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Dementia’s journey

Dutchman

Registered User
May 26, 2017
827
Devon
I’ll let you know how it goes tomorrow

And thanks everyone for the kind and thoughtful comments.

I was thinking today about this whole dementia business and others attitudes towards the condition. If, for instance, dementia type symptoms were brought about by, say, a brain tumour ( a cancer) then there would a sympathy and understanding that is lacking in society about dementia. After all, cancer can happen to anyone, at any age and does. Dementia has associations with getting old ( unless it’s early onset) and is somehow a bit shabby. Is it less worthy, less deserving of consideration- of course not, but i feel that those outside of any experience of dementia have little or no understanding of the trauma we carers are going through. Cancer is clearer to understand, dementia not so much.

Dementia is insidious and, for Bridget, started to appear gradually in uncharacteristic shows of temper. Oh, and the rest as you all know by now.

I mainly forget the bad times now and miss the good times. That’s what makes it so upsetting

Bless you all

Peter






peter
 

Dutchman

Registered User
May 26, 2017
827
Devon
hi . Well i went to the home at a booked time of 4 pm so that Bridget could come outside with the manager who stood between us just in case Bridget wanted to hold my hand..

Initially Bridget didn’t want to come out but with a bit persuasive nudging came out into the grounds. Of course i had my mask on so the confusion of who i was was heightened but i saw how good they treat her, how kind to keep her warm, and after a little walk i’d had enough. if i cant hold her tight then i’m upset. Then again, if i could hope her tight i wouldn’t want to let her go. I suspect she wouldn’t understand anyway and wouldn’t want me to hold her for very long.
Had a little sleep on the sofa this afternoon and really thought when i opened my eyes that Bridge would be kneeling down, face close to mine, smiling saying “ Hello sweetie. “ God this dementia and heartbreak and being on your own really mucks around with your mind.

But, when she was here towards the end last year she wasn’t any company, no softness or love. So what’s different? We hanker after what was good and want to get it back. Natural and normal.
 

Stacey sue

Registered User
Jan 24, 2020
72
I could have written that,I went to see Dave through the glass door,first time in a few weeks because the doors didn’t work? When Dave saw me and my daughter he just stood there and cried! He wanted the door open, he tried the door and kicked it! Was so sad ,almost cruel,I don’t know if this is right to visit like this?? I forget how bad it was, Just want the original back. Glad I am not alone and others on here understand. SSue.x
 

Dutchman

Registered User
May 26, 2017
827
Devon
Stacey Sue. i’m so so sorry this happened to you. Its a cruel dilemma isn’t it, not knowing if it’s good for you or your Dave to visit the home. At least Bridget doesn’t get upset when she sees me, that’s down to me. I was asked by someone last week if i go out of duty or love. I love her to bits as you all know but honestly, really honestly it’s a mixture of duty and obligation. She gets something from my visit if only fleetingly but me, well, i'm hanging on to what ever is left of my old Bridget and if i didn’t go what would that say about my feelings.

Sue, these feelings are so powerful aren’t they, and very mixed up. No wonder we crack under the pressure of this dementia journey and feel so alone with these emotions.

Virtual huge hug and loads of understanding

peterxx
 

Stacey sue

Registered User
Jan 24, 2020
72
Thankyou Peter, That means a lot, I go to visit because I love him although the original? And I feel enormous guilt for him being there. I feel I have let him down by not keeping him at home. I so easily forget what he was like, It really does mess with your head. Virtual hugs back to you. xx
 

Dutchman

Registered User
May 26, 2017
827
Devon
i too feel guilt but i try to rationalise it by questioning my ability to look after Bridget as she was and how she is now. Sure, she’s better now, but it’s taken a whole load of carers to get her to this place.

As you’ve probably experienced dementia happens over time. And then we hit a spot where we cannot cope anymore. Away from all the nastiest and upset we think we could just about cope and we feel guilty. But i know i wouldn’t stand a chance. Not that it hasn’t crossed my mind to have her back here but deep down i know it wouldn’t work. I’ve said this before but there is nothing i can do that would add benefit to her life. If there was i’d move heaven and earth to do it.

