Complain,gripe,bemoan,whine, lament, grumble, bellyache????

[Ditto]

I know I'm probably going to be inundated with nasty replies, but I don't care! I joined this sight to get insight, understanding, help......anything! so I'd appreciate the helpers help and the nasties to just read another thread....PLEASE!!!! I'm sorry, I don't mean to be rude. I have gallons of understanding, respect and sympathy for everyone here and I try to offer advice based on my own experiences whenever I can, so please may I just have some of the same. Can anyone offer advice? Have any of you or are any of you experiencing the same? I'm truly at my wits end.

My patient as mentioned previously is 88 years old and has Vascular Dementia. Everything that can be done is being done to keep her comfortable. She is extremely well cared for and wants for nothing. Her team of Doctors say she is physically healthy and well and that she is lucky in the respect that she has absolutely nothing wrong with her on a physical level. There are no infections, virus's etc. She's just plain healthy.

The big issue is her constant and never ending complaining. Every single day she complains..non stop from the moment she wakes up to the moment she goes back to sleep, and I'm talking every few minutes all day long. It is becoming quite unbearable. Any advice would be appreciated.

So far today she has had a hot head, her toe ached, she was too hot, too cold, She has a sore throat, a sore tongue, a cold, everyone hates her, her kids don't care, I don't care, the doctor does'nt care, she hates her nightdress, her eyes are burning, it's a dreary day, the music's awful, her sister's horrible, the juice is sour, the milk is off, the toast tastes burnt, the garden looks dreadful, she does'nt like her bedspread.... etc etc etc....

I repeat.. ALL DAY, EVERY DAY. Is this the Dementia or is it just her personality? OR both..

Thanks

Ditto

 

[Grannie G]

Hello Ditto

I imagine your patient`s challenging behaviour is a combination of both her personality and her dementia.

Although I feel absolute sympathy with the conditions you are living with, I relally don`t know how you can be helped. In a previous post you said ;

DittoI've had little time off as I can't bear the thought of putting her into respite care

And you are with her practically 24/7/365. Well I think you have the cause of your frustration right there.

You need a break.

Now I have a belief that no-one is indispensible. If you were run over by a bus tomorrow, and I sincerely hope you are not, your patient would be cared for. It may not be to the standard you provide but she would still be cared for.

So please insist you have a break. You are so angry, frustrated and worn out I can`t see any alternative.

Your patient will be there when you get back.

Love xx

 

[Lynne]

Is this the Dementia or is it just her personality? OR both..

Well, my guess would be both but, 'based on my own experience' as you say, a major contributory factor HAS to be your own mental & emotional exhaustion. There's only so much a person can take; some dementia patients have good days and bad days. She (and you) seem to have only bad days or terrible days, without even the hope of a good day.

If you don't take a significant break soon you will burn out. If the latter happens your patient will still be moaning away, but at someone else - not necessarily of your choice - and somewhere else where she wants to be EVEN LESS. And who knows, being cared for by someone else might even shock her into realising how lucky she is now! (I doubt that, because life with dementia doesn't work like that, but it's not going to make her worse is it!!)

Good luck, and take that break SOON. Which means at least by NEXT MONTH, not next year.

 

[jenniferpa]

Hi Ditto

Unfortunately, I can't see that it makes any difference whether the complaints are due to the disease or her personality: there is nothing you can do to stop them. All you can do is change how you respond to them, which is a darn sight easier said than done. I'm with Sylvia - you need regular ongoing respite. This sort of "drip, drip, drip" of complaints is soul-destroying. I'm not really the right person to offer advice about this - I had difficulty with this personally (and still have in other areas of my life). Can you walk away when she starts? Or cultivate selective deafness? I really think this is one of the more difficult things to deal with with dementia - the physical stuff can be hard but the emotional stuff is far more corrosive.

Best wishes

 

[Ditto]

I'm so sorry TP!

Oh I'm so sorry TP!

I am a little tired but I'm not angry. Frustrated..ABSOLUTELY!

I just can't seem to do or say anything to make my patient happier.. it's just so terrible that I can't get her to see the goodness around her and embrace it. It's not such a bad life for her, even with Dementia! As I've mentioned before, she has been so incredibly privalaged her whole life, yet nothing makes her smile, nothing makes her laugh, nothing makes her grateful. I'm sure it's a rotten state of mind to be in but what do I do and what more can I do to help her?

Since my last thread and the stir it caused, I employed a nurse three nights a week from 6pm to 6am and although it's helped me regain a little lost energy, it's not helped patient in any way at all. I thought..okay, so perhaps she needs a new face as much as I need a break but I was wrong. I asked the night nurse to write a report each evening, which she does and when my patient is not asleep during some of the night she is exactly the same with the night nurse as she is with me. Perhaps even worse. The night nurse says she's very agitated, constantly wanting to know where I am and when I'm coming home. It drives both the night nurse and herself quite mad. Her pacing around in the middle of the night seems to have increased too.

