Carer

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A bittersweet journey.

Sorry, this is longer than I thought it would be...
My husband died 11 months ago. He had Alzheimer's. He was quite a bit older than me. When he died at 74 we had been married almost 30 years, and for half of that time the spectre of Alzheimers was growing and progressing until its inevitable end.
His mother also died from Alzheimers and it was his greatest fear. I cared for him alone until a couple of years before his death, when it was no longer safe for him to stay at home. I thought once that watching my mother succumb to cancer was the hardest thing I'd ever have to do - I was wrong.
Sometimes there were moments of real closeness and it made my day when his face would break into a wide smile. The last words he said were to me, before he lapsed into unconsciousness were, 'I'm quite happy' and he smiled. It was his last gift to me and I will always treasure that memory. Or I hope I will, if my memory remains functional.
His loss sits like a lump of granite in the centre of my chest, but there is at least as much grief that the last years of his life were so awful.
Amongst the funny moments and the tender moments there were some truly awful times; like when he believed he was possessed by the devil, and was trying to throw a brick through someone's window to get arrested, so that he would get locked up where he couldn't hurt anyone. Or when he barricaded himself in our home because a drugs gang were coming to sieze the property. Or when he broke down in tears because he couldn't remember how to peel a banana.
I don't have any kids, and being his carer was incredibly lonely. Other people just don't get it, and you've now become the only adult in the relationship. People stop inviting you places when you can never go, and eventually they stop asking.
They think it just means your memory gets worse, but you lose executive function, and the effects on the body can be devastating. They say, 'but you know its not really him now, don't you?' Like that's supposed to be comforting. I never bought into that. If it wasn't him then who or what was he? He was different, but I refused to deny his humanity, or pretend that he had somehow already left the building. If in the end all I could do was walk with him and bear witness to his life as long as he remained, then I would do that. As our time together was coming closer to its end, every moment was precious.
He was diagnosed early, and we talked about it and his wishes while he was still able, and I would encourage everyone to talk to their nearest and dearest.
Now it's just me. No family. Even in his diminished state, I was his number one person. I'm no-one's number one now, and I'm terrified of a future where I'm as vulnerable as he was. I was his advocate, his carer, and his wife, and I'm afraid now of growing old alone with no-one to do the same for me.
I scattered his ashes on the shores of Loch Lomond on a blustery day that would have been our 30th wedding anniversary. I thought my heart would break - it felt very final - but as the wind whipped his ashes away, I remember thinking, 'you're free now.'
#AlzheimersDisease #Carer #Lonliness #Grief #bereavement

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Calling all parents of kids with special needs and disabilities!

Hi there, I've just created a group for parents of children with special needs and disabilities.

I'd love you to join!

themighty.com/groups/parentsofchildrenwithspecialneedsanddisabilities

I have two adopted children, one of whom has special needs. We're in the process of an autism assessment at the moment.

I'd love to connect with other parents and caregivers with similar and different experiences. I've made it a closed group because I think it's important that we can share and encourage each other in privacy.

#SpecialNeedsParenting #SpecialNeeds #Autism #Parenting #SpecialNeedsParent #specialneedsmom #autismparent #disabledchild #raisingadisabledchild #Children #Child #autisticchild #Carer #ADHD #childmentalhealth #anxiousparent #parentanxiety

Please join... I would love to meet you and hear your story :)

Parents of children with special needs and disabilities | An Online Health Community

This group is a safe place for parents and caregivers of disabled children and children with other special needs to come together, encourage each other, and share insights, wisdom, thoughts and questions.
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How do I cope with my sister moving abroad?

We’ve always been close and supported each other through shared trauma. Neither of us really have friends but we’ve always had each other. She’s younger than me and on the spectrum so I’ve spent a huge chunk of my life caring for her. I don’t want her to go and I feel like she’s abandoning me for a new life I can’t be a part of. I know I can’t stop her from going but I can’t be happy about it either and I’m afraid I’ll damage our relationship if I’m not supportive. I don’t want to be unable to share my day to day life with her. What do I do? #Autism #Carer #FearOfAbandonment #Anxiety

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#MentalHealth Musings

My husband found out today that his #Job is at risk. There'll be a consultation period of 40 days (sounds biblical, doesn't it?) so he'll find out mid January whether he's been transferred to another department (his department is being closed down) or whether he has to look for another one.
My #MentalHealth is already fragile so he's kind of my #Carer but to have this on top, and just before #christmas is just awful.
I wish I could do something but I can't work due to various conditions. Does anyone want a liver or kidney or something? 😉😉

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'We should just learn to live with it' 🤦🏿‍♀️🤢

I keep seeing the 'We should just learn to live with it' suggestion as a counter to restrictions. And it fills me with rage. Abject rage, because I cannot help but find the sentiment so selfish and ignorant.

Eventually yes, when we have a well researched and globally regulated & recognised vaccine fine! But even then!- the battle for survival will continue.