I believe you may also feel the same. You’re one person trying to fix the unfixable and we beat ourselves up because of it.

lots of love

peter
 

Stacey sue

Registered User
Jan 24, 2020
72
Thankyou , we are in that same mind set, It helps enormously to have someone writing down the same thoughts. I just need to be able to spend time with him to get in my head how he is now,and stop living in the past. Thanks again. SS. X
 

Dutchman

Registered User
May 26, 2017
827
Devon
Hi everyone. I’m ironing and crying. How about that for a combination!!. I think i’m ok, getting on with things and then, suddenly out of the blue, my stomach lurches with the thought of me being alone and Bridget not here. Its almost like just getting out of the way of a speeding car, a burst of adrenaline that reminds me that my life is so different. I’ve given myself permission to sit and write to you all.

I want to quote from a book, if you’ll allow me, by Megan Devine, called Its “ok that you’re not Ok”. At the end she says that” Grief is already a lonely experience. It rearranges your address book” “ It feels like you’ve lost the entire world right along with the person who you’ve lost”

”We all need a place where we can tell the truth about how hard it is” And that’s us on TP where no one judges, no one says you should or ought because we all know how emotions are all over the place and cannot be rationalised.

But we are alone really. She says “ you are alone in your grief. You alone carry the knowledge of how grief lives in you. You alone know all the details, the subtlety and nuance of what’s happened and what’s been lost. You alone know how deeply your life has been changed. No one can face this for you”

But, here’s the thing that i find has really helped as Devine says “ Everyone is welcome in a community of loss. We know we’re alone , and we’re not alone in that. We hear each other. It doesn’t fix anything, but somehow it makes it different “

She finishes by saying” i know it’s exhausting. All of it is exhausting. And finding your loss community ( my words) is the one thing i can guarantee will make this easier for you”.

All true, for me at least, and without all you guys on TP, whatever our story, i don’t know if I would have survived. Sometimes i feel i don’t want to survive but somehow i get through the day.

Bless you all

peter xx
 

jennifer1967

Registered User
Mar 15, 2020
965
Southampton
Hi everyone. I’m ironing and crying. How about that for a combination!!. I think i’m ok, getting on with things and then, suddenly out of the blue, my stomach lurches with the thought of me being alone and Bridget not here. Its almost like just getting out of the way of a speeding car, a burst of adrenaline that reminds me that my life is so different. I’ve given myself permission to sit and write to you all.

I want to quote from a book, if you’ll allow me, by Megan Devine, called Its “ok that you’re not Ok”. At the end she says that” Grief is already a lonely experience. It rearranges your address book” “ It feels like you’ve lost the entire world right along with the person who you’ve lost”

”We all need a place where we can tell the truth about how hard it is” And that’s us on TP where no one judges, no one says you should or ought because we all know how emotions are all over the place and cannot be rationalised.

But we are alone really. She says “ you are alone in your grief. You alone carry the knowledge of how grief lives in you. You alone know all the details, the subtlety and nuance of what’s happened and what’s been lost. You alone know how deeply your life has been changed. No one can face this for you”

But, here’s the thing that i find has really helped as Devine says “ Everyone is welcome in a community of loss. We know we’re alone , and we’re not alone in that. We hear each other. It doesn’t fix anything, but somehow it makes it different “

She finishes by saying” i know it’s exhausting. All of it is exhausting. And finding your loss community ( my words) is the one thing i can guarantee will make this easier for you”.

All true, for me at least, and without all you guys on TP, whatever our story, i don’t know if I would have survived. Sometimes i feel i don’t want to survive but somehow i get through the day.

Bless you all

peter xx
blow the ironing if you need to cry you need to cry. im sorry you are going through all this. you will survive and come out stronger and are already helping by your experiences
 

Dutchman

Registered User
May 26, 2017
827
Devon
i’m going to write to you all about a very tricky subject, but nevertheless, one that has been on my mind over the last few weeks.

