Fighting for the care my mum needs, a frustrated daughter


#1
I am so concerned for my mum. She was diagnosed 2 years ago with PD. I work in Neuro delivering activities to those who have brain injury, illness etc so I thought I could help my mum, it appears I am as frustrated and feel as hopeless as the families and carers I work with.

My mum has just been transferred out of A&E as she had an attack of pain in her abdominal, leg and back areas. She has been plagued with UTIs but also could potentially have an underlying functional and orthopedic knee issue which has simply not been investigated, she has a date in July which has taken 12 months to get due to GPs not understanding her condition. All professionals, bar the neuro consultant are shrugging her off as someone with PD rather than someone who has other issues as well. She therefore gets less care than I, when she actually needs more! She is now stuck on a rehab hospital ward with elderly people playing bingo whilst being given codeine which she has had a bad reaction too, maybe clashing with her meds. I wish more professionals had knowledge of PD and knew what to do at ground level.

I really want to be strong for my mum and use the knowledge I have of the way health and social care works but I find myself tearing my hair out trying to make health professionals listen to my mum and my brother and I. My mum is too nice and does not want to bother or cause unnecessary difficulties for others or be a burden. She is such a lovely lady and has battled the loss of two husbands (we lost my dad to a sudden major and global stroke 10 years ago) and cancer. She now finds herself battling once more.

I know that PD is degenerative but I thought I was ready to see the difference in my mum, it has happened far too quickly and I fear for the future. I took her to Thailand for her 60th, now I can barely take her to the supermarket at the end of the road. I have a newborn son who I want to know his nanny, I am scared that he will not be in time to know what a fabulous lady she is and how much she loves him.

#2
Please keep on fighting. I think there are many on this forum who will recognise the behaviour of the health professionals that you are describing. Somehow the pwp becomes the condition and nothing else is thought about.

It may be that you can use your experience at work, a bit of insider knowledge, as a lever to help your mum.

All the best to her and you.

#3
Hello Clur16

What a sad story you tell about your dear Mum but it would seem not uncommon regarding her PD. Have you any PD nurses that you can contact and talk with to get advice and help?
It must be so hard for you also with a new baby and looking after your mum. Keep fighting for the care she needs. Don't give in.
PD is such a cruel disease and frustrating not only for the families but for the person living with it. You care so much for your mum and want the best help and care for her which is commendable to you.
I wish you and mum all the best. And please keep us informed how everything goes.

Best wishes from PB x

#4
Dear Clur16

So sorry to hear about your Mum. I don't know enough to give any advice, but am thinking of you & your mum.

Don't give up on anything however.Try to get help.As regards the PD, I believe there are lots of different meds that can be tried. Hopefully one of these will suit your mum.

All the best. EM

#5
Dear Clur16,

So sorry to hear of your mum's problems it is always so difficult when this happens to a very loved one, If you think your mum has deteriorated quite quickly which sounds like it, perhaps you could question the diagnosis as several other conditions can be put under the pd umbrella only to be changed later.
As said before we can all relate to the difficulties you are having re the professionals and even when it goes okay we have found that the nurses are most resistant to listening to relatives who have lived with the person and usually knows more about pd than they do, I just wish they would realise that we are only concerned with looking after our relatives and we should be working together. I am still having these problems with the care home my husband is in and has been for almost two years, it would save all of us a lot of anguish if they would change their attitudes.
I do hope that something will get sorted soon and do get in contact with the pd nurse or the helpline.
best wishes
vivian