I'm a Princess, Get me Out of Here!

[Tender Face]

I know, I know, technically this is a poem and maybe doesn't belong here - but it is the only way I can express tonight the torment of the last few hours ... Mum had a few hours this afternoon between her sister leaving the NH and me foolishly taking my son along to visit her thinking all was fine - sadly he saw both mine and my mother's distress ....... we came away with mum tucked up in bed for the night, peaceful for having seen us .... but with me determined she will not stay ...... I was so overwhelmed with all the fussing (and relief?) 48 hours or so ago .... what I have seen since (perhaps more importantly NOT seen in terms of any staff being around) ..... and my mother's distress ....... well, I've tried to look at it from her point of view ......


I didn't ask to be dressed
Nor sit in the day room ..
With folk being sick
And no staff around to even notice

I'm tired and ill and want to lay peaceful in my room
With nothing to worry about
But who may visit next ..
Or to simply watch the same things on my own TV as I might do at home

Don't expect me to take my protein drinks
In front of a plasma screen
Amongst a circle of strangers
Many of whom need more help than me ......

And I don't want bingo on a Thursday night
because by the time it's played
I'm already ready for bed
And the noise through the corridor
disturbs me

And the cot bumpers make me feel safe and secure at night
But when I need release just to go to the bathroom
I'm afraid I can't always remember that
It's the orange button I must press to get help

And when I've managed no more than a spoonful of jelly yesterday
And done well just to get some fluid down
Please don't expect me to eat a sandwich
And then to leave it curling at me in an overheated room ...like a venomous snake threatening my infected throat

I'm sorry it takes so long for me to sit on the loo
But yesterday we were promised a special seat
Just like the one we have at home
But it never came ....

Like staff never did ....
When I am practically immobile and just stuck in a chair
But I can't shout for help because my voice is too weak
And if I could only reach that orange button when I can remember what it's meant for ....

We already said we didn't want the laundry
My daughter always does that for me
And now is no different
And if you thought that tatty cardi you brought from the laundry was mine
Well, I'm ashamed ...

I may not have my mind
But I have my pride and a certain style
Even if I do forget to brush my hair sometimes and need a prompt ...
No designer labels - just a dash
Of panache
How sad those residents don't have a visitor to still help them achieve some self-esteem ......

And I'm sorry my daughter got cross today
But she understands I have a water infection too
And need lots of fluids ...
So one cold cup of tea left standing was a huge disappointment

But to see two - and that the earlier one hadn't even been removed ....
Well, it's little things like that set her off ....... you see ....
She tells me it gives a bigger picture ....

That's why she would have asked to see the fluid chart
Only in spite of the medical notes
You hadn't done one had you?

You see, my memory might be gone
But I still know when things are not right
Just I can't do much for myself anymore
Which is why my daughter does the shouting ....

But don't worry, because I know she'll have a plan
To kidnap me ........


I have GOT to get my mother out of there ....... (a highly recommended, very expensive care home we have lucked upon through the hospital referral) ....... please God... some how I can get through the next week ... suppport my son in important exams ..... but I am determined mum will be out of there this time next week ... to hospital if necessary - but hopefully home - and somehow, someway I will keep her there unless medical intervention dictates otherwise.

Sorry to be so down - but these places and my mum just don't 'go' ........nor can I see that they ever will .......

Karen, x

 

[charleyfarley]

Know how you Feel

I have just read your post and I know how you feel, I went to visit my husband yesterday and felt so upset, he was wandering around lost, he hadnt had a shave and he had poo in his fingernails where he had obviously had a job wiping! The bedrooms are locked and when they unlocked the door I put in his clean clothes ( gave them back the stuff that i HAd washed and ironed that didnt belong to him) gave his hands a good wash and then gave him a nice shave and he looked half human again. But I couldnt persuade him to shower, maybe tomorrow. I don't know or care if they like it or not, but I will just get on and do it. I know they must have a hard job but some are downright miserable.I wish I could have just taken him home with me there and then, as he is in for assessment I hope it will not be for to much longer. As his speech is so bad they probably dont understand if he asks for a drink, but sont they give out drinks regularly, he was so thirsty he tried to get a drink from the handbasin hot tap on the ward when i asked and got a drink for him he drank it all in one go. Hope you get your Mother moved soon and just try not to get stressed. love and best wishes carole x

 

[daughter]

Quote by Karen: "these places and my mum just don't 'go'"

Dear Karen and Carole,

I wish I had some words of comfort. Both your posts took me back to seeing my Dad in the Home. We want so much for them to be able to spend their remaining time in comfort, just some happiness for them each day doesn't seem too much to ask. Yet there they are, somewhere we wouldn't really wish upon our worst enemies, and yet we have little choice. Even with the best will in the world, even if we had every minute of every day to devote to them, we come to realise that we cannot cope alone with their complex needs.

