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Dealing with dementia

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By *J35mcr OP   Man
over a year ago

Leigh

Evening

I'm sorry for posting this here but I'm at my whits end dealing dith my mums dementia and I don't know who to turn to as her gp is a waste of space.

I had to move back in go the family home after my dad passed away and since my mum's just got worse, apart from the usual things like repeating my self and her forgetting things I find myself getting angry because things like the fridge being unplugged at night the heating/hot water being turned off , sometimes I don't even want to come home from work because I don't know what I'm walking in to .she's not going in a home no way I made that promise a long time ago but my mental health is suffering now aswell sometimes I think I don't even wanna be here anymore I don't know what else to do.

Just wondering if anyone on here has dealt with it

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By *andadbodMan
over a year ago

Liverpool

isn’t there any home help available?

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By *ooo wet tight hornyWoman
over a year ago

lancashire

I really feel for you as my brother in law is going through this with his Mum, she still lives alone though. Contact your social services and see if they can advice on any help, there are Day centers here in Blackpool that she goes to and she also has home help. Shame on your Doctors not been any more helpful. I hope this helps OP

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By *urchoicenowCouple
over a year ago

Ashford

For God's sake make sure you have lpas in place

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By *ersiantugMan
over a year ago

Cardiff

I gave her everything she wanted and needed for years. It took a lot of my life but it just broke my heart. Forget any inheritance, spend her money on her- everything it takes. It was hard for me as my mother never accepted she had it, nor (partly as a result) any kind of care. As we weren't close (though we became close) she only barely let me near her at first. But she knew she had to have someone close by. She was like a maverick horse for a long while, then slowly got to the point where she'd tell strangers she loved them. If you find it in you, persevere I would say. And change her GP if they really don't seem to care. -pt

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By *a LunaWoman
over a year ago

South Wales

Have you got any Social Care help? Care agencies could help out in morning / evening with getting her dressed, washed / ready for bed. Sort out her breakfast. Lunch calls, social calls etc. and maybe a Social Worker could arrange some respite care to give you a little break.

You need to look after yourself as well. You’re no good to your mum if you’re on you’re knees.

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By *ools and the brainCouple
over a year ago

couple, us we him her.

Sounds horrendous OP.

Definitely contact social services and don't take no for an answer from GP.

Also look at charities for advice and support.

Good luck

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By *parkle1974Woman
over a year ago

Leeds

I deal with it every day in work. Do you have any other family to support you? Are there any neighbours who could sit with her sometimes.

I know it's not easy, people don't realise just how soul destroying and the toll this cruel disease causes to the family members who have to endure watching their loved ones go through it and do end up having to put them into a care setting x

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By *arker secrets 321Man
over a year ago

West Bromwich

M8 my heart gos out 2 u ..been there don that got the t-shirt. I moved back with my parents about 6 years ago .dad ad dementia and I was always getting call off him saying he'd turned boiler off by accident. Or he'd put dinner on at 10am in morn burnt 2 a crisp wen I'd get home just a few things I'd deal with also him and my mom loved whisky in there tea and they could drink some tea ...I come from big family but cos I lived with them people tend 2 think u can deal with it all ...its so heartbreaking 2 see .but I would do it all again just 2 av my parents back ...stay strong my friend x

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By *a LunaWoman
over a year ago

South Wales

You may also want to make sure you have a doorbell cam or something so you can see who comes calling. Your mum is vulnerable and there are nasty gits out there who might take advantage of this.

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By *riar BelisseWoman
over a year ago

Bliss

My cousin did this and after a pretty dangerous incident we arranged a respite week in a dementia care home. It turned out to be the right thing for her and she stayed in the home. He visits every day and happily lives his life knowing she is safe.

Good luck OP, there is no easy answer I'm afraid with dementia care

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By *rHotNottsMan
over a year ago

Dubai & Nottingham

Hey I’ve never dealt with that but something a little similar In that it felt like an impossible situation with no solution and I could feel myself getting angry how it impacted my life.

