Losing Mum

A personal outlet for me to talk about the experiences and journey of mum's dementia.

[losingmum]

Mum's back at home

For several reasons: 

1. Silvermere, Guildford was too expensive for what it was. Whilst it looks polished on the outside, the care for dementia residents isn't adequate. They need more care and a more personal touch. 

2. I need to start the clear out of the house. It's as though squatters have lived in and in order to sell, it has to be spruced up a bit. If I'm there, I could also have mum around as she knows and misses the place. 

It's so depressing here that I've not even showered. The shower isn't worthy of such a name. It should be called 'the dribble'. And it's freezing. I've got a hot water bottle stuffed up my top and a portable heater by my feet. 

[losingmum]

Mum goes for a temporary respite. My sister's got a job in London, I'm on holiday. So mum was dropped in yesterday and this was what I received from my sister. Received a call at breakfast - 'your mum's not slept'. The whole phone call was about where she was and when we would pick her up. I didn't feel like it would be appropriate to tell her the good news that happened last night. It's an understatement to say I hope she settles in.

[losingmum]

Things Mum Said: "You're not that ugly"

2012, at a friend's wedding (mum chose to wear silver trainers)

Mum - "What a lovely name, are you Scottish?"

Young man sitting next to her - "Yes, McCloud is indeed Scottish. In fact, it means 'boy of ugly son'."

Mum inspects young man closely - 'Oh, you're not that ugly.'

[losingmum]

Hand me some cyanide...

We've been trying to broach the subject of my sister moving to London and the fact mum can't stay at home. We're organising a temporary respite at one care home that is going to be a 'hotel' (it helps it looks very much like a 5 star one) before moving in a couple of weeks to our preferred care home. 

It's all getting rather confusing and we've had some rather frustrating conversations with many repeated questions, tears and anxious pacing. 

Her latest remark is 'hand me some cyanide - this will be a lot better than what I'm going through now'. 

[losingmum]

Mum and sister on our walk today.

[losingmum]

My sister's at breaking point

I feel guilty. My sister's put her life on hold, is resentful towards mum, holed up like a prisoner at home and I'm pretty sure of it, suffering from depression. Whereas I've escaped - I've moved to London, I touch base everyday but I'm relatively free from all the issues that she's dealing with on a day to day basis. 

She's not getting any sleep at the moment - apparently mum won't sleep, wanders around, comes into her room, wakes her up and tries to leave the house. 

The other day, my mum confused her for her sister and asked where her daughter was. 

We've got a care home chosen. But we're waiting for space. We can't wait much longer, mum's getting worse. 

[losingmum]

Action needed. Now.

Mum was brought home early this morning by a friendly policeman. She had gone for a walk to Sainsbury's (a good 20 minutes away), and somewhere en route (going or coming, I'm not too sure), had, in her words, 'become a little confused' and lost her way. 

Thank goodness for that policeman. 

But it has highlighted the urgency with which to deal with this. Mum needs to go into a care home now. It's time to push this forward for once and for all. 

[losingmum]

How terrible it is to love something that death can touch.

Albus Dumbledore

[losingmum]

Mum goes missing and a smashed window

I really hate that my sister carries so much of the burden of mum. I'm the elder one, it really should be me. Due to this, I feel so guilty. It's not mum's fault she's got dementia and it shouldn't be left to my sister to be her carer. I can't wait for us to finally decide on the best care home. 

I got a message via WeChat. My sister had gone home and rung the doorbell (having forgotten her keys). No answer. Maybe mum had gone out, but where would she have gone to? In the end, my sister smashed in the back door window. No mum. 

It turns out mum had thought to 'pop in' to see my friend's mum who lives over the road. But also who mum hadn't thought to see for years. She found mum wandering in their neighbour's garden...

[losingmum]

Mum drives to Sainsbury

A panicked phone call from my sister. 

"Mum's gone and the car's gone too."

We had to force ourselves to calm down and think clearly. Since mum would have no need to go to the station, the only other place she could have gone to would be Sainsbury's. So Rosie checked there. Indeed, mum's car was there and about 20 minutes later, mum comes out, laden with shopping. 

Not wanting to confront mum, my sister tailed mum all the way back home. Just in case she went the wrong way or forgot how to operate the car. 

And so ensued an argument between my sister and I - should we hide the car keys or not? Would that make her more distressed? Could we tell her something else, such as the car being broken? 

In the end, my sister won. Mainly because she lives there. She hid the keys. 

[losingmum]

10 Things to Watch Out For When Looking For a Care Home

Making the decision to put someone, anyone, in a care home is horrible. It leaves you feeling wracked with guilt, somehow as though you've 'failed' them. For us, it is by far the best decision - we're finding it hard to deal with mum, my sister can't live with her forever and she's lonely. A care home will provide all the company mum longs for, allow us to feel at peace with ourselves and enjoy the quality time we have together. 

My sister and I are bored of seeing care homes now. Some are depressing, a few are terrible and what's worse is meeting people you wouldn't leave in charge of your cat, let alone someone you cared for deeply. 

We've defined what's important for us to look out for - hopefully this may help any of you looking for a suitable care home. 

Smell - if it smells like wee, then get out. Even worse, if it smells overpoweringly of bleach or another scent to mask the smell of stale urine. Whilst accidents may occur, these should be cleared up immediately and stale urine smells suggests that residents may have been in their soiled clothing too long. 

Gut feel - if it don't feel right, then that's it, cross it off your list. It may be the best on paper, but gut feeling counts for a lot. 

The Manager's thoughts - What do the people in charge think of the residents? Are they empathetic, kind? The manager of a large care home in Surrey described her residents as 'doolally'. She can fuck right off. 

The Residents reactions - It's a bad sign if residents shy away from the staff or cringe when they come near. 

Enjoyment - Do the staff look happy? Are they working there because they enjoy their job or is it just for the money? I would want staff to really care about their job - after all, they're looking after vulnerable people. 

Homeliness - Does the care home feel homely? How much scope does the care home allow for decorating their room? Are there images on the wall that people can relate to? Or are they just 'custom painted', company-bought, neutral paintings?

Empty Beds - With people living longer and the increase in dementia, think twice if there are lots of empty beds. Successful, happy care homes are normally full. 

Rules - One care home we visited was a bit like prison; no visiting after 8pm, no own furniture in rooms, no disturbing meal times, no taking residents out the building after a certain time. The list went on. 

Viewpoint - See beyond all the shininess, great long list of activities and the 24 hour snack bar. What would your loved one see. How would they view it? Remember what's important to you, may not be important to them. 

In an emergency - What's the procedure? I was shocked when the fire alarm went off accidentally and one of the members of staff rushed up excitedly to the deputy manager taking us round and said 'XX & XX are in SO much trouble - they didn't follow the procedure at all!!' Find out what happens in the case of an injury, a fire etc. 

[losingmum]

Tripping out alone

Today my sister got back from the gym only to find the front door of our house wide open, mum's car gone and mum nowhere to be seen. There was panic and anger in her voice when she called up to tell me. Eventually, trying to see things from mum's point of view, we figured mum had probably driven to Sainsbury's. 

My sister found her there, buying food. 

What to do now?

My sister is all for hiding the car keys but apparently the best way is to use old memories as a reasoning tool. Since we've had problems with the car before, we're going to say that the car is broken and shouldn't be used. Fingers crossed this works. 

[losingmum]

Live life and forget your age.

Norman Vincent Peale, author

[losingmum]

Those with dementia are still people and they still have stories and they still have character and they're all individuals and they're all unique. And they just need to be interacted with on a human level.

Carey Mulligan