So, we do what is best for everyone and then try to make the best of things. We make the visits as good as we can, to bring a little normality to their world, a little of their 'old' life by taking in artefacts, by simply being there with them. With Mum in hospital after a stroke it was not so difficult once she could be taken in a wheelchair up to the restaurant for a cup of tea, or a visit from her great-grandchildren, but with Dad in his E.M.I. unit, with his dementia, with all the other resident's dementia, normality seemed very difficult to achieve.

I have tried to work out how Homes could be improved. For a start, surely some modern designer could design something better than the chairs that adorn the day rooms, or design day rooms so they don't look like just a room with a bunch of chairs all round the edge. Then again, it is not the decor that is the worst part of it. There should be more money available to pay Carer's a decent wage, to give them adequate training. Less paperwork, better organisation, more care should be taken over people's clothes (no more "it's lost in the laundry").

Carer's should be able to take the time to simply 'be' with residents, to talk with them about their past, get to understand them and the small things they could do for them that would make such a difference, talk (and listen) to their families. They should make sure there is a care plan started as soon as people arrive, talk to the relatives and make them part of the process... and all the other things that are not really rocket science but would make so much difference to people's lives. Goodness, you all know this so well, why am I saying it all here?

.. then again, the worst part of it all is that, no matter the surroundings or the quality of care, it is simply not their home, and when we put ourselves in their place we know how much we would hate it. There is no answer to that.

I am rambling and have gone round full circle. The best we can do is simply that: try our best, and that will never be enough for them, or for us, but for now it will have to do. {{Hugs}} to you both.

 

[Mrs Mop]

Nursing homes

Hello Karen I don't know what to say to you to help just that I hope you manage to get your lovely Mum out of there. When my Mum had to go into a nursing home every thing seemed fine at first and matron very caring after a while I found that each day I visited I had to complain about something. After Mum had been moved to a brighter room ( they tried to put her in one without a window) and had been in it for almost 3mths matron called in one afternoon while I was there and I couldn't believe it when she said how nice it was looking and it turned out it was the first time she had been in it since Mum had moved. I had thought she would pay daily visits to see that things were done right.
Take care Karen.

 

[Grannie G]

These posts are so depressing but they mirror my own experiences too. What on earth can we do about these places.

Karen I so sorry your first experience of a care home should be so upsetting. I was so hopeful, when your mother was admitted, and you seemed so impressed, that it would help you make a decision.
Now you and your mother have been badly let down. It happens too often.

Love xx

 

[Taffy]

Dear Karen,

Just caught up with the news that your mum is in a N/H and I am sorry to read that. I hope that your mum responds to treatment and you have her back home soon.

These care facilities can be a real eye opener and it almost always seems to be lack of staff. I hope that everything goes well for you and your mum. Love Taffy.

 

[Kayla]

Dear Karen,
I'm so sorry that your mother is in a nursing home which isn't up to the standard you would expect, especially if it is expensive and highly recommended by the powers that be.
When my Mum went into her first care home, her room was so bright and cheerful and it seemed like she was in a little bedsit, with a lot of her own furniture from home.It seemed as if she had just moved house and she had company and support.

It was such a disappointment when the home could no longer look after her and she had to have nursing care. The room was gloomy and she was immobile in her chair, after breaking her hip. It was as if she was in prison. She was so distressed and unhappy, but the staff were kind and eventually Mum was able to settle down and make a friend.

Your poem just brought home to me the despair that I felt after Mum's accident and disasterous stay in hospital.
I found that Mum didn't have a problem with losing her own clothes, but gaining things from other people, so that her wardrobe was packed with garments that didn't even fit her! The care staff did keep her always looking clean and well dressed, which was good.

I didn't have a choice about bringing Mum home again, because she was too fragile and needed 24 hour nursing care, but in your situation I might have wanted to consider a move elsewhere. My Mum was very happy in her first care home, which was family run and local, so that she could still keep in touch with her friends and social activities. There was much less social interaction in the nursing home, but the staff did talk to Mum.

Maybe this particular nursing home is just wrong for your Mum, but there might be a more suitable home where she could settle and be happier in. It all depends on whether your mother (and you) can still cope safely for all her needs in her own home, after she has recovered from her illness. Please don't rush into any decisions too quickly.

Take care of yourself,

Best wishes

Kayla

 

[Skye]

Dear Karen

Your poem distresses me so much. You were so delighted with the place at first, how disappointing that first impressions didn't last.

