Coping with parents as an 'only-child'

[Plymum]

I have been the only one caring for my Mum as her dementia has worsened over the last twelve years. With no siblings, no aunts ,uncles or any relatives at all I've just had to get on with things. After five hospital admissions over three years and a year of carers going in to help four times a day... just last week I had to make the sad decision that I couldn't cope any more and she has gone into a nursing home.
Despite the fact that she is not settling at all ... for me it is a weight from my shoulders! I go and visit her daily but the heavy weight of sole responsibility has gone. I feel supported by the NH and by all the staff and actually the other residents' visitors who have made me feel so welcome. I actually "enjoy" visiting now instead of that pit in the stomach feeling I had every time the telephone rang, buying all the food etc, organising the carers, organising the gardener , organising a cleaner, paying all the bills, fighting her corner for every benefit, gaining CHC funding for her and all the other responsibilities.
I am going on holiday tomorrow for the first time knowing that someone else is caring for her.
At what cost to my own health? I am totally exhausted and feel burned out. My immune system is at rock bottom from the constant stress I have been suffering for as long as I can remember. I cut my work down to part time as I couldn't manage caring and working full time. Luckily my boss can see that I need a break and has given me two weeks compassionate paid leave to try and recharge my batteries.
I did it all because, without me what would have happened to my Mum?
As someone already said there is no one to disagree with my decisions ... but I really wish I had someone to have supported me through this long and difficult journey. I can truly say when it is time for my Mum to pass on that I couldn't have done any more for her. And hopefully the long term stress will not have done me lasting harm.



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[Plymum]

Mrs Terry N a huge hug to you and much strength to get through this difficult stage xx


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[MrsTerryN]

Plymum thank you and same to you. Nursing home agreed with her thank goodness.
I think it now just the next (hopefully end) stage.
People say to me "oh how hard it is on you that she is in care " nope.. hard was having phone calls at 2 am from her or the police, mum not being able to use a microwave, accusing dad of all kinds of things... accusing me of all kinds of things. That was hard but largely invisible because " she is at home cant be that bad".
Plymum homes help
I hope you recharge and refresh

 

[johemingway]

Only child, mum with Alzheimers, no other relatives

Just found this thread and glad to find some people who understand. I am an only child and my parents split when I was a kid so I lost all my dads side of the family, and mum was an only child as well so I started off with a small family anyway... I have no children and my ex husband financially ripped off me and my mum and didn't leave us in a good place. So now mum has Alz and I have no support at all, and it is so lonely.
Mum lives 50 miles away, and like a lot of you guys mentioned in your posts her house became a proper tip which I have had to start cleaning up, as well as getting her to medical tests, GP trips, podiatrist, organising carers, setting up POA, clearing out the fridge and stocking up on food, and constantly having to try to explain to her why all these things are happening to her. Add to this I work full time in a new job so there is very little leeway for time off, and I already struggle with depression and OCD
I feel like I have suddenly become a dementia bore, feel increasingly isolated, exhausted and lonely. We haven't always been close, and there are a lot of things about mum I struggle with, but I feel so sad for her and want to protect her as much as I can. She has already been the victim of scammers, and when I leave her to come home I feel like I am leaving a toddler alone in a house 50 miles away - not good. I wish it was easier to get help and support, there is so much to take on, and I don't even have friends who can help with the practical stuff like skip filling and furniture moving. Sending love and fellow feelings to all of you who are coping with things on your own...

 

[lemonjuice]

Another one here who is 'an only' and also married to 'an only' (Never considered the consequences of that years ago.)

So for the past 25+ years we've been 'supporting' our elderly parents with ever-increasing needs.
So we've my mother with dementia, now at severe stage and husband and I are now caring pretty much full-time for his mother, recently widowed. 4 years ago we were caring for father-in-law and an unmarried uncle too.

We cherished hopes of having some sort of 'retirement' when we could have some kind of life of our own, but both mothers are still remarkably healthy. Certainly takes it's toll and leaves little time for anything else other than care.

 

[Dazmum]

How lovely to see so many replies, I wish I'd found this forum years ago, we all have such difficult experiences and it's comforting knowing others are going through similar things, ghastly though a lot of it is.