Now I look back back and think there was answers but I just couldn’t see them or find them at the time and the dignity given and sacrifice I made was definitely the right thing to do.

So hang in there, it will not be forever, keep looking for solutions and you’ll find them eventually and you won’t end up with any regrets.

If you need a break or let off steam that’s ok , you just gotta plan that in a little carefully and not get angry or lose it with them, it’s not thier fault.

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By (user no longer on site)
over a year ago

It’s a terrible illness and extremely wearing on you to manage alone. I’ve seen it afflict some of my elderly relatives before they passed away.

I can, perhaps, offer advice only on general issues.

Watch the repeated behaviour that frustrates you and try to think of a solution for it. For example, the fridge being turned off; are you able to remove the bulb inside to make it seem like it is already off, assuming this is how she checks whether it’s on or not.

I know how isolating, tiring and tiresome it is to live with and manage a dementia patient alone. You need to seek help for yourself, urgently. Even to have someone take over for a day in order for you to have your own time makes a world of difference.

I wish you all the best.

M

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By *J35mcr OP   Man
over a year ago

Leigh

Wow, thank you to everyone sing one of you for your advice can't tell you how much it has helped!!!

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By *wisted999Man
over a year ago

North Bucks

I lost my mother to Alzheimer's and Dementia.

I had only been able to spend two years with her after a long period of estrangement. This cruel condition took her from me again and I bitterly regret not spending more time with her.

I also had to contend with her being in a different country. I moved heaven and earth to get her into a facility where she was comfortable. A lot of the things they did such a provide her with a doll and pictures from a certain period of her life really worked to calm her and provide her with good memories and brought out her nurturing side. I could only visit in 15 minute chunks toward the end as that was how her memory worked.

Cherish the “normal” bits mate no matter how small and I hope you get some help.

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By *a LunaWoman
over a year ago

South Wales

Also maybe worthwhile looking into if there is a local daycentre she could maybe go to for a few hours once or twice a week, it’s good Company and a distraction (although I know it will depend on how your mum is with her dementia, if she’s aggressive or anything then that won’t be an option).

Have you thought about putting up signs in the kitchen to not switch things off, as a visual reminder or leaving her a jug of squash/flask of tea and maybe some sandwiches out for lunch, so she doesn’t go into the kitchen. Leave the telly or radio on as a distraction.

Also get a medication safe box (if she takes medication) so she can only have the medication that is out for her.

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By *istyPeaksCouple
over a year ago

braintree

This is my job - actually it’s my calling &’passion

Call Adult Social Care. In our are there is a payment called Carers Direct Payments. It’s separate to attendance allowance and carers allowance. It is used to pay for “respite care” to take some of the burden from you. The charity/company I work for sends support workers to people’s homes and sits with the person with care needs for 4 hours at a time once a week so that carer’s like yourself get some time to yourself. See if there is anything like that in your area. Day Centres are also good.

If you ever want to DM me for any help, then please do.

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By *uke olovingmanMan
over a year ago

Gravesend

I've just bought ..eldercare for dummies...might be a helpful resource for you..Good luck

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By (user no longer on site)
over a year ago


"Evening

I'm sorry for posting this here but I'm at my whits end dealing dith my mums dementia and I don't know who to turn to as her gp is a waste of space.

I had to move back in go the family home after my dad passed away and since my mum's just got worse, apart from the usual things like repeating my self and her forgetting things I find myself getting angry because things like the fridge being unplugged at night the heating/hot water being turned off , sometimes I don't even want to come home from work because I don't know what I'm walking in to .she's not going in a home no way I made that promise a long time ago but my mental health is suffering now aswell sometimes I think I don't even wanna be here anymore I don't know what else to do.

Just wondering if anyone on here has dealt with it

"

Mr 3 sisters looked after our mam until the end in her own home.

Because that's what we promised her.