And till then!- I refuse! I refuse to sacrifice the lives of the elderly; those with learning difficulties, those with chronic conditions; those with disabilities. All of us. We have worked too gosh darn hard to live. To etch out our own existences.

And they too have worked too hard: friends, family, carers (formal & informal) have worked too blooming hard to ensure lives are lived to let your discomfort kill.

As I type this I know and acknowledge that this is polarising and I type this honestly sad that it is polarising.

I type this knowing and having experienced the fear of wondering if my employer would keep me on. Experiencing furlough and wondering whether it would cover bills and debts that still needed to be paid.

I type this knowing mine and most likely your nation has entered into a recession. One of the worst since records began.

I type this knowing we have a mental health crisis impending, when mental health services were already globally struggling.

But sacrificing the lives of one person, older or disabled, is not the answer.

If it is then it speaks more about how our societies chronically undervalue the lives of the disabled and elderly. How care homes were left to fend for themselves in the initial days of the Pandemic and are still reeling from losses: www.itv.com/news/2020-05-19/care-home-deaths-under-scrutiny-...

It speaks how casually people assert 'Well they were going to die anyway, so 🤷🏿‍♀️'. As if that death, if even infinitesimally preventable, isn't a tragedy. As if it isn't a further stain on our overworked, under-resourced and underpaid health & social care systems.

This Pandemic is killing and it's killing cruelly and at times discriminately. BME/POCs/BIPOCs are dying at alarming rates globally: www.google.com/amp/s/www.bbc.co.uk/news/amp/uk-52219070.

So please, please don't even flippant entertain such a thing.

Listen to the fears of the elderly, disabled and chronically ill!

And listen to their hopes! That film they want to see! That best friend they need to chuckle with. That birthday party they can't wait to have!

We don't want to die. They don't want to die.

#ChronicFatigue #ChronicIllness #Depression #SickleCellAnemia #SickleCellDisease #Carer #Fibromyalgia #ChronicPain #DiabetesType2 #Diabetes #Anxiety #COVID19 #Asthma #HypothyroidismUnderactiveThyroidDisease #ThyroidDisease #IrritableBowelSyndromeIBS #Insomnia

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Struggling to be the carer #Carer

I’ve gradually had to take on more of the Carers role for my husband who is extremely unwell. I find it physically almost impossible to do it all. I’m constantly pushing past my pain barrier #Pain to help him, & things like lifting his wheely walker in & out of the car to take him to appointments. I’m exhausted because I have a condition that stops me from sleeping till about 8am & then if any I might get an hour or 2 sleep #Sleep deprivation. All of his appointments seem to be early. I feel like my needs are not being met. I need to have a Carer not be a Carer. #exhaustion #Carer fatigue

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Getting older sucks

#Guilt . My husband has been ill for close to 10 years #chronicillness. I have become his #Carer &. I resent it, also #resentment because he has done this to himself. #binging on #junkfood & inactivity have ruined his health. He knew it but couldn’t control the #Addiction to food. Now all of his major organs are shutting down. He has been #neardeath 3 times in the past year. We are looking at #nursinghomes . I #resent that our lives have changed. I love my husband, but he’s always been a #difficultcompanion. I’ve had to do without many things that were important to my #Happiness & now I’m still having to devote all of my time to #beinghiscarer . When will it be #myturn ? Obviously I feel #disgustedwithmyself for thinking this way. And feel #Shame . To admit to it.

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#Autism Accepting Change

Every year there is an Anime Movie festival that, as a fanatic lover of all things anime, I attend most years.

This year however, due to finances, I (#Autistic #LateDiagnosis ) and my brother (also autistic and I am his #Carer #AutisticCarer ) so we decided to host our own festival.

Guy is excited to have his 2 best friends over, and I have a good Uni friend visiting for the fun.

Have probably over-catered the event but I get enjoyment from seeing others enjoy themselves, and I like baking and the prep.

The only issue I have is allowing someone in my room, which I have to do, that’s where my stigma lies.

Of course you can’t talk to anyone about it because explaining to them why you will HAVE to deep-clean your room and wash your bedding after them using it is both socially acceptable and down right rude.

Understandably so! I know I would be feel offence if I knew someone did after I left.

But it is something I will have to do to feel like I have reclaimed my space. Secretly and without discussion.

#Hushhush

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13 1/2 hours

5.30pm last night, I was experiencing sickness from extreme tiredness caused by 2 months worth of even more extreme #Insomnia

Fed the cats and made sure my brother had had his dinner (#Carer #AutisticCarer ) then collapsed in bed without any ablutions.

I did manage to make sure that my alarm was set for the next morning, so I know that it was 1759 according to my minion (phone) before I finally closed my eyes.

Woke today at 7.30am!!

I had even turned off the alarm I had set the night before and slept an extra half hour!!!

AND it was properly sleep - solid and restful!!!

Feel so much better this morning. Am practically whizz bang with energy.

Don’t know how long it will last as I have people staying over for the weekend from tonight and I have sooo much to do before then

But #Fingerscrossed