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Carers UK Forum • Hello Everyone... I'm a new member
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Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 11:47 am
by Shari
Hello Everyone... I came across the link to this group through the Alzheimers UK website.

I'm a Carer for my Mum who is now well into the mid stages of Alzheimers, (although we have only just been given the 'official' diagnosis after a very long and arduous process).

Her biggest fear has always been that she would be placed in a Carehome, and since she wouldn't come and live with me and has insisted on staying in her own home, I had to move in with her a few months ago, when she was no longer safe to be on her own.

I did the same for my Dad at the end of his life, when he had cancer and passed away within 3 months of being diagnosed. That was nine years ago, and I promised him I would look after my Mum when the time came.

My life is 'on hold' for the foreseeable future because my Mum can be very demanding, and though I still have to work, at least I'm here every day to make sure she eats properly, takes her medication, etc, which she hadn't been doing.

For the last 3 years, I've been sharing my concerns with her GP... only to be told, "It's just her age and is to be expected", so when she almost burned the house down a few months ago, he began to listen to me.

It's been really helpful to read your posts and realise that I'm not alone in my experience of coping with the symptoms of Dementia.
I have no idea what (if any) support I may be entitled to, but just to feel part of a community that understands will be an enormous help during the difficult times ahead.

Re: Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 12:10 pm
by christina 17
Hi Shari

It's rare any GP understands the difficulties of looking after a family member or friend that has disabilities.

You will need to contact social services for a Needs Assessment for your Mum and a Carer's Assessment for yourself.
You will need to list all the things that you help your mum with, both day and night.

You can have your Carer's assessment in another room or a different venue to where your Mum is, so that you can talk freely.
Others will be along to go into more detail about what help can be provided to help you and your Mum including what benefits your mum and you are entitled to, to help.



Re: Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 1:14 pm
by MumWhoCares
Hello Shari, welcome!

I've no experience with Alzeimers myself but lots of people on here have and many people experience similar things when caring even though their situations may be very different so you are not alone :) x

Re: Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 4:37 pm
by Pet66
Hi Shari
There comes a point with dementia patients that NEEDS are much greater than WANTS very sadly. A nursing home may be needed for safeguarding issues and for your own sanity.
My husband and myself promised each other years ago that we wouldn't 'put' each other in a home. It's a promise I couldn't keep.
He is now in a nursing home because of dementia and complex needs.
I haven't 'put' him there. He's looked after well , much more than I can do. He's safe. I absolutely hate this has happened but would hate myself even more if something happened to him because I couldn't manage him at home. His consultant strongly advised me it really is the safest option.
I visit most days, do my best to keep him happy etc etc. My family visit 3 or 4 times a week. We make sure everything is okay. Struggle with emotions.
Unfortunately,some promises can not be kept for the best reasons.
My heart goes out to you.x

Re: Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 5:33 pm
by Shari
Thank you for your words of support and advice.
Today has been a strange day, in as much as I've received confirmation of something I've known in my heart for a long time, and on that level, there is a sense of relief...

There's also a sense of anti-climax, because although I have the definitive diagnosis I have been waiting for, it doesn't actually change anything.

I've had 'My Mum' with me today, and it's days like this I cherish and cling to whilst I have them... On days like this, it all seems worthwhile, but each morning I wake up wondering if I'll see 'My Mum', or will it be the horrible woman looks like her, sounds like her, but looks at me and speaks to me as though she hates me.

I have days when I feel very sorry for myself, and wonder when I'll ever be able to live my own life in my own home, or even consider the luxury of a holiday... then I'm consumed with guilt for having those thoughts, because for me to get my 'life' back, I will first have to lose someone very precious to me.

Thanks your advice Christina, and at the moment Pet66, Mum isn't at the stage where she has 'complex' needs. In some ways she's still very lucid. I understand that Alzheimers and Dementia have a wide spectrum which governs their behavioural patterns. Some sufferers become physically aggressive, but my Mum acts like either a spoiled child, or a stroppy teenager.

My challenge is to find a way to cope emotionally and stay sane :)
I'm already sensing that this group will help enormously with that.

Re: Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 6:10 pm
by Henrietta
Hi Shari
Welcome to CUK from another TP member ;)
I find both forums help to keep me in the right mindset as I also have a father that ranges from nearly normal (I always say about 85%) to a toddler throwing his toys out of the pram and anything in between. I already live with Dad but having heard recently about someone's relative setting fire to his home I appreciate being on location and not worrying from afar.
Feel free to rant away and ask anything you have concerns about.

Re: Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 7:52 pm
by MrsAverage
Hi Shari and welcome.
Of all the many things I have learned from this forum a big one has to be to make no promises about not going into a Home. Many illnesses including the various forms of dementia do mean that it becomes too much and too unsafe for the sufferer to remain at home.
Yes you can promise to care but that care may come to mean overseeing and loving while others do the day to day needs.
There are too many stories of worn out, burned out carers on here who end up damaging their own physical and emotional health trying to keep unkeepable promises.
The carers who cope best do so because they manage to achieve a balance between looking after themselves and their carees.
I say this now just to sow the seeds for later on your journey

Re: Hello Everyone... I'm a new member

Posted: Thu Jul 28, 2016 9:08 pm
by Susan_160712345
Hi Shari and welcome hope you get out of the forum the help and warm welcoming advice i have since joining lol :)

Re: Hello Everyone... I'm a new member

Posted: Fri Jul 29, 2016 8:26 am
by bowlingbun
Hi Shari, welcome to the forum. The more help you are willing to accept, the longer you will be able to care for mum, but a time will come when she cannot be left alone safely, in the not too distant future. The more help you are willing to accept, the longer you will be able to care. Can I ask how old you both are? Does mum receive Attendance Allowance? Does she own her own house? Have more than £23,000 in savings? Do you have a washer/dryer or tumble dryer? Dishwasher?

Re: Hello Everyone... I'm a new member

Posted: Sat Jul 30, 2016 12:00 pm
by Shari
Hi Bowlingbun... I've been down this road before, when I cared for my Dad after he was diagnosed with terminal cancer.

My 'help' came from the District Nurses and the Hospice 'at home' team, (which was arranged by the District Nurses), and they were all Angels.

Social Services swooped in like a heat seeking missile, but were more interested in digging around in our finances than offering 'practical' support. Following our needs assessment, they decide, a 'care package' was necessary, and arranged for (so called) Carers to come in twice a day to 'help' me, but they were about as much use as a chocolate teapot.... we never saw the same face twice and they never turned up on time, which meant that by the time they did bother to turn up, I'd already done everything.

Because Mum and Dad owned their ex council house and had some very modest savings, we weren't entitled to any 'benefits'... which was okay, because we hadn't asked for and didn't expect anything. We paid the full rate for my Dad's 'care'. I had an income, so was told I wasn't entitled to a Carers allowance... but again, I wasn't asking for anything and therefore hadn't expected it.

My parents neighbours however, who were the same age as my parents, both had good jobs, were high earners all their lives and had chosen to continue renting instead of buying their house. They enjoyed a great lifestyle and lived up to (and sometimes beyond) their means, always had new cars, luxury holidays, etc (and good luck to them). They didn't save at all, and after they retired, they lived off their state pension. When they were unable to care for themselves, they were placed in a Carehome.

My Parents on the other hand never had a big income, but had struggled and sacrificed to buy their house, and tried to save what little they could. They thought that was the 'sensible' thing to do... turns out they were wrong, because their neighbours had enjoyed a fantastic lifestyle, spent every penny they ever had and at the end of their lives were cared for at the expense of the state.

So, because of our past experience, I am very reluctant to contact Social Services.