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Dementia’s journey

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
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.
they have a induction and that should be part of it. person-centred care is straightforward in my post. get 2 dresses etc out of wardrobe they may be able to point. always have a choice of food point at 2 not a whole menu. too many options will confuse.walk in room do you want to get up now and get them up. it takes seconds. i think hazara8 made it way too complicated and i got lost a long way from the end and i was doing it for 9 yrs and trained. its not complicated and just chat really and looking at expressions etc takes seconds while you talk to them and yes i was on minimum wage
 

Hazara8

Registered User
Apr 6, 2015
536
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.
You are absolutely correct. I see this first hand and your words picture a status quo which is generally so. But when l have seen, first hand, the person-centred care in practice, it has been remarkable. I think l was expressing what is perhaps certainly challenging, but one would dearly hope not "unrealistic ". But you hold a mirror up to what is in place for the most part in Care. A very sad testimony to the perception of those who might enable a real transformation. On a personal note, l recently spent one and a half years tending to a resident who rarely left their room. This time embraced everything from lenghty moments of silence, lengthy moments of gentle nurturing, moments dealing with confusion, stress, infection based agitation, fathoming time of day, all manner of interaction which accompanied the progress of Alzheimer's. No Care Worker could possibly have done this in the Home in question. We both sing from the same hymn sheet l feel. At the end of the day when an aged person afflicted with this uncompromising disease sits hunched and distraught and bewildered within the confines of a new home, a strange environment and you take hold of their hand and remain so for an hour or so because you simply have to do so, then the notion of time or other duties becomes irrelevant at that moment, because you hold a life on your hand. Adapting to that is where we need to be, because the hand being held might one day be your own.

With warm wishes in accord.
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
You are absolutely correct. I see this first hand and your words picture a status quo which is generally so. But when l have seen, first hand, the person-centred care in practice, it has been remarkable. I think l was expressing what is perhaps certainly challenging, but one would dearly hope not "unrealistic ". But you hold a mirror up to what is in place for the most part in Care. A very sad testimony to the perception of those who might enable a real transformation. On a personal note, l recently spent one and a half years tending to a resident who rarely left their room. This time embraced everything from lenghty moments of silence, lengthy moments of gentle nurturing, moments dealing with confusion, stress, infection based agitation, fathoming time of day, all manner of interaction which accompanied the progress of Alzheimer's. No Care Worker could possibly have done this in the Home in question. We both sing from the same hymn sheet l feel. At the end of the day when an aged person afflicted with this uncompromising disease sits hunched and distraught and bewildered within the confines of a new home, a strange environment and you take hold of their hand and remain so for an hour or so because you simply have to do so, then the notion of time or other duties becomes irrelevant at that moment, because you hold a life on your hand. Adapting to that is where we need to be, because the hand being held might one day be your own.

With warm wishes in accord.
i know i should have done a sleep duty which they turned into an awake duty so that i could stay at the bedside of a dying resident and make sure they were not in pain or distress if i saw that i had to call district nurse straight away for morphine . it was a little wiggle and restless movement so i knew they were in pain phoned straight away . they came out and i sat at her bedside all night turning and everything. they died the next night but i was glad i was there sitting with her so they were never alone. they went peacefully in their bed with carers present so not on their own.
 

Hazara8

Registered User
Apr 6, 2015
536
i know i should have done a sleep duty which they turned into an awake duty so that i could stay at the bedside of a dying resident and make sure they were not in pain or distress if i saw that i had to call district nurse straight away for morphine . it was a little wiggle and restless movement so i knew they were in pain phoned straight away . they came out and i sat at her bedside all night turning and everything. they died the next night but i was glad i was there sitting with her so they were never alone. they went peacefully in their bed with carers present so not on their own.
So kind of you to share that.
It epitomizes the ultimate in all of this, the passing of a life which we dearly trust is devoid of pain or agitation whilst another is keeping vigil at the bedside. That same sense of something very special taking place in which you are a part is also the imperative during the living moments. Not at all easy in practice.
Thank you once again.
 

Dutchman

Registered User
May 26, 2017
821
Devon
i’m writing this from the quiet of my small bedroom, a room I choose to go to after Bridget had decided to get up at all times of the night back in August last year and i wasn’t getting enough sleep. I still remain in this bedroom unable to face our main bed that has remained empty since she left in late August. Too many memories of being close in the good times.

Life had been full of anxiety, stress and misery then. Bridget had been continually getting up at random times in the night fully dressed ( she never took her clothes off even in bed) and wanting to go somewhere. Times got worse and worse. Eventually SS arranged for a night sitter to be downstairs for one night so i could attempt some sleep.

