Caring for mam

[Jeanette Pearce]

My deepest sympathy and take comfort that you and your family did all that you could for your Mother... Remember the good times with her and be grateful for all your time with her. Grieve now for your loss. Memories of good times will always remain with you.

[Nettie]

So very sorry for the loss of your Mam Pippa 😢 Janette x

[Deb]

I am so sorry for the loss of your Mam, Pippa.

You sound like such a loving, caring family who did everything you could for your beloved Mam.

Thinking of you,
Love Debbie x

[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.

[Ellie]

Heartfelt condolences to you, Pippa.

Wishing you strength and peace.
Love Ellie.

[Barry52]

Hello Pippa,

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

Barry

[matthew55]

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

[richard]

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

[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

[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

[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.

[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.

[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

[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

[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