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Elderly parents

No idea about elderly care - clueless! Please help?

27 replies

PoppySeed2014 · 25/06/2014 19:46

My Dad is in his 90's and lives at home with my (much younger) Mother.

He's got bad back pains (two vertebrae crumbled a few years ago) which are making it excruciating for him to sit up in bed once he wakes.

He's also clearly got some dementia - very slow decline over the last 5-10 years. Very gradual.

I don't know how to help them! Their gp doesn't seem great and my Mum doesn't like to make a "fuss" but is exhausted from caring for my Dad.

My Dad is very reluctant to see medical professionals etc. Stiff upper lip etc.

It's just so incredibly sad and depressing and I'm lost. My Mum would be happy for me to call social services etc on her behalf, but who do I call? Where do I start?

My Dad is ok in himself most of the time. But so doddery, shuffles about and is very prone to falling. Goes up and down the stairs many times a day. He'd HATE to see himself like this and I know it's a dreadful thing to think, but I almost want him to did peacefully rather than get any worse or have to have a lot of outside help that he'll find distressing.

I'd be so grateful for any help or advice. Am an only child with small children of my own and I'm overwhelmed with sadness and frustration.

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PoppySeed2014 · 25/06/2014 19:51

Am aware that it's awful to want my dad to die (not did as I typed above!). Obviously I don't want him to die really. But I don't want him to get more and more frail and confused. It's just so painful and I know he wouldn't want to be like this either.

Sorry. Feels horrible to see all of this written down and I'm aware people have MUCH worse conditions etc.

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ancientbuchanan · 25/06/2014 19:52

It's a dreadful problem. But yes, ring social services , the adult services side. He may, should, be eligible for an in means tested grant. They will assume, I'm afraid, that your DM can cope, but they might have respite care, ask for it. Also help the aged website is useful. And they provide befrienders, at a cost, who can come in.

You may, or may not, be eligible for care, ie visits to help him get up, have a shower etc. If not and you can afford it, there are various care agencies who will do the same.

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Changelenom · 25/06/2014 19:53

www.amazon.co.uk/Keeping-Mum-Caring-Someone-Dementia/dp/1848502915?tag=mumsnet&ascsubtag=mnforum-21

Apparently this book is very good on coping with someone with dementia and may give you some advice on various help you can access.

I'm sorry I don't have any other advice to offer.

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deepbluetr · 25/06/2014 19:55

Give AGEUK a call. www.ageuk.org.uk/

I have found them really helpful, giving advice about all sorts of support, finance etc to assist your Dad. There may be benefits he could claim to help him have a carer visit to help or adapt his home for easier living.

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PoppySeed2014 · 25/06/2014 19:57

Wow. Am in tears, so touched to have replies!

I think that carers would really upset my Dad. He would just hate having strangers around. He's ok once he's up and about (sort of) and can shower/go to the loo etc on his own.

I guess I'll call social services and maybe go to see them and find out exactly what we can do to help.

My Mum is taking the brunt of it and is exhausted and depressed (but pretends not to be).

Am going to look at that book right now, thank you!

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Jimbee13 · 26/06/2014 08:28

www.amazon.co.uk/Confidence-Care-U-K-Providing-Alzheimers-ebook/dp/B00JX430NS/ref=sr_1_1?s=books&ie=UTF8&qid=1403767409&sr=1-1&keywords=confidence%20to%20care&tag=mumsnet&ascsubtag=mnforum-21

Try this book - full of really practical hints and tips about caring for someone with a dementia.

My advice is don't try to struggle on your own. Do what you are doing and seek help in the local community.

Also don't have a downer on carers. If you find the right help and support it will make a huge difference and you'd be surprised at how they can be accepted into the family.

All the best

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AliceInSandwichLand · 26/06/2014 21:17

I'm sorry you are facing this. My father has been in a care home with dementia for 8 years, and my father in law for 3. As others have said, you need to start with social services and go from there with regard to working out which benefits and services you can access for him.
My single biggest piece of advice would be not to be distracted by what the father you used to know would have wanted. My father was a private, puritanical man. My FIL was a government scientist with a rich social life. Both are now incontinent and inevitably having to accept intimate care that would have horrified them had they been lucid, but they aren't, and in their current situations not only is care essential, but they don't actually seem distressed or bothered by receiving it, either. You need to arrange whatever you need to arrange to keep your parents able to cope. If that means visiting carers or residential care or anything else, just try to find a solution that works and don't waste energy on feeling guilty about it. You have to do what you have to do, you don't have a crystal ball, you can only make the best decision you can at the time: you can only do your best. You will all feel guilty, but that doesn't mean you aren't doing your best. And you don't know how long things will go on for, so don't commit to more than you can sustain if this situation is long term: you can prioritise your parents now and then, but you can't make them the centre of your life for the foreseeable future, so make sure you don't stretch yourself so much that you or your family suffer. Good luck, hope this helps.

