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Confused

Hazara8

Registered User
Apr 6, 2015
416
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) ;)
There are certain " givens" in dementia which one sees on a regular basis in the Care Home. Just as there are "stages" in Alzheimer's disease or particular "characteristics " which are seen, say in Frontotemporal dementia and so on. But the ' blanket' approach is perhaps not to be taken as judge and jury in all of this, because one very fundamental fact overrides much theory, professional observations or even clinical facts. That is the actual "reality" of 24hr care of one who is living with dementia. Then, despite much study and in-depth research on dementia in all its forms and the structure of the brain, the tomography and the hippocampus in respect of its deterioration , neuropsychological testing etc etc - the actual relationship with dementia unbroken and therefore in continuity, reveals anomalies, surprises and a whole mix of behaviours subject to who the individual is, their environment then and now, the fact that one can NEVER be sure about cognition, or simply what is taking place inside that damaged brain at any given time. One person can be agitated for seemingly no reason at all, whilst another remains calm and introverted. Genuine distress can be seen brought about by an inanimate object. A childhood event re-lived there and then as actual and not recollection. Hallucinations which traumatise because they are " real ". You could fill a tome with presentations that are the stuff of those living with dementia. The key factor here, is in this role of CARER. We accept that we are NOT psychologists , doctors, Admiral nurses or even consultants in neurological disorders - all of these are essential and deserve our respect and appreciation for quite obvious reasons. But when you as CARER embark upon the dementia journey with the loved one in question, you discover that you actually are witness to much that goes unseen by others. The subtle changes, the days which are " normal" when family visit and the days when a kind of Hell seems to fill every waking hour and you plead for it to end, but it does not and you just long for the next morning to be a good one. The days filled with tasks combined with the mind churning over what best to do, what best not to do, or will there be another night of upset into the early hours, or can l risk taking someone shopping because last time we had to flee the supermarket in a state of audible distress......
So, what one is really saying, is what so many here will know profoundly and without need for " expert " affirmation. This is the raw fact that living with dementia at home, especially one to one, is a revelation. You see moment to moment behaviour expressed at times incoherently, aggressively, strangely, lovingly, tearfully, stubbornly, reluctantly, amusingly and at times, very movingly. You don't spend an hour or two doing this, nor sit down and take notes as if to make a report. Nor do you satisfy your anxieties or stress by knowing that this behaviour is due to a specific dementia, with notable presentations and physical characteristics and so on and so forth. You LIVE it, hour by hour, day by day, week after week and onwards. Thus we come to understand that every single case is different. Each one with it's own story and an unpredictable one at that. The ending we know will come, such is the nature of this disease. But the journey can be long and hard and suck the very life-force from your body and sometimes destroy the will to live. All of this sounds perhaps melodramatic, unreal, over emotional or just way beyond the perception of what we term dementia as a given, general term and which conjures up a more accessible interpretation for those who have never actually " been there ". So the question of " blanket statements " here must be seen in the light of actual, day to day, hands on CARE and the ACTUALITY of that relationship with this extraordinary disease of the mind borne in another - the one you care for, pray for, weep for and love unconditionally.
 

Starbright

Registered User
Apr 8, 2018
495
That is profound @Hazara8 you have put into words as I never could, the feeling and yes heartbreak of someone who cares 24/7 and there are many many here on TP....
Thank you A x
 

Hazara8

Registered User
Apr 6, 2015
416
That is profound @Hazara8 you have put into words as I never could, the feeling and yes heartbreak of someone who cares 24/7 and there are many many here on TP....
Thank you A x
My warmest wishes, Starbright. We are members of a special " community " here, because we have no agenda, nor personal promotion in any way. Simply the expression of a " truth" which we live or have lived and which in so many cases, is life- changing, but alas in a way which often breaks hearts by sheer nature of its behaviour and the manner in which it claims a hitherto "normal " and healthy life. Thank you.
 

Palerider

Registered User
Aug 9, 2015
1,426
North West
Simply the expression of a " truth" which we live or have lived and which in so many cases, is life- changing
I think that is a very pertinent scentence and one that hits at the very heart of the matter -truth, and this forum is many truths -a testimony to the reality of dementia in all its forms and ways
 

Helly68

Registered User
Mar 12, 2018
557
With the photos, especially old black and white ones, we made cheap scans of originals and put them in cheap frames, keeping the originals safe. That way she had them in her room but they could easily be replaced is they went missing.

It is very difficult when those involved don't agree. Would it be possible to take photo albums when you visit so she can see them but they don't have to be kept there?
 

Sirena

Registered User
Feb 27, 2018
2,133
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.
I don't remember seeing advice on these forums to remove photos or mementos - unless they are causing obvious distress to the PWD (person with dementia). My mother has been in a CH for two years and has about a dozen photos of family and her pets. She doesn't recognise anyone in the photos now - but they don't bother her, so they stay there.

I can see the reason for removing a phone though, if it results in the PWD constantly calling relatives rather than moving on to relying on the carers. My mother lost the ability to make phone calls when she was still living at home so the issue didn't arise. If someone rings to speak to her, the CH have a dedicated residents' mobile phone which they hand to her.

