A lifelong friend and me

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Palerider

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I have decided that as I am off on annual leave that mum and I are going away for a long weekend in two weeks time. I would have taken her overseas normally to somewhere on the med (Spain, Italy or Greece), but now she is progressing I'm going to book a cottage for the weekend in Cornwall. I can't book a hotel as she wouldn't cope in one these days.

I have decided that we are both in need of a break from the same old four walls of this house, mum needs some stimulation and scenary and I just hope the local pub has a darts board, plus I need to get out of this place (mentally not physically) for a few days.

It will be a good to take her back to Dartmouth and Plymouth a reminder of dads navy days, and it will be good to visit a university (then polytechnic) where I did my frst degree, not in healthcare, but engineering.

We both need a change...which by all accounts is as good as a rest :)
 

Palerider

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How terribly sad @Palerider.

I have to be honest and say that I don't think I had felt so low and sad as I did the other day in a long time, but it was out of love for mum and I just wish this wasn't to be. Being helpless is something I find awkward, difficult and.......I am sure you will help and find words to fit the rest.....I'd actually welcome anyone to add to my words of how they feel at times....perhaps we could build a response of the 100 most used words???
 

Izzy

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I think it’s a good idea to get away @Palerider. I was able to take both my mum and my husband away until quite far along into their dementias. Self catering cottages were the best and as you say - a change can be as good as a rest.
 

Palerider

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I think it’s a good idea to get away @Palerider. I was able to take both my mum and my husband away until quite far along into their dementias. Self catering cottages were the best and as you say - a change can be as good as a rest.

Yup I agree. Mum is already excited and started to pack, clearly there will have to be a revision of her packing at some point to include incontinence pads and mattress cover (she instantly decides she doesn't have a problem if going away). After my experience in Malta 2016, I have learned hotels aren't good places for people with dementia. Thanks for helping to confirm my thoughts :)
 

Timebar

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Jun 13, 2019
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Plymouth Hoe is my favourite place ever. I could sit forever taking in everything going on around. I have fond memories of my Nan taking me to Tinside Pool in the 70s. For old times sake my partner and I went to the pool last year on our annual pilgrimage to Plymouth (where I was born and have a few relatives living nearby). It was absolutely freezing. I hope you both have a wonderful well deserved break.

I follow your thread and am in awe of your enduring love, patience and support for your Mum. The title of this thread is so poignant.
 

AliceA

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May 27, 2016
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We loved Plymouth, once there was a special art exhibition at the university about the sea. The seahorse breeding tanks in the sea like place were enchanting, I could have watched for ages.
You Mum and my husband seem to have the same half logic, part is a logic but no consquences taken into account. It can be dangerous, funny and sad. Mostly sad.

My word is Drained, if I can have two words Utterly drained.

I escape into my mind, we are virtually house bound now. Memories and when I have the energy books, articles and groups on my iPad. I join a few closed discussions.

You are doing well, I think the trick is to find meaning.
I have a membership that has just provided a free read. The Courage to be Disliked. By Ichiro Kishimi and Fumitake Kota. I was almost put off by the title as I thought anthother self help book!
It is a conversation between a philosopher and student about Adler. The form and content are clear and well written, I am sure to say an easy read would not do the depth justice. Enjoy the trip, take it easy and with plenty of continence products. Mine decided he did not need a walker, it was packed. He used it all the time.
 

Palerider

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Plymouth Hoe is my favourite place ever. I could sit forever taking in everything going on around. I have fond memories of my Nan taking me to Tinside Pool in the 70s. For old times sake my partner and I went to the pool last year on our annual pilgrimage to Plymouth (where I was born and have a few relatives living nearby). It was absolutely freezing. I hope you both have a wonderful well deserved break.

I follow your thread and am in awe of your enduring love, patience and support for your Mum. The title of this thread is so poignant.

Yes mum loves Plymouth, they lived there for a while before dad was posted to Malta. Mum did ask about going to Malta again but it wouldn't be a good idea now she's got worse. It gets very busy on what is a compact and small island.

I like walking round the Barbican, pity Plymouth got bombed so heavily in WW2, it would all look like that. I always remember Plymouth for being very windy even on bright warm sunny days.

I have been very lucky in my life to have a mother who depsite our ups and downs has always remained a good friend, even now she continues to hold onto that connection. I hope it continues for as long as it can
 
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Palerider

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We loved Plymouth, once there was a special art exhibition at the university about the sea. The seahorse breeding tanks in the sea like place were enchanting, I could have watched for ages.
You Mum and my husband seem to have the same half logic, part is a logic but no consquences taken into account. It can be dangerous, funny and sad. Mostly sad.

My word is Drained, if I can have two words Utterly drained.

I escape into my mind, we are virtually house bound now. Memories and when I have the energy books, articles and groups on my iPad. I join a few closed discussions.

You are doing well, I think the trick is to find meaning.
I have a membership that has just provided a free read. The Courage to be Disliked. By Ichiro Kishimi and Fumitake Kota. I was almost put off by the title as I thought anthother self help book!
It is a conversation between a philosopher and student about Adler. The form and content are clear and well written, I am sure to say an easy read would not do the depth justice. Enjoy the trip, take it easy and with plenty of continence products. Mine decided he did not need a walker, it was packed. He used it all the time.

