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Confused

DeltaT

Registered User
Feb 15, 2020
10
HI all. I have read quite a number of posts in the forums here this morning, and see the outpouring of emotion and people describing similar situations to my own including how staff behave when they think you aren't there. How my brothers have behaved with lies during their emotional turmoil is another story. My mum has recently gone into a dementia unit, end of Nov 19, aged 90, and it has been heart breaking. Seeing the tears, the begging to be taken out and the loss of dignity and privacy all around. I visit 3 times a week . She is still mobile, and frequent lucidity where I can just about have a normal conversation sometimes. It also seems I am the only one that can understand her at other times. I think this is because I was doing so much caring for her in the many months before she moved out of home. I think she has the Lewry Bodies Dementia. My mum has been attacked twice by another patient in the carehome which has made the whole experience like hell. The last one he knocked her to the floor trying to strangle her. That person is now under direct supervision awaiting removal. Mum recently called Police to be rescued wanting to get out, and now the phone has been removed by my EPOA brother (lives 2hrs away). Unfortunately I wasn't in the country at the time of the will creation to be considered. I have a replacement phone ready that has no keypad and has quick dial buttons, but I am not allowed. She has no TV, and family photos have also been removed by family. Her room is all but barren apart from her own dresser suite furniture.
For the crying and begging to get out which is deemed 'normal' for new dementia patients, I would say would be normal for any sane person too! Except the dementia person can't comprehend either the reason or permanancy of the situation at times. I sometimes wonder if the so called 'acceptance' or 'they have settled now' is just a euphemism for the dementia having taken over to an extent that they can't process it at all anymore?
When I call the free dementia helpline for support, the lady (dementia educator is what she does for other homes) tells me mum should still have contact with the outside world, outings, and family photos and memories of the past help her to remember who she is today, including the phone seeing as I have one as described. Even the social worker from elder abuse has suggested daily visits during this hard time for her. So I am surprised to see on the forums here the common advocating of removal of such things as phone and memory related stuff to even visiting much less! From what I am seeing everything is happening to isolate mum and I am really finding it abhorrent and distressing.
 
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karaokePete

Registered User
Jul 23, 2017
5,303
N Ireland
Hello @DeltaT, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I can understand your distress.

When you mention members suggesting not to visit I think that is for the first couple of weeks only so that a person can settle in their new home. You mention your mum moved into full time care in November so that shouldn't apply now.

Have you been in discussion with the staff at the dementia unit about what is happening? You mention a helpline - is that the helpline for this forum? If not it may help to talk with the staff there as they are usually very good and may be able to help you.

The details are:-

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday
9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Live on-line advice is also available in the UK and you can see the details of that if you follow this link https://www.alzheimers.org.uk/get-support/national-dementia-helpline/live-online-advice


Beyond that I feel that someone with experience will see your post and advise. Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 
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DeltaT

Registered User
Feb 15, 2020
10
HI, sorry, I am in NZ, and there is not much locally online forum wise compared to the vast experiences of postings here. The helpline was the free to call NZ national 0800 one. However if I can give a connection, my mum is originally from Nottingham UK. Her brother is still there, but he can't contact her with the phone gone unless he goes through the carehome itself. We are a large family, 5 sons, so now we have to get the staff to take a cordless phone to mum any time we call. Depending on the shifts there are 2-3 careworkers to 16 residents in this unit.
Ok I understand better what you say re visiting. One of my other brothers told me to keep away for the first few days as I was so upset. When I did see mum for the first time she was annoyed and said "where have you been when I needed you most?" , I was mortified. I still really cannot fathom that this is how we treat people. I think I could understand better if she was more incapable.

For anyone interested I have just found a Free online 7 week course in Understanding Dementia offered by the University of Tasmania starting Feb 18, 3hrs a week required.
 

