What to say to people with Dementia?

[Brucie]

Caring I would think involves knowing the person

No it doesn't, and anyway, what they were, whether nice or nasty - that is irrelevant now. We can only take them as we see them.

Obviously you Brucie are a saint

Do I detect a hint of sarcasm there Nat? It's the first really daft thing you have said on TP anyhow. [hope that doesn't offend ]

No, I am in no way a saint, but perhaps I am just lucky in the home that Jan is in, perhaps the people there are 'better'... I don't really think so. I simply treat the other residents as I hope that others will treat Jan, with care. It doesn't take a lot of effort, and lest people think I have had an easier road than most, that is probably the opposite of the case.

Ok now Brucie its your turn to tell me why in actual fact, its good for me to have to do all this??

Not my place, Nat. We all do what we can with what we can and live with that.

I was probably at your point of view 4-5 years ago. Times and things change. They have to.

 

[Amy]

Hiya Nat,

I don't like them for hurting my dad, I don't like them for being mean to him, I don't like them for being rude, despite the fact that I know that they are in the most part not at all responsible for their actions.

That sounds a normal reaction Nat. When mum was mean to my kids, and one day attacked one of them (he was 8) I screamed. We protect our own.

Obviously you Brucie are a saint

I bet others could tell you otherwise! I know how you feel though Nat. You type in a post full of anger, grief and resentment, and Brucie replies with "loving the person as they are", or some other thing which indicates a level of acceptance that you don't have. But sometimes I think I am scared to accept the situation, and be at peace with it, because it will feel as though I have stopped loving.

I also spend quite a lot of time talking to others in the Nursing Home, though there are few with dementia. Most relatives seem to visit once a week. S is very depressed, has pains everywhere, feels that she is letting God down; T has dementia and continually asks "Where am I?"; E has no relatives in this country. F is depressed, has poor mobility and I simply think his wife cannot cope with him at home. I try and speak to each of them when I visit; Why? If I can raise a smile, if I can make them feel that someone cares, if I can bring a little bit of light to their day, then I feel that I have done something of value. Yes, it does take me away from my mum for a little while, but I still spend most of my time with her.
I would like to think that when we aren't there other relatives say hello or give my mum a smile. I don't know.

A question Nat? Are you mad at your dad? His illness has put you in this situation.
If it weren't for him you could be enjoying being married. You wouldn't have to visit that place every day. You wouldn't be feeling as you are. Aren't there times when you only visit your dad because it is "the right thing"? Some days don't you just want to say "Sod it, this is my life, I can do without this."? And don't you feel a selfish sh-- then? But isn't that what Brucie advocates? Draw a demarcation line. Allocate time and emotion to the person that we love who is in advanced stages of this illness, but then build a life independent of them; give your emotional all whilst you are with them, but then when you walk out the door, walk into the rest of life and get on with living it. So it becomes a case of deciding what is a reasonable amount of time to give. Sometimes I wonder if that is an easier decision for a partner to make than a child, just because of the different emotions involved. As a daughter we feel that our parent has given us life, continual love and support, been ther for us since birth, and in some way we should repay that. I don't know, I am waffling.

I'm off.
With love
Amy

 

[jc141265]

Anger is

Daft eh?

You guys really still don't get how overly sensitive I can get....can't you tell yet that I am nearing hysteria...that I need someone just to say Nat, the whole thing frikkin sucks, and just cry dear....don't tell me why I should be feeling otherwise, I am not in a state to be reasoned with. (Thanks to those who do PM me, and basically say this)

Talk about being daft....

Dad lives in a home that is not just an old folks home it is a high care home, basically where people come to die, as it is the only place in my area that provides that sort of care. And that is not just my opinion that is what the manager said to us last week when I attended a 'care assessment' meeting, a review of my Dad's current care plan.

I walk in and on the noticeboard is the names of the people this week who died (so that we can pray for them), I always scan it quickly because for some stupid reason I worry that one day Dad's name will be there and no one will have told me he had died. All to often I know who the person is, it is not a big home.