It does sound as if your mum is not getting the care she needs, and it's just not good enough. Our loved ones suffer enough, without being made to feel neglected.

I have tried to work out how Homes could be improved. For a start, surely some modern designer could design something better than the chairs that adorn the day rooms, or design day rooms so they don't look like just a room with a bunch of chairs all round the edge. Then again, it is not the decor that is the worst part of it. There should be more money available to pay Carer's a decent wage, to give them adequate training. Less paperwork, better organisation, more care should be taken over people's clothes (no more "it's lost in the laundry").

Carer's should be able to take the time to simply 'be' with residents, to talk with them about their past, get to understand them and the small things they could do for them that would make such a difference, talk (and listen) to their families. They should make sure there is a care plan started as soon as people arrive, talk to the relatives and make them part of the process... and all the other things that are not really rocket science but would make so much difference to people's lives. Goodness, you all know this so well, why am I saying it all here?

I have to say that I think money is the crucial factor.

John's home is part of a large chain. They are not allowed to have residents sitting in a circle, and they get hauled over the coals if a spot check by management finds that.

The rooms are bright and airy, they have an enclosed garden, and a conservatory. They are regularly offered drinks, and the ones who need it are fed. The staff are all trained, the nurses are RMNs and the carers are progressively put through their NVQs. The care plan was drawn up with my input, and is regularly updated. All just as it should be!

EXCEPT The staff are paid peanuts, and there are not enough of them. Almost without exception, they are kind and caring, and I get on well with them. But when they are overstretched, like the rest of us they become stressed and fed-up. Things go wrong, jobs remain undone, tempers fray, and the whole atmosphere deteriorates. As happened with me a couple of weeks ago, it takes an explosion to put things right.

Management has to understand that they can get all the physical things right, but if the staff is disgruntled, it just won't work. They're out to maximise their profits, as any other business. But they're not selling cars or cabbages, they're dealing with people, and with the people who love those people. If a car's faulty, we can return it. With our loved ones, we only get one chance, and we want it to be right, or as right as it can be in the circumstances.

Karen and Carole, I have huge sympathy for you both. I know how I felt.

Love and hugs,


PS I seriously considered printing out your poem and taking it in as a further example of how not to do things, but now that things are a bit better, I've decided not to rock the boat again! BUT!!!!!

 

[Tender Face]

Well today I at least feel calmer - and throwing a tantrum last night seems to have changed a few things. Staff rushing to me this morning to inform me immediately what food and drink mum had managed overnight ..... apologies they had had a 'couple of emergencies' yesterday ...(their understanding that as far as I am concerned mum not getting enough liquid down her is an emergency to her and me and shouldn't staffing levels allow for the fact there WILL always be emergencies in their environment?!) ... staff break time covered with agency staff this afternoon (not ideal but better than no trained staff at all?) ..... it was a bit disappointing that in spite of the large notice on her bathroom door that her clothes from yesterday had gone to the laundry after all ...... well, that's where I assume they are! Minor detail in the great scheme of things - but after last night's protests I was introduced to the Unit Manager today who agrees mum needs hospital investigations for a definitive diagnosis and care plan - and will work with me to secure that on an out-patient basis ...... Sod's law it's Bank Holiday weekend so I await Tuesday to progress anything on that score .......

Most important, mum was happy today ... she thinks the place is lovely (it is) ... and the staff are wonderful (they are) - IT IS SIMPLY THERE ARE NOT ENOUGH OF THEM .........

EXCEPT The staff are paid peanuts, and there are not enough of them. Almost without exception, they are kind and caring, and I get on well with them. But when they are overstretched, like the rest of us they become stressed and fed-up. Things go wrong, jobs remain undone, tempers fray, and the whole atmosphere deteriorates. As happened with me a couple of weeks ago, it takes an explosion to put things right.

Perfectly said, Hazel ..... you would have been proud of my explosion!

Mum was even able to shuffle out to the lovely garden today and enjoy the sunshine briefly .... Panicked when she said she wanted to go back to 'her house' ... until I realised that meant 'her room' ..... perhaps she has accepted this - even if it is short term - far better than I ... and it's my own guilt that I have not managed to keep her at home that is eating at me now ...... slowly perhaps, I am learning to accept that no care would ever be good enough .....

I still feel I shouldn't have had to throw a tantrum to secure the type of care I expect as a minimum - then again - at least I throw a good one!