I confer on being lost for words. We seem to be increasingly in a similar situation in terms of being housebound. Its as if mum is loosing confidence in the outside world, unsure of anything anymore and in that she needs to be at home, where she feels safe. A sign I guess that her world has shrunk some more. This may be the last break mum has, we shall see how she gets on with being away from home. We can always return home if it doesn't suit

I liked the sound of the title of the book 'The Courage to be Disliked' -I'm curious.

I have decided as we seem to be at home more and more to complete a doctorate, to use my spare time when mum has gone to bed (early these days). It is probably an unwise decision given the distraction mum can cause, but in this mess there has to be something for me to focus on and this is my only chance as I am getting older myself. I'm taking a gamble on it and applying for PhD or DProf. One PhD is about researching technology for older people in the home. We shall see if I get accepted where this new journey will take me.
 

AliceA

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May 27, 2016
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I confer on being lost for words. We seem to be increasingly in a similar situation in terms of being housebound. Its as if mum is loosing confidence in the outside world, unsure of anything anymore and in that she needs to be at home, where she feels safe. A sign I guess that her world has shrunk some more. This may be the last break mum has, we shall see how she gets on with being away from home. We can always return home if it doesn't suit

I liked the sound of the title of the book 'The Courage to be Disliked' -I'm curious.

I have decided as we seem to be at home more and more to complete a doctorate, to use my spare time when mum has gone to bed (early these days). It is probably an unwise decision given the distraction mum can cause, but in this mess there has to be something for me to focus on and this is my only chance as I am getting older myself. I'm taking a gamble on it and applying for PhD or DProf. One PhD is about researching technology for older people in the home. We shall see if I get accepted where this new journey will take me.

I have found study, although difficult at times help me stay focused on things outside the situation. What you are doing sounds good. You are right to snatch this chance with your Mum, as you said you can always come home. I am glad I spent the money on a break, I do not think it will happen again. Windows of opportunity seem quite small these days. I think you will enjoy the book, it is an easy read, but sometimes that is not a fault. For the same reason those aimed at children can be quite deep. Keep in touch. Xxx
 

Geega

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Jul 24, 2019
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In 2011 I left London to come home to the North West, after a long career as a senior nurse in intensive care. When I arrived everything was normal as far as I could see with my parents. Dad had been treated for melanoma which had spread, but he'd been treated and had survived past the 5 year mark (just). I had secured a job in New Zealand with a one way ticket, but something held me back -my mum. If I could have taken her with me I would. So with mum in mind I didn't go to New Zealand.

I had always mixed feelings about coming home, it was my roots and natural, but on the other hand dad and I never got on and he was a drinker ( and quite a ******* when he was ****ed on whisky). I had resolved if mum went before dad that I wouldn't take on care responsibilities for him. What happened is that dad died before mum and so here I am writing this. In 2015 dad died from his cancer, within three weeks his of admission to hospital. That chapter closed quite suddenly and I have to say quite emotionally. What was left was mum and me and a whole new world of Altzheimer's, mum and me.

Mum and I are are old friends, we are lucky in that respect. We have stood by each other through thick and thin whatever comes. We have supported each other and even both took our A level art and pottery together a long time ago which I am glad we both did. I didn't really start caring for mum until 2015, she had been diagnosed in 2010. She had a bad fall at the end of 2015 and when examined in hospital they said she was 'quite remarkable' given her diagnosis -I agreed she was amazingly good some five years after diagnosis. But, there was one problem, mum refused to take her donepezil, she had done since they were first prescribed and dad, for love nor money couldn't get her to take them. So I gave her an ultimatum either she takes the tablets and I can help her, or she doesn't I won't be able to help for much longer. Consquently she started to take them.

We have got through nearly four years without needing much help (although I have on occasion nearly torn all my hair out), but over the last six months things have began to escalate. Plus I work full time in the NHS and can't give up my job, I am single and have to think about my future when I am old and grey too (if I get that far the way things are going at the moment). I might be an experienced nurse, but caring professionally is very different to caring for your own, and I can say fairly honestly my emotions span from being ok on happier days to being very dark on bad days. Which brings me to something I have seen glimpses of in these forums, how we cope and how not coping takes over the carer, I saw one phrase 'carer breakdown' in one thread.

In 2005 London was bombed by terrorists, I was called into work to intensive care. I won't describe what I saw or what hospital I was working at, I will say it was horrific. But we carried on as we Brits do, 4 of our patients survived in ICU, one sadly died the night of the bombings. A year later something then happened to me and it seem to come from nowhere. I was sectioned under the MHA for acute depressive episode with an element of psychosis. I was treated for three months and returned to work a very different person to the one I was before. So much had been going on in my life all the stress, worrying about my parents at home, my own unhappiness in London and then the bombings, it all took its toll. Its over ten years now since that all happened.

