Hi everyone,
For the next edition of The Parkinson (our membership magazine), I am going to be writing an article on carers in the sandwich generation - where you are caring for a parent and looking after your own children.
Would you be willing to share your experience of this?
Thanks in advance!
Hi,
I have parkinsons and am a parent of Three,Two youngest still at home and also a Grandparent of Three.As a parent my children all require support in various ways,be it emotional or financial.As a Grandparent,looking after the Grandchildren is also a requirement.Free weekends are now an occassional luxury.
My parents,well the one's who adopted me,both require looking after also.My Mum is in a care home 200 metres from my house.My Dad,is only just managing to stay at home because i sort everything out on a daily basis.I sort everything,there is nobody else.I have power of attorney and constantly feel that their lives are totally in my hands.They wanted to withdraw giving fluids to my Mum last year in hospital.Let her slip away.She was admitted from the care home to hospital with de-hydration and advanced alzheimers.It was my decision,i chose to fight her corner.I don't know why,because of many bad childhood memories i have.But a life is a life and she pulled through,she is still with us and still in the care home.She actually looks in better health than my dad now.He has steadily worsening dementia and a couple of small strokes.
I feel totally stretched from all angles.My eldest Grandchild is 6 years old,my Mum was admitted to the care home following 3 months in hospital in November 2009.November 2009 being the exact month and year that i was dianosed with parkinsons.At the time,i don't think my diagnosis sank in.I was working part time,looking after the 1 grandson at that time.Whilst my daughter was at collage work placements.My sons were still at school,had at least 4 evenings a week taekwondo lessons,plus the competitions and other parenting duties.My Wife and i had no own time.No such thing as holidays.She worked full time.We switched roles a number of years previous,due to circumstance.
My Mums Alzheimers was steadily progressing leading up to 2009,i was constantly on hand,because she would try and escape her home,because she thought she lived somewhere else,perhaps from when she was a child.I would have to take her on a drive,she thought i was taking her back home to the other house.We would arrive back at where we began,then she was content,she recognised her home again.I would take her back to our house,just to relieve the stress off my Dad.I now bring my Dad back to mine,because there is nowhere else,he is not sociable and refuses all help.I know it is a matter of time when i have to throw my hands up in the air and admit defeat.I feel that will be like a death sentence to my Dad,there are things he has seen that he is not happy with with my Mums care at the home.So he will not be a willing candidate.So i struggle by,hoping when the time comes,the decision will not have to be made,it will be taken off me.
At the same time whilst my Mum was still at home,my Wife's Father was in the advanced stages of Alzheimers.Because my wife worked full time,i had to sort everything out there also.Take him on days out,back home with me,just to give my Mother-in-law respite.He slipped away rather suddenly in oct 2008,from pneumonia in hospital.My wife and i sorting out all the aftermath and funeral arrangements.
During 2008 i had begun investigations for a number of problems i was having,including the probability i had cancer.I had been peeing blood etc.My body was basically shutting down,i just thought i was dying.I remember being in agony.I was barely eating.Yet during the 3 months leading up to my Nov 09 diagnosis,i had to make 2-3 daily hospital visits by car with my Dad,to basically keep my Mum alive,feeding her,coaxing her through.The staff in the hospital either diden't have the time or inclination.I honestly thought i would die before my Mum.
My Mother-in-law is not too good also now,so i am often needed on all fronts.I didn't know back then that i had a personality disorder,probably have had since childhood,adandonement issues etc,things turn inward and i hate myself.Maybe why i curse people under my breath,then battle like a lunatic to keep them alive.I am still awfully mixed up,but therapy helps.I find though that i am constantly surrounded by death,it is all i see,my Mum,the care home,my Dad,myself.I self-harm,but have had a good recent months,i have dissociation episodes.I had my licence taken away for dissociation.But again,a good few recent months,i think.
When parkinsons meds were prescribed on diagnosis,1st Azilect,then Mirapexin(we all know DA's eh!)it was a new lease of life for me.Physically,it was like a miracle.Psychologically,i was still pretty messed up and floundered from one counsillor to another psychologist,psychiatrist,before being put on Anti-depressants for depression,social anxiety etc and finally borderline personality disorder.In the midst of this i had a steadily worsening Gall bladder removed.My terrible treatment of which in hospital i made public on here.I think i suffered some sort of post traumatic stress.My dad has no clue of this,knows only of the parkinsons,but doesen't realise what it is,i mask it all.
It is the constantly changing mask we all have to wear,in varying degrees.I liken it to the"worzel gummidge effect"Changing heads to suit the moment.A switch,from calm to bouncing of the walls,then calm again.My Wife is amazed how i can do that.I think most people do it,though there are some that don't have a conscience.
My biological Mum,i visited for the 1st time in 9 years a couple of weeks ago.It tore my soul inside out,i try to connect but there is nothing coming back.It upsets me deeply,because i am always there for my family here.But deep conversations with my half sister who lives near my Mum have helped me rationalise,pigeon hole my turmoil.
I find that putting my feelings into words is my best release,recently resumed painting again also,which has a similar effect.Some people have founds some of my poems upsetting or depressing.It is just a way of coping,swapping heads,venting feelings that can't be released any other way.
Anyway Karen S,i bet you wish you haden't asked,have tried to keep brief.
Take care
Titan
Hi,
As an afterthought.It would be natural to think.Think of all the good things and the grandchildren.This can be done to a certain extent.Then the mind drifts and i disappear into thought.I picture my children and grandchildren older.Thinking back to when they were younger and i was still alive.I feel the tears welling up and my heart sinking into some other place of comprehension.Knowing,that at that moment i won't be there to help them,guide them,comfort them.They will be all on there own.There is nothing i can do.In the same way as in films,when a person is dying and they call out to there deceased mother.I can't be there,i feel that future moment as reality,right now.Predicting and imagining and feeling future things.The probable,the upsetting.Looking into the eyes of my family now i visualise the event.I want to tell them now how sorry i am that they have to die,that i can't help them and there's nothing i can do.As i try to control my own death and see it mirrored in my Fathers/mothers eyes.I pull on the mast,the other head.
To dwell too much in the"end of life",certainly affects the now,it does with me.Sandwiched between the young and the old,both spectrum's become tarred with the same"depression brush"over time.When just getting to the end of the day and collapsing into bed is a relief,if able to sleep. People can say what they like about this post,i post how i feel,it's the only way i can
Take care
Titan
Hi titan,
Thanks so much for sharing your story, I really appreciate you being so open about your situation.
If you would be happy for me to include some of your experiences as a carer in the article I am writing, we could talk again next week over email or by phone?
And course, please don't forget about our helpline which can offer help and support (0808 800 0303).
Best wishes, Karen
Hi Karen S, how can I come by a copy of 'The Parkinsons' membership magazine?
Thanks Sheffy
Hi Sheffy, the magazine goes out to members of Parkinson's UK. If you are interested in becoming a member, there's more information here. If you have any other queries though, please do let me know!
