Tired, stressed, not coping well and needing advice PLEASE!

[Mjaqmac]

Hi Everyone
I am a full time carer for my mother whom has had vas dem since Oct 03.
I live with my parents (I'm 38!) and have no children or never married as I've looked after mum since I was 21 as she's had other illnesses since then and couldn't cope.
I now seem to have the role of chief carer. I do everything from cooking to physio. The result has been that for the past 4 years I have suffered panic attacks and mild agoraphobia.
I want to do what's right by mum and dad (whom is healthy but 77)
I have 3 older siblings whom do nothing but give the odd visit whilst I make them tea and food etc, which is just another burden to my day.
I have a so called "care package" which is rubbish but the biggest problem is mum wants me beside her at all times. Even if I leave the room for 2 mins she almost cries when I come back and says she thought I'd gone. She's not always sure my father is her husband and always wants me with her. This is starting to seriously do my head in. I need to get away from her during the day. I spend all my time sitting with her or worrying that she's missing me even when I go to the loo. I am a seething mess of nerves. I have a sitter now twice a week which started last week but I feel so uncomfortable that I stay out for 4 hours with dad even though we don't want to. We find it hard with all these strangers around, even though they are meant to be helping.
I got engaged recently and now my siblings are trying to force me to stay at home when I get married so that mum won't go into a home.
I am so torn I feel it would be best to maybe give up my fiance and go back to being lonely. The guilt of wanting a life is killing me. I can't please them all and I'm utterly miserable, I am even trying to ruin my relationship so that it won't be an issue anymore, but my fiance seems to love me very much and is putting up with a lot.
Has anyone else been in this situation?
I don't want my mum in a home, my dad couldn't even manage alone as he can't even cook. No one seems to care that I am going in sane yet all I care about is hurting or displeasing others. I'm no saint but I want to make everyone happy and I just can't.
Can anyone whose been in the situation of wanting to marry late in life and maybe have a child of my own, advise or help me. PLEASE! Does anyone else have the problem of a stalking parent and how do you deal with it?

 

[Brucie]

There follow just my thoughts on your posting.... many people will not agree with what I say, but you can ignore me too, so what 's the problem?

First of all, go from wherever you are now and find a mirror.

Stand in front of it.

Gaze upon a hero.

Now, your problems, which are major.

You say your Mum has had vascular dementia since 2003, yet you know that isn't so. You're fooling yourself, because that may be when she was diagnosed, but in all likelihood, there were signs that it had already started some years before. It takes some time to realise that there is something seriously wrong, especially if the sufferer has other health problems.

We all want to do right by our spouses, or our parents [or, I guess, our children if they get early onset dementia]. That's normal.

Does doing right mean that we wreck our own lives? Well, maybe, if we feel stronger that a certain level of care is needed, and less strongly about our wanting a life of our own.

I can't speak from your position. It was/is my wife who has dementia. I did wreck my life to care for her, but withdrew from completing that process, at the very brink. And it wasn't my choice; she was taken into care due to circumstances that meant I had to agree. Given a choice, I probably would have totally trashed myself in caring for her.

And I would have been totally wrong.

Because, much as I love her, and much as I wanted to care for her at home, I would have provided that care to a large extent for my, not for her benefit. I simply could not - even with help - care for her as well as her home does now.

I would also have been wrong because at the time I believed that there would be no life for me after I had finished caring for her. I'd be too old to start again; I'd be too weak to restart, and then I'd look in the mirror and think "what a bloody awful wreck". I believed that if there was anything beyond caring for her myself, then that would detract from the care I could give her.

All of that was wrong because things came to a crisis sooner than they might have done. Had it taken another 2, 5 10 years, it would have been too late.

I'm building a life again now, and am all the stronger to provide quality support of my wife when I see her each day.

Now YOU are in a different situation because it is your Mum, not your wife, but there are many parallels.

Firstly, your siblings.

They sacrifice their right to decide anything substantial about your Mum by leaving you to care for her. Unless they live so far away it would be impractical to visit regularly [and I mean 3-4 hours each direction away]; unless they are themselves incapacitated; unless...[well, there can be lots of reasons]. But if there is no substantial 'unless', just ignore them, or better still, arrange a rota where the four of you share the caring and tell one of them that they start next Monday. See what they say.

An aside: I attended the funeral of someone from Jan's care home recently. I noticed that those who cried the most at the funeral were those I never saw visit him [yet they lived within visiting distance]. His wife was comforting THEM, for goodness' sake, and she was at the home all the time, visiting him, and in despair.

