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Left my mum in hospital today, and it was like leaving a scared child

(50 Posts)
CMOTDibbler Tue 23-Apr-13 21:29:05

Planned surgery to fuse some more of her spine and hopefully get rid of some of her severe pain which isn't helping with her dementia.

I undressed her, put her in a gown. Tucked her into bed. And sat and answered for her when she looked so blankly at the anaesthetist and surgeon when they asked questions. She couldn't even understand being asked her date of birth sad. Couldn't understand the menu card.

She looks so small now, so very, very old. But she's not - she's 72.

It broke my heart leaving her there when it was all so confusing to her. And knowing it'll all only ever be worse.

onehitwonder Tue 23-Apr-13 21:31:53

So sorry to hear this, it is a horrible disease.

MrsFrederickWentworth Tue 23-Apr-13 21:37:06

So sorry. My ma too is suffering pain Nd has serious short term memory loss, increasingly she is like a lost small child. It's so very hard to see them go down hill, to leave them, and not to be able to do anything.

usualsuspect Tue 23-Apr-13 21:38:33

How sad for you. Dementia is a cruel condition. I hope the operation eases her pain.(hugs)

mynameisnotmichaelcaine Tue 23-Apr-13 21:40:04

That sounds so hard. You looked after her, and should feel proud of yourself. Thinking of you both.

glaurung Wed 24-Apr-13 02:48:33

It is hard. MiL was in hospital recently and was very confused. She's also got a lot of back pain from spine degenerating and I can't imagine she'd take well to an operation for it, but I guess if it helps with the pain it will be worth it in the long run.

Hope she makes a swift recovery and can come home quickly afterwards.

Needmoresleep Wed 24-Apr-13 07:25:42

Poor you. Hospital and anesthetic is the last thing anyone who is struggling to keep their orientation needs. I hope it goes well and that she comes home soon.

CMOTDibbler Wed 24-Apr-13 08:05:21

TBH, I'm hoping that she'll have at least a week in hospital, and hopefully a few days in the local community hospital after to give dad a proper break, and also involve care services a bit more.
The two of them are right on the edge of coping now, and though I can provide support, organise stuff, and be there on acute situations, I work ft, live 80 miles away, and have a 6 yr old and can't do stuff for them day to day. It never feels like enough.

And my brother is a useless bastard who can't even be bothered to send them a birthday present sad. Or answer the phone to them.

Needmoresleep Wed 24-Apr-13 11:01:03

Be careful. We were promised some community hospital and then with two days notice were told that my mother would instead be discharged on Christmas eve to an empty flat, with no Social Social services assessment or care organised.

The general agreement now is that this would have been disastrous. As it was we could afford private convalescent care which gave us a bit of time to think. In retrospect though, and with a bit more knowledge of the system, I would have tried to track down the social services liaison person in the hospital and really pushed. Discharge seems a good point to get things started/improved.

Another person was temporarily in the nice nursing home because a kind relative had bought a week's stay as a Christmas present. It struck me that this was a great, albeit expensive, gift, not just for the person enjoying hotel like surroundings but all involved in her day to day care, who also got Christmas off. It does not sound, however as if your brother is about to sign a cheque...what is it with these brothers.

It is also exhausting. I went through something like this when my dad was dying three years ago. 300 mile round trips every weekend for four months. With children and a full time job. I ended up getting really run down and it took about a year to bounce back physically. It seems simple to say you can only do what you can, but its true. Social services need to be aware of how close to the edge both you and your dad are. It helps no one if either of you fall off.

CMOTDibbler Wed 24-Apr-13 12:36:27

I won't believe anything till I see it! They'd cope if she went straight home, but dad won't be able to get her to comply with any restrictions on sitting/standing or exercises and of course that will compromise the fusion.

I had a nice call from the pain team earlier as she was 'being rather inconsistent' and they wanted to check up on some things.

CMOTDibbler Thu 25-Apr-13 08:26:08

Dad went to visit her yesterday, and she didn't recognise him sad

Her assigned nurse had a chat with him as she is performing so badly - chewing liquids, not responding, and of course he'd have arrived in such a poor state as I know he'd had to sit down on his walker at least 5 times between the car and ward that they are now concerned about their home life. I very much hope this translates into something useful.