I think there's an intensity being an only child, you are the sole focus of your mum and dad's hopes and aspirations when you're growing up, quite a lot of pressure and less room for hiding behind distracting siblings maybe. When my dad died this month, he ended the letter he left to me and my mum with his will, with the words: "We are one", which really brought home to me how intense the bond between the three of us was, despite the usual fallings out and many periods where they drove me nuts I realise that even though I'm in my 50's and have done everything possible to help them in the last decade, some of it against my dad's will as the dementia set in, I always wanted their approval in some way. Maybe that's something only children feel more intensely? After the funeral, I had such a strong urge to chat to my father and check he was happy with everything I arranged for it. That's going to be part of a long readjustment I suspect

Crunchy, I hear all that you're saying too, as another only, particularly your last sentence above about seeking approval. My mum has dementia and is in a care home. I lost my dad over four years ago, but I still hope that he approves of what I try to do for mum, as I promised him I would. I also had to make the toughest decisions of my life in respect of them both, and Dad was quite angry with me for making some of them.

We were always a close family and they were supportive of everything I ever did, so for him to be against some of those decisions came doubly hard for me. I wished at times that I had a sibling to share that decision making and responsibility with, it felt like it was relentless. I have an incredibly supportive husband, he got me through it all and was my voice of reason, being one step removed, he could see things more clearly than I could, while looking out for me too. I ran myself ragged with hospital visits for them both (they lived with us) and just everything associated with caring for two elderly, poorly folk 24/7, plus working and bringing up a child.

But, I do know that the decisions I made have been good ones, well, as good as they could be under the circumstances, and like you I have always tried to do my best for my mum and dad. I look at threads here and often think that I'm glad of being an only, as I don't have the resentment that I know I would feel towards 'invisibles' to add to all those feelings I had at the time. Now that my mum is in her care home, I do wish that I had a sibling that could visit her too, as there is 'only me' to do that, plus one of my friends. None of my other relatives ever visit her, and that upsets me. But, who knows, my sibling might be an invisible and that resentment would be festering away!

Plymum, your feelings of relief mirrored exactly how I felt, and still do. Enjoyed your well earned holiday xx

 

[jorgieporgie]

Good Morning thought I would join in at I am an only child too. Not that it is any harder whether you have siblings or not, as some on here have siblings that are as much use as a chocolate teapot.
It is hard coping alone, I had Mum living with me the three years when she had dementia and was 24/7 carer she passed on the 31st October this year. I had to sort out everything but coped and got through it.
I never had my Dads Family as my Mum and him were divorced when I was a child, plus I have just gone through a divorce two years ago. I have on grown up Daughter who has her own life and try not to put on her.
You will get through this, I know you might not think so but we are stronger thank we think, been an only child dose make you be independent in some ways as you have too.
Keep strong there is a lot of people in the same boat on here, and plenty of support. x

 

[barnsleynanna]

Thanks for this thread ...

Hi everyone ! I've found more answers on this forum that any of the professionals were able to give. My 82 year old mother was diagnosed with Parkinson's Disease some years ago. Due to a quickly failing memory and failing the 'test', which showed that her memory was progressively worse since her last test 6 months ago, she had a CT scan which showed frontal lobe shrinkage. I'm now unsure whether this should be classed as Parkinson's Disease Dementia or frontal lobe dementia..

I'm also an only child with a supportive husband. I also have a daughter and four grandchildren who also rely on my helping out and support. Mum is currently living in a sheltered housing bungalow, and I take her meals over every day. I sort out her finances without a POA, which she refused some time ago, but she allows me to sort everything out for her, which we did by opening a joint account a couple of years back in hers and my name. Her pension goes in there, and I pay all her bills and get her shopping. I'm just wondering at what time she is classed as 'middle' or 'end' stage dementia, as the line between the two seems very thin. Additionally, in my situation, my mother and I have never got on. I believe if she had been treated many years ago, the diagnosis would have been bi-polar disease - of course these days everyone just says it's the dementia, but believe me she's been very high/low/depressed since my teens. As a result, I feel very bitter sometimes that she now needs my care, despite offering no support to me over the years, or showing any emotion .......... hope some of you understand???

 

[Kevinl]

Good Morning thought I would join in at I am an only child too. Not that it is any harder whether you have siblings or not, as some on here have siblings that are as much use as a chocolate teapot.

Isn't that the truth, I'm glad I'm doing it alone when I read things like this:
"My sister has changed the locks on my mother's house. I used to have a key. She has POA for Finance"
Another one reads
"I have LPA Health and Welfare. My two siblings wish to now get Guardianship/Deputyship. Could they behind my back force my mother into a care home? Or does my LPA Health and Welfare be equal and I have a voice to say no?
My brother only sees mum on a rare occasion, while my sister lives abroad, I see mum everyday.
It's just two of a number of thread where siblings not just don't get on but actually work against you.
In the 8 years since my wife was diagnosed one of her five siblings has visited her once. Be careful what you wish for would be my advise I find coping alone a whole lot easier than being sabotaged by the siblings.
K

http://forum.alzheimers.org.uk/showthread.php?97051-Where-do-I-stand

http://forum.alzheimers.org.uk/show...ship&p=1347867&highlight=siblings#post1347867

 

[SnowWhite]

I actually think it's easier coping when you are an only child. I have two brothers who are totally useless and hardly do a thing to help Mum. They both live closer to her than me and are no busier than me so there's no excuse.