The whole place stinks like rotting bodies (probably my imagination but it stinks and so much so that I have had nightmares that it was caused by a dead body someone had forgotten). The folks walk the hall drooling, peeing in the corner, screaming out, moaning, clutching out at you, shaking the chairs they are locked into (even though restraint is a last resort treatment). The other day I was even a bit scared to walk down the hall with Dad because one of the newer younger inmates has been aggressive and violent of late, and I could feel the vibes bouncing off him, I was scared for me and Dad, because there were no staff around who could have helped us, if he decided to go nuts.

I'm sorry I am 31 and I DON'T WANT TO DO THIS, I DON'T WANT TO SEE THIS LEVEL OF DEATH AND MISERY, but....how could I not, how could I leave my poor father alone in such a world?

...angry at him? Nooooo Amy, I"M ANGRY I AM ANGRY at my MOTHER for leaving him there, for visiting only once a week. I DON'T CARE what excuses she has, I DON'T GET TO use those excuses, so why the ...should she? This man she says she loves, this man who is her soulmate. But I don't get to be angry do I? How can I the poor woman is the object of sympathy, her husband is dying in the most terrible way. Her lack of visiting is simply a sign of how much it all rips her heart out....bullshhhh. She doesn't frikken care about anyone but herself in the end, never has.

I DON'T GET TO BE ANGRY...and then I get on here trying to tell people that my heart is barely able to cope with seeing the misery of these people and I get tut tuts.

Yes its that time of the month again. I am throwing a tantrum, and I don't really care who I hurt when I do so (ask my husband). So although I don't mean it right now, years of experience has told me to apologise now because I will regret my outbursts in the morning. So sorry Brucie, sorry Amy but I am not going to sit here and agree with you and calm down when its all this calm acceptance that continues this disgusting level of care, that allows society to think its alright for my father to be left to die like this. Society won't help me look after my father and in fact society seems to think that I should also be providing comfort and attention to others whilst doing so. I don't think thats right.

As for my treatment of the other inmates, of course I treat them well and as I hope others treat my father. Talk about saying daft things Brucie, you should know better than to say the obvious to me. I know, i know, u were saying it not for my benefit but for all readers of this post. Whatever, now I've terrified everyone away anyway.

Somebody needs to blow their stack every now and then.

 

[Amy]

RIGHT NAT,
WE CAN ALL SHOUT. GOOD, BLOW YOUR TOP - YOU OBVIOUSLY NEED TO.
Nat, the whole thing sucks. It is not fair that your dad got dementia so young, it is not fair that your mum is leaving the main caring to you; it is not fair that your dad is in such a sh--- place. It is not fair that you feel frightenend when you go to visit him. It is not fair that you have to care for the other residents when the nursing staff should be looking out for him. None of it is bloody fair, and it obviously hurts you like hell. You don't scare me away, though you may want to. God I wish that I was there and you could shout and scream as much as you liked, then we would hug and cry together, and then I would come and visit your dad with you. And I could go and talk to all those other people so that you could concentrate on your dad. I'm sorry that I let you down by making a "nice" response, when I realised how **** you were feeling. But you have had no tut tuts from either me nor Bruce, we both have too much respect for you.
With love
Amy

 

[Brucie]

Hey Nat, and we all DO blow our respective stacks as and when that is needed. It's what stacks are for, after all. And when we do blow, there is no requirement to explain why afterwards because TP is a place above all others where we know what's going on.

But we are at stages in our horrors that are different. I've peered over the abyss - darn it, I had a whole leg over it, ready to jump, until Nina hitched up the 4x4 and dragged me back.

can't you tell yet that I am nearing hysteria

of course, but there is little we can say to change that, from half a world away. A reply above all else means we care. [that bloody word again, I know]

that I need someone just to say Nat, the whole thing frikkin sucks, and just cry dear....don't tell me why I should be feeling otherwise, I am not in a state to be reasoned with.

. No-one is telling you how you should feel, we just give different views of different situations. You can then choose to discard them, or stick them away somewhere to reconsider later.