Hopefully she'll be a bit more awake today, and I'll try to go down tomorrow

Needmoresleep Thu 25-Apr-13 09:02:52

Poor you. Keep posting. I don't know if by some psychic mechanism you can feel support and good will. Trust me it is being sent.

Is your dad a stoic. Is it worth then emphasising that if he is expressing concern, he must be in real trouble, and that carer breakdown is a real risk.

I probably feel for him more than you. I dont know if your mum has had a personality change but mine was really really up and down in her convalescent care home and immediately after. (And still is to a lesser extent.) Sometimes she did not know who I was, others she was extraordinarily aggressive to me (accusations of stealing were only the start), and other times she was quite lucid, understanding and appreciative. This was really hard to process. All right my husband, when I phoned him from 150 miles away, telling me to ignore what she was saying as it was only her illness, but its not possible not to have an emotional reaction if it is your parent. Staff told me behaviour is often worse to those who are closest, and so most likely to tolerate the extremes.

This then made sense of my mother's behaviour when my father was dying. I had thought she was being pretty callous and insensitive at a time when my father was honestly frightened. I wondered why he put up with it, without complaint. I now realise that at some level he knew what was happening to her and decided to hide it (denial? because he did not have the energy to do something about it?). The burden on him must have been immense.

My understanding is that unless her underlying disease has progressed significantly there is scope for people to bounce back to close to where they were before, assuming she has the right support in place and is able to resume routines before they are lost. But a couple of big assumptions there. The advice I had, which we took and which worked, was that she needed a couple of months of additional support to reorientate and resume routines. But put another way without that support, key living skills would have been lost, and in my mothers case a care home would have been the only option.

Good luck.

CMOTDibbler Thu 25-Apr-13 18:21:49

Thank you for the support. It is very much appreciated.

I feel hugely for dad - he has a horror of mental illness as his mum was very ill from his birth till she committed suicide, and he had to watch it all (inc going to locked wards and actual padded cells by the time he was 13). And he gets no love back from her when he could do with it himself - and he's so isolated now as all her friends have dropped away.

He went to see her this afternoon and she's been moved to the single room by the nurses desk as she's been pulling all the tubes out and not eating or drinking (and spitting things out). Hasn't been out of bed even to sit yet and is on pressure relieving matress and being turned. Dad got a very few words out of her.

Will be going in in the morning so he gets a day off - its taking a huge toll on him. And promised I'd talk to the nurses about what the plan might be

CMOT, I have no answers, but just wanted to drop in and say how sorry I am that you have yet more worries. (()) Off now to make a cup of tea for AP, whom I left with clean clothes to put on and who will be sitting on her bed looking scared until I come back up.

I really hope that your mother does improve when she gets back home and things are familiar.

Cmot, sending you best wishes for today.

CMOTDibbler Fri 26-Apr-13 14:27:05

Love to you too LaBelle. Have you managed to access any help for AP yet?

The good news is that mum recognised me as her daughter when I went in. Bad news is that she couldn't retrieve my name.

Still not out of bed, had removed all her IVs herself, and only drinking/eating when directly observed and reminded.

Had a good chat with her nurse though, and they will be keeping her till they are happy, and are very aware of how fragile dad is. Talked about intermediate care, and they will be putting her forward for that but have already organised multi disciplinary meetings plus SALT involvement as her swallow seems poor.

Dad can't walk today - not sure if he's overdone things or what. Fortunatly mums 92 yr old friend has organised someone to pick things up for him, and his meals will be delivered later.

This afternoons actions are to talk to him about a carer popping in a couple of times a week to clean/run errands etc, and to sort out a Waitrose delivers account that I can deal with for him.

MrsMcEnroe Fri 26-Apr-13 14:34:57

Hi CMOT - just wanted to send you my support, I have been in a not-too-dissimilar position with my mother and it is awful for everyone concerned.

I think you are doing all the right things, definitely getting the shopping delivered is a good idea, and meals on wheels etc .... Sounds as though your mum's care team are aware of the situation, and hopefully you can get a home visit done before she is finally discharged? Has this been discussed? (Sorry if I've missed this upthread). Hopefully the Physio/OT/ whoever would be able to see that your mum and dad can't cope on their own. Do they claim the care allowance etc? Have you been told what they are entitled to? - is there an OT you can talk to at the hospital?

