into this environment permanently. Is that selfish?

She is still able to be independent right now and I have an older sister living about an hour away in the same county.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
New South Wales Australia
Another thing I forgot to say... I live abroad as I work abroad, so I don’t get to visit a lot (only Easter, summer, Christmas and the odd weekends but I call every day without fail)

I was once told I should quit my job and move back to take care of her...

I know this is selfish but mentally I don’t think I can. I’m battling depression, awful anxiety (I’ve gotten to the point I have panic attacks in work) and I honestly think I’d end up doing harm to myself if I moved back into this environment permanently. Is that selfish?

She is still able to be independent right now and I have an older sister living about an hour away in the same county.
Hi red shoes
Don’t be so hard on yourself - I think everyone looses it sometime! When my husband was very poorly I turned our bed around so he could see the bathroom if he stood up- that worked - but he couldn’t find his way back - I totally lost it one night when he kept trying to get into the bottom of the bed and not the top - “why can’t you see the pillows ????” I was yelling - and our dog started crying - it was about 3 am .
It’s not easy - All the best MJoy
 

Dayperson

Registered User
Feb 18, 2015
277
Shropshire
Hi RedShoes23, I know how tough it is, I am in my 30s but living at home and caring for mum with Alzheimer's and dementia.

It's not easy to see your mum behave like that and it has also affected me mentally and made me depressed. It sounds like you need some kind of professional help. Have you spoken to your doctor about your depression? Maybe they could help or refer you to a councilor.

Someone made me feel guilty for having a life and neglecting mum but now I realise I should not worry about being selfish. You sound like you're doing a lot for your mum, you're entitled to a life too.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
I have been keeping an eye on this thread...and I have a theory...there are not many replies, because you have been brave enough to say what a lot of us are thinking. We all want to run away and never come back. It is SO hard. But because we don’t have that option, we just have to do the best we can. And I don’t mean that to be an empty platitude. We do the best we can...and we get help for what we cannot do. And what we cannot...and someone your age SHOULD not do, is give up your whole life to care for somebody else.
Sometimes the best we can do, is to arrange for someone else to do the caring. If 24 hour care at home is impossible, then the best we can do is a care home. If a PWD is waking every night...then the best we can do is to arrange for some help, so that the carer gets some nights proper sleep.
The best is not always what we would choose, but what the situation demands.
 

DeMartin

Registered User
Jul 4, 2017
711
Kent
Another thing I forgot to say... I live abroad as I work abroad, so I don’t get to visit a lot (only Easter, summer, Christmas and the odd weekends but I call every day without fail)

I was once told I should quit my job and move back to take care of her...

I know this is selfish but mentally I don’t think I can. I’m battling depression, awful anxiety (I’ve gotten to the point I have panic attacks in work) and I honestly think I’d end up doing harm to myself if I moved back into this environment permanently. Is that selfish?

She is still able to be independent right now and I have an older sister living about an hour away in the same county.
I moved back to England because my parents were getting frail, it took a long time to stop resenting the lost of my friends and social life. Both parents are in residential care, and I’ve rebuilt my social contacts. They are mostly happy, company, good food, no stress of maintaining a home, and I can visit and enjoy their company, and not have constant worry. Some people are born carers, some are not, there is no shame in admitting the latter. Better a happy daughter than a resentful one.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
New South Wales Australia
Hi red shoes and everyone
I am hoping to look after my husband for his life - but I didn’t feel that way for my mum- I was younger and wanted my own life - and with a close sister we were able to put her in respite and later permanent care - she was really loved and cared for there and we visited and phoned. Look at the options and don’t feel it’s all up to you- you are very wonderful to say what you have .
I would like to tell you too that the crazy things people say with dementia are probably common - my husband says the craziest things - I changed a washer on a tap this morning and H decided the poor washer was the reason a golfer on tv was hitting poorly- he just entangles everything and has no logic !! I just try to accept (and now totally avoid scary movies) !!
Best wishes !
 

Kikki21

Registered User
Feb 27, 2016
2,268
East Midlands
I’m sure most people just want to run away & it is very difficult to accept these feelings but you need to look after you.
People at my age (48) a lot of which have had very little exposure to dementia unless they have had a relative with it are struggling to understand just what kind of hellish life it is.
I was just talking to my fiancé this morning about how difficult my mother has been for years & how much she has tried to dictate my life.
I’m not a natural carer. I’m trying to do the best for my mum but I would rather someone else do the caring & there’s no shame in that at all.
You certainly shouldn’t give up your life, that is just asking for resentment. Big hugs xx
 

Theresalwaystomorrow

Registered User
Dec 23, 2017
343
What a sad but true post, pity we can’t see number of views this post has, that would show how many actually read this but not commented because it’s so true.
We all feel like this at times and sometimes help is so difficult to get but mayb try to arrange carers to go in everyday to ease pressure off you
Hope you feel better soon xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,961
Kent
Hello @RedShoes23

I'm so glad you had the courage to off load here on Talking Point.

I know how many times I lost it with both my mother and my husband. I'm not proud of it but on each occasion I know it was because I had been stretched to the limit. Even though it doesn't excuse my behaviour I recognised it and I know you have too.