You say you don't want to see your Mum in a home and no-one wants to see their Mum or spouse in a home, ideally. But the world isn't ideal. Some people CAN manage the caring totally at home, and they are amazing. You can be amazing as well, but there is a personal cost.

You have a fiancé and they want to stick by you. Do you realise how fantastic that is?

Now I have no solution for you - how could I have?

You have two parents who need care. It seems to me that your Mum is just about at the stage where she requires a/another care assessment. Frequently, if there is someone like you about then it is just too convenient, and no true care package is considered.

Now you have a new situation to approach them with - you want to get married and won't be there any more than your siblings are.

Care homes are not all as bad as they are made out; many are substantially better in caring than home care would be. Don't rule out a care home.

The problem will probably be funding and I'm sure someone else on Talking Point can give you some hints about that.

Your Dad is the second parent in need and I'd be inclined to approach your current conundrum slowly. Sort out what is best for your Mum and then see what the situation is. It may be that you may need to look after your Dad for a period, though not in the same way as for your Mum. He will need the food, for sure, but also help in coming to terms with your Mum not being in the house.

There's no easy answer here, but it really comes down to your deciding whether you want a life. The rest then becomes a nightmare of guilt, fear, frustration, anger, etc, but there will be two of you to share it and in time, it will be just the two of you...plus any little ones that may happen along.

Best of luck!

 

[Mjaqmac]

Thank you Brucie

Thank you Brucie for taking the time to talk to me.
Your lovely words about being a hero made me cry. Thank you, but I'm no hero. I'm scared all the time.
My siblings do not live far away, and do not have huge commitments. One lives 5 mins down the road and never visits and he was the one whom made my engagement such an unpleasant occasion, which I'll never forget. There was no celebration just looks of awe and disgust.
They can't deal with mum's dementia and fortunately don't have to, as that is apparantly solely my job. I wonder how many out there are in the same boat as me?
You're right, I do have a fantastic fiance, and I didn't really realise that until now, thanks again.
You're also right that my mums dementia started about 4 years ago, along with my panic attacks. When I tried to draw attention to something being wrong with her, my sister responded by banging the phone down on me and I had to ring her after 2 weeks for my mother's sake. Since then I'm scared to rock the boat in case none of them come at all. Mum still asks about them.
I know no one out there has answers for me. We are all dealing with this cruel illness in our own ways. It's just nice to know I can let off a bit of steam and someone out there can identify with me and not brand me as selfish and unfeeling for feeling so smothered and trapped.
Thanks Brucie for being who you are.

 

[Brucie]

These days words are taken far too lightly. A singer is manufactured by a record company and suddenly they are a 'diva'; a TV presenter does some work on a gardening programme and is a 'guru'; someone kicks a football around and gets obscene amounts of money and is a 'hero'.

Heroes are not self-defining and I can't think of a single 'hero' through history who saw themselves as a hero. Heroism is defined by a person's actions in the face of great adversity. The whole point of heroism is that the person concerned is scared witless, yet still grits their teeth and does the right thing, regardless.

So, sorry, most of us will believe you are a hero.

Take things slowly, and a day at a time. You are strong and don't be afraid to lean a little on your fiancé.

Best wishes

 

[Mjaqmac]

Sage Brucie

Dear Brucie
I have read over a lot of the advice you have given people. You know so much and understand exactly what we are all going thru. I think you should put it all on paper and write a book. It would be encouraging and enlightening I'm sure.
Why not give it a go? Bet you'd find a publisher!

 

[Brucie]

You're very kind, but I am only talking on the basis of what I have experienced in caring for Jan. Other people have had different experiences and may well disagree with what I say. I don't hold myself as being expert in anything other than trying to manage the care for my wife, in my particular situation.

What we have all experienced is intense despair, frustration and anger. In our various ways we have come to terms with what we feel we want/need/have to do, and I think the power of Talking Point is that we can all present our different ways of managing. Others can then learn and decide what they can do in their own circumstances.

That is the key - to understand what are the possibilities.

I have certainly learned a lot from this forum.

I have written books and had them published before - mostly technical books to do with using computers - and they require an immense amount of work. There is a huge added responsibility when such an important topic as caring is involved!

I would say that if the Alzheimer's Society decided to base a book on Talking Point, then I'd be happy to help! That way they would also be able to gain some additional funds from sales.