CMOTDibbler Fri 26-Apr-13 14:40:40

They don't claim anything! Its taken me a long time to persuade them that they need any help at all. But tbh, money isn't really an issue (they were never well off till they retired, but as they live very frugally and sav

drjohnsonscat Fri 26-Apr-13 14:41:44

CMOT just sending support. It's such an awful disease and your poor father, having to face this given his own experience as a child.

No advice but plenty of sympathy for you all.

CMOTDibbler Fri 26-Apr-13 14:44:07

(gah, stupid PC)

saved hard for their old age, they are comfortably off.

They just need practical help in the house, and support for dad to understand what is going on with mum so she doesn't send him insane.

And some joined up thinking about them as a coping duo. Or not coping!

MrsMcEnroe Fri 26-Apr-13 14:54:40

I really think that an Occupational Therapist may be of use in assessing how much your parents are able to cope with at home on a day-to-day level. Might be worth asking the nurses on the ward if they could refer you, or ask your parents' GP to help contact an OT?

CMOTDibbler Fri 26-Apr-13 17:56:07

The nurse said that OT would be involved, and make a home visit.

Physios tried to get her up this afternoon and failed apparently.

Am though, vvvvvvvvv proud of my dad who has phoned up a cleaning company and booked a spring clean for the house all by himself! And did not argue at all at the idea of a regular visit.

MrsMcEnroe Fri 26-Apr-13 17:57:06

Ah that is good news re your dad - accepting that they need help is the hardest part in my experience. Good luck x

Weeks of phone calls and emails, CMOT, visits from nurses, OT ... then nothing. Visits seem to be taking over my life, but achieving nothing.

More to the point, how are you doing? Celebrate your dad's coping even with little things; this is a very long road and everyone is doing their best. Except your brother and my sister.

CMOTDibbler Sat 27-Apr-13 09:00:58

I'm ok. Ish. Without MN it would be bad, but coming here and writing it down is very therapeutic.
Yesterday dh and I had a 'date' at a local woods to walk the dog just the two of us while ds was at swimming club after school and it was lovely.

I managed to get dads sister to phone him yesterday, and as she's local to him may help out a little (she's 13 years younger, so very fit), and one of mums friends is taking dad to visit today, so thats a day off.

TheSecondComing Sat 27-Apr-13 09:09:11

Message withdrawn at poster's request.

CMOTDibbler Sat 27-Apr-13 15:13:59

Thanks SecondComing.

Although I can manage to visit in the short term, its not sustainable - managing as a family is hard enough as it is, and this situation will get little better in the long term.

Dad said she was brighter today, but still in bed and not drinking enough. He took her a pudding from his delivery and she ate that - but was asking me to get her more till I pointed out that it wasn't going to help her diabetes was it hmm

And he can't find any pants or nighties. I sent him more nighties for her weeks ago and said to hide them so she packed what she had out and he'd have spares, but no. I start to wonder about his state of mind sometimes.

Needmoresleep Sat 27-Apr-13 16:31:05

I agree about sustainability. The short term is one thing, but you need a solution which could work 3-5 years for both of them.

Is there any scope for them to "downsize" to sheltered or extra-sheltered accommodation people like this www.retirementsecurity.co.uk.

Nice flat where you can shut your own door, but lots of support in the background, eg 24 hour warden, restaurant, housekeeping, handyman, reception and other residents to provide company and support for your dad.

I simply asked everyone, GP, priest, everyone I came in contact with, for their ideas. Even the British Gas engineer. Community health staff will have visited most places and know what local options there are. Perhaps easier for me because my mum was on her own so there was really no question of her coping with a discharge home, in the way your dad might be able to "cope" with your mum.

The crisis then became quite a big project, but one that had a sort of satisfying conclusion. If there were an option which allowed on-site support for your dad, this enables him to provide better care for your mum and a better quality of life for him. For me it means there is a team who know my mother well and who I can phone or email. One day they will tell me she needs to move to a home but this now is put off until it is really inevitable.

It would also mean that should your mum need to move to a 24 hour care setting, your dad is not on his own.

Service costs are quite high, though much much cheaper than a care home. Attendance allowance and carers allowance are available, and though they may be reluctant to claim, if the money will make an important difference, they should claim.

And look after yourself....