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ancientbuchanan · 27/06/2014 13:13

I so agree with Alice.

Even if they hate it from time to time, it may be necessary for your DM.

You need to accept with dementia that you are now the adult, and the person concerned with dementia deserves respect, kindness, and their wishes to be acceded to where possible. But sometimes it just isn't.

DM had respite care quite often until it became obvious first that she needed care at home, first for a few hours a day, latterly 24 hours. She hated it. But the choice was that or leave her home. When put like that, as I had to, brutally, she accepted it. Though it didn't make her easier to cope with from time to time.

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Fairy13 · 27/06/2014 13:19

Adult services social worker here.

If you call AS they will come and do an assessment with you.

They may be able to organise care etc (it sounds like he would be eligible if that would be helpful).

In our area we also do something called carers take a break - where the carer gets a certain amount of hours (I usually say 4) per week where a carer will come and sit with dad so mum could get out and about and have a break. It might not be at that stage yet but something to bear in mind.

Also just to check, do they have all the right telecare equipment in place? Lifeline etc for falls? That is definitely worth exploring. - we do it free in our area.

How much money does dad have in savings do you know? If under 23,250 they will be eligible for assistance with funding.

Does he have a diagnosis of dementia?

More than happy for you to PM me if you need any help at all.

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Fairy13 · 27/06/2014 13:22

I should add that whether or not you can arrange care if he doesn't agree very much depends on whether he has the capacity to make that decision - however a healthy dose of persuasion is definitely beneficial and what you need to remember is that whilst he may not have liked the idea of carers once upon a time - it is there for the purpose of remaining as indepenant as possible for as long as possible.

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whataboutbob · 27/06/2014 20:22

I so agree with Alice. No one thinks: " one fine day I ll be doubly incontinent and quite incapable. of rational thought or action. I ll require ongoing personal care. D'you know what,I'm cool with it". But sadly that is the situation some of us will find ourselves in. And us adult children of these unfortunate persons have to take the steps necessary to ensure they are cared for appropriately.it s hard enough, so we should try and jettison unhelpful thoughts ( " they'd hate it if they could see themselves now" " they made me promise they d never go into a home"). Needs and attitudes change as the person becomes older and more mentally frail. It s a hard enough task being present for a frail elderly/ demented parent,without guilt making it even more uncomfortable.

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twentyten · 27/06/2014 23:57

SendingThanks and Wine. Lots of great advice on here. Look after yourself.

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PoppySeed2014 · 28/06/2014 07:03

alice thank you so much. What a lot to think about and yes, I do have to see my Dad as he is now and not as he was 10-20 years age. Thank you.

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PoppySeed2014 · 28/06/2014 07:09

fairy thank you! Definitely too much in savings to qualify for help and I/they assume they'll have to pay for care.

No diagnosis (although I have no doubt he'd be diagnosed at a glance!) but the doctor is talking to my Mum about it. They've mentioned going to hospital for tests etc and my Mum has decided it's only worth it if a diagnosis will actually help as my Dad really hates going to hospital and would possibly find any tests distressing. But I know that it's probably better to have a diagnosis than not.

No home alarms or anything - my Dad is only ever alone for an hour or so so if/when he has a fall my Mum is almost always there.

I would say that for someone in their 90's with a crumbling spine and osteoporosis he hasn't managed to do much damage with fairly regular tumbles! Thank goodness!

Thank you so much for every reply. I appreciate them so much.

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PoppySeed2014 · 28/06/2014 07:14

Phew. It's all so sad sometimes isn't it.

Only a year or so ago I saw my Dad help my toddler learn to walk and I thought - wow, one day my toddler will be steadier than my Dad! And that day came at least 6 months ago. What is very lovely now though is that my little boy loves to fetch things for his Grandpa and they have a lovely connection. They often chat away (often two completely different conversations!) and are very happy in each other's company. That's lovely to see.

