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It’s still badly infected and the orthopaedic team have got the plastic surgeons involved as they think mum now needs a skin graft to replace the broken down skin. Dad did tell me tonight that in the worst worst worst scenario mum will loose her leg. Oh my fucking god, seriously?!! The plates and pins they’ve put in aren’t fixing properly to her brittle bones. Dad said he think it’ll be lucky if she walks again. Hoping with every bone in my body that he’s wrong. But then again, I’d rather her loose a leg and not have dementia! But that’s never going to happen!
Cant help feel that she’s never going to get out of that place, it’s just getting worse and worse. At least the nursing care has improved. Trying to stay chipper is so hard. Easier to bury my head in the sand. The nightmare of this reality is tough going, so mentally tired. Not going to be able to see mum this weekend as hubby is away so I have no childcare. Hope she’s ok, dads still going every day so at least I’ll get a daily report. wish I knew when things will start to improve. Clinging onto hope is no fun. NMC
Mums had Alzheimer’s now for about 4 years. Sometimes I struggle remembering what she was like before. Mum cared for nan and grandad and when they both passed away, I honestly think that’s what triggered her dementia. It’s weird to think mum knew anyone and everyone in the village and everyone knew her. It’s weird to think her doing her job at the council and then at the local school, all that trust and responsibility. Such poles apart to now.
It really pisses me off when I hear friends moan about their mums. They don’t know how lucky they are to have help with childcare, have a mum to go shopping with on a Saturday afternoon, someone to turn to to ask questions about their little ones. If I’m totally honest I know I’m jealous. I hate to admit it. Getting married and having a baby without mum by my side like any normal mum has been tough. It’s had me in tears more times than I care to remember. I’m only 28, she’s only 63 – we’re both too young to be going through this. I just wish mum was mum. Wowzers she’d idolise my son if she was “normal”.
As a kid I remember mum being the soft one, and dad being the strict one. Mum always got on well with my friends, always used to ferry us around to parties when we were teenagers, she was a really cuddley mum. There was nothing a mum cuddle couldn’t make better. I can still remember that feeling of knowing everything was going to be ok when she hugged me.
Mum’s laugh lit up any room. She’d say the silliest things, and have us all in hysterics. She loved cooking. I remember baking cakes with her most weekends, something I’ll do with my son when he’s a bit older. She came to every school play, every dance show, anything I was doing she was there front row supporting me. Nothing or no one ever came before me or my brother. I see that now. And as a mum I realise why she did everything she did. I hope I’m a good mum to M like my mum was to me. NMC
My hubby. A normal 29 year old, amazing father to our little boy who clearly idolises him. I feel bad because I’ve not been much fun to be around since mum went into hospital after her fall. But he’s taken charge of our LO, not moaned, letting me rest when I get teary and tired, always on hand for a hug. He never really knows what to say. His favourite thing to say is “take each day as it comes” which is probably right but I don’t always want to hear that. Sometimes it’d be nice for him to say “it’ll all be ok” – thing is he knows and deep down I know he’d be lying.
Fair to say without hubby and our beautiful precious amazing and terribly special 2 year old, this would be even more unbearable. They make me get up in the morning. They make me put a smile on my face when sometimes all I want to do is stay in bed and cry. Sometimes I wonder if I will cry when mum does die, because part of me feels I’ve lost her anywAy. Right now I don’t think I will cry. Whatever though I know hubby will get me through.
I really really really wish mum had had better time with my son. She loved kids, and in her own little way did adore him but I just wish he could’ve experienced going on holidays with nannie and grandad – like I did as a kid. I don’t like the thought he is going to grow up not knowing the real person behind his nannie. She would have spoilt him rotten and I know he would have adored her if things would have been different. NMC
Life is not about waiting for the storm to pass, it’s about learning to dance in the rain
Went to PALS yesterday and spoke to a really lovely lady about all of our concerns. Feel like we’ve done something good for mum, but the proof will be in the pudding. It’s not like we want her in a gold bed with gold sheets and having her arse wiped with rose petals – but basic decent care would be nice. So currently in limbo, got to wait for the PALS lady to speak to the ward and nurses and consultants and she is going to call me. Not sure when, hope I don’t have to wait long – being patient has never been a strong point of mine.
one good thing, she had her operation yesterday (finally!) so hopefully that was a success, we should find out later when dad goes into visit. NMC
Another sleepless night worrying about mum. Was she asleep? Was she awake and crying out? Were the nurses looking after her properly? I thought moving to this ward was going to make things better. But first impressions I think she was better looked after on the orthopaedic ward. At least the HCA’s and nurses came across more caring. The foreign nurses on this new ward seem cold and hard to understand. They may see this day in day out but a little compassion wouldn’t go amiss.