CMOTDibbler Sat 27-Apr-13 17:13:58

If they move anywhere, they are moving to where I live - I've already found sheltered, supported and care options here as I worry about dad just keeling over and being left with mum. I could cope with dad living with me in the short term, but not mum (I'm not evil, but she has no inhibitions about what she says, which is unacceptable around a 6 year old). Here, the town is small enough that he could easily visit her in the care home, go on a scooter to the shops (full of elderly chatterers) etc

ssd Sun 28-Apr-13 15:31:42

hi CMOT

am so glad you're getting good advice here, it makes all the difference when you're pulling your hair out with it all and siblings dont do a thing

am sending you hugs, its so very hard I know ((((((((((((()))))))))))))))))

xx

MrsMcEnroe Mon 29-Apr-13 18:49:21

I was wondering if Age UK might be able to provide some advice and support? (Apologies if this has already been suggested). www.ageuk.org.uk/.

<hugs>

Hi, CMOT. I am following to see how things are going for you. And sending you lots and lots of good wishes.

CMOTDibbler Tue 30-Apr-13 09:05:15

Thanks for the good wishes.

They are driving me insane. Absolutely frickin insane. Dad is insistent that as long as mum can get in and out of bed he can cope with her. And that she's coming home today hmm And then he calls me because his catheter bag came loose in the night and got the bed wet, and he doesn't know how to change the bed or use the washing machine.

I have a new mantra 'they are adults, dad is allegedly of sound mind, and I can't make them do anything'. But it'll be me picking up the pieces again...

Needmoresleep Tue 30-Apr-13 09:16:25

Poor you.

I dont need to tell you that it sounds as if it will have to get worse before you can step in to make it better.

The watching and waiting is horrible.

CMOTDibbler Tue 30-Apr-13 20:04:31

So it has, of course, gone tits up. He got her from the ward, thought they'd eat in the hospital cafe, and she refused to eat and sicked up the tea.
Got home, shes refusing to eat, drink, take medication or respond to him and has vomited a couple more times, and just gone to sleep the rest of the time.
GP will visit in the morning, saying 'she might just be exhausted' but as she's essentially spent the last week asleep who knows.

I have a nice brick wall to hit my head against..

glaurung Tue 30-Apr-13 20:34:17

Oh you poor thing. If she's vomiting though, it suggests it was too early to discharge her and I would hope the GP will readmit her tomorrow.

ssd Tue 30-Apr-13 20:36:06

huge sympathies fro me too, its awful I know xx

I am so sorry for your poor father, who must be living in a nightmare, and you, who want to help so much and can't ....

Have I missed something, or can't they both get Attendance Allowance and pay for some local help with bed changing and operating the washing machine?

Although AP should have had this for at least two years and I am stilll doing everything single handed. How did you contact the online counselling you told me about once? I so need to tell someone how it is and yet I mustn't complain to anyone I actually know...

(Sorry for self-indulgent moaning on your thread...)

Apart from a few details you could be telling my story....

My Mum, 79, has Alzheimers. About two years ago she was given what she calls her 'stupid tablets!!' They halted the advance of the revolting illness.

Just before Xmas 2012 my Dad went for a biopsy on his jaw. He is almost 81 and worked for 50 years during which time he never had a day off work due to illness. A few weeks ago we got the news that he has agressive, untreatable cancer in his jaw, his ear and it is marching its way through his brain.

We have all rallied round - they refuse to leave the house they bought 40 years ago - they want to stay there and be together. Dad is also refusing to go to the hospice once a week - he says it is boring!! I go down each Tuesday and spend the day with them. I am currently trying to get slightly drunk after a day with them!!

Last week my Dad said 'Take your Mother out for a few hours before I take her out with a rifle grin - not that he has a rifle you understand...he even bribed us with money each to leave him in peace to sit and watch telly!!!

Growing old is not good. I came on to message you to try and help and have ended up 'spilling my guts' about my own situation.

xxxxx

Theas18 Tue 30-Apr-13 21:20:56

Don't know how I've missed this thread. How difficult for you all. Have a hug from me.

twentyten Tue 30-Apr-13 21:35:46

Sending thoughts and hugs. Keep posting. You must look after yourself too- and your own family.

CMOTDibbler Tue 30-Apr-13 21:51:19

LaBelle, they could afford the help, but are too damm stubborn to ask/accept it.
The counselling I did was with Spokzpeople - I just contacted them and paid for it. they were lovely, and it really helped.