DeltaT

Registered User
Feb 15, 2020
10
HI, thanks for those. It gets difficult with information overload and worse when "experts" do not agree such as I mentioned in the first post. I am going to canvas more and see who agrees more. For example being told about Sundowners and how I have to change my visit time etc. Yet I spend 10mins of time on google scholar (science reports) and come up with 25% have it, some question if it exists at all, and in most cases there is a explanation for the behaviour from injuries, what they see, how they are treated, external stimulation, all in the activity period of sunset (not clock time). So Sundowners gets attributed to anxious behaviour of an indivsual in the eveningthat no one has bothered to work out why. So I learn things like giving residents cups of tea late in the evening really isn't a good idea...try telling the carehome that. At present with daylight saving here I am leaving while its still daylight in the evening.
I am still waiting for people to post to tell me more about removing photos and limited ability phones.
 

canary

Registered User
Feb 25, 2014
11,690
South coast
Sundowning may not show up on a google search, but I think that most people on here have come across it. Both my mum (with Alzheimers) and my MIL (with vascular dementia) had sundowning. I had never heard of the term when they were plagued by it and it was only once I came on here that there was the Aha! moment. I think the problem is that no-one knows exactly what causes it, so experts (who always like to know exactly what is happening) take the stance that because they cant explain it then it isnt happening :rolleyes: . I never visited mum in the evening because she was always so much more confused at that point and although she didnt ask about going home during the day, once it got to the evening she would.

BTW, just as aside - when people with dementia ask to "go home" they usually dont mean the home that they last lived in. It is actually a state of mind - a desire to find that special place where they can leave the confusion of dementia behind. When mum asked to "go home" I discovered, by asking her what it was like, that she was thinking of her childhood home that was bombed in the war and she was still expecting her parents and siblings (all long passed away) to be there, just waiting to look after her.........

Re the phones in care homes. TBH I am not a fan. Giving them a mobile sounds like a loving, comforting thing to do, but often it is counterproductive, focussing their thoughts on what they have lost and meaning that when they have problems, they phone relatives rather than seeking out the care home staff.

I dont know about the photos - mum had photos in her room, although she couldnt remember who they were. Im wondering whether this advice has been given because sometimes people with dementia think that photos are real people who may be spying on them, or stealing from them. The advice in this case is to remove the photos.

I hope that some of this helps. Dementia is such a confusing beast = it confounds all logic and so much is counter-intuitive.
 

Quite contrary

Registered User
Jan 5, 2020
72
Ilford, Essex
Photos have always made my husband feel anxious because he feels they are looking at him. As well as Alzheimer's, he has pre-existing Asperger's and people on the autism spectrum have a big problem with eye contact. There seems to be some similar symptoms.
 

Hazara8

Registered User
Apr 6, 2015
416
Photos have always made my husband feel anxious because he feels they are looking at him. As well as Alzheimer's, he has pre-existing Asperger's and people on the autism spectrum have a big problem with eye contact. There seems to be some similar symptoms.
Dementia in its varied presentations - there are many - remains a minefield of speculation and theory, unpredictable outcome and behaviour. The factors we apply in terms of logic I.e. the formality of family photos, telephone for family contact and so on - become misnomers and often a mischievous element when dementia governs that "normality ". In fact a new "normality" comes into play with a new language. Both of which are as real in their own way as are the instinctive feelings and reactions that we apply without question. Thus the call to " go home " is taken literally, especially if it is accompanied by tears or distress. And yes, it CAN mean just that, but in my own experience in observing dementia in numerous residents in a Care Home, it can mean all manner of things related to " comfort " to " safety" and more subtle feelings of security. Every case is different. Every person has a life story within them and there are moments in that life story which can be powerful and draw on the " going home" plea. By the same token, there are those moments which relate to childhood and which present as " now" and not memory. Thus you can witness an 80 year old lady who is " living " a flash of childhood, in the moment, as if it were taking place. All real. Real to them. Real to the dementia mind. So in all of this , we have to refrain from applying our own logical perspective on what seems on the face of it, actual here- and- now cries for help. The real challenge is in stepping into the dementia world and recognizing the authenticity of what is being said and what is in fact a "translation" expressed in a " normal " manner. Dementia in its varied forms presents certain familiar themes which do take place. " sundowning " most certainly is one. I have witnessed this time and time again. Nobody can give a clear explanation, but the actual physical habitual occurrence IS FACT. The trick is understanding that fact and then acting with it to curb distress or agitation when it takes place. I suppose the key factor in all this, must be an awareness of an elusive and mysterious disease which plays all manner of tricks on its carrier and implies they are the instigator of that behaviour. Thus we can become impatient or even angry when that individual appears to be blatantly uncooperative, aggressive or just plain off the wall. This is precisely why if and when you become a full time carer of a loved one living with dementia, you soon learn what true and profound empathy really means and what true and profound CARE really means. And what true and profound love really means, when the dementia journey draws to a close. The question of photos or phones in a room taps the surface of an immense black hole of unknowns. But observation and careful application of that observation will provide at worst, a positive reason for suggesting perhaps that potential "comfort " rather than potential "distress" comes about, merely by simply removing a single mobile phone.
 

