Struggling

[DeeH]

DeeH Thank you for your reply, yes stubbornness & strongly independent can be tricky! The Covid situation has made me very angry, it’s definitely robbed my dad of his social life & freedom. I’m so glad you are getting the help you deserve & a well deserved break. Take care x

Thanks Jojo

Had to move twice in the last year, this has eaten into the time we should have spent enjoying our time.

Thankfully in the last month moved into a housing assocciation flat, with a wet room.

After 5 months of no showers for my husband and I was sleeping on the floor (couldn't sleep if not in same room and he was in a hospital bed in the livingroom)

Still having to fight for outside access as the wheelchair "accessable" ground floor flat, has a massive lip on the front door and bizzare wooden humps between the rooms, that I have to heave the wheelchair over.

The ability to mentally give over care for my husband to the lovely Hospice at Home folk, is amazing.

Buying loads of old series on DVD and a subscription to Audible helps, keep Hubs entertained.

Best wishes

[Jojo]

DeeH Thank you for your reply, yes stubbornness & strongly independent can be tricky! The Covid situation has made me very angry, it’s definitely robbed my dad of his social life & freedom. I’m so glad you are getting the help you deserve & a well deserved break. Take care x

[bromleycross]

JoJo if you contact your local council office and ask for the reablement team they will assess your dad over a period of weeks in the home - this is free and they will assess exactly what care your dad needs.
An adult social worker will help with this and will factor in time for you which is so important.
Ironically my partner was the opposite and did not want help , he objected to Carers in the house, eventually he saw how Carers improved my life and his.
Love Jane xx

[DeeH]

Jojo

Sorry you are going through this.

I am caring alone for my husband.

I made it clear to him that the 3 hours of Respite from Hospice at Home is for ME. Once a week at random times.

Not all areas have this.

As I can't leave him for very long as he is immobile and can't use his hands. Just getting to the shops etc.

His chin is on his chest TOO, we got a neck brace which helps (only if he is clean shaven - which is another issue)

Get in touch with Your GP, you are a carer and need assistance in your own right.
There is Carer Trusts for example.
I also get a weekly support phone call.

It is hard when they are independant minded and stubborn. but it other ways it is helpful.

It is so sad that the Pandemic has robbed us of time to enjoy when they were more physically able.

Support on here is wonderful.

But if you are needing to talk to someone, I found The Samaritians great for a human voice (a few years ago) at the end of the phone,.
You have to explain the

Both my parents have dementia (you can get mild cognative impairment, due to stress and illness, as well)

My husband calls it Brain Fog, at the end of the day when he is tired.

Keep in touch

There is always someone about online.

[Gordan1111]

Hi Jojo. You being there for him will help a lot. The way I cope is by telling myself that perhaps a new treatment is around the corner. xx

[Ellie]

Jojo I'm so glad you posted Jo, even though I'm sure it wasn't easy to pour your heart out to us 'strangers' 😏

This is definitely not something to go through on your own! 🤗🤗😘

[Jojo]

Thank you both for your messages ❤️
Yes dads had a mental capacity assessment, all fine & yes there is only me.
I will go back to the hospice & try for more support xx

[Mary C]

Hi Jo
what an awful situation.Like Linda B suggested it’s worth asking for a mental capacity assessment to be carried out by a health professional or social worker.
I would suggest the hospice again as sounds like your dad is deteriorating and may need input for medication and symptom control.
Poor nutrition, coughing and pain will be having a huge impact on your dads wellbeing.
Presume there is no other support for your dad practically other than yourself.
f.
I am linked to my local hospice and they have continued to visit all through covid.There Will also be a community palliative care team accessed by your GP.
I wouldn’t waste time and ring the hospice again!

Hope you too get support as it’s a huge thing to try and work, be sole carer and be there for your own family unit.
Best wishes
Mary x

[matthew55]

Hey JoJo and welcome. Stubbornness is often a cover for denial. We all go through it at some degree. Give it a little time and try and celebrate the little wins. We are always here for you. 🤗😁😚💗xx

[Jojo]

Thank you all for your reply’s, it means a lot ❤️
I will try & get a little extra support for myself.
My dad has & continues to be very stubborn! Unfortunately he doesn’t see that his refusal for help impacts me but I will keep suggesting ways in which all the services can help him xx

[Lynne K]

JoJo, that’s awful for you and your dad. You’ve had great advice here already so all I want to say is that we’re here for you, love and hugs 🤗, Lynne x

[LindaB]

Jojo welcome & sorry to hear about your dad's diagnosis. I echo what others have said either refer yourself or ask the GP to refer you to Social Services...for you a carers assessment....and if your dad agrees a Care Act Assessment for him. They will also assess his mental capacity regarding declining social care support. Of course people can decline help but your post suggests he has some memory impairment.
Same goes for the health professionals are they sure dad is able to make a capacitated decision to decline their support?
At least get a carers assessment👍
Good luck....take care👍
Linda B

[Bowler]

Jojo it is heartbreaking to read what you are going through on your own. The MND Association has a really good practical support network. If you contact the connect team either via a PM on this forum or telephone using the the number on the web page and ask to be put in touch with your local area support coordinator they should be able to help with what appears to be an unacceptable approach from the hospice. It is also possible to link you up with an Association Visitor who will work with you on a one to one basis.

Please give it some thought. You shouldn’t have to face this on your own.

[Jojo]

Heather R Thanks for your reply.
We are in touch with neurology, speech therapist, OT, dietician, respiratory physio but as he won’t accept any intervention there isn’t very much they can do to help him.
He was given an iPad to help with speaking but sent it back, I think because of his memory problems he can’t remember how to use the equipment. He is still able to write but again due to his memory he is forgetting how to spell words so it takes me a while sometimes to work out what he’s trying to tell me which then causes him more frustration!
Ive been told by the hospice I can phone anytime if I need to speak to someone but other than that, nothing. We did have contact with a visitor through MNDA who said he would like to check in with me as well as dad, at least a couple of times a month but he visited dad once & we haven’t heard from him since.
I thought I was coping ok, I’m good at just getting on with things but it’s hit me all at once!
Jo x

[Jojo]

Ellie Thank you for your reply & the hug! it means a lot.
His local hospice won’t see him due to covid, he was receiving a phone or video call every week but now his speech has gone the nurse has said she won’t get in touch anymore she’s just left it with us to get in touch with her if we need her.
He doesn’t want a collar. He’s always been very independent & I think he thinks if he takes any help he’s defeated.

Thanks again for reaching out x