This is what keeps coming back to me time and time again. That night, the night before the next morning when she went into the home, Bridget had gone to our bed early and the nurse arrived at 7 pm . I went to bed and closed the bedroom door and placed a chair against it to stop it being opened. Why would I do that? Now I think it was a mean and selfish thing to do. All is quiet until I hear Bridget softly trying my bedroom door handle wanting to come in. I stay quiet hoping she’ll go away, which she did eventually.

Next day, of course, she gets taken away to the home. Oh how i’ve always wished i’d have opened my door just to comfort her. She must have been in such pain and misery and i didn’t have the strength to comfort her one more time. I know i could find all sorts of excuses but i bitterly regret my inaction.

Dementia really does find our weak places.

Love to you all

Peter
 

DianeW

Registered User
Sep 10, 2013
762
Lytham St Annes
Peter......we all have regrets in life, and can search for things to feel bad about.

You do need to stop looking for things to punish yourself with, your analysing everything in search of negative things to beat yourself up with, when in reality you have nothing at all to beat yourself up with, it has to stop...

You cared for your lovely Bridget and I am sure she would have done the same for you, dementia took her from you, yes she is still there but it’s not the way you hoped and planned for, and that is so very sad, but we can’t change what life gives us...

Have you spoken to your Dr yet, as I honestly do think you need help, you have been in such a dark place now for too long, and it’s making you ill.

If the roles were reversed would you want Bridget feeling as you do, and being so tormented........I think the reply would be 100% NOT.

Peter, allowing yourself to have good days and the acceptance of your new normal ......does not mean you are forgetting or in any way a reflection on your deep feelings and love for Bridget, those feelings will never change, but for your own health you need to find acceptance.
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
you have cared for bridget so well for so long and continue to love and adore her, that wont change and it sounds like its deepened. you couldnt go on caring meeting her needs and you love her so much that you found somewhere nice to meet her care needs. you still love her so much in visiting her and you are still caring. its hard when its your partner for so many years, im finding it hard watching him disappear as the man i married but adapting to the man he is now. you couldnt do anymore so stopped blaming yourself and finding faults in your self. get that bike and get out and see a different picture. stop judging yourself remember you have done your best and are still doing your best, caring and loving bridget unconditionally. thats priceless
 

Dutchman

Registered User
May 26, 2017
821
Devon
Thanks guys. Your comments mean such a lot to me. I’m slowly coming out of this even with the regression now and again which i’m sure i’m allowed. i also believe now that whatever i feel or do cannot be judged by those that haven’t gone through or are going this as , hey, what do they know.

Please accept i will fall backwards from time to time as we all do. Thanks for the considered support, your time and effort you’re putting in to comfort me. I wish i could respond in kind but at the moment that comes only now again but there will come a day when i feel stronger.

I get my new bike tomorrow. Exciting. Apparently there’s a world shortage of bikes due to Covid so i’m lucky to have found a stockiest. They had just two left. I’ll try not to fall off. When i was in my early twenties i cycled every day to work 30 miles all round. Thought nothing of it.

God bless

Peter
 

DianeW

Registered User
Sep 10, 2013
762
Lytham St Annes
Peter if you fall off, I’ll send you some stabilisers - hahaha 🤣

No seriously...enjoy your bike.

Just an afterthought and I can only speak for my posts, but I hope you don’t feel like I am in any way undermining the grief and loss you are going through, that isn’t my intention at all.

All I am hopeful of is that you allow acceptance in and start to recover.

Obviously your going to have down days but when you have more down days than good days and are unable to escape the grief your enveloped in....you need some help, but it sounds like you are feeling better and I’m thrilled about that.

Now keep a tight hold and don’t fall off that bike.......enjoy x
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
Thanks guys. Your comments mean such a lot to me. I’m slowly coming out of this even with the regression now and again which i’m sure i’m allowed. i also believe now that whatever i feel or do cannot be judged by those that haven’t gone through or are going this as , hey, what do they know.

Please accept i will fall backwards from time to time as we all do. Thanks for the considered support, your time and effort you’re putting in to comfort me. I wish i could respond in kind but at the moment that comes only now again but there will come a day when i feel stronger.

I get my new bike tomorrow. Exciting. Apparently there’s a world shortage of bikes due to Covid so i’m lucky to have found a stockiest. They had just two left. I’ll try not to fall off. When i was in my early twenties i cycled every day to work 30 miles all round. Thought nothing of it.

God bless

Peter
course its acceptable and understandable you are not being judged but trying to lift your spirits just a little bit so you cope with your visits to bridget and take them as they are. but do things for you too as if you stay down too long, it will take you a long time to get back up again. which is a vicious circle. enjoy your bike although its pouring with rain here,you might add something to the visiting and talk to her about your bike even if she may not understand there will something new to talk about. you will have those days but dont let it take over is what im saying. wear a helmet!
 

