Do you feel your life is on hold?

CucumberWhisky

Registered User
Sep 23, 2015
56
0
Surrey
Most Definitely!

My life is definitely on hold and has been for the past 7 years when I stopped working at the age of 54. Admittedly I hated the part time job but Mum was seeing less and less due to AMD and I took over all the duties. Since her TIA and now mixed dementia I feel my whole world has shrunk completely as I do not drive and can only go anywhere either by foot or public transport. Mum has always dominated my life (interfering in making friends, not interested when I was planning my wedding, which I didn't go through with - which I'm still glad about 25 years on) and I get so resentful and angry, and then guilty. I know she can't help having the disease but my daily life revolves around her and always has.

However, reading posts on TP makes me realise that I'm very lucky in many ways so I must just carry on.

*Hugs* to everyone who may be in need of one and take care. CW
 

jude50

Registered User
Dec 28, 2011
2,446
0
Cardiff
I hope that this doesn't come across as insensitive but you are going through exactly the same as I went through when I looked after my Mum. with carers and day centre I just about managed to keep working full time but lived with Mum but I had no social life and no time just to myself apart from a 2hr art class once a week during term time.

Mum passed away in July 2012 after suffering badly from Vasc D and I didn't know what to do with myself when she was no longer around as everything had revolved around her and her needs. But I took the plunge and joined an online dating site and just over a year ago I met a lovely gentleman a couple of years older than me and now in my middle 50s am engaged to be married. I am extremely happy and know that Mum would be happy for me.

So what I am trying delicately to say that there will always be better times when the stress of this horrible disease no longer has its hold on you
 

Ihtl

Registered User
Jan 19, 2016
82
0
I feel like this every day and like someone else earlier said, I do feel a little trapped. My dad was diagnosed less than two years ago soon after his 59th birthday and has deteriorated faster than I would've imagined. After my mum passed away a year ago things have been particularly hard.

I never imagined that my early 20s onwards would be like this. We've been lucky with the day centre and hopefully changing the carers around soon should help us even more, but I've/we've (my brothers and I) have still had to fit our jobs around him. It's one of the reasons why it's been a couple of years since all three of us have been in full time employment.
There's things that I guess I took for granted before; being able to work full time, being able to run to the shops to get something, having a lie in on my days off, staying late at work, going out with friends, generally speaking, having time to myself. These things almost always require strict planning to make sure that someone is home with dad.

I guess what I also find difficult is that so many of my peers are at a stage in their lives where they're really getting on with things. Taking serious steps into their careers, finishing post graduate education, starting serious relationships. I know that most of those things aren't a possibility for the near or even medium term future. Even aside from all that, I can't even enjoy my time outside of work.

It's very hard and talking to people who just don't 'get it' can be infuriating. One friend, when trying to reassure me that things would get better, actually said "it's just this moment". I know she doesn't think dementia is curable or something one can recover from so I found it mind boggling that she would say such a thing. Turns out she was talking about him getting his state pension, which he won't get for another 5 years anyway and whilst helpful, wouldn't help that much with full time care- which my friend doesn't think we should do anyway, we should keep it in the family...
Funny how people who don't even bother to find out what care can/does involve are so quick to turn their noses down at people no longer being able/willing to provide care for their loved ones :rolleyes:
 

hells-bells

Registered User
Nov 16, 2015
17
0
Brighton
hells bells - forgive me if I'm intruding, but my reaction to your heart-breaking quote was that you can't give up your future, your children, to your MiL - or that's how it seems to me. It's too much of a sacrifice.

Just wanted to reply without hijacking the thread - thanks for your kind comments, it's not so much a sacrifice as a requirement at the moment. MIL takes up so much time, as she is fully dependent on the two of us, that we're rarely able to make social plans, let alone bring another human being into the mix.

One day I hope, when she's less reliant on us, we can make plans - but the ever present ticking of the biological clock doesn't help!


Sent from my iPhone using Talking Point
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
And that's the thing about all of this isn't it?

People say that we have to remember that when the PWD behaves badly or is being particularly difficult it is the dementia and not the person.

Fair enough but what gets me is that OH is the one with disease but it is my life that has been wrecked. I am in my 70s and thought that these last active years of my life would be spent doing what I love best - travelling.

