Wobbly evening

[alfjess]

Hi
I have never heard of pre bereavement councilling, but I don't think I would take up the option even if offered, I think I would find it a bit bizzare.
Maybe because, I am one of the dark hole type of persons. I can't see that talking about the death of my parents, before the event would help at all, only depress me more, but then that's me, everyone is different, I suppose and if it helps, go for it.

Alfjess

 

[alfjess]

Hi Deborah

So glad to hear your Mum is better.

Well done
Alfjess

 

[Margarita]

OIC now I understand now in what you mean in

'pre-bereavement

I mean a thread that stand alone just for pre-bereavement talking about the manning feeling . I understand grief feeling after a death , but not before so yes i would talk it up if offered so i would no what i am feeling is normal , I would not get depress , because it give me insight to what I am feeling

your all talking about people starting up they own thread , so we can offer them support in the last days , so is class as a pre-bereavement

just that someone said they have been feeling pre-bereavement for 17 years .

hear I am talking about this , pre-bereavement in this thread , something i do not understand , just that it was only offered at the ending only of the stages I would take it up .

when really this thread was started because Deborah needs support , I am not being insensitive , just did not understand

so I would personally have to start a thread to ask that equation , what does pre-bereavement mean to you , because I don't know what it means to me

I have never in my life cared for someone so close that has had AZ , I hear word of the journey , long road , that we are grifting so much that when they pass away we have done with are grifting , so when I cry I grifting while my mother is alive , when I see my mother go into another stage is normal its all part of this pre-bereavement .

 

[Skye]

Maggie, I think you've understood it very well!

In a way pre-bereavement starts at diagnosis of a terminal illness. But pre-bereavemnt counselling usually starts when there is a fairly imminent end-point. That can mean days, weeks, months.

In a sense, you could be classed as pre-bereavement, because you are considering residential care for your mum, and that in itself is a form of bereavement -- at least it would be for me.

If you feel like starting a new thread, why not? Though it might be painful for some. Just ask whatever you want to, Maggie, we'll all support you.

Love,

 

[Natashalou]

Pre Bereavement

I think about my mother dying a lot. When my father died, it was fairly quick, a heart attack, we werent close as my relationship with him had been if anything worse than that with my mother, and rather callously I was pretty unaffected.
When my ex partner and childrens father died quite young last year, my emotions were very mixed.
We had been seperated a long time and there hadnt been much contact, but I had been pre warned by his sister how ill he was (cancer) and when he died it more brought home to me my own mortality. Of course I also felt for my children because although he had been horribly abusive to all three of us, I felt they would face the same issues I faced and still face with my parents, the fact they could never resolve the issues of the past and find out why he was as he was.
however when I dwell on my mothers death, in many ways as I posted elsewhere, I want this time to come. I want closure to the whole thing, which really comprises not just the recent events but the last 40 years.
However I am also sure I will feel both guilt and regret that the time is really over and I will never, ever, get t the bottom of many things, although in my heart I know it is already too late for that anyway.
Then I find myself worrying about the most ludicrous things like where to park when I go and register her death and how embarrasing it will be that there will only be four of us at her funeral..she has no friends to mourn her passing.
She herself "pre booked" and paid for her own funeral years ago...and its a basic one, so there is no need to make decisons on flowers and horses with plumes...which is a good thing . Her "life" is now in a blue folder, where she put everything "ready", birth, marriage cert and medical card..practical..and as cold and clinical as the preceding 80 years.

 

[Lila13]

I couldn't think about my mother dying, but perhaps that was because she was in the earlier stages. She tried to prepare us, but I could never understand why she wanted to be dead, she didn't seem to have anything fatally wrong with her. None of her siblings knew she had a habit of talking about wanting to be dead, they found it very strange, even when they were dangerously ill they were hoping or praying for recovery.

Of course there were plenty of issues I'd been hoping to resolve, I expect there always are, whatever the relationship has been like before.

My mother had made some of her funeral plans, there were envelopes ready addressed and stamped, a reading and a song she'd chosen.

Of course in theory I know we're all mortal, but it still doesn't seem real.

 

[Margarita]

I want closure to the whole thing,

that what I felt would happen if I took my mother of medication for AZ and put her in a NH . so I canceled , will I did not go to the doctor to talk about mediation & taking her of it

I can only put closure on my past when my mother passes away , that only my personnel view I do not have the courage to take my mother of the medication for AZ.

I ask myself what is it can't I just let go be positive got back to work and just visit my mother , then I think its more to do that I do not have the right to force the issue and take away this medication for my mother , put her in care home , while she still know her awareness and still on this medication , it would be just so pointless to have given her this medication in the first place to just put her in a care home .