It came about because Bridget had caught her finger in her door and it needed a bandage. The home informed me and at that point i was satisfied, thought no more about it. But when i phoned the next day a carer said that it happened when one of the male staff had got her up in the morning and when she caught her finger and cried out he probably gave her a hug as comfort. Quite a natural thing to do on the surface but you can see my dilemma i think.

Im here, she’s there and i have no way of checking on inappropriate actions, either one offs or ongoing. I understand that all staff are vetted, have qualifications and in general i’m very pleased with the way she’s treated. But there’s a but. And I have a limited way of approaching this of course without making it official and if there is no cause for alarm then what? But, my concern remains.

We put all our trust into the hands of the staff. If I asked she’d be given her personal care by female staff only they would wonder why and anyway they wouldn’t have enough staff to go round and Bridget would be waiting for ages. At the moment i have a good relationship with the staff and wouldn’t want to jeopardise that.

It could be something or nothing.

Has anyone, with all our experience, had misgivings like this?

Peter
 

Jaded'n'faded

Registered User
Jan 23, 2019
953
High Peak
Yes, sort of. It wasn't a male/female thing but did involve unwanted hugging.

Like me, my mother hated hugs or any close physical contact. Hugs have never been a part of my life and it makes me very uncomfortable if I'm forced into one. Many of the carers at mum's CH were - I thought - overly touchy-feely and it made me uncomfortable. But one lady in particular ( an agency temp) took it to a whole new level. I was visiting once and she was with mum in the corridor as I arrived. She introduced herself and said how much she loved B - my mum. I'd never seen this woman before but she proceeded to give mum a huge bear hug and kissed her face several times. I could see my mum's face (she couldn't) and mum was cringing and angry with gritted teeth, trying to pull away from the woman but was unable to do so. I said 'I don't think mum likes that. Please don't kiss or hug her, she doesn't like it.'
'Course she does, we're best friends aren't we B?' said the lady - and did it again!

I took mum off to her room and calmed her down. She was saying 'I hate her!' and various other nasty things relating to the woman's race and girth.

I'm afraid I had to complain to the manager. The woman was clearly very friendly and meant well, but not everyone likes that sort of physical contact. Fortunately I never saw her there again.
 

jennifer1967

Registered User
Mar 15, 2020
965
Southampton
not everyone is comfortable with hugs, im not unless i know my friends for yearsboth almost 30yrs plus and still dont know how to act. is it in her care plan? has it been highlighted? personal space is so important especially with dementia. they dont know family history and their children may not know either so asking in family might not be appropriate.
 

jennifer1967

Registered User
Mar 15, 2020
965
Southampton
i’m going to write to you all about a very tricky subject, but nevertheless, one that has been on my mind over the last few weeks.

It came about because Bridget had caught her finger in her door and it needed a bandage. The home informed me and at that point i was satisfied, thought no more about it. But when i phoned the next day a carer said that it happened when one of the male staff had got her up in the morning and when she caught her finger and cried out he probably gave her a hug as comfort. Quite a natural thing to do on the surface but you can see my dilemma i think.

Im here, she’s there and i have no way of checking on inappropriate actions, either one offs or ongoing. I understand that all staff are vetted, have qualifications and in general i’m very pleased with the way she’s treated. But there’s a but. And I have a limited way of approaching this of course without making it official and if there is no cause for alarm then what? But, my concern remains.

We put all our trust into the hands of the staff. If I asked she’d be given her personal care by female staff only they would wonder why and anyway they wouldn’t have enough staff to go round and Bridget would be waiting for ages. At the moment i have a good relationship with the staff and wouldn’t want to jeopardise that.

It could be something or nothing.

Has anyone, with all our experience, had misgivings like this?