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twentyten · 28/06/2014 11:28

That is priceless. Take lots of pictures. Loads of great advice here- always somewhere to rant and seek support.

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Universal · 28/06/2014 11:40

I'm going through the same but coping by separating the emotional from the practical and dealing with one thing at a time.
Look into ways to keep the home environment safe - fire alarms, bathroom adaptations. Make the home future proof. If you make the changes now your dad will become familiar with the new environment. Changes like this in late dementia can be more difficult.
I've just organised a cleaner for my parents so my mum can concentrate on the personal care for my dad. It took A LOT of persuading!!! It's also nice to know there is another person to keep an eye on things when I'm not there.
Finally... seek help. Some dementia and confusion can be signs of other things and some can be treated.
Good luck. I found the hardest thing was getting my parents to admit they could do with help.

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sandwichland · 28/06/2014 12:15

I work in adult social services and support my elderly parents at a distance ....suggest you not only focus on the help you need to get in place for your Dad but also the support you and your Mum need both practically and emotionally as you are both carers. Even if your Dad isn't eligible for support or won't agree to an assessment you can ask for a Carer's Assessment for your mother and/or yourself from your local authority social services department. This is a conversation with you about how the caring role impacts on your life and what support you need and how to put the support in place. If you find it easier to contact a independent organisation - most areas have a Carers Resource or Carers Centre - what service there is will depend on where you live. Carers Trust (national organisation) website should be able to help you find out what is in your area and also have a look at Carers UK website. They are the national carer led organisation that support and campaign with and for 'unpaid' or family carers such as yourself. There should also be a page on you local authority website about support for carers which should lead you to local organisations and groups. Often getting support for your Mum and you can help you in figuring out a way to get your Dad to accept help and/or help you to work out how to manage the situation if he is reluctant to engage with medical or social care help.......take care!

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Trooperslane · 28/06/2014 12:19

It's horrible seeing your parents decline, op

Confused

I was recommended the book contented dementia by Oliver James.

Do lean on ss, that's what they're there for. My Mum's SW was excellent.

Good luck x

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ancientbuchanan · 28/06/2014 14:57

It is horrible, but you also need to see it as natural. That helps a little. I also found what a gp friend said immensely helpful, that they accept risks we would find unacceptable and that's their right. And far better to stay at home if possible, albeit with increased risk. We stood out against everyone who wanted our DM to be in a home, it was not what she wanted. We got criticised by loads of people but not the professionals. So do what your heart tells you along with your head.

And brilliant idea to take photos of the good things.

In due course you may need to assume that in some areas your DF is like a toddler mentally, but others may be as sharp as ever.

The people you need to cherish are your DF, esp your DM, and you.

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AliceInSandwichLand · 28/06/2014 15:31

I think your mum is right - a diagnosis is only going to help if it's going to make a difference to what treatment he's given. If it's just to put a label on the issues that you are already aware of, then is it worth the disruption of the diagnosis? You will find yourselves repeatedly debating whether things should be done just because can be done, I suspect - we certainly have done this again and again. It's all very hard.

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deepbluetr · 28/06/2014 15:34

I have just bought a larger house so that my Mum - in her 80s can come to live with us. She is not so fit and able and I feel sad a the thought of her being on her own any more, as my Dad died a long time ago.. She struggles with organising her own home now- paying bills, getting repairs done.
We decided it would be best if she lives with us in a family home.
She has the freedom to come and go, have her friends to visit, but none of the worry of paying for bills and I know she will eat well with us.

It's nice to see her excited at the prospect of winter- safe and warm, surrounded by her family and grandchildren.

We move on 8th August.

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domesticslattern · 28/06/2014 15:48

It is awfully difficult isn't it.
I found some useful stuff on the Which site //www.which.co.uk/elderly-care

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whataboutbob · 29/06/2014 08:53

Congratulations deep blue I hope it works out really well. If that set up is possible and the person does not require 24 hr care, just support with practical issues, it sounds ideal.

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deepbluetr · 29/06/2014 09:01

Thanks whatabout. I do have reservations. My mother and I are not very close, very different people, but have learned to tolerate and respect each other over the years. She gets on well with my children though, and I have chosen a house with lots of living space downstairs so that we will not be living on top of each other.
Why do elderly people have so much stuff though!!
Not just one tea set but 30!! She has dozens of sheets, woollen blankets, ornaments, clocks, cutlery. I will put loads into storage until we decide what to do.

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