OH is not too bad, still continent and showers himself and mobile but has severe paranoia, confusion and language difficulties. Add on his cardiac problems and everything just gets more complicated to the point that I can no longer venture too far or too often from home.

I get out occasionally with my volunteer group and once in a while I manage a day trip to Melbourne to see a special exhibition at the art gallery or go to the garden show. I had been a gypsy for over thirty years, lived abroad and actually met OH in UK. He had also spent many years of his life travelling so naturally we planned to go on lots of trips in our retirement.

I just hate the fact that my life is controlled by something not of my own making and that it could go on this way for years. It is rather like looking down a long dark tunnel, knowing that there is supposed to be a light down there somewhere but you just can't see it.
 

Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
It's so sad reading through these stories and perfectly illustrates how dementia has a devastating impact not just on the person with dementia but everyone close to them. Thinking about it as a parent, I can't imagine anything that would make me unhappier than knowing that my daughter had wrecked her own life and/or compromised her own family's future in order to care for me if the worst happened. I will do everything I can to make sure she doesn't feel that she would have to care for me personally, just make sure she finds me the best care my savings can afford.
 
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marionq

Registered User
Apr 24, 2013
6,449
0
Scotland


"I just hate the fact that my life is controlled by something not of my own making and that it could go on this way for years. It is rather like looking down a long dark tunnel, knowing that there is supposed to be a light down there somewhere but you just can't see it."


Lawson you have said it all.
 

RedLou

Registered User
Jul 30, 2014
1,161
0
It's so sad reading through these stories and perfectly illustrates how dementia has a devastating impact not just on the person with dementia but everyone close to them. Thinking about it as a parent, I can't imagine anything that would make me unhappier that knowing that my daughter had wrecked her own life and/or compromised her own family's future in order to care for me if the worst happened. I will do everything I can to make sure she doesn't feel that she would have to care for me personally, just make sure she finds me the best care my savings can afford.


Exactly - I've told my daughter to put me in a CH and never come to visit me. I want her to remember me as I was. (Not that she'll obey me on the latter instruction.) Ideally I'd like enough self-awareness to get to Switzerland during the early stages. My brother says the same.
 

chelsea girl

Registered User
Jan 25, 2015
139
0
From a selfish point of view i also feel trapped and worry that when something happens to mum, my husband and i will start to struggle health wise and we wont b able to do the things we want to. Mums in final stages but is of good health really. Its a waiting game and everything revolves around mum and her care.
 

CucumberWhisky

Registered User
Sep 23, 2015
56
0
Surrey
I hope that this doesn't come across as insensitive but you are going through exactly the same as I went through when I looked after my Mum. with carers and day centre I just about managed to keep working full time but lived with Mum but I had no social life and no time just to myself apart from a 2hr art class once a week during term time.

Mum passed away in July 2012 after suffering badly from Vasc D and I didn't know what to do with myself when she was no longer around as everything had revolved around her and her needs. But I took the plunge and joined an online dating site and just over a year ago I met a lovely gentleman a couple of years older than me and now in my middle 50s am engaged to be married. I am extremely happy and know that Mum would be happy for me.

So what I am trying delicately to say that there will always be better times when the stress of this horrible disease no longer has its hold on you

Jude, I'm very pleased you've met someone and wish you all the best for the future, especially your 'big' day. I have 3 hours a week to do what I want, when an agency carer comes in, but always spend it going to the bank to sort out access to Mum's account (got POA), shopping, library, etc. Tomorrow I plan to go to local hospital to get some more batteries for Mum's hearing aids and work my way back via library.

One thing I won't be doing at my time of life is looking for anyone else to share it with - I crave my freedom.

I'm sure you're right regarding better times but with me I doubt it. Complete pessimist me!

Best wishes. CW x
 

little shettie

Registered User
Nov 10, 2009
221
0
You are not alone!

Does anyone else feel like they have pressed the pause button on their life?

It has struck me that my life is in limbo and will be until the inevitable happens to mum.

Mum is somewhere around the midstages of Alzheimers at home she is ok (kind of, there's lots of imaginings, confusion etc) but she cannot go out and about on her own.

Mum cannot remember our address and feels no connection to our house, sadly she can get lost, she proved it last week so no chances will be taken from now on.