I bought my mother a TV for her room, because she always had the TV on when she was at home. But as far as I know it has never been switched on. There is a TV in the lounge which is usually on but she ignores it, she can't follow what's happening. The CH also play background music a lot of the time and she enjoys that. (But everyone is different - one lady at the CH can't stand music playing and calls it 'that noise'. There is no one thing which works for everyone.)

When people on TP make suggestions, whether it's about phones, visiting, photos, outings, it is always with the aim of minimising distress and agitation for the PWD. I have never seen 'blanket advice' given, suggestions are given in reaction to an issue posted by a relative. Unfortunately sometimes there isn't a best option, just a least worst.

I have found the advice on these forums invaluable. In my experience, many professionals do not have the 'lived experience' of caring for someone with dementia and are overly reliant on theory rather than practice.
 

Mothers daughter

Registered User
Feb 4, 2020
16
Hello everyone
We definitely all seem to be going through similar but sometimes so different experiences.
My Mum is usually very social but her short to mid term memory is non existent. She is usually pleased to see family and thankfully still recognizes most of us.
However I have noticed recently that she is more agitated when I call in on my way home from work. This could be sundowners, tiredness, boredom or a progression of the dementia. What I have learnt is to take each day as it comes and try new things to see how they go.
TV in her room - she doesn't remember how to use it and if it is turned on she tends to not want to move from her room - making her more isolated.
Radio - she enjoys this when it is turned on for her but she hates the "chatty" stations.
Photos - we have a few photos in frames of family that she does remember and we have a memory box that we sit with her to look through and reminisce.
We are trying new things with her now - I've just ordered a pom pom kit to make Easter chicks that we can sit and do together and I am looking for easy to read short books that I can read to her or she can try herself.
What I do know is that she participates in activities in the daytime but has no recollection of them in the evening but I do know that she enjoys "the moment".
"The moment" is our key to ensure she is happy in the times we are with her so that we can have quality time as much as possible
 

millalm

Registered User
Oct 9, 2019
69
@DeltaT Sorry to be harsh, but reading your posts I have to say you sound very angry and judgemental of the responses people have posted in reply to your original message. It seems that you are looking for a 'How To' for Dementia, a tried and proven guide for what to do for your PWD.

What everyone here is trying to tell you is that in every single person with dementia the manifestations of this cruelest of diseases develop differently. The saying 'When you've met ONE person with Dementia , you've met ONE person with Dementia' rings true. There may be many common behaviours depending on the type of dementia , eg thinking people are stealing from you, imagining people are trying to kill you, confusing relationships of loved ones, obsessively checking doorlocks etc. but even so the triggers of certain behaviours can be consistent in an individual or change at the drop of a hat. For example Sundowning is just a general term to describe a common phenomenon in many PWD who experience 'odd' or 'unusual ' behaviour at the same time-ish each day-ish.

What works for you may not work for your brother so each person needs to work out their own routine with her. I would suggest that instead of googling,looking for the results of studies and asking for 'expert' or other opinions you simply learn to follow your instinct. You have said that you did most of her caring so you are going to have a head start because you know Mum so well. I call it my 'little inner voice' and the philosophy behind the daily exercise of visiting Mum is called Trial and Error. I have been doing this for 7 years, the last 3 while she lives in a Long Term Care home (nursing home in UK), and I can tell you every minute of every visit is different from the day before.

I would suggest that when you are visiting you try out different things with your Mum that you think she might like, a photo album you share and if that seems to be a positive thing speak to your brother and maybe hang a picture or two to see how that goes.( I have a picture of every family member in Ikea frame with names written in large black print so that even if Mum no longer sees or recognizes the faces, others can engage her if they see it is a positive thing). Landscape pictures of holiday or familiar places can be very appealing , but maybe not animals or action pictures. Try listening to music she used to like and see if there is a positive response, or try different kinds of music. If it goes over well make a 'Mum" CD and have a simple cd player available in her room. If you think it will be a good thing for your Mum to speak to you arrange to call at the same time each day when you are not there, just try to choose a time when the staff are the least busy and it will become part of the routine. The same with tv, reading books to her, using audio books or birdwatching. Applying lotion to dry skin, giving her a hand massage and applying her perfumed body cream all the while talking brightly has allowed me to keep a connection between my Mum and I. Even if she doesn't know who it is, and can't speak to me she has the pleasure of human touch and I have the pleasure of feeling close to her . My daughter paints her nails in a bright pink that she always used to wear, even though the application is sometimes like a comic routine lol

As @Louise7 says it can't hurt to brighten up a room with throw pillow, blankets, and greenery unless your Mum is bothered by them. Be prepared that you may have to change them up or out as time goes by. Be willing to consider any ideas suggested by other carers or care workers that you think might appeal to your Mum , the worst that can happen is that it won't be a success, but you will have made the effort!

if and when it seems that any or all of the things you try no longer matter to your Mum , you can keep looking for new ideas and eventually you may decide there is nothing left to try. Either way , by then you will have your own experience ' Living with Dementia' and will hopefully be willing to share with other members of TP who might be at the same stage you are currently at. It's a journey I wouldn't wish on anyone, but having the wealth of the experienced carers you will find here makes the journey less lonely.

Best of Luck.