When I get home you can see a sense of relief on my patients face but it does'nt stop her complaining and if you were to read my "Dementia" diary, you'd see that she's the same when I leave her with the housekeeper for an hour during the day if I need to go shopping. That's when she generally wants a Doctor all the time and why we eventually had to remove the telephones.

It's a dreadful dreadful situation and we are all at a loss. Her Doctors say that she is quite a serious depressive and medication dosages were upped, but no change. She is currently on 1 x Remeron per day, 1 x Zopimed at night, 4 x Serequel per day and 1 x Ativan three times a day. She appears completely immune to everything and the Doctor is coming on monday to discuss changing medications yet again! (3rd time)


Ditto

 

[gigi]

Hello Ditto,

I'd like to say.."Ditto".....in regards to others comments.

You need a break..it is very wearing..

Walk away from it if you can. Try not to respond..or have set "platitudes".. like...I know..or..that's awful.

But surely if you're a paid carer you are entitled to some form of break?

love gigi xx

 

[Grannie G]

it's just so terrible that I can't get her to see the goodness around her and embrace it. It's not such a bad life for her, even with Dementia!

I am sorry my dear but there speaks the voice of ignorance.

`Even with dementia` indeed.

 

[christine_batch]

Hello Ditto
I remember you posting about this before, so since them where has your break from it all ???

What you have described could have been about my mother-in-law when she was alive and my mother in law was morning and night complaining. Then the illness came along but the triats of her personality was even stronger.

You seem to be the one that must come first because in my personal opinion and reading your posts, this lady can afford the best and there are not many who can.

So please take previous advice given to you. You have not put if you are a relative or a full time Carer, that would help us to understand and support you.

Best wishes
Christine

 

[Ditto]

To everyone

Dear everyone who has responded so far..

thank you.

It's not me that I'm worried about though..really it isn't. I desperately want to help my patient.

I have downloaded and printed just about all the fact sheets from the Alzheimers Society, bought endless books on Dementia and read lots of threads yet I'm not coming up with answers.

Can she really be so singular in this regard? Has no-one out there experienced this kind of behavior? Are there really no answers to be had?

I physically sit and chat to my patient for hours and hours on end but to no avail. I've tried board games, cards, photo albums and I've even made and given her a "memory book". I play music from her younger day's, put on endless golden oldie movies for her but still nothing. Not a smile, not a smirk, not a giggle.
I invite her neighbours in for tea with her, arrange visits to her sister, organise little suprizes often, but still moan, moan, moan or tantrum after tantrum.

Anyway, thanks.

Ditto

 

[Ditto]

My words pushed out of context again!

I am in no way ignorant! therefore I shall try and disregard that particular comment.

 

[christine_batch]

Dear Ditto,
There are lots of people here on T.P. who would love just a little of what you are offering your Patient.

I hope you do not take this the wrong way but have you considered that you are doing too much.

A friend of mine was at his wife's beck and call 24/7. Even when he went out to get some shopping, she would call him.

This lady wanted for nothing. At a Carers' Meeting, I did suggest that he pretended to go out and to see what she did.

Well, up got his wife, went to the fridge, made sandwiches and a drink. Then she went back to bed !!!!

Best wishes
Christine

 

[Brucie]

I physically sit and chat to my patient for hours and hours on end but to no avail.

Hello Ditto, welcome to the world of Dementia. That is what it is all about. There is no 'avail' to be had with dementia.

I invite her neighbours in for tea with her, arrange visits to her sister, organise little suprizes often, but still moan, moan, moan or tantrum after tantrum

that is the tragedy of dementia - we do what WE think is appropriate and best, but in reality, that is US. They are in their own hell and are as likely to think what we do to be a plain nuisance, as helpful.

No matter how much we love them, how much we are desperate to make their lot better, no matter how much we try to get through to them - at a certain stage, in a certain condition, we are doomed to failure.

In such a situation, we are the ones who need to change. We need to realise that when we do these things, we may only get a bad reaction. In some respects we do these things for ourselves, to prove to ourselves we are doing our best - we have all done it, as a trial.

This does not mean we stop trying because one day, we may get a good reaction.

It is not nice, but there are realities here. And realities ain't always nice....

To try as hard as you are takes a very caring person; don't let it get at you when it doesn't seem to work.

 

[Ditto]

Thank you Brucie, I do understand all that, but what am I expected to do for her then? Will anything make her less agitated and angry and cross all the time?