It sounds as if your mother is living in sheltered accommodation or assisted living. If so there may be people on hand who you can call on for help. Try to get some help. I had some help every day, just to give me a break , and it made a big difference.

I'm sure your mum will have forgotten what happened while you are still upset.
 

Fullticket

Registered User
Apr 19, 2016
480
Chard, Somerset
You are absolutely not failing anyone; reading through it I would say that you are doing what needs doing as it arises. I would not trust my mum anywhere near a kettle now, let alone an iron, but when did I decide that keeping the kettle out of her reach was a wise decision? Not the day I started caring for her, not for the first few years but at some time in the last year. Ditto, when did I decide she needs to wear incontinence pants, etc. etc.
IMO caring for a PWD means doing what is needed, when it is needed and whether you think the PWD or the suggestion givers would agree to it or not.
As far as whoever told you to give up your job and become a full time carer is concerned, tell them to go boil their head but before that come into your mum's world and care for her for a couple of weeks; then see if they would like to give up their job. When I was typing this I mistyped carer and it self corrected to caterer - got me thinking. If someone told you to give up your job and become a full time caterer, would you do it (assuming you are not already a caterer!)? Or maybe a chemist or GP so you can prescribe for her?
Apologies if I sound a bit aggressive this morning, mum has been eating chocolate again and I have been scraping poo off the walls...
 

Sylvester01

Registered User
Jul 28, 2016
8
Hi Red Shoes
I'm so sorry you are having such a difficult time at the moment. My husband has dementia and I reached a point it sounds like you may be at. I was crying all the time, couldn't see the wood for the trees and really didn't know what to do to help myself get out of the really low mood and feeling of not coping that I was in. I was also drinking to cope which was making everything worse. The best thing I did was go to my GP. I have to say he wasn't very good! But he prescribed me anti depressants which I'd never taken or wanted to take but they really helped me clear my head a bit and be able to improve my sense of well being. I have now stopped drinking and I run for exercise both of which helped in the long term and I came off the tablets after about a year and a half. So I would really suggest speaking to a GP about your own mental well being and obviously tablets aren' t right for everyone. Secondly don't beat yourself up about the incident with your mum. The fact is you were there spending time with her and you actually managed not to lose patience with her all weekend except the one time. Personally I think that's an amazing achievement! If I manage a few hours without being impatient with my husband I think I've done well! Obviously noone wants to lose patience or get angry and we try but we are human beings not saints and it is really really hard. Finally definitely do not let anyone ever make you feel bad for living abroad and not with your mum. You also have your life to live and you spend time with your mum when you can. There are arrangements that can be made to ensure she is well looked after without you living with her. I am not a natural carer and spend most of my time wanting to leave and I probably would if we weren't married. My solution is to make sure I do my own things and retain my own life too. I also still work full time. It isn't always the best or right solution for either person to be there 24 hours although for many people it works. We're all different. One of the strong emotions with a diagnosis of dementia I think is grief at what you have lost and what will never be. It is the single most difficult thing i have done in my life and the longest emotional rollercoaster ive ever experienced. Noone who hasn't lived it can ever fully understand so keep posting on here and be kind to yourself, we're all learning as we go along.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,310
Yorkshire
hello @RedShoes23
you say your mum is living in an older people's property - is this with a warden available? - if so maybe have a chat with the warden to find out their view of your mum's situation and how much support is being provided - the warden may well also have contacts to help you
even in such a property, your mum has the right to an assessment of her care needs by her Local authority Adult Services - so contact them and explain how things are with her and that you are only able to visit few times a year so cannot provide the care she needs yourself - get an email and land address and write a follow up outlining all that is said in the phone conversation so that you have a 'paper' trail to refer back to - mention all your concerns especially the iron situation as that is evidence of her putting herself at risk of harm (I hope you have got rid of the iron - maybe don't replace it as it's not the end of the world to wear unironed clothes OR arrange for an ironing service; tell your mum it's a treat for her)
when you call Adult Services, don't mention your mum's finances, say you'll have to check into them - the financial assessment should happen after the care needs assessment
you might also look into applying for Attendance Allowance, at least you will then have read the document you need to fill in so will know when your mum is eligible to apply - receiving AA also opens up the way to apply for a disregard of Council Tax
https://www.gov.uk/attendance-allowance/how-to-claim
it's tough living far away from your mum as it can feel as though you are being of little help, so maybe looking into the paperwork etc for her will make you feel 'better' - and a lot can now be done online - if powers of Attorney aren't yet in place, that's something else for you to organise
I think you were given a link to 'compassionate communication' in your previous thread - I hope it's been helping - though none of us can keep to it all the time
 

Rob_E

Registered User
Feb 1, 2015
196
Liverpool
Hi @RedShoes23,

There's a lot of good advice in this post. I'm in approaching my mid 40s and trying to juggle looking after mum who is probably in the mid stages of alzheimers with working full time at a job I studied hard for and also have some kind of social life. I also suffered what may be described as a mental breakdown in 2015 for several reasons including a very painful relationship breakup and other issues as well which resulted in me having difficulty leaving the house without having panic attacks amongst other things. Mum has declined quite a bit and moved to another stage during the last 12 months. She is saying ever more strange things, no longer washes or changes her clothes without being prompted and is now unable to prepare meals beyond putting something in a pan and heating it up. I realised that it is now time to get external help and have requested a care assessment.