DeltaT

Registered User
Feb 15, 2020
10
The new normality of no photos and no phone, contradicts the patient being in touch with their memories and loved ones. I have a fixed line phone ready withthe dial pad removed. She has the choice to ignore calls if she wants to, but she has that choice to maintain contact. Family photos remind her of her loved ones.
The actual physical occurance is set off by a point of stimulation in the time frame of what used to be the active part of the day for them. That time of day of going home from work, or preparing a meal for the family. Seeing staff change to go home, increased traffic out the window, a trigger. Most outsiders do not bother to seek out the trigger and shrug and say o its sundowners. OR it can be something as simple as a injury that staff don't know about that gets knocked when putting their pjs on.
What about TV? Is that consoling, relaxing, soothing, keeping their attention, always hearing people talk regardless if they can process the storyline? Or is that too a distress?
 

canary

Registered User
Feb 25, 2014
11,690
South coast
There are all these lovely theories going around of "living well with dementia" and "maintaining contact", but this is often espoused by "experts" who have never actually had the day to day experience of looking after someone 24/7
In mums case the photos did not remind her of her family, because she did not recognise them. She did not object to them so I left them, although on one occasion I found them all placed face downwards in a drawer. Mostly, however, they were really only of value to the care home staff who could see what she had been like.

What about TV? Is that consoling, relaxing, soothing, keeping their attention, always hearing people talk regardless if they can process the storyline? Or is that too a distress?
Some people with dementia find comfort in TV, but most people get to the stage where they think that what is happening on TV is really happening in their room and that the people on TV can see them and talk to them. I well remember a very disconcerting conversation I had with mum when she asked if the people on my TV talked to me? When I replied that, no, they didnt, she replied proudly, the ones on mine do! Soon after that I found that I had to severely censor what she viewed, the news and soaps she found particularly distressing as she thought all these things were happening to her or her family. Even things like nature programs upset her and on one occasion after she had watched one she was convinced that there was a snake in her home that was going to kill her. Eventually she could not remember how work it, so I removed it.
 

Banjomansmate

Registered User
Jan 13, 2019
1,628
Dorset
The Banjoman was totally convinced the whole Bake Off team were there with him in his flat, although he did wonder how they were going to remove the huge great lorry out of the room!
 

Hazara8

Registered User
Apr 6, 2015
416
There are all these lovely theories going around of "living well with dementia" and "maintaining contact", but this is often espoused by "experts" who have never actually had the day to day experience of looking after someone 24/7
In mums case the photos did not remind her of her family, because she did not recognise them. She did not object to them so I left them, although on one occasion I found them all placed face downwards in a drawer. Mostly, however, they were really only of value to the care home staff who could see what she had been like.


Some people with dementia find comfort in TV, but most people get to the stage where they think that what is happening on TV is really happening in their room and that the people on TV can see them and talk to them. I well remember a very disconcerting conversation I had with mum when she asked if the people on my TV talked to me? When I replied that, no, they didnt, she replied proudly, the ones on mine do! Soon after that I found that I had to severely censor what she viewed, the news and soaps she found particularly distressing as she thought all these things were happening to her or her family. Even things like nature programs upset her and on one occasion after she had watched one she was convinced that there was a snake in her home that was going to kill her. Eventually she could not remember how work it, so I removed it.
A very good observation. My mother went from absolutely loving nature programmes and their like, to the point whereby anything on screen was "real". I recall a popular antique auction programme on television upset her to the point that l had to switch it off immediately in order to alleviate her genuine distress. A hitherto gentle minded lady at the Home l frequent, once became very agitated at the old black and white movie being shown and picked up the TV set and threw it across the room. They had been showing an old War film. Such incidents are varied and many.
 