Obviously you Brucie are a saint

Excuse me my own prickles! If I were a saint I could help Jan rather than be a useless appendage. That hurts me more than I could possibly explain, even in one of my ramblings.

Take care of yourself, Nat.

 

[noelphobic]

I reflected on my post and your kind reply and found that, as a bloke, I was rather amazed to think to myself that in a funny sort of way I love all these amazing people in Jan's home. They are part of my family now.
[]

I find that when I visit my mum I am also visiting some of the other residents. I also find that they are like family members in that you like some more than others! When I leave one of the residents always tells me that she will look after her. This resident is over 90 years old and extremely frail herself!

 

[sam.p]

Get Angry

Hi Nat, I am not going to try and answer any of your points, or even comment; I just wanted to say you shout, rant and scream as much as you like; you have the right.

 

[Tender Face]

Hi Nat!

Not quite sure what 'frikkin' is but it sounds close to a word I seem to use a lot of these days.

From my perspective I would ask you BE angry and to STAY angry (although maybe we could 'lower the temperature' a touch for your own sake?)

Anger (properly channelled) promotes energy. I'm guilty of sinking into depression and lethargy... (and getting nothing done).

I should book the week in my diary when I know PMS/PMT is gonna hit and make the most of it!

Just wanted to send a hug,x TF

 

[jc141265]

Calmer

Thanks everyone (and I mean Brucie and Amy too, you always abuse the people you know best, can identify with, I'm sorry guys, I did understand where you were coming from, but I guess I needed to scream, and I mean the sorry today), Calm here after the storm now.

Coincidentally or not, I got to work this morning and turned around and came home again. I'm exhausted, my 2 month toothache/earache is still with me, so this morning I am not going to take any paracetemol so I don't underplay my pain, and go to the doctor and rant and rave at him to do something (using my PMS TF! . First doctor I saw, told me it was a toothache despite me being sure it was sinus related, so I saw a dentist and got all my teeth fixed, but still had problems, second doctor told me to take head clear tablets despite the fact that I had had it for a month at that point...then as doctors tend to like to have the same days off as I do, I've been stuck with the pain!

I obviously was a lot more worked up about how the visits to Dad's home affected me than I realised. So much so, that when I asked my husband to listen while I read out the various posts on this thread (as a bit of a sounding board, to see if I was being completely stupid) I began bawling my eyes out half way through it, and continued to cry hard as I read the remainder to him. I never expected that just reading the words would cause me to bawl! (Amy, thats why I didn't stay long enough to see your private message to me...I read it this morning though and when I get a chance shall reply, brace lady 'grrrr'ing at me )

I asked him (my husband) what he thought when I cry like that, am I being ridiculous, should I not get so upset about it all, am I being silly? And his reply was that he wished he could do something to help me but even though he couldn't he was glad that I was able to get out my feelings my words, as he remembers that he felt that being able to do that (he just used a diary) was integral for him getting through one of the worst periods in his life.

I was also no doubt getting worked up about it all, because last night they had a 60minutes show on tv just before I posted that had a young couple on it protesting about how there was nowhere for the wife to live (she has MS and she has progressed to a stage where she needs full care)other than old folks homes. And my god when I saw how lovely the home she was staying in was (despite being an old folks home) I guess I thought, sheesh they're upset enough to go on TV about it, and the rest of Australia has no idea that it can be so much much worse. The second thing that probably worked me up is that my Mum cancelled her Saturday visit and instead is coming down today, but the main purpose behind her coming today is to pick up some bargains from the shops. Last week she was supposed to come down on Tuesday morning and got here Tuesday night instead and didn't visit Dad until Wednesday afternoon, stayed for 4 hours (I am happy about that, but I suspect she doesn't just visit with Dad in that time) and then went home again. Oh and last but not least, on my last visit to Dad he was looking wide eyed and stressed and the words that did come out were 'bad man' and it appeared as if he was telling me about a 'bad man'...he may have been halucinating, he may have been talking about himself as he used to call his reflection the 'bad man' when he was sundowning, or my other concern was that he felt a man at the home was a 'bad man'. Not to mention that a recent report on old folks home in a southern state of Australia exposed cases of sexual abuse of residents.