Thank you all so much for your thoughts. A huge period of adjustment, I guess, brought on far quicker than I had ever envisaged. Love to you all, Karen, x

 

[Skye]

I still feel I shouldn't have had to throw a tantrum to secure the type of care I expect as a minimum - then again - at least I throw a good one!

Agreed, Karen. But yours seems to have worked as well as mine did!

A very able apprentice!!!

Love,

 

[Tender Face]

Today it's food ..... ... arrived after lunch to find a barely touched plate of dinner left cold in my mother's room ..... her sister (who is suddenly turning up like a rash after not bothering for her sister for years but that's another matter ....) ...... said 'She's barely touched it' .... (already told St Sis mum always eats better in company so if she visits over mealtimes would she please let mum enjoy her 'restaurant company' with her new friends .... that hadn't happened ......) ......

Now if I was struggling with my appetite I don't think I would want to be over-faced with a full roast dinner ...... let alone with pork which takes some chewing .... straight off to find Unit Manager (sorry, but I'm by-passing the nurses and carers) who agreed mum needs more 'tempting' in terms of small portions, food nicely chopped up and presented ..... even some 'soft diet' food until we can get some medical input into why she seems to be refusing to eat .....(because it is now obvious that it's not the case she is simply forgetting to eat) ..... and just because she says she's not hungry does not mean not to tempt her with the treacle tart and custard that was on offer today (which she might well try even if it is only a few mouthfuls ......?????!!!!) Or are we back in the dark ages when if we didn't eat our meat and veg we didn't get pud?

Surely, I shouldn't have had to point this out?

And if one more person dares tell me to use this as 'respite' while someone else is looking out for mum I will not be responsible for my response ..... (not people on TP who I know understand) .... I am more stressed than I have ever been when mum's been at home. I know I shouldn't expect the level of care I can give her when I can be with her ..... but is it too much to ask for some basic common sense? .... (Came away early because I reckon my blood pressure might blow the roof off the place ....... and I'm not doing mum any good if she realises how wound up I am) .....

Karen, x

 

[Canadian Joanne]

Dear Karen,

Panicked when she said she wanted to go back to 'her house' ... until I realised that meant 'her room' ..... perhaps she has accepted this - even if it is short term - far better than I ..

It sounds like Mum is settling in, even though her daughter is not. Speaking from experience, it took me several months before those urges to take Mum out of the home began to subside. It's the guilt monster talking.

I know I shouldn't expect the level of care I can give her when I can be with her .....

The key words in that statement are "when I can be with her". Unless you are willing to sacrifice your life and your family, you cannot be with her 24/7. It will take a little time for the staff to learn your mother's ways. Yes, point out the obvious to them. Tell them to present dessert first just so she'll have her calories. Put it in writing if necessary.

My mum's home is used to me now. When I want something done, I am smiling and pleasant and constantly but nicely pushing. It is a balancing act as the disease progresses.

My advice is to let the respite continue. Ask yourself - who is having the most problems? Who has a gigantic guilt monster perched on her shoulder? Everything you have done is for love of your mother. You have done a magnificent job. For this you deserve

Love and hugs,

 

[Grommit]

Tender Face. I hardly know what to say and I am sure that none of us could have done any better than you are doing at the moment.

It seems to me that there is a case to be made out for specialised homes to be opened which can guarantee our loved ones will receive the care that they need as individuals.

Probably a simplistic viewpoint but we do have specialised hospitals, Stoke Mandeville, Gt.Ormond Street etc and we do have hospices specialising in the care of patients, so why not AD homes which are specialist?

Of course, it would be a question of money, but just consider that there are almost one million AD sufferers now as the number grows.

 

[Skye]

Probably a simplistic viewpoint but we do have specialised hospitals, Stoke Mandeville, Gt.Ormond Street etc and we do have hospices specialising in the care of patients, so why not AD homes which are specialist?

We do have them, Grommit. John is in a specialist EMI unit. It's attached to a nursing/care home, but has its own mental health trained staff. But still things go wrong.

I had to bite my tongue a few times today, I dread weekends, and bank holiday weekends in particular. Although there are always regular nurses in charge, the carers are often 'bank' staff, and it's always a bit chaotic.

Karen, it's never easy, and after seven months I still wish I could have John home. 'Respite' it ain't!

Stick it out, love. If they can get your mum over this infection, you may have her home yet. I do hope so.

Roll on Tuesday, when things should be back to normal.

Love,

 

[jenniferpa]

Oo Karen - the "full meal" and the "no pud" thing really brought it back. My mother would not eat if the plate was overly full and I had to keep hammering that home to all concerned: small portions were the order of the day. Also I had to resort to sarcasm with regard to the not bringing the desert for a while because "she eats it before the main course if we do" - "At 90, life's uncertain, I think she can have desert first if she wants" Anyway, the fact of the matter was, she'd simply go to sleep if desert wasn't there in a timely fashion and not eat either desert OR the main course.