It's selfish I know, but I'm wondering how long this will go on and what I'm doing to my future. I gave up full time employment to be at home with mum, I regret that decision and at the same time don't, even though that makes no sense. I did what was needed, but when this is over will I be able to find a job ( I'm in my mid 40s now), I have a company pension from my last employer, but will it be enough? Am I going to struggle because I left the job market? Have I been very stupid and sacrificed my future security?

There are no answers I know as none of us has a crystal ball and I'm well aware how selfish I'm being when mum cannot help being ill, but does anyone else feel the they have paused their life and cannot plan for a future?

Lavender45

Dear Lavender, I am in the same situation and reading the other comments, there are many others too. My mum has AD, diagnosed over 6 years ago and is 95 and apart from this is really fit as a fiddle. She lives with hubby and I as I could not do the long distance caring any longer, it was killing me. This is better in many ways as I don't have the worry of if she's alright when I leave her and I know she's fed, showered, meds, clean clothes every day. But, yes my life is on hold too. I was a driving instructor and gave up last summer as I was working less and less hours and frankly found it hard to concentrate which is no good in my profession! I'm 52, have little help from family, well none actually but I do have a wonderful group of private carers I can call on to sit with mum if we want to go out some weekends. But I do feel trapped, I'm bored day in day out same thing, not much contact with friends as they all work of course and my mum could live for many more years and all I keep thinking is, will I be in my 60s before I'm free! Feel awful for saying it but that's how its feels at times. Not much solace to offer you but please know you aren't the only one and you shouldn't feel guilty in any way. xx
 

notsogooddtr

Registered User
Jul 2, 2011
1,283
0
No one who gives up their job,home or future family can be considered selfish.I did not do any of those things,never even considered it and I don't think I'm selfish either.I have arranged the best care I could for both my parents,I've done more admin stuff than I've ever done in my life and I feel I've done all I can.I expect no more from my own children,they were my choice and my responsibility not the other way round.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Before mum went into a Ch I felt I was constantly picking up the pieces. Then when she went in I was doing so much admin - applying for AA, sorting out things in the CH, applying for Court of Protection, advising various people that I had CoP (and chasing it all up several times), paying all her bills, clearing and selling her bungalow - it seems never ending. Now my OH has been diagnosed with Frontotemperal dementia and I have taken early retirement as I couldnt work as well as everything else (I got very close to a breakdown). My daughter took an overdose at the back end of last year. My DIL is expecting (lovely news), but is now having lots of problems. Both these girls phone me to cry on my shoulder. Its becoming increasingly hard to leave OH to visit mum.

I just dont see any end. I would like to enjoy retirement and look after grandchildren, but I dont see any of this happening.
 

Missy

Registered User
Dec 18, 2006
70
0
None of you are selfish in the least, you are unbelievably kind.

My FIL is in a care home some distance away. He wants to come and live with us, but that would mean one of us giving up our job and both of us giving up our lives just at the time when the kids have flown the nest and we can have some "us time". So I said no, it would not be possible. And the reason is (although I did not say this to him in these words) is because I don't want to. My FIL had a great life in his 50s, he and MIL travelled, had a great social life, I don't think it fair that he should expect us to give up our lives for him now. The care home is lovely, he is well looked after.
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
definitely... I no longer enjoy catching up with our circle of friends that we have known 25 yrs plus.
I find that I have little conversation, and inevitably they always ask about Mum (with AD) & Dad (with MCI). That seems to be the extent of my conversation, which gets depressing. I can't even join in much, as they are all talking about their plans about their next house, next car, next holiday, home renovations... I'm not envious of material things, but I can't even plan my next week let alone a night away.

I had hoped to go back to work full time when my daughter was 10, that was almost 4 yrs ago. Still working 3 days due to caring for Mum. Financially we are comfortable but cannot get ahead... Our expenses are only getting higher now with our son at University and daughter at College.
A huge sense of guilt as far as my kids... :(
 

Dayperson

Registered User
Feb 18, 2015
278
0
I would agree 110% although my mum keeps she will find new friends when we live in the rural countryside and she and I cannot drive.

If anything seeing my mum the way she is has shown me I don't want children because I can't cope with people not doing the right thing and I am worried I will get it too (her dad and aunt has / had it). I wouldn't want to inflict how altzeimers on my worst enemy. It's a cruel disease which affects those who care for people the most, I've seen it happen to an aunt and a grandparent, and now it's much closer to home.
 

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