Needless to say, I worry about who Dad is living with and that there is not enough supervision, (and thats why I am angry that the staff aren't there to pay attention to the other residents, and why I intimate about the kind of people these residents are, making me wary of 'caring' for them, I'm concerned that they are scaring my Dad, hurting him, I think it is so much harder to 'care' for these people when I am worried that the people I am taking time to be concerned about are hurting my Dad...even though I am completely confident that if they do so, they are not responsible for their actions, so I am back again at being angry at the staff! <sigh>) that he is not safe, he can't tell me if he isn't and then one can't even be sure that he is aware of the reality of his situation anyway.

You might think oh dear she is getting silly, these people won't hurt her Dad but the other week one lady slapped Dad right in front of me, a few weeks earlier one came at him with her walker and she would have knocked him down if I hadn't been there to block her, and then last week the same lady who slapped him last time came rushing at him and I put myself between her and Dad, gave a yell of 'Ahh!' and said in a parental tone of 'Don't do that S' all the while looking at her and thinking she's still strong enough to give even me a punch that could send me to the ground and I hope she doesn't call my bluff! And since then I have heard that she has punched one of the carers! All this has happened in the times when I have been visiting with Dad, I worry a lot about what goes on when I'm not there!

Maybe I need to clarify the kind of place where Dad lives, he lives in a what is termed a 'high care mobile' unit. In that these people require to be locked into the section they are in, because they are quite mobile, but it is not safe for them or sometimes others for them to be able to walk around freely. Dad had a week last month where he ended up on the floor 4 times in 7 days and nobody knows whether he was pushed or fell. Why wasn't anyone there to see?THESE are all the reasons I am so worked up about this. <sigh>

Oh and I just realised, its a week today before it will be Dad's first anniversary for living in the home...ironically my mother's birthday...He was a skinny as a prisoner of war back then, and both my husband and I agreed that he would not last the year, now it looks like he could last another ten and he has a pot belly.

And there we are back to the same old miserable thoughts that go round and round in my head all of the time. I want this to be over but I don't want him to die.

Thanks again to everyone.

Love

 

[Amy]

Morning Nat,
I'm up early, had to get eldest son up as he's catching a train down to London.
Come home from work eh? Excellent - it sounds as though you need to take a little bit of time for yourself. Cry away Nat, anything to get some of the tension out of you; it's a ruddy sight easier on us than having to avoid the flying plates.

I understand your concerns for your dad's welfare Nat. There are similar concerns here about sexual and physical abuse in homes. When mum first went into respite I checked her for bruises etc when I bathed her. Now once a week I am there either when they bathe her or put her to bed, so I can see if there is any bruising. Where she used to go for day care, when she was mobile, she would come home some days badly bruised; a resident used to hit her with a stick if she went too close. Does your dad have bruises on him? What is the response of the staff? Is it possible for your dad to be reassessed and moved to a different unit? Do you have recourse to anyone if you feel that the unit is not fulfilling its Duty of care to your dad? I suspect that you are going to say that the only way out is when your dad becomes immobile (we couldn't have got mum in the home she is in if she still walked continually) - sad that you almost have to wish for a deterioration in condition to get them into a pleasanter environment.

Hang in there Nat. You are doing the best that you can for your dad. It may not feel as though it is enough, but we can only do our best.
Love,
Amy

-

 

[Brucie]

Hi Nat

He was a skinny as a prisoner of war back then, and both my husband and I agreed that he would not last the year, now it looks like he could last another ten

Jan was skinny too, when she went into the home. Now she looks disturbingly normal, at least facially, at least to me.

And she could last another ten years.

It is that horrifying thought that returns all the time. Her quality of life has been dreadful for at least ten years, and to think of it going on and on that way. My life has been on hold for 15 years and I still can't really plan anything. At any time I fear the care funding might be removed [though I know that is unlikely], or the home could close through lack of funding, or the home manager might change, etc, etc. Always uncertaintly and I'm happiest when in a safe rut.

And all the while that slow deterioration.

