I often envisaged as my mum grew older, if she needed help I would move near by or move her into my spare room. I never envisioned that she would be moving in to take care of me and be my primary carer.
We’ve both had some difficult times over the years but she always says that I’m the best thing that’s ever happened in her life. She deserves the world and I won’t be there to look after her when she needs me and that breaks my heart.
Who will help her with her online banking when I’m not here? Who will confirm that, yes, that email is a scam and to just ignore it? Who will fix the tv when she’s put audio description for the blind on by mistake? Who will do her food shop when she’s too old to drive ?
Who will speak at her funeral and tell everyone how amazing she was? Who will choose the best photo for the front of the order of service? The music? The flowers ?
Mums house is full of memories. It was my grandparents house. There’s boxes of photographs, jewellery and trinkets with stories. I love all that sort of thing. What happens to that when we are gone? We keep and accumulate so much stuff. If I don’t have children, there’s no one to leave these things to. Do they just get thrown out? Bagged up for the charity shop? It just seems like such a waste. Will there be anything to show that we even existed? Did we leave any impact on the world? Any imprint?
If she outlives me by 10+years will she be alone? Lonely? Heartbroken? Will Chino still be here to offer comfort or will she have to say goodbye to him too?
We finally got the keys for the bungalow. It’s difficult to be excited because I wouldn’t be moving if I didn’t have mnd. I love my flat. It’s in a great location. It was my first flat as a home owner. I’ve decorated it and looked after it with the intention of being here a long time.
It would be different if I was getting the bungalow because I had had a massive pay rise at work and wanted more space, garden etc. It would be different if I needed a family home but it’s a medical requirement. I need to have everything ground level and have extra space for equipment etc.
OT are still being difficult. I ask for more equipment to make life easier until I can get carers but they have no solutions available. Sometimes it feels like they are happy to put you off until you progress to the next stage and no longer require the requested equipment.
Mum had to call an ambulance twice last week. I fell getting out of bed. We called community care first and they came but they were only able to assist if I was able to do 50% of the work to get up which seems a bit pointless. They weren’t allowed to lift me. So the ambulance had to be called.
The following day I was woken early by my heart racing at 134bpm. It didn’t reduce for an hour so they came again to check me over. They insisted that I get a home visit from my gp. Since then I seem to be very popular. Getting visits from everyone and their uncle to try to make life easier. It’s almost as if now there’s an audible record of mums call to nhs24 that they now can’t continue to fob me off incase something happens and they are pulled up for being negligent. Perhaps I’m too cynical.
My Mnd nurse came and asked if there was an emergency did I want to be resuscitated. I said that yes at this stage while I can eat and communicate and still have a quality of life I would like to be. She reminds me that everything we do from diagnosis is palliative care. An extra boost of positivity….
I haven’t been sleeping for more than 1-2hours at a time since November. My lungs are not getting rid of the c02 while I’m asleep so my brain won’t allow me to deep sleep to prevent suffocating. It even overrides sleeping pills when I didn’t know why I couldn’t sleep.
I’ve been trialing a ventilator at night but felt it too claustrophobic and I wasn’t able to tolerate for more than an hour. There’s a horrible sense of panic about having something put over your nose and mouth, more so when your lungs aren’t working. I’ve since tried a different mask and different settings and I’ve been able to sleep over 4 hours with it on.
I have to admit it’s probably the hardest part of mnd that I’ve had to adjust to and accept so far.
My body has been changing constantly over the last 2 years and I’ve been able to put a brave face on and deal with it. But breathing in and your breath being cut short, your lungs not inflating fully is terrifying. More so than not being able to walk which seems to have simultaneously gone. This week I can stand and shuffle a few inches and no more.
I still question how I got here. What I did to deserve this. Why me?
Jo’s Journey with MND 