Waiting from the phone to ring to hear from my auntie if mums operation will go ahead this morning. It better! This will be her 3rd day nil by mouth. She’s so skinny now.think I’m going to see if my auntie will come to PALS with me today. Not only about the medical care but also I’m not happy about the level of hygiene – swear mums teeth haven’t been cleaned since being on this ward. Her hair looks greasy and tangled, and it breaks my heart to say this but she smells. She needs a good wash.
Yesterday my aunt was asked by a nurse if she could give my mum the rest of her medication – seriously wtf?! That’s not right. She was also asked, no told, to stay and help the nurse change my mums pad after my auntie asked if it could be changed as she was wet through. That’s not right for my auntie to have to do or see.
Im also worried about mums dignity. Whenever I go, she’s in a flimsy gown and not wearing any knickers. My prude of a mother would be especially mortified by this. Every time I’ve been to see her in this new ward, she’s been on the plastic mattress and not on a sheet. Her bottom is red raw and she’s getting pressure sores on her legs and elbows now. Enough is enough.
I guess we’re a typical family – dont want to be seen as a pain or have to complain but this is borderline neglect now in my eyes. I can’t make mums Alzheimer’s go away but I can be a voice for her. Sat in my pjs trying to hold back the tears. Dreading what state I find mum in today.
Just had the call from my dad that mum’s operation has been cancelled again. Livid doesn’t come close. Dad sounds so down. Why does everything have to be a struggle? I get that my mum is not the only poorly person in the hospital but at what point does someone put her care first? It’s so frustrating. We’ll keep fighting to get her the best care. That’s all we can do. So lets see what tomorrow brings. Hopefully not the third day nil by mouth. Think it’s time to get PALS involved. My poor mummy 😦 NMC
It’s been just over 3 weeks since mum fell down the stairs and broke her leg/ankle. And it’s been 3 weeks of constant battle to ensure she gets the right care. Originally on an orthopedic ward, they struggled to care for a dementia patient. However she’s been “specialed” which means a nurse or health care assistant is with her 24/7. The orthopaedic doctors we saw as a family only cared about getting her leg fixed, but neglected to look at the bigger picture.
Mum has been like a crazy wild animal since her accident. She’s in unfamiliar surroundings, with people she doesn’t know, in pain (likely) and not able too properly communicate what’s up. This means she’s more often than not screaming out, crying, thrashing her arms and legs (even the broken one) – totally heartbreaking for all of us to see.
The first time I visited mum on the orthopedic ward I arrived to hear her screaming out, with her gown exposing her top half, trying to get out of the bed onto her broken leg, in a bed covered in dry sick. Nurses were just walking past her and ignoring her. Naturally I went ballistic and almost immediately I had two nurses falling over themselves to help.
No one had told them about mum having dementia, even though it was in her notes. Or so they told me. Who knows if they were telling the truth or feeding me a pack of lies.
Since then we’ve watched mum go from bad to worse. She’s lost so much weight. Although only 63, suddenly she looks 83 and smells like a 83 year old. If she could see herself now, she’d be horrified. Mum has already had one operation to put some pins and metal plates into her leg, this was cancelled 3 days running due to surgeon running out of theatre time – no wonder she’s lost weight when she was nil by mouth for all that time.
Today she was meant to go and have another operation on her leg, as she’s now got a gross abbess that needs seeing to. Yet again, this is day 2 of nil by mouth as it got cancelled at the 11th hour yesterday. She’s meant to be 2nd on the list – it’s 18.38 and she still hasn’t gone down. Looks like its going to be cancelled again. Yet again we feel so angry, let down and worried this is doing anything far from helping her.
Im sat at home with hubby and the boy, whilst my dad, brother and auntie are there at the hospital fighting my mums corner for her. They better do my mums operation soon, because my dad and especially my aunt will go nuts! Waiting…. And more waiting…. Something tells me we will have another day of waiting….
Adventures with Dementia and Beyond
Life caring for a parent with Early-Onset Alzheimer's Disease
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