On top of that I am in the process of having to sell the home that Jan and I bought in 1987 as I can't afford to run it, financially or in terms of the time a 400 foot garden takes to look after. I'm treading a careful path with the EPA and our joint ownership. [If anyone wants details of all that EPA selling stuff, post something here and when I have successfully negotiated everything I will say how it all went]

We had 4 happy years here until her symptoms really began. In selling it, I have to get rid of almost all the furniture [too big] and so many of our possessions. Fortunately I passed through the caring for possessions barrier some time ago - they just don't matter in the scheme of things. Apart from her wedding dress and favourite coat, and this or that picture or ornament, and those two large boxes of photographs, and, and, and.

I hope to be out by June.

I worry about who Dad is living with and that there is not enough supervision

How big is the home? Has it been possible to develop any relationship with the staff and manager there? I have found that to be essential over here and they know they must always be on their toes because I can appear at any time, and I do pick them up on things that aren't quite right.

Besides that I also have a very informal, bantering relationship with all the staff. That may not be possible in your Dad's home, but it has worked for me. It has helped that they all love Jan, though that seems true for many of their charges.

Hang on in there.

 

[Lynne]

'Enough already, will someone other than me please give a frikken damn about these people, will someone else please pay them attention, I am so tired of being the one who has to care' I am so close to breaking point, can't any of you see that I can't deal with anymore of this?????' ... I feel out of my depth.

Anyway thats my whine. I really really need to go to bed now.

Nat, you're "all cared out", except that you will always - to your last breath - have a little more caring left for your Dad for as long as he needs it. We know you're wrung out and emotionally exhausted and, though most of us are thousands of miles away, we DO care, we would like to hug you & let you cry with us. Since distance doesn't permit, virtual <<hugs>> have to do. But there's a lot more behind them than eight strokes on a keyboard.

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<HUGS>>>>>>>>>>>>>>>>>>>>>>>>>>>

 

[Jodie Lucas]

undergraduate research on dementia

Hi Joey,

I am a third year podiatry student and have just undertaken a study into the feelings of podiatry students towards patients with dementia. I have worked with people with dementia for 3 years as part of social services. if you want any ideas about where you can get info, let me know.

Good luck with your studies!!

Jodie

 

[Norman]

Hi Jodie
you don't say whether you have studied dementia in with your Podiatric studies or as a separate item?
Either way I would be interested to know the conclusions.
Norman

 

[Toni]

Hello, I work with dementia patients and in my experience it never does anybody any favours in telling the truth as such; this impotant thing isthat your truth simply will not match the patients truth and if you disgree with what they believe to be right, you will do nothing but confuse the patient even further. Its good to just agree with what the patient is saying and change the subject, distract their attention and give them something else to think about or focus on.
Good luck!

 

[Brucie]

in my experience it never does anybody any favours in telling the truth as such

Congratulations Toni, there are so few professionals who understand this. Well done.

 

[Margarita]

Some thing being bugging me at the back of my mind for a few days .

At mum care home a lady with AD, got really upset one night & as I was walking toward her I ask what was wrong? She said I think I am losing my mind, ?I told her no your not .I tried to get her to go back in front room ,but she keep going on about it & would not move so I told her I shall get the nurse.

So my point is, was I right in telling her she not losing her mind? When in side my mind I new I was lying

 

[Dearth]

So my point is, was I right in telling her she not losing her mind? When in side my mind I new I was lying

Personally, I think you did the best thing... not 'lying' as such, to me I'd say you were reasurring her.

It's better to do that sometimes... I think you have to know what's appropriate and when... and often the wrong decision can be made.

I often discuss "Problems with memory" and word it in different ways such as "do you have trouble remembering things?" or "did you say you forget stuff?"

If in doubt... ask questions...

"What do you think the problem is?"
"Can you tell me a bit more about it?"

I really don't think there's a 'right' answer here... unless you wanted to say:

"You have cognitive impairment... that's why you've observed a change in behaviour... it affects your memory, reasoning, judgement and language"

Which is all very impressive, but maybe not what someone wants to hear.

Hope any of that made sense.



N.