Shabba - what an awful situation you are in. Your dad sounds ace.

Maybe we need a support thread for those dealing with a parent with dementia so we can all unload to those who understand

Sounds like a good idea CMO.

I always search for the humour in everything...I'm a bit weird like that!!

Mum put the kettle on today....I heard it switch off. 10 minutes later she put me two heaped spoons of coffee in a small cup and made me the strongest, coolest, brew I have ever had hmm she brought in 3 little cheese biscuits for me. The conversation went like this......

Me: Oh ta Mum.

Mum: Dip those biscuits in your brew they are lovely hmm

I put one biscuit in my mouth and tasted soggy, mouldy awfulness. Tried to put them in my bag without her seeing.

Mum: They are the last 3 in the pack I wouldn't share them with just anybody you know!! Get them eaten now!! THERE ARE STARVING CHILDREN IN AFRICA!!!

So even though I am 56 I ate the buggers!!! <<heave>>

IF tomorrow I have food poisioning I want you all to report my Mother to the police grin

CMOTDibbler Wed 01-May-13 07:48:10

Euch, theres nothing worse than the mouldy food thing. DH and I have a tag team system now to deal with manky milk/empty the kettle of scale/wash the teapot/ remove weird things from the fridge as soon as we get there, then I bleach the hell out of the downstairs bathroom while he chats with them.

Dad can't work out why the cleaning company need to send 4 people for a whole day to clean the house. I can, I once spent 6 hours cleaning in their kitchen and didn't finish

Oh CMOT and Shabba, what an awful situation you both find yourself in.

I have no useful advise to give either of you (my healthy dad died very suddenly aged only 65 after only 6 weeks after his diagnosis, my mum - whilst a difficult woman to deal with - is relatively healthy and lives in The Netherlands (am Dutch but live in the UK)
I am dreading the day mum gets too old to live alone, she refuses to come here (and why should she) but I cannot go over there.

I hope you both get the help you need and Shabba, I agree with CMOT, your dad sounds ace!

Needmoresleep Wed 01-May-13 08:04:25

Two threads. One for support and one for gallows humour.

The title of this thread is fantastic. It sums up the dilemma. Underneath is a very scared child-like person struggling to make sense of anything. In my case it is weird how my mother is still able to press those buttons, even on days when she does not know who I am. I feel awful if I respond. She has reverted to being a scared and manipulative (said it..) six year old.

I am told it will get easier when she reverts still further and no longer fights for her independence. However further dependence is not something to wish for.

There are still some funny moments. Last week my mother was clear with the community memory person that she is no more forgetful than anyone else. She was then asked if she used a hearing aid or wore glasses. No, of course not. Both the memory lady and I looked at the reading glasses sitting on the table and then at each other.

Tomorrow is her formal diagnosis from the specialist. Presumably Alzheimers. It will come as a complete shock. She is very resistant to me going into appointments with her so I will leave it to the doctor to do the dirty but have said I then need to speak to him to discuss medication.

Shabba - I hope you had an extra glass for us. My dad died of a brain tumour. In his case it was painless and it was generally as good a way to go as any. (Four months from diagnosis, so a chance to say goodbye and hope, at least on his part, right to the end that treatment might shrink the tumour. There was some odd dementia but he retained good lucidity. He spent hours on his computer, I realise now that his study had become his retreat away from my mums illness.)

Needmoresleep Wed 01-May-13 08:12:52

Further thought. It could be a long thread. My mum is physically very strong. Her mother suffered from dementia at about the same stage and went on to live for another 8 years. In my mother's case it is likely to be longer. In all I may spend more of my life looking after my mother than after my children.

Things are on an even keel now but in the bleaker moments this responsibility felt very oppressive, even though I am lucky (very, very lucky) that there is money to pay for care.

I 'survived' the night smile must have a stomach made of Iron!!!

xx

CMOTDibbler Wed 01-May-13 09:48:50

Well done on surviving! Must be good for our immune systems!

4 hours till I have a flight to do meetings in Germany tomorrow. Phone dad at 8.30 to find he's on his knees. And he finally accepted that he needs carers!

So, I've been on the phone and organised someone to do an assessment this morning (the care manager happened to be in the next village) to start asap.

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