Feel so guilty for how I'm feeling

[richmond1]

Mum has psp recently been diagnosed but it has progressed to end stage because she also has severe arthritis it has been masked. She has a peg tube for feeding no longer able to swallow she can walk a few steps holding onto her. I work full time and all my spare time is spent there supporting mum and dad. She needs turning during the night. It's constant which isn't mums fault and I feel so sad for her it kills me seeing her. The problem is they are entitled to help but they both refuse it they have become so dependant on me and in a selfish way expect me to do it, I don't feel like a daughter anymore I feel like a carer and I don't know how to explain this to them without hurting them. I go to bed most nights crying.

[NannaB]

I had the same problem when my mum had Altzheimers and was being cared for by my dad. Both were in their 80s. I also had a full time job and was going to shower her sometimes ( if she'd had an "accident", before work). They refused help so eventually I contacted their GP and social services and that got the ball rolling. I still went to see them every day but much of the burden was lifted. I did get annoyed when I read in the carers notes, " Offered to do washing but Mr W said his daughter would do it). I had been doing all their washing for 3 years but stopped that day. I did feel guilty but then changed my thinking. It was them being selfish expecting me to do things others could have done.

I told them I couldn't continue caring for them and working and I wasn't giving up work. I told them I was contacting SS and their GP. Dad said he didn't want outsiders involved but I told him I wasn't going to do what I'd been doing for years and things had to change.

Both my parents were still alive when my husband was diagnosed with PSP so my caring role was transferred to him.

You have nothing to feel guilty about. I wish I had got professionals involved much sooner. Physically and mentally I was exhausted. OK, I am now as well but I vowed when I married I would stick with things in sickness and in health. I made no such vow to my parents. When the pressure was off, my almost daily visits were to make tea and chat or take them out, not to work.

Ask your GP about NHS continuing health care. My husband has a night carer 5 nights a week to turn him etc.

I do hope you manage to get the help you all need.

X

[easterncedar]

Don't feel guilty! Insist on getting help in. Of course it's hard for your parents to lose their privacy, but they will get used to having people in, who will then not be strangers after a while. You have to save yourself. You will of no use to them if you drive yourself to collapse, and you need to value your own life a bit here, too. NannaB's experience is a good example. Hang on! Easterncedar

[richmond1]

Thank you for your kind words and support, deep down I know what I have to do I just need to find the courage to tell my parents how I'm feeling and what needs to be done. They has chc assessment done before diagnosis of psp and did not qualify for nursing care they said it was all social and mum and dad would have to pay for that because of their savings.

[jillannf6]

IT IS WORTH APPLYING AGAIN FOR THE CHC -= I GOT IT 2ND TIME AROUND AFTER BEING DXD IN DEC 2010 WITH THE PSP= THE LOCAL HOSPICE GOT3 IT FOR ME BY A CHANGE FO APPROACH PN TGHER MEDICAL GROUNDS RATHER THAN FOCUSING ON THE SOCIAL ASPECTS

IT IS NOT MEANS TESTED AND MEANS MY DIRECT PAYMENT S HAV E INCREASED FM THER LOCAL COUNCIL AND I CAN AFFORD MORE CARE

SO IT IS WORTH TRYING OT GET IT - WHICH PART OF THE UK ARE YOU IN?" I AM IN N.W ENGLAND

;LOL JILL

HUGS AND XXX TO YOU AND YR FAMILY

[jillannf6 in reply to jillannf6]

HI THANKS FOR,THE RECOMMENDATION WHOEVER MADE IT!

;LOL JILL

[Heady]

Hi, I know how you feel, my husband has PSP and to be totally honest it's "£&@££&&@,"

I have just being going through my mother being diagnosed with Alzheimer's, her partner was not looking after her, in the end we had to put her in a home, on safe guard issues. Not easy!!! Your mother's welfare is paramount, if your father is not accepting what is happening, you have to step in! Get In touch with social services, their local hospice, Marie Curie, they will all help. The last two,for free,if your father is worried about money. Is your mother receiving Attenance Allowance? This is not means tested (I am presuming you are in UK!) get in touch with their doctor, I know they won't talk to you, but make an appointment, so they HAVE to listen to YOU!

I am afraid with any terminal illness, your relationship changes with your loved one, you must get help some how. With my Mother, I'm afraid my sister and I had to go in heavy handed, slightly easier for us, as it was not our father, we were dealing with! Please please get help for your parents, for your own sake, if they don't accept it! Don't feel guilty about going behind their backs, it is a must!!!

End of life is not an easy part of life for anyone, do what YOU think is right. It's all you can do!!,!

Sending you lots of love and hugs

Lots of love

Heady

[jillannf6]

i agre e with what heady has said

you must took after yourself too

lol Jill

[Hidden]

I also agree with NannaB and Heady - you must get some help and support Richmond1. My sister and I were in the same position as you and we had to be tough and tell our parents we couldn't cope any longer. We were physically and mentally exhausted working, own families, looking after mum and watching psp take hold. As this awful illness progresses you won't be able to physically support your mum's personal care, as she will need two people.

Reading your post brings back memories of my mum who passed away a few weeks ago, 5 years after being told she was end stage. It will be a difficult and painful journey ahead and you must look after yourself before you become too exhausted. Once you get support in place your time with your mum and dad will become quality time and you will feel like their daughter again.

Good Luck xx

[richmond1]

Again thank you all for your kind replies, this site is such a support no body else understands what this awful disease does and how it affects everybody involved xxxx

[rocklady73]

you need to speak to their doctor for help