I take her to all her appointments, deal with her paperwork and bills (at her request) take her out shopping, have her here for weekends, take her away for mid week breaks when I can and when she's well enough. I organised her carers, I organised her OT, her Alzheimer's diagnosis, her medication etc etc.

My friends dad has dementia and she just makes the decisions as an only child and that's an end to it. She reckons she wouldn't like to be in my place.

I guess if your siblings share the load then it's great but mine don't even speak to me.

 

[Murper1]

For a long time now I've felt I am in a nightmare. And I have felt very alone as I try to 'sort things out' and manage. My only sibling, my brother, died in 2012. My mum had been 'off' for quite some time and my brother and I had just realised that it could be dementia. My dad looked after Mum very proudly until my brother died, after which I felt a huge need to try to do what I could for Dad who himself was not very well. It broke my heart, and I was 200 miles away looking after my own teenagers and husband. So after many weekends driving to M & D's to clear their cluttered house, Dad decided they had to move close to us. It was wonderful for a few years, Mum was much better catered for and Dad loved to see his grandchildren and we all loved to see him. But then Dad died suddenly this summer. So Mum is now living with me. But the responsibility of sorting out Dad's estate, Mum's payments and pension, the caring, the costs, my own family of course (children doing GCSEs and A levels), clearing the flat and selling or giving away stuff I've known most of my life, renting the flat to pay for Mum's care...and the occasional lonely collapse into tears after I've put my sweet Mum to bed and she gazes at me intensely, unable to talk, just gently moaning. Yup, it's so lonely. Though sometimes I feel they are giving me a pat on the back and saying 'You're doing well', I miss my dad and I miss my brother. Oh thank goodness for TP and everyone who posts on here.

 

[mossey985]

Resident Activity Director

Hi, I'm Mossey985. I'm new to this site and I want to find out some great activities for the elderly w/Dementia/Alzheimer's.

 

[Kevinl]

I have felt very alone as I try to 'sort things out' and manage.QUOTE]

It's a relative concept being alone, you feel alone in a crowd. I went to visit my wife Friday lunch then never spoke to another human being until Sunday evening when I visited for her evening meal. We have 3 children but only 2 have come to visit this year (so far) and one of my wife's 5 siblings has come this year, but that's a first in the 8 years since she was diagnosed.
I felt very "alone" sorting out my mum's affairs when she came to live with me and my wife some years ago and my brothers didn't want to know, pensions, selling the house and all the death by paperwork but I had my wife then to help.
Now my wife is the one in care, trust me that coming home to an empty house is a hundred times worse feeling alone and being alone are 2 very different things.
The topic on the thread is "Coping with parents as an 'only-child" if you have someone, anyone in your life who helps then count yourself lucky, it's a blessing not a right.
K

 

[Dayperson]

I too am an only child in my 30s but no partner. I am lucky my dad is cooperative although I do like to do more than I should (cooking, cleaning etc). I think dad and I have both commented in the past that without each other we would have given up. It has brought us closer together, plus we are working on a new business at the same time. We must be crazy, it's hard enough to deal with dementia or a starting a business but we're doing both at the same time.

I just hope mum doesn't deteriorate because we need the money from the business to fund her care.

 

[MandaPanda]

You are not alone

Hi I've joined this forum today, and nearly every issue I've encountered so far on my journey with my mum and dad seems to have a thread already, so I'm starting this one for anyone else on here that has no brothers or sisters. Tough isn't it?!

I have a very supportive other half and three very supportive loving kids in their twenties, plus good friends, so I'm not without a shoulder to cry on or extra hands for helping over the last few years.

However, the buck stops with me. All the responsibility for making decisions in the best interests of my mum and dad ultimately lie on my shoulders, plus no-one else knew my parents when they were young healthy adults or shares my memories of happy or sad times growing up in my family. It's a unique loneliness.