 

[citybythesea]

Keep up the good work! Whether or not the staff is underpaid is not your obligation. When they took on the job they knew their responsibilities. I am sure that the home has not suddenly got bigger and kept the same amount of staff.

AS for your mum...by God she stood up for you, so any tantrum you pull for her is well worth it! Let the staff be scared of you....just make sure the staff does not take it out on her....and who cares if you choose to go straight to the top for problems...if they hear from you enough they will fix the problem. Someday I may choose to put mom in a home and at that time I will expect top level care for jer also and if I have to I will throw the same tantrums till I get what I want.

 

[Cliff]

I am so grateful for all your posts.

My wife Dee is spending two days a week at a Care Home and seems very happy to go there. I am aware of shortcomings but it is early days yet and I will be watching.

I will keep Dee at home for as long as possible with support, respite and help and will keep talking to people about Homes in our area in case she needs permanent accomodation.

But am reading your distressing but courageous posts and taking note of your experiences.

Thank you and love to you all,

 

[Cate]

Hi Karen

I was so sorry to read the nursing home is not a good one and you are more stressed by the experience than you were having mum at home. With luck you will have mum back home again very soon.

Thinking of you.

Love
Cate

 

[Tender Face]

And if one more person dares tell me to use this as 'respite' while someone else is looking out for mum I will not be responsible for my response ..... (not people on TP who I know understand) .... I am more stressed than I have ever been when mum's been at home.

Sorry to any TPers who might have felt affronted by that statement ..... to clarify - yes when mum was first admitted even under the stresssful circumstances it came about there was some element of relief for me that some responsibility might be alleviated and I appreciated those sentiments ..... and I confess I wrote that in a heated moment after speaking to some extended family and friends of mum's who I felt ought to be up-dated on her situation (why God only knows - because they have never bothered much before - and if they thought I needed a break so badly why weren't they forthcoming earlier? - does it have to take a crisis situation? ... How come you've never bothered to ring me to see how mum is yet I feel I have to ring you now? ... etc etc rant, rant blah blah)....... I guess you can sense my mood? ........

Of course, on first impressions of the home it WAS a relief - it looked like a respite period for me even with (or because of) the stress of mum presenting so physically ill - and I very much appreciate that people who 'know' me from TP would recognise that 'respite' care (perhaps under different circumstances) would be a welcome relief for me ...... BUT ..... I feel like I have walked into a nightmare - I have come away in such despair today I couldn't even complain ...... (and many of you know that's just not me!) ... Soft food diet started this morning with toast!!!!! Finally found mum had a drink to hand in the dayroom when I arrived (docs said she should be having a full glass of liquid every hour) only it was perched precariously in her hands whilst she was blissfully asleep in her chair? How come the carer hadn't seen that and moved it as I immediately did? Then as she woke, prompted her to take some more? (Too busy watching the telly is the answer!!!!!)

Sorry to paint such a gloomy picture ... but my experience so far of this 'respite' is that I need to visit as often as I can .... (to keep on the backs of the staff as much as wanting to see mum) .....to still prepare little morsels of food to tempt mum between the ridiculous offerings they are presenting her with ...... to make sure she is taking enough liquids .... and to top it all I am now 'Visitor Co-ordinator' to the world and his wife who have suddenly decided it might be nice to visit her ....... when ten minutes of conversation wear her out .....

Sorry, just needed to get that lot off my chest!

Karen, x

 

[SHANDY]

my mom has been in a nursing home for 12 months now, my dad is still alive and visits for hours everyday.
me and my brothers had to make the decision to put mom in a care home because we could see dad was starting to loose his temper with mom at home (under the strain of course). now my 2 brothers have decided they have a life to get on with and say that mom is now in a home and being looked after, so they should'nt have to go to see her so much. guess who's been left to make sure she is dressed nicely, clothed and has all her toiletries, me , the only girl in the family, my dad is 79 and my mon is 80 so my dad would'nt have a clue what to buy. mom had a fall last sunday (so they say )she looks like she has had a beating, my dad saw the manager, only to be told she must stay on her walking frame (not likely) but it has made dad and me really nervous, she is far too
old to be having this damage to her.
well. for my brothers ! what can i say i am really angry, i also have a life with my husband , but she deserves better, none of us three kids would have had a life, in not for our parents, as mom always said 'a sons a son till he finds a wife, a daughter is a daughter all her life' how true this is !

regards
shandy