What help is there?

[MW6]

Hello again.
I'm just wondering what kind of help and support people get from agencies or clinics etc.
I am really struggling now. My dad now needs me to shower him and I'm really worried about him being on his own. He does have an alarm now incase he falls. He weighs little more than 8 stone now and I just don't know what is going to happen.
the worry is just constant for us but he refuses to acknowledge He needs more than we can help with. He is so happy still bless him and so positive

[Ellie]

MW6 At this stage, have you and/or your brother been able to have a conversation with your dad about how you're both struggling to care for him whilst juggling work and your own families?

There is help available through the Council (means tested) or through the NHS (based on need, not means tested) but your dad kind of has to acknowledge that outside help is needed, then agree to having carers...

I know he refused a feeding tube but that doesn't stop a Dietitian keeping an eye on him, likewise a Speech and Language Therapist - do any healthcare professionals visit him?

Has he been referred to his local hospice yet?

Love Ellie xx

[DeeH]

MW6

Also you and any family can get help for yourself, alert your GP that you are a carer. Phone social work and ask for a carers assessment, or even to chat through your opitions or what is available. it is hard to care when the person, doesn't want help from outside. and you don't know what is available.

You can ask his GP for a community nurse assessment. If he has lost weight he maybe at increases risk of pressure problems on skin.

An OT assessment for equipment, it is a post code lottery but some areas supply free riser chairs. Shower chairs, grab rails and other things.

I know it can feel all on you and family but do reach out for help yourselves.

My husband has refused councelling but I get family support calls from the Hospice, as it is a potentially life shortening condition.

We have a video appointment in March for a dietician and SALT (speech and language therapist) has been out.
The district nurse came and checked husbands skin, we have a hospital bed with pressure mattress. From equipment services.

Up vote for Hospice services.

You may feel alone but there should be a team behind you. Contact your neurologist secretary to see if their is a MND nurse in your area, as well.

There are carer groups like the Carer Trust in every area. With lots of knowledge of local services.

I get a 3 hour respite block from the Hospice, once a week/fortnight, they come to the house to let me get out further afield than the local shops.

This is for me and my husband excepts it for my benefit. As I have said you can get help for you, even if the person does not accept help.

If the family get ill what would happen, maybe discuss with your dad what he would like for future proofing for emergencies, is a way you could possibley start the conversation.

Best of luck


Donna carer for husband with MND, diagnosed with Fail Arm Type in July 2020

[MW6]

Thank you both.
weve had a breakthrough today in that he has agreed to get some help. Social services are coming back out next week to meet with him.
fingers crossed this eases things for all of us for a while. They've mentioned an ot assessment too but he says he can manage in the house for now as his legs are good. He does need help dressing and showering though.
my god I wouldn't wish this on anyone