Peter
you can request a female carer anyway she wont be left that male carer will go somewhere freeing up a female. sometimes its better not to think about it. i did work in a care home and we did have female carers only residents and that shouldnt prejudice and not let her wait longer because of it.i did both and now when im assisting my husband it feels very weird. i think just look forward to your visit and unless causing problems for her dont think about it too much.
 

lemonbalm

Registered User
May 21, 2018
710
I was a bit horrified when my mum's care home took on male staff and assumed that mum would not want them to carry out personal care. It turned out that she didn't mind at all and sometimes preferred it. I am not from a touchy- feely family but the carers seem mainly very affectionate with the residents. The main attraction of the home when I first went to look at it was the warmth with which the residents were treated. My mum can be very agitated and shout, scream or cry (and scratch). I am grateful if a carer can make her feel better with a cuddle, male or female. If you are happy with the care in general, I would let it go.
 

DianeW

Registered User
Sep 10, 2013
762
Lytham St Annes
I’m sorry but I have had relatives in care homes and didn’t give it a thought that the care being provided was anything but professional and respectful regardless of gender.....I really didn’t.

My husband is a carer and he has worked in homes were some residents only want female carers, and that’s absolutely fine and their choice, but there are times when a resident will have to wait a bit longer, for example his home had 4 night staff, as some needed 2 carers there were times when a resident had to wait a little bit until the other female carer had finished assisting elsewhere, it’s not a long wait but a wait never the less.

Where he works now is a much smaller home and 2 night staff on duty, no residents mind male or female staff, but there is always a male and female on duty.

I think it’s very difficult and sometimes we just have to trust, just like we do when we hand our children over to nursery and schools.....you have to trust but at the same time be aware and raise any genuine concerns with appropriate people.

Please don’t dwell on this unlikely possibility for Bridget, unless you have firm suspicions and I haven’t read that you have, only that it’s a possibility. Every aspect of life is a risk, please don’t worry about something that hasn’t happened.
 
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Dutchman

Registered User
May 26, 2017
827
Devon
Thanks everyone for that reassurance.

I don’t know what to say today that I haven’t said before but i know for a fact that i keep finding things to beat myself up with and this time it’s a photo taken on Friday of Bridget outside with me and a carer going for a little walk. Bridget looks so, well, lost and bemused which is dementia all over. Covid stops me even holding her hand. Here i go again, welling up.

I’m thinking of getting a bike to get myself out and about for some exercise. Again i feel an element of meanness doing this as Bridget leads such a simple life now with nothing spent on her to give her pleasure apart from the astronomical amount of care home costs. Almost everything is tinged with some guilt that takes away some of the pleasure. Damn!

Anyway, enough said.

peter
 

jennifer1967

Registered User
Mar 15, 2020
965
Southampton
thats not a bad idea. it was lift your spirits and give you a different scene. dont feel guilty, i dont suppose bridget can ride a bike so wouldnt need one. my husband who vascular dementia actually brought us both a second bike as he thought it would be nice to go out together. the bikes laid up all winter and then he decided he was too scared to ride it so he sold his, ive still kept mine. not sure if i will be able to use it now but i like riding so kept it.bridget is well looked after and getting simple pleasure and seeing you even if she doesnt recognise you as her husband, its still time spent with her and the things you take to her. look forward to hearing of your adventures on your bike
 