As I know myself I would only want my children to put me in a NH , Not a care home. so I only do thing for my mother that I would not like to be done to myself so I book 2 weeks respite

as I would not mind my children doing that to me, just to give them a break and now I would not want to be given medication for late stages of AZ and be cared for with dignity in my late stages of AZ in a nursing home , all that shall all be put in my living will .

because I would not want to prolong this AZ and let my children see me like I am seeing my mother , because I now understand the emotional torment , it has done to me , so would not want pass that on to my children so shall let nature take it course all in one go .

My mother always had put money aside for her funereal and my father , now I understand why because death come to us all , not the way we like to die , but its a fact and we just have to face it , when force to face it with a terminal illness I may sound mercarve (spelling is wrong ) , but when I am feeling so much sorrow , like I am lately its time to get strong and respite for me , to help me carry on .

I am glad you said that

In a way pre-bereavement starts at diagnosis of a terminal illness. But pre-bereavement counseling usually starts when there is a fairly imminent end-point

because I was thinking is site was a counseling site for pre-bereavement all the time, and they I was supporting people sharing my life while they are counseling me , kind of put me of TP , but its OK now

 

[DeborahBlythe]

Forgive me again, but I wanted to continue posting about my mum and to ask for suggestions.
I didn't see her on Wednesday because I was feeling a bit poorly and anyway had to finish an assignment. Today the car needed MOT-ing so I missed the 'Thursday visit from the GP to the home at lunchtime, but made it over at suppertime.

My mum was sleeping, or drowsing as usual and had no teeth in. A carer who is usually quite good acknowledged me as I walked to my mum's room and was carrying a tray away which I later discovered contained the remains of my mum's supper. She came back and said she ahd been unable to find my mum's teeth so she had just tried to make do as best she could. My mum had eaten a forkful of cheesy mashed potato , and a yogurt. I found the teeth wrapped in wet handpaper sitting in a fruit bowl. My mum is virtually immobile these days and they could only have been put there by a carer. It only took me a minute to spot them so I was a bit annoyed that the evening carer hadn't seen them, and a bit more annoyed that they were sitting in the fruitbowl anyway. The chart where her food intake is recorded was not filled in for lunchtime.

Some apologies were offered about the chart and the teeth, though I still don't know why they were in the fruitbowl as the relevant carer was not around. My mum is usually given a food supplement and some evening medication after her meal, but I could not find out whether this had happened. I particularly wanted to check that the antibiotics had been taken.

She looked pink-cheeked again but her forehead was really cold and clammy. I sat with her, occasionally tempting her with the usual biscuits and jaffa cakes and sips of this and that. Didn't make any huge progress but she was quite lucid in her responses and wasn't coughing that phlegmy cough I'd heard the other day.

I stayed quite along time, reading a book and minding my own business. On Thursday night there is an exceptionally good carer on duty and I knew that everything would go as well as it could when she arrived. At 7pm before the shift-change, there was a horrendous racket out on the landing. At first I thought it was residents in distress but I soon realised that it was Nurse One, howling and shouting and really really upset about something. I couldn't really catch what it was about but it went on for ages and I think she was offloading to another member of staff a grievance about either the manager, or a relative. She kept shouting " Why does she have to do this, Why does she have to do this?" Almost maniacal. I went downstairs when the coast was clear to get a beaker of tea for my mum; when I returned, Nurse One was in full flow again. All in all she was shouting and protesting for about half an hour. Extraordinary.

Then things went quiet. I waited another half hour for my favourite carer to turn up but she was about twenty minutes later than usual. In the meantime something was amiss down the corridor and I heard carers saying " She's on the floor". When my mum's carer appeared, she thrust the tea and biscuits that she would normally have given herself to my mum down on a table and said, " Would you mind giving this to your mum yourself, I've got to go to the hospital with one of the residents." I was of course happy to do so.

I asked if it was a resident in a room two doors away, because that seemed to be the focus of activity. None of my business, but it's hard to ignore, especially when you are a bit on edge for other reasons, as I was.
" I got such a shock", she said. "I went in with the tea tray and she was on the floor with her head bleeding. She'd fallen out of bed."

This lady was taken by ambulance crew off to hospital and I left a little while later, as my mum was peaceful, seemingly comfortable and said she didn't want anything.
I can't help thinking that the ranting and raving had meant that this lady had been overlooked.
I came home thinking, " It's time I did something. I don't think I want to leave my mum in this home any longer", and I have spent the last hour or so scanning through CSCI reports on the internet. Strangely, some of the potential homes don't have visit reports available, whch surprises me as I do have older versions of some of them , but even these have gone. I'm going in to speak to the manager tomorrow as I am really bewildered and worried about what happened tonight.
Re the pre-bereavement counselling, it was offered by a voluntary service locally, but there are a few reasons why I don't want to take it up. I'll post these later, if anyone is interested. For the moment , my explanation is something along the lines of "Sufficient unto the hour" , i.e. I'll do my grieving when the day comes. But that's not the only reason.
Thanks for your patience in following this through, if you have done, and forgive me for not picking up on postings . Love

 

[Margarita]

and forgive me for not picking up on postings

No don't ever worry about that , just go to show how you got to be so on the ball with your mother care in care home , that the caring never stop even in care home thanks for sharing

make me wonder with all the going on with that other care nurse arguing , that your right , other woman got forgotten about , her poor relatives ( and the woman ) let us know how you get on after talking to care home manger

 

[Skye]

Dear Deborah

What a rough time you're having. That care home sounds distinctly uncaring. Fawlty Towers springs to mind!

