So isolated and alone

[Adcat]

Kazza, your GP should be very supportive.

I got this quote from patient.co.uk whilst investigating vascular dementia:

Caregiver burden and stress: this should be considered a complication of any dementia, including vascular dementia. This can lead to increased psychiatric and medical morbidity in the caregiver.

Im in my 40s too (totally in denial) I had no idea what my 40s would be like but I never anticipated spending my evenings watching sky sports and holding my dads hand.
Life won't always be this way so as the song goes;

Things'll go your way
If you hold on for one more day
Can you hold on for one more day
Things'll go your way


My advice; phone in sick tomorrow and see your GP. Show him this thread.

Take care and keep posting x

 

[Liz57]

Absolutely know where you're coming from Kazza. I too am caring alone with no family nearby. Nobody asked me if I could do it and don't get me wrong, I do what I can but even I have realised that I can't do it all. To expect carers to do the day to day stuff and the bigger picture stuff (POAs for example) is unrealistic and down right cruel to both carer and caree. I believe carers should get more support, not just financial (I can't pay my mortgage with carers allowance so have no option but to work) but moral support too. Just someone to hold my hand when I'm trying to get my mum's irrational behaviour sorted would be a start and not necessarily an expensive one.

I have two jobs; one based at home and the other in an office. The "external" job are allowing me to work my hours over four days rather than five so that I can get a bit of a break and more importantly, get on with the bigger stuff. This is a huge help and one I'd recommend to anyone struggling but really only papers over the cracks.

 

[nannalou]

I never thought my 40s would be like this, isolated, stressed, exhausted and above all lonely.

The role of a carer to someone with dementia is the worst job in the world, so called friends and relatives treat you like you have Ebola...I am trying to be positive thinking one day soon I will have my life back...hopefully, trying to hold it together like everyone else on here. Could fall asleep at my desk at work right now I'm that tired but soon I have to return home to a flat that smells like a sewage plant sorry, just venting or I will implode


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Totally get you Kazza, i'm in same boat, expecting to have a long an happy life together once the kids grew up and left home only to be totally floored by this evil disease. Are you and your partner part of any support groups. I have found them so helpful and supportive. The alzeimers society can help you to find groups in your area. Always here to listen x

 

[Kazza72]

Totally get you Kazza, i'm in same boat, expecting to have a long an happy life together once the kids grew up and left home only to be totally floored by this evil disease. Are you and your partner part of any support groups. I have found them so helpful and supportive. The alzeimers society can help you to find groups in your area. Always here to listen x

Hi nannalou...I don't have a partner, unfortunately I dealing with this alone, not sure how to find my local support group. I am relatively new to TP I'm getting ore focused as each day goes by so hopefully at some point I will cope better than how I'm doing now.my last relationship broke down because of issues with mum and that was 3 years ago...I guess my middle years won't be filled with happiness....one day I might meet the love of my life but while I'm caring for mum that won't be happening lol


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[Kazza72]

I have two jobs; one based at home and the other in an office. The "external" job are allowing me to work my hours over four days rather than five so that I can get a bit of a break and more importantly, get on with the bigger stuff. This is a huge help and one I'd recommend to anyone struggling but really only papers over the cracks.

Liz you must be exhausted. I can work from home the odd day but it's literally impossible to get work done, mum is like a naughty destructive child when I'm busy with work or even just housework, I can't take naps when I need because mum starts rummaging and that's when you hear things being dropped on the floor, banging and crashing and all sorts. I am going to work at home today but have to go into work to pick up my laptop (wasn't planned but came home to chaos yesterday...blooming carer didn't take notice of my requests)


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[Izzy]

You might find a local Alzheimer Society branch here -

http://www.alzheimers.org.uk/site/custom_scripts/branch.php?area=true&areaCode=EALO

You could contact them and see if they could tell you about support groups in your area.

 

[Kazza72]

Thanks Izzy...I will do that. Was going to say thank god it's Friday but weekends are no longer enjoyable grrrrrr


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[angecmc]

Get yourself to that GP, you poor thing, it is so unfair, where is all the support this Government keeps promising? You need a break, so the fight for respite should start now, not that you probably have the energy for that, sending hugs xx

Ange

 

[Witzend]

So it has, I shall confess to two terrible thoughts - when my mum went into hospital to have her hip replaced - she hadn't been diagnosed then but she was certainly not the ticket. I actually hoped she would die under the anaesthetic - isn't that awful?

Also my best friend lost her mother to a stroke a few weeks ago - she also had dementia (vascular) but far, far worse than my mum. And I was jealous. She's free (thoroughly upset, grieving and devastated, but free) and I'm not.

I'm thoroughly ashamed of these thoughts, but I'm guessing I'm not the only person ever to have had them in these circumstances.

When things were very bad with my mother, before she went into the CH, a colleague had a similar aged elderly mother with a mass of serious health problems, but no dementia. Our mothers and our worries over them were an endless topic of conversation. One day she came into work very late, and told us they'd had a phone call in the middle of the night - her mum had been rushed to hospital and had died shortly afterwards. And my very first thought was, she and her mum were lucky. I told her some time later - she was not remotely shocked, and said she'd have felt the same if it had been the other way around. Neither of us could honestly wish for them to go on much longer as they were. So you are far from alone.