 

[Jude]

Dear Mjaqmac,

All of the carers who look after family members make BIG sacrifices in their lives. They might drive miles every day after work to visit, or decide to put their lives on hold for a time to devote themselves to full time caring for a limited period. They all decide to do this from a positive point of view. They are not coerced into doing so.

I live in Bali. I have a hotel, staff and a husband there. I decided last year that I needed to spend 6 months in England looking after my parents with the help of carers. The other 6 months of the year I spend in Bali. For the sake of my own sanity I have to do this and it is a non-negotiable arrangement. I made this decision not from feeling guilty, but probably from self preservation.

My point is that, I too have a separate life to lead and I cannot and will not entirely sacrifice it for the sake of my parents, whom I love dearly.

It seems that you have been looking after your parents for years without any help from your siblings. So you have shouldered the entire burden of this so far and now that you want to have a chance for a life of your own, you are being guilt-motivated by some very selfish family members.

I think it's time you made a stand. You have your own life to lead as well. By all means, spend time with your parents, but make sure you follow your own path at the same time. Don't lose your chance for a happy life just because you are feeling pressure from other family members. They have their part to play in this too. If they don't want to help, then that's their problem, not yours!

You can only care for others if you want to do it, not if you are forced to do it.

You need a break - so grab it while you can and negotiate the rest later on. It's time for the rest of your family to help out.
Go right ahead with your personal plans regardless of disapproval from your siblings. I think you have done more than your fair share and it's time the others stepped in to give you a bit of a break.

Jude

 

[Mjaqmac]

Thanks Jude

Hi Jude, thanks for your advice.
I love my parents dearly and have always looked upon them as my best friends as well as parents. Everything I have done I've done with a heart and a half. But the dementia is an entirely different matter. Mum has changed so much, as I'm sure you know yourself, it's like having a small child. My father is afraid of a future alone. Sometimes I think maybe it could work, us all living in the house together and possibly me having a child as well. My fiance is quite prepared to do this, but I would dearly love for us to be alone.
The words and advice I have been given on this site has made me feel differently about the whole situation, and that is only from reading Brucie's reply last night!
You are right, I am entitled to my own life. My mum and dad wanted to be together so much against their parents own disapproval, they eloped as teenagers and got married. 56 years later the marriage everyone said wouldn't work is still going strong through all hardships.
People on this site our making their lives (though difficult) work living with dementia and alzheimers. A part of me is desperate not to go down under the stress of all this and make things work too.
I took the steps today of arranging for my mother to go back to daycare on Mon. She has been in and out of hospital for the past 2 months and the pressure of all day everyday care is getting to both dad and I. It will give me some time alone which I desperately need to think and sort myself out.
My fiance will be coming back here to live for good in the next few months, as he has given up his job in another country to be with me. You have both made me realise I have something very special in him. I have just been waiting on it all getting too much and him leaving, but it hasn't happened and Brucie is right to try and lean on him a bit.
I don't think my siblings will ever change. But as you say that's their problem, not mine.
I think there does come a time in a carer's life when a little selfishness has to come into the picture. Otherwise the willing horse will get all the work.
Thank you for letting me vent my feelings here and for the advice offered. I don't feel like such a bad person now for wanting a life, everyone else in my family managed to get one. I hope none of you mind if I come back again with some of my heartfelt agonies.
THANK YOU

 

[Jude]

Dear Mgjqmac,

I'm so pleased to hear that you've started to make some positive decisions about yourself. Go for it...! You owe yourself big time.

You can always pour your heart out on this website. That's what it's for. You will ALWAYS get support here. It's my lifeline to the outside world. Sometimes, I've ranted and raved in my posts and then I've felt so guilty and horrified about it afterwards that I've almost been too embarrassed to check my mail. And guess what - there has always been someone who has said 'Yes, I feel exactly like that' or 'I know how your feel'. I've never been censored for my feelings of despair, rage, guilt or tears. These people have shared my sorrow and my joy and my silly jokes. We've never met face to face yet, but they are an incredibly supportive family.

Keep going! You will have 100% support from everyone. That is the wonderful thing about the contributors here - everyone understands - we are all in the same boat.

Maybe you know that Simon and Garfunkel song, Bridge Over Troubled Water, which goes something like...