My parents moved away from me just as I was starting my own family, so distance has always been an issue. My mum has vascular dementia following TIAs in her early 70's and my dad has been her carer for many years. He developed signs of psychosis many years ago but hid it well. It was only when I went on unannounced visits that I realised just how far they had declined and how basic care needs were slipping, as their home descended into a hoarded cluttered mess. It's a long story, but luckily I got Lasting Power of Attorneys in place for them in the nick of time, thank goodness.

I've had to get both my parents into respite care, get my father sectioned, move them to different care homes, spend 6 months of all my free time alone driving miles and clearing out and selling their house, uncovered all sorts of unsavoury secrets amongst the clutter, felt angry at times with them and angry at times at the system, and felt many times that it was all too much for one person to bear. But there is no way out, no sibling to take on tasks or battles, the buck stops with me.

My father died recently, his funeral was two days ago, I even had to choose what clothes his body should be dressed in, then there are all the funeral arrangements, all the letters and calls to long distance friends and relatives to field, the music to choose. And also my dad named me as the sole executor. I am absolutely exhausted. Not least because my mum cant remember he's died so I have to tell her the sad news every time all over again, no one else can share that either.....

Anyway, if any of you are in a similar situation, do post here

Dear Crunchy,

I just joined here today as well. I am also an only child & my Mama is in a local Nursing Home with dementia.

I was seeing her 4 times each week, as I have a 4 year old Delta Therapy dog, whom she (& many other residents there) loves.

But for the last 5 weeks I have only been going once a week - to play the piano for her.

I looked up what "helps" dementia patients - - & it's "touch", "animals", & "music". So I figure I am giving her 2 of them as regularly as I can.

My Mama was SUCH a "lady" - even making me have elocution lessons as a child.

Now she literally swears, making me wonder WHO the lady is I am visiting, because it's not my remembered Mama.

She knows me when I play piano - but never asks the staff about me, only my dog!

I am sending up prayers for you - because I realise the lonely endeavour you are facing.

Love,
MandaPanda

 

[Georgina63]

Hi Crunchy,

I'm just catching up on this thread and am very sorry to hear all that you've had/have on your plate. I'm not an only child, but I do feel very similar. My parents were both diagnosed with AD a couple of years ago and are now in a CH. My sibling, although visiting (I live nearby, sibling a couple of hours away) has not been at all supportive, rather has been very unpleasant towards me and undermined many of the decisions I have had to make along the way.

I continue to rely on fab understanding family and friends for my support and for that I am very grateful - from the sounds of it you are able to do that too, and I hope can take consolation from that. I feel very sad that this is my experience, but having to make all the practical decisions, care choices, etc etc, the last thing I wanted was to be constantly told I wasn't doing the right thing!

It sounds like what you have done is amazing, as you say shouldering all the responsibility. As others have mentioned isn't it hard being the grown up? I still don't feel I should have reached that stage!! I find the not having any choice but to do all of this is sometimes especially hard to cope with. All the best Gx

 

[lemonjuice]

Interesting to hear so many comments from 'onlies' and others.

As an 'only child' I think it's not just it's the 'there's only me to deal with it and I feel so alone', but being an only often means one is 'the apple of one's parents' eyes' There is so much expectation ad this then carries through into 'coping with the caring'. Nothing ever seems good enough.

 

[MERENAME]

Interesting to hear so many comments from 'onlies' and others.

As an 'only child' I think it's not just it's the 'there's only me to deal with it and I feel so alone', but being an only often means one is 'the apple of one's parents' eyes' There is so much expectation ad this then carries through into 'coping with the caring'. Nothing ever seems good enough.

I totally agree with this. I am a single only. Dad had mixed dementia.Mum Alzheimers and a brain tumour. I constantly feel like I'm not good enough and getting it wrong.

 

[carrieboo]

Interesting to hear so many comments from 'onlies' and others.

As an 'only child' I think it's not just it's the 'there's only me to deal with it and I feel so alone', but being an only often means one is 'the apple of one's parents' eyes' There is so much expectation ad this then carries through into 'coping with the caring'. Nothing ever seems good enough.

I think this is spot on. There's an intensity to the relationship when you're the only one and an internal pressure to 'do the right/best thing'.

Having time away is difficult, I do have holidays but always worry that there's nobody to help mum in an emergency. I know people complain about 'chocolate teapot' siblings but I think most people would step up in a genuine emergency, when you're an only holidays always feel like a risky exercise.

 

[Tara62]

As an 'only child' I think it's not just it's the 'there's only me to deal with it and I feel so alone', but being an only often means one is 'the apple of one's parents' eyes' There is so much expectation ad this then carries through into 'coping with the caring'. Nothing ever seems good enough.

Yes, I totally agree with this, too.