Hazara8

Registered User
Apr 6, 2015
539
Apprehension is not uncommon in respect of the speculation of ongoing welfare of a loved one living with a dementia. Their vulnerability alone is tantamount to that powerful sense of frustration when no longer able to afford direct comfort and care as was the case whilst at home. The key really lies in the ethic and regime of the Care being now given. It should be administering ' person-centred ' care in essence, accepting the parameters or current restraints in play. I have personally had no hesitation in reporting incidents of poor care or plain disregard for a dementia resident as a fundamental duty. Granted, as a volunteer l was in situ for at least six hours a day and thus very close to the daily activities. However , the essential application of a person-centred care plan means that the individual concerned - however compromised - holds exactly the same human rights as they did prior to the illness. Their value as a human being does NOT change. Also, each and every person holds a personally unique story or history. They have specific tastes, specific traits, have specific ailments physical or psychological and a background which is fundamental to them alone and which cannot be simply ignored. Added to this has to be probably the most meaningful element in the whole " care" package - that of EMPATHY. That is not sentiment nor just basic continuity of basic care as say nursing a broken arm. It is the very real and absolute total awareness of the REALITY of the dementia loved one as being as authentic as your own, despite its elusive or unpredictable nature - the world that they inhabit is REAL and to contradict that in any way is detrimental and potentially cruel.
Once the true understanding of a person-centred caring regime becomes " real" and not a fanciful projection, then so much of what constitutes anxiety, uncertainty, the living " grief " which erodes one's health and mental balance and the function of professional CARE being endemic and the role of the Carer seen as paramount and of immense value, then so much of the apprehension and heartache will be dissipated or even quelled. That leaves one to observe oneself very carefully and to perhaps empathize with the actuality of a relationship which is governed by dementia and to see where one's personal needs or wants clash with what is now a new "reality " - knowing that despite everything, the loved one in question remains the human being and the person one has known in essence. The intruder being dementia is just that and it is permanent. So you don't challenge it nor ignore it. But you learn to understand it because the loved one it inhabits cannot. That alone conveys both the ethic of comfort and ultimately of love.
 

jennifer1967

Registered User
Mar 15, 2020
965
Southampton
person centred care is like the resident being empowered and having choice to what ever level is appropriate to them. clothes, food, going to bed time when they want to get up to a degree,and when they are unable to make choice speaking, you can show them clothes, pictures of food, there are so many tools available and you get to know what works for each resident and talking to them gets some kind of reaction sometimes
 

Jaded'n'faded

Registered User
Jan 23, 2019
953
High Peak
Apprehension is not uncommon in respect of the speculation of ongoing welfare of a loved one living with a dementia. Their vulnerability alone is tantamount to that powerful sense of frustration when no longer able to afford direct comfort and care as was the case whilst at home. The key really lies in the ethic and regime of the Care being now given. It should be administering ' person-centred ' care in essence, accepting the parameters or current restraints in play. I have personally had no hesitation in reporting incidents of poor care or plain disregard for a dementia resident as a fundamental duty. Granted, as a volunteer l was in situ for at least six hours a day and thus very close to the daily activities. However , the essential application of a person-centred care plan means that the individual concerned - however compromised - holds exactly the same human rights as they did prior to the illness. Their value as a human being does NOT change. Also, each and every person holds a personally unique story or history. They have specific tastes, specific traits, have specific ailments physical or psychological and a background which is fundamental to them alone and which cannot be simply ignored. Added to this has to be probably the most meaningful element in the whole " care" package - that of EMPATHY. That is not sentiment nor just basic continuity of basic care as say nursing a broken arm. It is the very real and absolute total awareness of the REALITY of the dementia loved one as being as authentic as your own, despite its elusive or unpredictable nature - the world that they inhabit is REAL and to contradict that in any way is detrimental and potentially cruel.
Once the true understanding of a person-centred caring regime becomes " real" and not a fanciful projection, then so much of what constitutes anxiety, uncertainty, the living " grief " which erodes one's health and mental balance and the function of professional CARE being endemic and the role of the Carer seen as paramount and of immense value, then so much of the apprehension and heartache will be dissipated or even quelled. That leaves one to observe oneself very carefully and to perhaps empathize with the actuality of a relationship which is governed by dementia and to see where one's personal needs or wants clash with what is now a new "reality " - knowing that despite everything, the loved one in question remains the human being and the person one has known in essence. The intruder being dementia is just that and it is permanent. So you don't challenge it nor ignore it. But you learn to understand it because the loved one it inhabits cannot. That alone conveys both the ethic of comfort and ultimately of love.
I think you're asking an awful lot of people working in care homes. They are often young (with little experience of life) and although enthusiastic are often poorly trained. And they work for minimum wage.

Not all would even understand what you are saying. Many see their jobs as feeding, changing and chatting to their residents and that's as far as it goes. The level of empathy and understanding you advocate is - in my humble opinion - totally unrealistic. Not least it would require carers to spend one-to-one time with a client over a long period of time and again that is often not possible.

In an ideal world maybe. But this isn't.