Never a dull moment

[Madge]

I used to be a day patient at my local hospice and they were wonderful carers. I felt safe and hubby knew I was being looked after x hopefully you will get to enjoy some complimentary treatments x enjoy the change xx

[Olivia H]

TinyLady you must do what is best for you and what you want. The one thing that would have helped me when first diagnosed was some home adaptation, but surprise surprise, I was not eligible. Rightly or wrongly, this made me want to be as independent as possible for as long as possible and do things my way. The best person to know what works for you is you. Sending hugs x

[TinyLady]

Tabbycat and LindaB I also had high hopes. I think that is what keeps making it worse. I think finally I can relax and get what I need... but then they are not able to follow a plan to completion.

I'm just too overwhelmed and exhausted now to keep battling and looking for more help/ solutions/ people with lots to say but nothing happens.... I'd quite like yo be out enjoying myself every day and making memories xx

[TinyLady]

Maria C - I like the plan. Once run over several times I will post the pieces to you for placement under your pool 🤣

[TinyLady]

Ellie - the fabulous OT from the hospice would normally be a massive help. But she has been off sick since the day after we first me and locums are just not able to meet me needs. I'm inclined to give up on it all. I'm probably just tired. Was in a lot of pain all night xx

[LindaB]

TinyLady sorry that you're still having such a tough time. My hospice also has a social worker - useful for coordinating various professionals and chasing things up - does your hospice offer social work support?
Hope things improve🙏xx

[Tabbycat]

TinyLady I'm so sorry to read this. Life is stressful enough. I had high hopes for things getting sorted when I read you were under the hospice care.
Could a care agency be employed temporarily whilst you recruit your PA?

[Maria C]

TinyLady I have been considering a nice swimming pool behind the house. It would involve the use of a backhoe and produce a very large hole. I may also have a list of useless individuals that I could hide there…

Such a shame you’re five time zones from me.

[Ellie]

if someone could just help us navigate/ an OT could do their job properly then I might not be so stressed.

Is there nobody in the hospice who could take ownership of your case - I would have hoped their OT was on top of things and liaise with your Community OT.

I'm sorry you're having such a hard time. 🤗🤗😘

[TinyLady]

Maria C - I'm making a list of people to squash with my powerchair. Might be why they have refused to let me outside with it yet...

I need a shower... hoping hubby can help get me in it tomorrow. He has had to take yet more time off work.

[Maria C]

I think even a turnip would be more useful than my (many different) OT's. Or the council, social services etc.

At least a turnip could be cooked up and is nutritious. 🤣

Continuity of care is so important and yet here we are having to bring a new person up to speed at almost every interaction. I just got a call that my carer is coming to the house so I can shower and it sounded like a new woman again. 🤯

[TinyLady]

Heather R - it really is isn't it? Makes things so hard. People just assume everyone can just pick up a phone call too... email is not an efficient way to sort anything out.

[Heather R]

Not being able to make phone calls is so disempowering x

[TinyLady]

Deb - I've seen more different OT's since December than I can keep track of.

The one linked to my hospice, who I saw once, was fantastic and I thought finally things would happen. But actually she went off sick the next day and in 2 months we are no further forward despite another 5 OT's making promises for all different things. Their incompetence has cost me a precious month away from my family in a hospice.

I'm only asking for a few basics as I only have one limb that works... I know the stuff I really need will take months... but to be able to get in/ out of my house safely (even with belp) would be nice. I'm 47. I want to be living.

If I could speak clearly I would phone up someone and shout. But I don't even know who to shout at.. and I can't anyway 😢

[Deb]

Oh TinyLady I'm so sorry you're having such a stressful time. Dealing with the symptoms and diagnosis of MND is hard enough without having to navigate adaptations to your home.

We didn't qualify for funding but my OT was very involved in future planning and able to see what would work in the longer term. For example we had a small ensuite shower which we were going to adapt but she saw that it would be unsuitable for a powerchair, hoist or electric toilet so we had the main bathroom made into a wetroom. Although we had to pay the council had an agreement with the company that it would be the same price they would pay so it saved us money.

Could you ask to change your OT ? Is there one attached to the hospice or your MND centre. Its such a vital role and they should be able to look ahead so you or they don't waste money on short term changes or equipment. They were tactfully persistent with me as I was resistant to changes until I needed them .

Big hugs to you,
Love Debbie x