To all the carers - How are you feeling today?

It appears i am blank.

What is this section.This question should not be asked of those"on the edge".How does this all work.Am i naive in my cleverness.Who reads,who doesn't.What does logging off do.Does it work.I thought these were my personal drunken thoughts.But the point of caring has perhaps now been passed.
Who to trust in this life,it is hard for an empath such as myself to understand.I see the good,behind which is hidden bad.Yet strive to see the good.Understanding the bad that resides within.Do we all contain some bad.Don't think too hard,is so easy to resolve.
An empath feels everything,and i mean EVERYTHING.That explains my emotional issues and Borderline personality disorder(un-cured,should i add).Feeling too much,loving too much,everything you name too much.A flippant remark instantly forgotten by yourself,stays with me forever,after weeks of deep turmoil.Only like me's will understand.The constant voice of reason,the peacemaker,the fall guy,the protector of those weaker,perhaps misunderstood.The un-conformist riddled with guilt,yet set on principle.The forgiven when wronged or abused.The person who stands by you when all else fails.Yet is constantly deserted in own times of need.
I could go on forever,but forever gets too deep.
Back to today,
My Dad(adoptive dad)was ill again today.He is 90 years old.A strong caring vein runs through me.I try my best.I get frustrated.I am ill myself,in so many ways.Is there resentment there caring for my dad.I think frustration is the word.He doesn't understand.Or does he.Anyway.it doesn;t matter.He has dementia,he is scared,i am his only constant.I feel so sad.So sad at his unhappy end of life.I was there all day today.This Health sevice is SHIT!.How i bit my tongue.How am i so patient,as anybody who knows me.My patience spills over.So if anybody who reads this understands drunken rants,good,they are what they are.Emotions at the time,constantly hidden.Oh the secrets i keep.You tend to,when totally unloved.I have to give all to be loved,Yet never feel true love.Could never accept if real.Rear is unreal to people like me.We exist in fake.Are used,trodden on,abused.Usually end up as suicides.It is unusual for me to still be alive.I am amazed.So depressed at my own.I wrote a poem once called"Happy sad",maybe i should post it.I have the most profound depression,but now know that it can never be cured.Many recent revelations confirm this.
Anyway,
THIS !,then "Happy sad",it does not mater now.Rip me open!
Hi,
I was diagnosed in Nov 2009.The very same month my Mum went into residential care.She is still there,just.My Dad has taken a downward spiral since.He is now 90 years of age.He is still at home,just.I visit him daily.Am his only daily family carer.I shave him and look after him,do most things for him.I have power of Attorney.He hangs on at home,unhappy,he is lonely in his dementia.Yet does not desire a care home.After a recent spell in hospital,he now has 3 visits a day from carers and meals on wheels once a day.Yet,it is still me that he needs care and reassurance from.The need to see me,the constant phone calls.The running of his and my mums end of life affairs.I never let my facade slip.His increasing dementia is a wall to high to broach with problems of my own.
I shave him with increasing tremor whilst looking with gut wrenching sadness at the reflection of my future.He has no comprehension of my condition.Has no idea of my emotional state.So i just carry on,because there is nobody else.The stress eats away at me.His moods and depression stifle my own.Many a time,i cannot breath.So sad with everything,to be lost within lost waiting for the end or something to give.Leaves not a lot of scope for enjoyment.
Nobody can help.Time has to play out this sad scenario.I often wonder who will go first.I feel time is running out.Following the rut that runs parallel with my Fathers,wondering just how much i can take.As everyone i thought cared,disappears into their own lives.Because they have no answers.
I dread each day
Today is now tomorrow.
Here again for persecution
From a while ago,this site should not ask people how they are today.They may get real.This is just the toned down,tip of the ice burg.Check my wrists .I suppose i live for others.But just need the basic truth of love,never had,just abuse and used,controlled.
Happy-sad
---------
Yesterday I was Happy-sad
I suppose the happy part can't be bad
Something happened,I can't say
Turned the sky Blue tinged with Grey
It's to do with love,care,life and trust
Now staring at the settling dust
Of time built hurt in residue
Finger trace each problem,start anew
Most dust that settles blows away
Some never goes,is here to stay
Adheres,invades our very being
Breathe shallow when through light truly seeing
What could,what has become of you
Sometimes there's nothing else to do
But be yourself and ride life's tide
Try to keep the pain inside
Because,yesterday I was Happy-sad
Both concerned my adoptive Dad
Something happened,I can't say
Just that he's Eighty Eight today
Now 90 just the other day.
We are all just"Living dead"
You know i am right,Empaths see right through it

Repeats are often necessary,but who cares anyway
Goodbye!
 

