Caring for mam

[Pippa]

HI I am caring for my mother who was diagnosed with MND 1 year ago. Onset 3 years previous. All the family are trying very hard to cover 24 hour care. I have been following discussions on this site which have helped us to make decisions during our journey; as I have found that the community nurses that are appointed to Mam have no understanding of her needs and makes us feel that our concerns are not important. Does anyone else have this problem?

[Ellie]

Hi Pippa and a warm welcome to you.

Sorry to hear of your mam’s diagnosis.

She isn’t alone in having a community nurse who isn’t familiar with MND but that’s not an excuse for making you all feel unimportant and lost - there is plenty of info sources available to them, should they be bothered to look 🤨

Is your mam linked in with any other services – occupational therapist, dietitian, MND nurse, palliative care nurse etc? Often these professionals are more important, or equally as important as community nurses.

Is your mam entitled to any homecare hours?

Take care.

Love Ellie.

[matthew55]

I am very very lucky to have a community nurse that is well known by my Hospitals MND department. The district nurses are another matter. I find explaining a pain but vital for the next poor soul. 😊 x

[Pippa]

Thank you for your reply.
After Mam was released from hospital 4 weeks ago she was given weeks to live. At this point We were then given x4 care calls with 1 person a day for changes etc. We were told that it was from the coved fund as we had previously been refused CHC. We are trying to get more help with mams care due to work commitments and Mam requiring full care as she is bed bound. What I am finding is the community nurse says , because Mam is still strong and can push through her feet to move herself (she doesn't have the strength in her legs/body to move or position herself) she cannot get more hours.
Am I allowed to ask for a different community nurse? When I contacted the Macmillan nurse she said she had been told by this nurse that Mam was able to help herself during personal care. What I am wanting is a nurse who understands our needs and will support us in decision making. Any help appreciated

[Pippa]

Since Mam has been released from hospital all of the specialist teams have withdrawn . We only have community nurse and Macmillan and of course her own doctor involved now

[Charlie86]

Dear Pippa
could you get a referral to a local hospice. My mum is under the care of a hospice (but she lives at home still) and they act almost like a social worker- that is sourcing help and contacting people on your behalf.
I'm sorry you are having to deal with this.
Charlotte

[Ellie]

Hi Charlotte and Welcome to the Forum.

Yes I agree - hospices are fantastic resources and tend to get things done.

Take care.

Love Ellie.

[Ellie]

Pippa Your Mam could request a change of nurse but that's not always possible. She needs urgent input from an OT, occupational therapist re her physical abilities (that nurse hasn't a clue)

Is your Mam not under the care of an MND Clinic/Consultant? If Macmillan is involved, can they help reapply for fast tracked CHC? It's worthwhile reapplying for it.

I'm so sorry you've been left with little or no support. Why not ring the MND Connect helpline to see if they can help too with practical info.

Love Ellie.

[Jeanette Pearce]

Hello Charlotte

As soon as I was diagnosed the Dr who diagnosed me put a care package in place immediately

I was given an Occupational Therapist, nurses and equipment...

I don’t understand after a year of being diagnosed with MND that there is no package of care for your mother

I hope you have sought advice with your GP and MND Connect

Best Wishes

[Pippa]

Hi all, sorry for the delay in getting back to you. Mam passed away on Saturday night peacefully in her sleep. I’m devastated and exhausted through having to fight with services to support mam. I managed to get in touch with MND team who were going to come out to see mam this Wednesday. Mams Doctor was amazing, just a Young girl she visited us frequently alongside ringing to see if we were all ok.
Thank you for your kind advice x

[richard]

Pippa I’m so sorry to read this. My thoughts and prayers and with you and your family. Richard

[matthew55]

Once more I have been where you are and it's ****. Time, that precious commodity, is truly the only thing that helps.

[Barry52]

Hello Pippa,

Please accept my condolences. I am saddened that the services let you down at the time of most need.

Barry

[Ellie]

Heartfelt condolences to you, Pippa.

Wishing you strength and peace.
Love Ellie.

[GaryM]

You have my deepest sympathy, Pippa .
At least you know that you and your family did all that you could have done for your mam. That should give you some comfort.