My Mum and end stage Parkinsons


#1

Hi im Danny,

my Mum has been fighting Parkinsons for 10 years or so. She is at end stage now and suffering badly unable to eat or drink kr communicate clearly and on a drip.
My Dad and Sister and myself and family are by her side in turns everyday.
My Dad and Sister seem to be starting to grieve but im not. People have said that im handling it really well but they dont know that im avoiding thinking about it. When im with Mum im numb and hold her hand while she sleeps or try to talk while awake.
Im starting to have overwhelming feelings of dread and terror is the only way i can describe it.
The end is near as they will remove her drip tomorrow. I fear a brrakdown if I dont speak with somebody.
I’ve had a very close relationship with my Mum over the years. Taking her out every week for a coffee and toast and shopping every Friday.
She used to drive me to footy and watch me play every week when i was a youngster and has always been there whatever the situation.
She doesnt deserve this and its heartbreaking.
I have a wife and two girls and am clinging on to them for dear life. Although they dont know my true feelings the girls are too young.
I fear if i start to cry I may never stop


#2

danny im so sorry to hear this. for 8 years after diagnosis i was a marie curie nurse and took some time off for my meds to bed in. my first patient on my return was end stage parkinsons which my boss was reluctant to send me to but i insisted on going to the man and im so glad i did, there was no trauma or visible signs of pd and the patient was kept comfortable and pain free. im sensing its your own feelings youre finding it difficult to cope with and not knowing you as a person it would be wrong of me to venture any thoughts. all i can say is when you feel like crying then cry, its testament to the love and closeness you had with your mum.your children will learn that its ok to cry and be down but they will also be your reason to keep going. ah i really feel for you, all i can say is talk to each other and keep the memories alive. you will get through this , im thinking of you.x


#3

Hi @Danny,

A warm welcome to the forum.

I’m truly sorry to hear about your mum. I can’t begin to imagine what you are your family are going through but my thoughts are with you. Please know that you can always contact our trusted helpline and speak to one of our about what you’re going thought so that they can offer you the help and support that you need. You can call them on 0808 800 0303 Monday-Friday: 9am-7pm and Saturday: 10am-2pm, but please note that it’s closed on Sundays and bank holidays.

We also have information on of the different forms if counselling available to you on our website here, https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling.

Do tale care and I hope you find this information useful.

Best wishes,
Reah - Forum Community Manager


#4

Continuing the discussion from My Mum and end stage Parkinsons:

Hi Danny,

I’m so sorry you are going through this. My Dad died the same way in April. There is no easy way through it or right or wrong way. I was terrified durung his final days when the drip was removed but I am proud I was brave enough to BE there. I talked to him, read the Bible, prayed and sang to him. He had a good death if you can say that. I was numb afterwards and didn’t cry at all after he died or at the funeral for weeks afterwards. Then the tears came. I am seeing a counsellor to help with my grief and it really helps.
All you can do is be there right now for your mum and honour the love you have for her. I adored my Dad. You never get over it, just used to it.
Make sure your mum is as comfortable as possible and ask for vallium and morphine in the final days as that helps with pain and jerky movements. A great web site I found called www.deathmatters.com was incredibly helpful for my Dads final days. It reassured me that he wasn’t in terrible pain and how once fliud is withdrawn that the brain produces huge amounts of endorphins which eases their passing. She can still hear you so chat all you can and make the most of the last times you have together. Much love x