I have recently involved social services (SS) as I can't cope on my own anymore with my good friend, mum. I have to say I always thought social services would be more caring and forward coming in advancing help when it really is needed. I like many others on this forum have learned that I am in fact naive on these matters and can say truthfully my emotions have ranged from feeling like I have failed mum and extreme anger towards the SS and in fact to the state, that seems to let us down over and over again. I am in tune with my emotions now after my own episode in 2006 and I can recognise the darker side of my personality when it tries to pervail and know what to do, but caring for mum puts me like many others at risk of 'carer breakdown'

There are so many different stories on this forum, I wish I could help where I can help but I can't unfortnately. What I will say is that breakdown comes in many different ways and often isn't noticed by the person experiencing it. When I was a student on my mental health placement (along time ago) I asked if psychiatric professionals become unwell too, they replied 'you can't work in a paint shop without getting splashed'. Food for thought.

If you have a question please do contact me, will help if I can

xx
You are an inspiration. Fully agree with your views on SS care. They appear to throw you a lifeline and then leave you stranded to your own devices at a time when you need lots of support.
 

Palerider

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You are an inspiration. Fully agree with your views on SS care. They appear to throw you a lifeline and then leave you stranded to your own devices at a time when you need lots of support.

The SS have their hands tied by lack of any real resources to address the issues we face with dementia. Mums SW was about to resign if her managers didn't agree to mums carers and she had made that clear, plus pressure from me by writing to our local MP, who couldn't even answer her own letters -Brexit and party leadership were clearly high on her agenda. The likes of us mere mortals, cast out from the que of needs and branded by the social care label are left to fight it out, again leaving the more determined and stronger to have any success of a gain in a dwindling system of ever increasing inequality.

The problem with dementia is that most (though not all) carers are too busy, too tired and too frazzled to put up a fight, and others if they are lucky enough have alternative means.
 
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Palerider

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Sometimes when I read posts on here I become completely absorbed by others, the time flys by when I see posts I can in some way relate to.

I have to go, work tomorrow. But thank you to anyone sharing, keeps me going knowing I'm not alone.

Night (can we please have a night smiley here TP?)
 

Palerider

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Today we drove to Snowdonia and had an incident which I have posted about on another thread: https://forum.alzheimers.org.uk/threads/feeling-bad-lost-my-temper.117074/#post-1649101

I do feel bad now on reflection, but this is part and parcel of life living with dementia. Its rare for me to loose my patience with mum, but today by the time we had got home and she had created a kitchen drama on top of everything else I just couldn't keep a lid on my feelings anymore. We are ok now, mum is a tough nut and she let it all run off her like water off a ducks back...I'm glad because most of it was my frustration and inability to talk about things like we used to. The new car will survive but is need of bodywork repair, which I will organise tomorrow. I am considering carrying a port-a-loo in the boot from now on?????

It was good to go to Snowdonia, I did my advanced navigation course over those mountains and few other courses to boot. So here are a couple of pics of Snowdonia in todays persistent rain and cloud:

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In the top pic you can just see Mt Snowdon to the right, the cloud clipping its peak
 

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Palerider

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Feeling miserable, the car incident is something I wish I hadn't mentioned on here. Mum keeps on asking if I'm ok because now I can't stop thinking about it :(
 
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Jaded'n'faded

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Jan 23, 2019
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And are you OK? I imagine your mum will soon forget :)

Looks like you had a lovely trip to Wales (loo issues aside) - I'm hoping you enjoyed the scenery. I'm off to Llangollen in a few weeks (after our Manchester meet!) though I'm hoping the clouds part a little more... Actually I don't really care if it rains - my first holiday in 4 years!
 

jugglingmum

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Jan 5, 2014
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Please don't worry, I'm pretty good at bashing cars and camper vans, OH isn't impressed. Mainly female style parking incidents. I do know a cheap bodywork repair shop in Ellesmere Port (had to find one to repair a failed repair) but I guess too far for you.

I do like Llangollen, often almost get there on my bike (ie skirt the edge of it). I used to canoe there a lot (winter and summer). Plenty of nice tea rooms if it rains.
 

Palerider

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And are you OK? I imagine your mum will soon forget :)

Looks like you had a lovely trip to Wales (loo issues aside) - I'm hoping you enjoyed the scenery. I'm off to Llangollen in a few weeks (after our Manchester meet!) though I'm hoping the clouds part a little more... Actually I don't really care if it rains - my first holiday in 4 years!


Yes I am OK, feeling guilty for feeling angry over something that anyone would be. Mum didn't get the direct brunt of my frustration, but I am sure she could sense something was wrong. The return home and cooking of dinner was the last straw with me as everything became 100 times more difficult with mum interfering and changing cooker settings etc. I did snap at her (well not at her, it was as I walked away) and then let it go and thought what is the point of allowing this to reduce me to something I don't like myself in a person. But just that tension has made me realise how exhausted I am becoming with constantly being supportive come what may. Its as if there is little room left for tolerance at the moment, and I am not sure why.

Llangollen is a fab place, my gran used to take me there, I still remember sitting on the seafront with a flask of tea and sandwiches. Hope you enjoy it :)
 
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