But mine is still going, many years later, even after breaking a hip at over 90. I often wish that had been the beginning of the end, as it so often is. Coming up to 97 now she is just a most pitiful shell with zero dignity, doesn't know any of her family, is way past enjoying anything. I wish Nature would be kind enough to release her from an existence - that is all it is - that would have horrified her former self if she had known.

 

[Kazza72]

One thing I could so with right now is a nice uninterrupted sleep. I wish I could take a day off and rent a hotel room just for the day, just so I could check in around 10am and go to sleep for a few hours, no noises, no strange smells, no calling of my name or dropping things...just relative silence and a comfy clean bed


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[VonVee]

Dear Kazza, oh I hear you and your totally right, being a carer is the worst job in the world and it sucks, but what makes it worse is seeing our loved ones in front of us deteriorating before our eyes, and it's when you realise that genetically we are 50% of them, and then that bring home your mortality and what you may or may not have to look forward to as an older person, which sucks harder. It's scary. I myself feel very like you at the moment also, trapped, confused, and 100% totally knackered, I am 43,and I didn't expect my 40's to be like this either, but it's happened, and you can do this hon, we can do this together with support and with the hope it does/can get better hon. I'm originally from west London hon, Middlesex massive lol xx
Take care x

I never thought my 40s would be like this, isolated, stressed, exhausted and above all lonely.

The role of a carer to someone with dementia is the worst job in the world, so called friends and relatives treat you like you have Ebola...I am trying to be positive thinking one day soon I will have my life back...hopefully, trying to hold it together like everyone else on here. Could fall asleep at my desk at work right now I'm that tired but soon I have to return home to a flat that smells like a sewage plant sorry, just venting or I will implode


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[nannalou]

Hi nannalou...I don't have a partner, unfortunately I dealing with this alone, not sure how to find my local support group. I am relatively new to TP I'm getting ore focused as each day goes by so hopefully at some point I will cope better than how I'm doing now.my last relationship broke down because of issues with mum and that was 3 years ago...I guess my middle years won't be filled with happiness....one day I might meet the love of my life but while I'm caring for mum that won't be happening lol


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Hi kazza, its my husband who has dementia so i wasn't thinking straight and thought you was talking about your partner. Sorry for that chuck. Know the feeling of being alone. My husband is starting to forget who i am. Sometimes it like being married to a stranger......

 

[Kazza72]

Aaah nannalou, it must be awful when it happens to a partner/spouse. I'm so sorry, am sorry for all of you who are slowly losing your partners, it's a blooming evil disease


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[Kazza72]

Dear Kazza, oh I hear you and your totally right, being a carer is the worst job in the world and it sucks, but what makes it worse is seeing our loved ones in front of us deteriorating before our eyes, and it's when you realise that genetically we are 50% of them, and then that bring home your mortality and what you may or may not have to look forward to as an older person, which sucks harder. It's scary. I myself feel very like you at the moment also, trapped, confused, and 100% totally knackered, I am 43,and I didn't expect my 40's to be like this either, but it's happened, and you can do this hon, we can do this together with support and with the hope it does/can get better hon. I'm originally from west London hon, Middlesex massive lol xx
Take care x

Hey vonvee...west London rocks huh I'm in chiswick (I'm not posh lol), went to school in hounslow, dreading having to move away to somewhere a lot cheaper where I know no one, mum is getting to the point where she needs round the clock care...part of me feels guilty for leaving her alone for most of the day while I'm at work and another part of me worries about potential abuse if she goes into a home, I'm hoping the abuse stories are rare



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[Liz57]

Liz you must be exhausted. I can work from home the odd day but it's literally impossible to get work done, mum is like a naughty destructive child when I'm busy with work or even just housework, I can't take naps when I need because mum starts rummaging and that's when you hear things being dropped on the floor, banging and crashing and all sorts. I am going to work at home today but have to go into work to pick up my laptop (wasn't planned but came home to chaos yesterday...blooming carer didn't take notice of my requests)


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I don't live with Mum, Kazza,but I am just around the corner. Mum starts phoning when she's been on her own for about 20 minutes max and she dials my number, lets it ring, hangs up and dials again. She can keep that up for hours! If I do answer, she's back on the phone within about five minutes as she's forgotten the conversation. If I don't magically appear at her door shortly thereafter, the calls get more and more anxious and bizarre. Her last message last night (I was at a meeting for the "home based" job which didn't finish until 10 - I'd left her a note explaining I'd be at a meeting and I'd turned my mobile off), was well after her usual bedtime. She clearly didn't know who she'd phoned and said very politely that she'd heard that there had been a terrible accident and was concerned that her parents were involved. It freaked me out because I've known her to go out of the house with the pretext that she thought there had been an accident somewhere. I immediately went to the house and found it in darkness even though the message had been timed about 15 minutes earlier. I then had to decide whether to let myself in and possibly wake her up (with all the problems that would bring) or just hope to god she was in bed and safe. I ended up driving around the streets for half an hour to see if I could see her and when I couldn't, I went back home with my fingers crossed she'd be OK. I almost, but not quite, welcomed the cross phone call from her this morning at 7!

 

[nannalou]

Aaah nannalou, it must be awful when it happens to a partner/spouse. I'm so sorry, am sorry for all of you who are slowly losing your partners, it's a blooming evil disease


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when you say your vows in sickness and in health you don't realise how important those words are! He was diagnosed with parkinsons 20 years ago at 35 and the dementia began a couple of years ago. Feel like we've been cheated out of a happy marriage which we always had even through the parkinsons...