I do feel very angry at this disease and how it seems to know no bounds with what it will affect and how much it demands of mum and me. There are times I lose my temper and wonder, 'Do other carers feel like this?' . I'm lucky in a way that mum still seems to have empathy and does understand that this condition affects others as well as her but it is still tough.

I would certainly see your GP about help for yourself, my GP did put me in touch with a very good therapist / counsellor. I hope you sort things out somehow, I didn't really use talking point in the early days but as mum's condition has progressed I find it invaluable, there are some really understanding people here who know what you are going through.
 

BlueFox

Registered User
Dec 27, 2017
25
Hi,

It sounds like you are having a difficult time. I completely understand the feeling of wanting to run away. I look after my Mom, with no family support while holding down a full time job. Like you I don’t want to lose everything I have worked so hard for, my job , my home etc to this disease.
I know how hard it can be to not lose your temper, but I try to think that I am arguing with the disease and not the person and I am never going to win that one. So I just let it go, and regroup. You say a problem with the iron caused the augment, so I would replace the iron and throw the old one away.
I have found that a combination of lateral thinking and not beating yourself when things go wrong does help.
I hope you feel better about things soon.
 

pjapril

Registered User
Oct 22, 2017
77
Hey red shoes I just thought I would add into this - I haven't been on for a while as I also work abroad and am in such a similar situation to you. This time 18 months ago mum was doing all the things you describe and like ur mum she was living in a retirement flat. It's hard for us to assess how bad it is as coming and going means that mum can hide a lot of things from you. My mums stories used to drive me crazy - she would make up things about the poor neighbours that i used to get really angry about before as i had no idea about confabulation and all that entails on dementia (there are loads of great links on this site about it). Mum got worse but it wasn't until crisis hit in the form of another illness that I realised just how bad it was. Only a few months ago I was sitting outside the hospital ward feeling like running far far away as it is all so overwhelming. If I had a pound for the judgemental people who told me that I "should now come home" I would be a rich woman. I stayed strong and followed the advice that she needed 24 hr care and now she is in a home. She hates it and that multiplies the guilt every phone call or visit. But in my heart i know that care has to be the factor influencing the decision. So many many things will make you feel like running away - it crosses my mind a lot - the paper work / allowances / and a whole new language of acronyms that you learn fast - from POA to PWD to AA to DOL and COP - just to name a few!!! I worked hard to get to do a job I love and the injustice of dementia makes me want to scream. My poor mum should be enjoying her retirement and cruising the world with her savings - not sitting without washing or changing clothes etc. Sorry to go on - but I wanted to post as my situation is a bit more advanced than yours but our lives sound so similar!! I still (despite the compassionate communication advice and research) shout at mum out of frustration and the guilt afterwards is a feeling all carers know only too well but hey we are only human and our mums know this I'm sure - and they sure did before dementia took over! Take heart from the only thing that keeps me going which is that she doesn't remember for long!!
I recommend this site for a calming read (like me now in the middle of the night!!) when the whole thing is just overwhelming - and know that you always have somewhere to come to talk. The people on here are so kind xxx
 

Grahamstown

Registered User
Jan 12, 2018
1,724
80
East of England
Hello @RedShoes23

I'm so glad you had the courage to off load here on Talking Point.

I know how many times I lost it with both my mother and my husband. I'm not proud of it but on each occasion I know it was because I had been stretched to the limit. Even though it doesn't excuse my behaviour I recognised it and I know you have too.

It sounds as if your mother is living in sheltered accommodation or assisted living. If so there may be people on hand who you can call on for help. Try to get some help. I had some help every day, just to give me a break , and it made a big difference.

I'm sure your mum will have forgotten what happened while you are still upset.
I am browsing through the forums and came across this post. I have managed to control my anger lately after coming onto the website and reading and posting but last night just couldn’t contain myself and got angry and my OH was so upset. He can’t bear it when I get unkind but he can’t change. I feel so bad but today is another day and it doesn’t seem to get held over. He is fine up to after lunch and then he deteriorates. I feel a bit better now and my daughter and grandchildren are coming today so that will distract him and then I can try and get through the rest of the day keeping my cool.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
I think it happens to us all at times. Only a saint could keep working and grieving and losing sleep ...and still keep smiling. We do the best we can...and no one can do more. Don’t beat yourself up, you will remember it for longer than he does. Sometimes when I am feeling guilty, I think what would have happened if the tables were turned. I think I can safely say, in my case, that I would either be under the care of my own children, or in a home. Probably after about six weeks!!
 

Risa

Registered User
Apr 13, 2015
481
Essex
Don't feel bad Grahamstown. Being a carer is hard but you don't get to clock off at the end of a shift and go home to unwind. We learn 'on the job' and we all make mistakes/respond to situations that in hindsight we could have handled better. That is why I picked my tagline as it sums up my family's continuing experience with dementia and looking after Mum.