They all have their own family's but took turns sleeping at hers over night.

It's horrible but I'm the end it was a blessing fir them even though we were all devastated .

I am sorry to say but they all work in care and they struggled.

You really need to find help from somewhere or you will simply not cope and she will finish off in a home.

It truly is the worse thing to see your mam forget everything about her live.

Absolutely heart breaking.

Please try and seek help.

MR.

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By (user no longer on site)
over a year ago

You cannot do it all

Seek help and quick

We tried to keep Dad at home after Mum passed and you just don't rest

He had to go into residential care and the guilt associated with that is incredible, but it was the right decision

I hope you reach out and get the support you need

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By (user no longer on site)
over a year ago

It's hard isn't it. We're dealing with it with a family member and it's awful to see how quickly they decline. Doors need to be kept locked and keys removed from reach now.

Like others have said - have you got family members or neighbours that could sit in? Or how about providing something that would keep them occupied, ie books/picture books, fidget toy, etc. Depending on how advanced the dementia is of course.

Ask to see another GP, speak with social services about what help you can receive.

F

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By *ohnny4playMan
over a year ago

Kinross

Don't rule out a care home sadly for both of you it is likely to be necessary for safety given the course the condition takes unless you can get multiple carers to provide 24/7 cover.

Your mother will likely cease to recognise you, may see you as an intruder and her character could change, including getting angry and violent with you.

For both your safety and well being this will need consideration, from personal experience it is hard to make choices in good time, in retrospect many decisions we finally had to take, we would have been better doing earlier, however it still felt like defeat and we were failing the sufferer.

Sorry I cannot offer any more positivity.

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By *ouple in LancashireCouple
over a year ago

in Lancashire

As others have said seek out every type of help and support you can because it will sadly only get harder and then you'll possibly need help too..

It's a fucking awful illness and heartbreaking to see how it affects lived ones, to be honest and not wanting to frighten you there are safety concerns which need to be addressed now before something happens which you would blame yourself for..

It's horrible to have to accept that a loved parent is in the grip of this illness and their best interests is appropriate professional care in a residential place, with support that may be a while away but you need to get help for you both now..

Wish you well..

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By *naswingdressWoman
over a year ago

Manchester (she/her)

Sometimes a home is the best option - giving them the care they need in a professional way. It isn't always something you can do, even if you want to.

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By *viatrixWoman
over a year ago

Redhill

My children have been told that the moment I start being aggressive or just too much for them, I go straight into a home. I’d have lived my life, they still have theirs to live.

Both my parents died from dementia- they deteriorated very quickly, so at least it wasn’t years and years of suffering for everyone involved.

OP, most councils have care provisions in place. Get in touch with them … you’d be surprised at the support you might be able to get.

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By *naswingdressWoman
over a year ago

Manchester (she/her)


"My children have been told that the moment I start being aggressive or just too much for them, I go straight into a home. I’d have lived my life, they still have theirs to live.

Both my parents died from dementia- they deteriorated very quickly, so at least it wasn’t years and years of suffering for everyone involved.

OP, most councils have care provisions in place. Get in touch with them … you’d be surprised at the support you might be able to get. "

My family member who suffered was much safer and much happier in a home.

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By *ersiantugMan
over a year ago

Cardiff

Care homes aren't always the best option, they are often very expensive, not always that great sadly and are limited in what they give. Providing that you are willing, always look at what you can do first. Care homes really struggle when someone particularly doesn't want to be there too. Family, with privately paid-for help when needed (ones without so much red tape), and a care support strategy. Your Mum will change, so find out what makes her feel happy these days (my mum turned out to be sporty so we'd kick a ball about in fields!) and do your best to provide it.