DeltaT

Registered User
Feb 15, 2020
10
I understand there will be different and unique experiences of what happens with our dementia loved ones with TV and photos etc. What happens for you may well not happen for another. So the consistent advice I am reading being given on this site seems to be more along the lines of what CAN happen, rather than WILL happen. And therefore eliminating the risk by removing TV, photos and phone? Swim in the sea you can get eaten by a shark....so never enter the sea.
This is why I am finding it confusing that on this forum there are blanket recommendations, yet the careworkers, social workers, educators and registered nurses I am talking to are coming up with a different recommendation.
 

Weasell

Registered User
Oct 21, 2019
138
I understand there will be different and unique experiences of what happens with our dementia loved ones with TV and photos etc. What happens for you may well not happen for another. So the consistent advice I am reading being given on this site seems to be more along the lines of what CAN happen, rather than WILL happen. And therefore eliminating the risk by removing TV, photos and phone? Swim in the sea you can get eaten by a shark....so never enter the sea.
This is why I am finding it confusing that on this forum there are blanket recommendations, yet the careworkers, social workers, educators and registered nurses I am talking to are coming up with a different recommendation.
 

canary

Registered User
Feb 25, 2014
11,690
South coast
You asked questions about things that had been done to/for your mum and seemed to be asking whether this was reasonable and we all answered out of our experience giving possible explanations of why these things had happened. Im am sorry that you see them as blanket opinions. Mind you, one could aslo see the "experts" reccommendations as "blanket opinions" too. The very fact that we have had experiences that differ from "experts" opinion shows that it doesnt always work that way. Have you tried asking family why they have removed the photos etc?
 

Weasell

Registered User
Oct 21, 2019
138
i often give advice that is very blunt or goes against the flow.
unfortunately when you post it is pot luck who replies, it is simply luck of the draw.

Why no TV in the room?
If it is due to residents throwing the sets then special perspex cases can be created?
 
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DeltaT

Registered User
Feb 15, 2020
10
Sorry, my comments re blanket advice pertain to the whole site/forums, not this thread.
Phone I have offered with the keypad removed, and power timer, turned down by epoa as it can increase anxiety, yet I go there and mum says why can't I contact family.
TV not put in or allower by epoa as she won't be able to comprehend it. No problems when watching it with her in the lounge. Professionals say good background noise, and good to hear people talking. No history of thinking things are coming to life from it.
Photos removed by family as they cause anxiety as memories to her former life. IN fact she asked for them to be removed to protect them from being taken by other patients but the next day will want them back.
I have never read anywhere about not reminding them of their former life!
Just seems to be a knee jerk reaction to everything, and a mum sitting there in a barren room.
 

Louise7

Registered User
Mar 25, 2016
1,794
Sorry that you and your brother don't see eye to eye about what's best for your Mum. Dementia is a big learning curve for everyone and sometimes we get it right, sometimes we don't, and everything from caring techniques, medication, activities etc are all a case of trial & error as everyone with dementia is different so behaves and reacts differently. What your Mum says to you may not be the same thing that she says to your brother or the carers. 'Professionals' can and do get things wrong when it comes to dementia (I've had plenty of experience of that!) and can be just as prone to making 'blanket' statements as anyone else. If one suggestion doesn't work then sometimes you have to try something else, and then something else. Everyone's just doing the best they can for their loved one with dementia - that's all we can do.

Perhaps you could put together a photo album to go through with your Mum when you visit? My Mum has a small album which we like to look through now and again. I keep it in a drawer in her room to stop other residents from picking it up and taking it. Maybe some pictures could be used to decorate the walls? We've put strings of bunting up Mum's room which really brightens it up, plus fake flowers, and bringing in things like cushions and throws also makes it more homely and comfortable. We also brought in a small radio which Mum likes to listen to in her room, as well as watching TV in the lounge. Just a few ideas which we found helped to stop Mum's room looking too clinical/barren (not 'blanket' advice) ;)
 

DeltaT

Registered User
Feb 15, 2020
10
Yes I think you see the point I am trying to make.
Shouldn't we try some of these things and see what happens, rather than blanket not do them?
 

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