Caring for the Vulnerable

[Taffy]

Just a Idea!

I am trying to heal by venting and I feel like you are putting a lid on my chimney.

It's a shame that you feel this way when after all it's just support and recognition of the reality of your own situation you are bringing awareness too. I truly believe after reading many testimonies and replies on this subject that a dedicated place on TP to accommodate such issues would be very helpful.

In reality dementia is such a sensitive subject and as many have reported.... people that don't have someone close to them with dementia.... cannot appreciate the difficulties they face living with it. I think the same applies to people that have their loved ones in a facility where the compassion and attentive care is provided.

Elderly abuse is WORLD WIDE it's ungodly.

 

[jc141265]

The thread wouldn't have degenerated into 'personalities' if I hadn't felt that the line had already been overstepped. I felt that a member's opinion was being passively agressively quashed, much in the same way I have been told, that because I am Australian I should censor my thoughts, because my father is no longer in a home I have no need to comment. This in any other thread type I can tolerate, but when often the cause for the continuation of abuse is because people are afraid to speak up, or because people are encouraged to shut their eyes and mouths, told not to question and just accept I cannot tolerate it in a thread dedicated to exposing the truths of existing abuses and suggesting solutions. Twice now it has been pointed out to me for no good reason in this and a similar thread that my father is not in a care home, the whole damn reason he is not in the care home is because if he had of been still in the care home he would have been dead right now, and would have died horribly and painfully from neglect. I am not exaggerating when I say that, it is an inarguable fact, we have the doctor's observations & records and the evidence of the effects of good care since. Dad should be able to be in a care home and safe.
If fact perhaps if there wasn't this constant tut-tutting of folks who dare to suggest that perhaps standards in homes are a bit lacking (on this and other threads), I wouldn't feel the need to get on a soap box, for I would feel safe in the knowledge, that bad care is not acceptable. I wouldn't be afraid that the naive do-gooders out there were sabotaging any progress that was being made in improving the situation. If a person in power happened to hear my complaints, and then someone else pipes up that my situation is not the norm, and that really care is usually quite good, do you think that the person in power would bother to get off their butt to fix anything?? Postivity has its place, use it to say this is what good care homes should be like, but don't use it to devalue the message that care homes on the whole are not really good enough and something should be done about it.
P.S. And it doesn't appear that this is just an Australian problem - http://www.telegraph.co.uk/news/ukn...of-elderly-abused-in-care-homes.html#continue

 

[Brucie]

Speaking as a member here - I originally posted early in this thread and have not done so since.

I believe that balance is what everyone should be aiming for.

I reckon to say that all care homes are good, or that all care homes are bad, does not reflect reality; there will always be a variety.

I also reckon to say there is widescale abuse, or that there is no abuse, does not reflect reality.

I believe the best that most members of TP can do is to cite their own experience of good, or bad, and say respectively whether that is the way they believe things should be, or shouldn't be. In doing that they do not denigrate what others have experienced.

Sometimes I think that there is too much believing of what is in the media - without using personal experience as a gauge - and overstating the situation in one direction or another does nobody any good.

Describing good and bad experiences helps most of us to evaluate where our own experience sits on the scales.

Something that members generally try to do here is to balance views on a variety of topics. Members will often step in especially to do that when their experiences do not match what is being described.

This is the power of the forum.

New members come along regularly and see what has been posted before and if there is no balance, may be swayed to believe one way or another is the truth. This is not necessarily so. It is best if TP can give a range of experiences - choice - for the reader to ponder.

I am going to dare a ask a difficult question ...... why is that time not spent with John?

perhaps I can give my perspective, Karen.

Yesterday I was at the Alzheimer's Society for a meeting about TP. Why was that time not spent with Jan? Well, for a start in my case [and this may not apply to Hazel], I find that Jan gets agitated when I am too long with her these days. She can't see me, may not know me from Adam [or even Eve], and may think my holding her hand is a liberty too far. How can I know?

From a personal side, I find every visit really painful these days anyway. I visit every other day, so manage my time to be with her - for her benefit and mine - as often as possible, while attempting to work with TP and AS to try and help others in a similar boat.

Beyond a certain stage of development of dementia, the condition determines what we can do for the person.

Members of TP have a huge range of backgrounds, jobs etc. If they can use past work experience practically to try to improve things for everyone, why on earth should they not do so? You are doing the same thing yourself, I think? With people trying their best from all these angles, we all hope to make a difference.


.... all just my thoughts

 

[TinaT]

B ruce,

I think if you read my first post on this thread I did maintain a balance, even in my opening sentence!

xxTinaT

 

[Brucie]

yes I agree, you did.

I was writing generically and purely as a member, addressing my post to everyone and anyone - except where I wanted to respond directly to something Karen, very relevantly, asked.

 

[Tender Face]

With mum going thru NH care, hospital and now hospice care the need to be with her is more important than ever - not just because we are approaching 'end of life' care but that she needs the emotional support alongside her specialist nursing and medical care (we are not talking *just* dementia, of course - although her mental state is deteriorating as quickly as her physical state) ....... that she has been in a home/hospital and now, sadly, hospice, does not mean that I feel free to leave the caring to others and 'get on with other things ......', which, I am sorry, is how I see it ........ but I respect we all have different lives and different ways of dealing with things .......