I'm by no means trying to be A Miss Goody Two Shoes, just want her to be as comfortable as possible. Does this mean that although her material and physical comforts are all taken care of that I can not worry about or strife to take care of her mental comforts too?

There must be a way!

Anyway, I shall keep searching till I find the answer.

Thank you again

Ditto

 

[Lynne]

Can she really be so singular in this regard?

Yes! Absolutely she can, especially when allowed to carry on behaving in the manner you describe.

You've probably seen a signature tag-line on here, "When you've seen one person with Alzheimer's, you've seen (only) one person with Alzheimer's".
Every person suffering from dementia brings to it their own character and personal attributes, whether good or 'bad'. In the early stages their individuality is a large percentage of whole; later - sadly - we begin to lose the person whom we knew.

I think your patient is actually still in a quite early stage of dementia; "Her Doctors say that she is quite a serious depressive" and has been for many years by the sound of it, & is unlikely to change until she loses command of her speech.
I think you have to accept that as something you can do nothing about, no matter how much you try & how long you devote to her. In my opinion, you have to change the way you look at it, and the way you deal with it. If she has dementia, that is a one-way journey for her. She will NOT ever go back to being a nicer person (assuming she ever was one?!) so unless you construct an emotional defence strategy, she could drag you down with her. It is only you who has the ability to change in this situation.

Best wishes

 

[jenniferpa]

Frankly, Ditto, I don't see how you can do more than you are doing. Dementia = inability to respond to logic. I'm not saying you shouldn't try, but what might work one day (or even one minute) might (probably won't) work tomorrow. That's not your fault, it's the fault of the disease. It's possible that as the dementia progresses, this may improve, or it may not. I would definitely make sure that everything that can be done from a medication stand point has been done, but after that you're just going to just ignore the moaning. It goes against one's nature but it is what it is.


Edited to add: totally agree with what Lynne said.

 

[Skye]

Does this mean that although her material and physical comforts are all taken care of that I can not worry about or strife to take care of her mental comforts too?

There must be a way!

Anyway, I shall keep searching till I find the answer.

Sadly, Ditto, I don't think there is a way, at least not yet.

Dementia means that mental comforts are disturbed, just as a broken leg causes physical pain. Sadly, though the broken leg can be mended, mental disturbance is likely to increase as the disease progresses.

You say you have been reading threads, so you will know that many members are coping with similar, or worse problems. Some have been coping with them every day for years.

Treatment has been tried with anticholinesterases, antidepressants, antipsychotics, and they may have worked for a while. But the reality is that dementia is progressive and incurable -- so far.

If you do find the answer, many thousands of carers will thank you!

 

[Ditto]

Thank you Jennifer and Lynne

Thank you Jennifer and Lynne. You both made alot of sense.

I'm not going to give up on her though as its not in my nature to give in. Walking away is just not an option as she already feels so abandoned. I will find a way to alleviate all this bemoaning one way or another. It really can't be good for her soul. The Psychiatrist is coming on monday and with a bit of luck he will have some sort of new plan of action.


Good luck thank you everyone.

 

[Ditto]

Thank you Hazel..

I just want to help her see the goodness in sunshine and not want to complain that its hot... The goodness in her friend visiting her and not the fact that she ddn't like her dress... The goodness in her beautiful Rose garden instead of the horror that the house across the road has better grass!

I hope you understand.

Thank you and if I find the answer... I will indeed let you know.

Ditto

 

[gigi]

Answers.........

Hello Again Ditto,

Your latest post struck me as all too familiar..

I'd like my husband to enjoy the garden with me..as we used to enjoy it together..now it's too hot, too cold..

I'd like him to laugh with me..and cry with me..now he has no emotion...

I'd like him to wake up tomorrow morning and say.."I think I'll play a few rounds of golf thismorning"..He'll never play golf again.

I'd like him to sit at the piano again and play for an hour or two..and just sit and listen and enjoy..His piano playing is brief and no longer fluent.

Most of all I'd like him to take me in his arms..dance round the floor with me...and tell me again how happy I've made him and how much he loves me.....

He never will do any of these things again..he is gone.

Alzheimers has turned him into a shuffling, dribbling, confused old man..at 71.

And I am just one of many.

Your patient is lucky to have such a devoted carer..as many of us are devoted carers..but the difference, I think..is that the people we are caring for are an inextricable part of our lives.
none of us have had training for this..we have evolved with it.

There are no set answers..
What works today may not work tomorrow...


I wish you well in your quest for answers...(I still think you need a break...)

love gigi xx

 

[connie]

No offence Ditto, but:

Bravo Gigi.

Your post speaks for so very many of us, who are just trying to care for our loved ones.

I would add that 'depression' is a whole different ball game, but seems that the outcome is very similar.

We cannot change their world. We can only hope that they are calm, comfortable and loved.