Sarasa

Registered User
Apr 13, 2018
1,846
Enjoy the cycling. I think any form of exercise is a good mood lifter, and with a bike you should be able to do loads of exploring.
 

Dutchman

Registered User
May 26, 2017
821
Devon
Enjoy your biking Peter......I did not realize there is a shortage of bicycles. I have a couple in the garage I guess I should put them back out into the world.
i put an old bike up for sale on Market Place and had over 800 views and sold it in 24 hours
 

Jaded'n'faded

Registered User
Jan 23, 2019
947
High Peak
The bike sounds an excellent idea, Peter. Do you have good cycle routes near you? I don't know your location so don't know if you are rural or in a town. Hope you can find good places to ride, maybe with a nice pub at the halfway point...
 

Dutchman

Registered User
May 26, 2017
821
Devon
yes, i’m in Totnes , Devon but it’s a bit hard here finding a route that doesn’t involve going on to main roads. i might need to take the bike out and then start. I’m getting some National Cycle Route maps.

Before dementia took its evil hold Bridget and me used to ride around the New Forest and then more local routes along out river Dart. We even went to Holland where it’s part of their tradition to cycle everywhere. But then she couldn’t keep her balance. One more thing she couldn’t do and she was very disappointed.

I know i’ve said this many times before, and you all must be getting sick and tired of it by now, but i’m going to see Bridget tomorrow and i feel it’s a required duty mixed in with love. Does that sound awkward? I put her there and i feel i should maintain my regular visits even if they’re fleeting and sometimes upset me. I suppose there’s always that tiny bit of me that thinks she’ll miss me if i don’t go regularly. That’s just me wanting to hold on to what remains of our relationship.

Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,962
Kent
I used to visit my husband every alternate day and our son visited at the weekend.

I went because I wanted to see him but also because I needed to make sure he was being looked after properly.

I included other residents in my visits to help my husband feel included in a family setting, so if I took fruits or treats I took for other residents too, those who were sitting with him in the sitting room, once I had cleared it with staff beforehand.

If there were any activities going on, I joined in. My husband wouldn`t join in with anything but I hoped my joining in might encourage him. [It never did but I kept hoping]

There were many more reasons for visiting than just to see my husband. The staff knew me well and I knew them. It helped build a level of trust which was the most important of all.

It also helped those residents who had no visitors.

I don`t know how I would have managed during this pandemic. I know my husband would not have been able to accept seeing me wearing a face covering and my heart goes out to all of you in this situation now.
 

Stacey sue

Registered User
Jan 24, 2020
71
I visit to see him 15 mins through a window,It is the hardest thing I have ever done.He always tries to open the door,I don’t know if this is cruel for him, or he gets anything from it? This really is Groundhog Day, !! such a miserable time. . SSue.
 

Dutchman

Registered User
May 26, 2017
821
Devon
This Covid is really testing our boundaries of emotions isn’t it. I’m going this morning with the usual flowers and treats. She won’t stay at the window for any more than 5 mins and then she loses concentration, turns round and walks away. I’m told by the home manager that she loves my flowers and treats and for that i’m satisfied.

On my previous visit where we walked outside she turned and said to me “do you have a car“. I said no i came by bus. Lies and subterfuge again. I still believe she would like to ride away from the home and that upsets me. I’d like to believe she’s settled but sometimes i have my doubts. Here we go again, using my imagination to get myself upset again. Grrrrrr!

I laid in bed last night thinking when Bridget’s in bed she has staff on hand through the night there just in case. It wouldn’t work if she’s here as i’d get no sleep. That’s some resolution i suppose. Again, during the day, staff always there, entertainment and personal care. Better than i could give her which was day time tv and the inability to get her clean and changed into fresh clothes.

Peter
 

Stacey sue

Registered User
Jan 24, 2020
71
Hi Peter, Dave asked me where the car was? and I like you read things into this? I am sure it is forgotten as soon as it’s said ,but it plays on my mind!! Would be so much easier for us to spend proper time with them and get the full picture. I can’t help getting upset too, too many memories and regrets. X
 

Dutchman

Registered User
May 26, 2017
821
Devon
Hi Sue
Went to the home this morning but she’d gone back earlier to her room for a sleep. Good job I have the car for a non booked visit. I spoke to the home afterwards and reassuringly they said she often does this and she’s calm.

Playing on our minds. Yes, no matter how much we can tell ourselves that actually, probably, our love ones are ok, we brood and have too much time in our on our own day to think about regrets and what Ifs. It so good to talk to you and know we’re going through the same upsets

Peter
 

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