What fuelled me on this thread (and yes, of course, I am pursuing a complaint about abuse but in our case primarily to the General Medical Council because mum's abuse was in an NHS hospital not in a care home) ... is that it is hugely important to me to help garner support to prevent similar abuse happening to anyone else .....

You are absolutely right, Bruce - you will guess I have a whole dossier of issues I will try to address at some point .... what I have learnt (from TP as well as direct experience with mum over the last few years) has horrified me - and I'm not one to keep quiet!

But it is about timing - and where mum is just now uses the motto 'Time is precious' ....... and I have to recognise priorities - as so many here and while I can be with mum - that is the single most important thing in life just now .... whilst trying to still be a 'mum' myself to a son who needs me more than ever and attending to any other minor 'essentials' like laundry and meals!!!!!!!

.... campaigns and complaints can wait .......

One point of note I pondered today about this thread whilst watching mum doze was the pictures that are posted from time to time by members of their loved ones in care homes ........... it is something that has always unsettled me as the 'subject' clearly cannot give their consent .... (consent being a huge issue with me at the minute) ........ have we ever had any pictures posted from members showing how unhappy their loved ones are?

Is it not a violation of rights to post such pictures on the 'www' without consent ..... otherwise, what justification is there for doing so ?

Random and probably over-emotional thoughts ......

Karen, x

 

[Amy]

Hiya Karen,
Sorry to hear mum is deteriorating....I am sure everyone feels for you in the pain that you are experiencing.

I struggle to understand how you might view those of us who have had to place our loved ones in care as then feeling 'free to leave the caring to others and 'get on with other things ......', '........TP is full of stories of people struggling to accept that they cannot cope at home any longer.....people struggling to care long term for a spouse/partner/parent who is in a NH....people struggling to keep their own lives together.

You are going through a horrendous experience with your mum....and finding your own way of dealing with it....that is a different experience to people who face years of their loved one being in advanced stages of dementia....and they find their own way through it.

Love Helen

 

[jc141265]

I understand the concern about taking photos without consent...I have often pondered on it, as I desperately want photos of Dad in both the good times and the bad, but at the same time have wondered about that very issue...do I have the right to take a photo of him when he can't tell me not to, when he might be of the opinion that he doesn't want anyone seeing him in this state.
My final decision was based on:
(a) my knowledge of Dad's personality before this disease;
(b) the thought that he would understand that I wanted photos of him and photos of him with me and the family;
(c) the fact that I don't want to hide my father's condition as if it were a thing of shame and I want/need proof of the physical & mental (you can see it in their expressions and ways of holding themselves) damage that this disease does;
(d) the thought that he would understand that my motives are for good and that I only want to improve things for him and other sufferers in the future and if that means exposing what this disease really does then so be it;
However I do agree that it really is something that should be thought about carefully and considered and not scoffed at as a ridiculous idea. I also make sure I tell Dad why I want to take photos (in case he can understand) and I do little prayers (?) to Dad (as I can't communicate with properly otherwise, I tend to try mental telepathy in case it might actually work in some way - nuts I know!) and ask him to forgive me if I am doing him wrong. Taking photos is an entirely selfish action because it does not obviously benefit the sufferer in anyway, so it is an action that is different from making decisions for the sufferer that are necessary for their best interests. So Karen you are not at all kooky for bringing up this topic.
Perhaps it is even more pertinent, when the sufferer cannot clearly communicate at all - like Dad and thats why I have thought about it too. And I still don't know for sure if I have done the right thing by him...I have even taken videos of him. Forgive me Da.

 

[Tender Face]

..... that is a different experience to people who face years of their loved one being in advanced stages of dementia..

I must remind myself how lucky I am! and what a 'blessing' this is for mum being tortured both physically and mentally .....

 

[Brucie]

Pain tolerance and circumstance is an individual thing.

It is a good thing for everyone to remember that nobody's pain is any worse than anyone else's, just - as Amy says, different.

 

[jc141265]

I'd say that people's pain can be worse than others, however it depends on what the individual can take, what their tolerance levels are, and what experiences they've had in the past and at the moment that makes them able to deal with it differently. For I am certain that somebody who's going through the death of their loved one is going through more pain than me and probably can't tolerate it very well, and me I've been through a lot of pain that at times may have been worse than what others have yet suffered but sometime I can tolerate my great pain better than they can tolerate their currently smaller pain, simply because I have been doing it for so long now. That is not a judgement on folks, its just the way life is. I think back now to what I thought was great pain in the past, and it wasn't really that bad in hindsight. Other times I think of how well I handled some troubled times and I wonder how I coped.
But enough about that, lets get this thread back on track...what can be done to improve care homes and in general not just in care homes what can be done to help prevent abuse of the elderly and even the not so elderly but those that no longer have the ability to stand up for their rights?

 

[connie]

lets get this thread back on track...what can be done to improve care homes and in general not just in care homes what can be done to help prevent abuse of the elderly and even the not so elderly but those that no longer have the ability to stand up for their rights?

Thank you Nat.