When you're feeling down, When you're feeling small, When tears are in your eyes, I will dry them all. When times get hard and friends just can't be found - Like a bridge over trouble water, I will lay me down..... etc etc, and the final words are 'I'M SAILING RIGHT BEHIND, LIKE A BRIDGE OVER TROUBLED WATER, I WILL LAY ME DOWN....'

Well, I think that this website should adopt that song as it's motto, because that's what eveyone who contributes to this site does for everyone else here. God bless 'em.

I'm here to help you. You will help me too.

With love and best wishes, Jude

 

[Mjaqmac]

Felt a bit daft too Jude!

Hi Jude thanks for reminding me of that lovely song. I know it well and when I hear it now I'll think of my new friends on this site.
I'm glad you said there have been times when you've vented yourself here then been embarrassed etc.
Felt a bit like that myself after posting this (I sounded a bit like Harry Enfield's "Kevin" character!), but I was desperate to talk to someone, and have been feeling so sick and tired of carrying all this weight. Especially when the siblings slime in and out of the house, telling you how wonderful you are and that they couldn't do it, then slip off again while I'm standing there seething!
I'm glad that I did post though, as I respect the opinion of those in the same situation as myself. Only another carer can know what the bad times are like watching a loved one suffer, and the terrible frustration and emotional hell that rages within you. There are of course, good and funny times too, but it's not then that we need some support.
If I can ever help Jude I would think of it as an honour, but I think your pretty savvy at counselling yourself!
Thanks again to you and Brucie.

 

[Jude]

Dear Mjaqmac,

I have one brother who is a wonderful chap, but he's totally and utterly useless at anything social. So I get to do everything! This quite often annoys me intensely, as he seems to think this is what I should do, being the 'daughter'. He can be very thoughtless.

My brother lives in Cumbria and comes down to us twice a year - more work for me as he doesn't help at all when he's here. It's not intentional - he just can't seem to understand that the oldies are not themselves any more and he winds them up when he's here. I think it frightens him.

Sometimes I get utterly sick and tired of being the one who carries the can. I have to keep reminding myself of WHY I am keeping them at home. This makes things better for me.

I wonder if your siblings are scared silly of the facts of AD. Some people just CANNOT cope with the reality and the easy option is to avoid thinking about it and offload the problem on to somebody else - which is you.

Even if they are doing this unconsciously, or are just too slack to help, then you have to set parameters for their behaviour as well. You have your own life to lead too and cannot afford to sink under the weight of family. Your fiance sounds like a great bloke - but it's not going to be fair on either of you to shoulder the burden of care entirely alone. You have to have time out to develop your relationship together. Don't get into the position where your siblings view your fiance as just another unpaid carer so that they can shirk their responsibilities even further.

The outside carers are there to help you and your father. You need to trust them to do their job, without worrying when you are away.

My grandmother, who was a cluey old stick, always beat two things into me when I was a child. She was a wonderful role model and a very caring person. She did a lot of work for the WRVS and spent her life cheering people up. She died at age 96 and still sharp as ever. She died because I think SHE decided to go then because her body was failing and she didn't want to hang around and she was entirely capable of making decisions like that! She was brilliant.

Her words - The first was, 'you die if you worry and you die if you don't.' The second was 'the only difference between a rut and a grave is the depth'. Pretty good stuff I've always thought.

Keep going. Hang in there!

Jude

 

[Mjaqmac]

Siblings!!!!

Hi Jude, I decided to broach the subject of caring for mum today with my sister. I told her that I was nearly on the verge of a breakdown until I spoke to other carers whom gave me a little strength. I said that I had been feeling awful and it was so hard and that the outside help wasn't up to much.
She said that because she and my brothers didn't live in the house there was nothing they could do and mum was dad's responsiblity anyway. If I couldn't cope with all this anymore then dad and I would have to make other arrangements.
I never realised my own flesh and blood could be so heartless. Let's hope that her one child doesn't take the same view if she becomes ill in old age and decides that if she no longer lives in the house with her mother, she is no longer her responsiblity.
My brother told me that I had to look after myself as he wouldn't want me becoming ill and mum having to go into a home.
You know Jude, I'm past the crying stage now and just have to laugh.
Siblings!

 

[Jude]

Dear Mjaqmac,

Crikey! Well, at least you know exactly where you stand now and the ground rules have been well and truly established. You can now get things organised to suit yourself and your father and your siblings can hardly complain about anything any more.

Well done for speaking out and sticking up for yourself. Keep going. Dealing with them will be a whole lot easier for you now.

Keep in touch.

Jude