 

1 Like

Being a PwP for over 10 years now I'm fortunate to still be fairly independent.  That doesn't mean I'm not difficult to live with or care for.  I started this thread as an initial thank you to my wife while I'm still able to recognise in some way how this is affecting her.  I also felt it important to open the thanks to all carers so feelings could be expressed and hopefully support be provided.

I don't have the experience to know what assistance is available and suspect that the support nation/worldwide is extremely varied.

In preparation for the long haul ahead I've begun online searches for answers while I'm still capable.

This search appears to have some very useful links once you read past the advertised links at the top.

https://www.google.co.uk/search?q=how+can+you+get+support+in+caring+for+someone+with+Parkinsons&oq=how+can+you+get+support+in+caring+for+someone+with+Parkinsons&aqs=chrome..69i57.44434j0j4&client=tablet-android-pega&sourceid=chrome-mobile&ie=UTF-8

There's a lot of information out there.  Hopefully, those in need will find some answers.

A key fact I have learnt is that carers need caring for as much as PwPs.

Take care

K

Hi Titan,


I am truly sorry for the way you are feeling at the moment. As Alethea posted last month, our helpline is there to give you support on 0808 800 0303. Please also consider getting in touch with the Samaritans on 08457 90 90 90. They are there to listen to you talk through your experiences, worries and troubles.


Best wishes to you and your family,


Min


Moderation Team.


I was diagnosed last June. So far the symptoms aren't too bad, although I now recognise that  I've had some of them about 2 years without connecting them.

My neighbour had Parkinson's. I saw how he deteriorated and how much care his wife had to provide. She had the help of a Parkinson's nurse and paid for respite one day a week, but still had to undertake the majority of caring herself.

I was engaged to be married before i received my diagnosis and now I don't know what to do. My fiance still wants us to marry, but I don't want him to be automatically stuck with the burden of care for me. I would prefer, when the time comes, to go in a home where he can come and visit me and take me on outings if possible. I know I won't make a good patient and I don't want to destroy my relationship with him by having him as full time carer. He deserves more than I can give him now.

 

Hi Maddie23

Go ahead and enjoy your life to the full and still get married and make the most of it. Even though your neighbour went downhill be it slowly or quickly, it doesn't mean to say you are going to be the same, we are all different in how we progress with parkinsons. Why should you be held back in your happiness just because of this parkinsons, the caring part may be a long time away, why lose out on a loving relationship when the caring might not even get to that stage.

Think long and hard about this before you ruin your life, make sure you are making the right decision. My thoughts are with you

Sheffy

 

As a bereaved carer, I read all the above posts and could relate to almost everything everyone said! It was a role I didn't choose and never realised how big the job would become. But I guess I did choose in someways to be the type of carer that I was.

I wanted to do what I could, I wanted to help make things go smoothly, and I wanted to be there for my Mum when she needed support and help. (BUT I didn't choose to be stressed, tired and have a role change from being my mother's daughter and become my mother's mother! Felt like it somedays.)

I didn't join this forum till after Mum died, nor did I ever join a carer's group - tried to attend some events but my job got in the way - or Mum had a crisis. But I did use the helpline for an unload when things got tough and to ask questions. Mum's GP said to me that I should never feel bad about telling Mum "No, I can't do that!" and let her know that I needed a break. That was tough advice but I followed it (sometimes).

People who are not carer's cannot really grasp what it is like and every caring situation is different. Every PwP has different needs and all individuals react and cope with things in the way best for them.

When I cut my hand and had to go to A and E, in a strange way it was quite a nice change to have people ask how I was!!

One good thing about Mum moving into a nursing home - (I brought the subject up with Mum when things were too much for me, and she thought about it - then had to have a period of respite care - and  decided that she would move.) - was that I shared her care with others, (and no more waiting for the carer's to turn up or for the carer not to be there when there was a crisis - so I'd get  called...)

But perhaps the best thing is that I became her daughter again.....

A carer's job is not easy - but it is rewarding, and I wouldn't not have done what I did - but I should have said "No" a little more often and it wouldn't have made any difference!

So thank you for asking how the carers are!

Keld