Caffeine is the quickest stimulant if that is what you need. Nights are better when the days are reasonably exhausted! They talk about 'Sundowning' in some care homes, but I honestly never experienced that once. Sadly suppressants will not help her condition. Nice food like water, garlic, apples and salmon could help. I used sugar as a treat, not to keep happy, which worked well. Supplements I remember getting include resveratrol (red wine), Vits Bs, D, E and C, EGCG (green tea), Cat's Claw (a mushroom), Quercetin (apples) and possibly co-q10 (in lots of food) are ones I remember. I thought, why not? They tested as well as anything prescribed at the time.

They may be finally turning the corner on decent treatments, but good care is still the best treatment there is imo.

-pt

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By *tephTV67TV/TS
over a year ago

Cheshire

My Mother climbed out of her bungalow window at 2am, luckily a neighbour found her and contacted a family member. She had the full care package and never wanted to leave her ‘little house’ but even if one of us moved in with her, she’d still be a risk every time she’s alone or even when one of us is asleep.

She’s in a home now, it was difficult at first and she has some really bad moods, but the majority of the time she’s happy where she is.

I live too far away but my brother (who’s retired) and sister are regularly up there visiting, taking her out shopping and meals. We as a Family know she’s safe.

It is costly but the homes aren’t as bad as they’re made out to be. I have so much respect for the staff and you can tell they like my Mother and she likes them as well.

It’s a difficult time for you I know, believe me I know, but you do have to look after yourself as well.

Find a home or continue what you are doing I wish you the best and hope things will get easier, as much as I know they’ll probably not, not with this illness.

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By *offiaCoolWoman
over a year ago

Kidsgrove

Google Dementia uk

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By *ersiantugMan
over a year ago

Cardiff

I've got to say the costs depends, but they are not known as being cheap. If it all works though, great. Profits are to be made these days, our original Nursing Homes went a long long time ago now.

My partner worked in one that charged 1,000 a week and it was little different to many of the others imo. She made just over minimum wage there too. In fact the Snr carers there (who also administer drugs) were on just over 9 pounds just a few years ago. The carers themselves aren't always going to be the best when they pay that little sadly. I also have a friend who is one of the "great workers" in his home (insert your cliche here), but he feels he has to take every shift he is given - and don't they know it. He'll get blow out eventually, and with their huge staff turnover they will have problems without him.

And another problem is that if you want your loved-one nearby, people don't always have that much choice in the home they pick, esp if the first doesn't work for them.

I'm saying this partly because it's good to look at (and prepare) for all alternatives and not just assume a home will be best. Prepare for all avenues if you can.

--pt

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By *inky_couple2020Couple
over a year ago

North West

We're starting to have to deal with this with my Dad. His milder dementia is quickly advancing. This weekend, it became obvious he'd forgotten his grandchildren's names. He recognised the name of the eldest (20yrs old) but didn't recognise his face initially and seemed surprised he was at our house (where he lives). Dad lives an hour away from me and my brother and we are his only adult family in the world. We have literally zero other family apart from our spouses and children. Dad has financial limitations so cannot afford private care of any kind. I've tried to pay for limited home help but he refuses to admit them and both agencies refused to continue. I am physically disabled and can barely get into Dad's house but Adult Social Services in his town seem to expect me to care for him, from a distance, with a FT job and a 6yo child.

So, OP, you have our heartfelt sympathies. We honestly have no advice or ideas because we're at the same stage of trying to work things out. I can see things getting pretty challenging in the next year or so. I've been trying to warn my brother about this for years, but he buries his head in the sand and takes no action.

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By *inkyfun2013Couple
over a year ago

lewisham

My heart goes out to you. My mum has an advanced case of it now. She is in a care home which is brilliant. They give care better than we ever could, and we see her every other day. If we tried to care for her here things would go wrong and she would get hurt. Also one of us would have to give up work and we would go stark raving mad.

This horrible condition ruins the lives of those who have it. Whilst your care for your mother is praiseworthy, please think carefully before allowing it to ruin your life too. She may not be ready yet, but don't be afraid to consider the care home option when the time comes. It could be better for both of you.

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