I'm not surprised you're stressed. Please don't worry about replying to posts, they're meant to support, not give you extra work.

I hope you get some satisfaction with the manager, it would be easier if you could get an improvement in your mum's care without moving her, but I guess you've tried that.

I'd be interested to hear your thoughts on pre-bereavement counselling. It's not something I'd want myself, I'd rather focus on the living for as long as life is there. And posts on TP are very much focussed on the living.

Please post again and let us know how you get on.

Love,

 

[Skye]

I ask myself what is it can't I just let go be positive got back to work and just visit my mother , then I think its more to do that I do not have the right to force the issue and take away this medication for my mother , put her in care home , while she still know her awareness and still on this medication , it would be just so pointless to have given her this medication in the first place to just put her in a care home .

Maggie, it's brave of you to decide to go on. And I love the way you've worked out the reasoning for your decision. Respite sounds just what you need just now.

But your decision doesn't have to be final. It's what you've decided for now, and I admire you for it.

because I was thinking is site was a counseling site for pre-bereavement all the time, and they I was supporting people sharing my life while they are counseling me , kind of put me of TP , but its OK now

I'm sorry if this upset you, it wasn't meant to. We're each counselling each other on TP. Nobody patronises or puts down anyone else, because we're all in the same boat. We need each other, that's why we're here.

Just put it out of your mind for now, you don't need it. Just go on being Maggie.

Love,

 

[DeborahBlythe]

I've got a lot of thoughts that need to be shared, but I'm too tired tonight to write anything except straight narrative.
I went in at lunchtime and my mother was sitting in her chair in the dining room looking perfectly chipper and very pleased to see me. " What are YOU doing here?" she asked and I told her I had come to have lunch with her. She was amazed. ( She's often amazed to see me, as if I must have at least travelled three continents and cut through the undergrowth of eight Borneo's to find her.) Her lunch was already in front of her, boiled fish, mashed potatoes and peas, No knife and fork and no drink but I'm sure these would have arrived even if I hadn't asked for them rolleyes: )

She ate her lunch with my help, and said it was too dry, but some fruit juice helped. They brought me some fish and chips. (Yes, you've guessed, breaded fish and chips and peas! I started giggling, and thought of my TP friends.) She refused any pudding but wanted a cup of tea and a biscuit. I took her, swathed in a blanket, out for a few minutes into the garden and we drank tea in the sunshine, then I pushed her around the garden path to admire some roses. She seemed to enjoy this little excursion far more than the last outdoor venture, on I think, Easter Weekend. SHe even agreed that she could hear the birdsong which WAS very loud, but I think the magpies would have to sit on her shoulder with loud hailers before they got through to her. I could be wrong.

After that I took her upstairs and we waited for the carers to put her to bed.
They were very slow doing this because some kind of construction work akin to the building of Wembley stadium was going on in the room of the lady who fell out of bed last night. I think they were erecting a picket fence around her bed to stop her diving onto the floor again. I was pleased to see her sitting in a chair outside her room whilst the stakes were hammered in, or whatever. And even more pleased that she was actually breathing.

As promised, I went to see the Manager, who had been very cordial to me over lunchtime.
I raised a short list of comments, the second of which was about the ranting and raving from Nurse One last night. The Manager was deeply apologetic that we had been disturbed by her. The explanation was this. A relative of Nurse One had rung up whilst she was on duty and told her that her brother had died. This had prompted the half hour of shouting , screaming, wailing and inveighing against the unknown female whom I had guessed (apparently wrongly) was the Manager or a resident's relative. The Manager herself had been rung by other staff and the Deputy Manager had been sent in to sort things out. (She wasn't there when I left, two hours later). The Manager said that it was all very unfortunate and she would be speaking to the staff. In future if for any reason a member of staff went off the rails, she would remind staff to take the person away and calm them in her (the Manager's) office. Doubtless she keeps a stock of straitjackets and manacles there.

It was almost convincing, as an explanation, but something somewhere says it doesn't quite fit. Nurse One had definitely been off her trolley about the actions of someone ( female). If her outrage was about being informed whilst still on duty, I can't really see why she would make such an issue of it, thus making things worse for herself and others. But perhaps I am being too cold about this. All I know is that for at least half an hour she was beside herself with anger. And shortly afterwards an unattended resident fell out her bed and had to be taken to hospital. I didn't say anything to the Manager about the lady who fell from her bed, or try to link one to the other as I thought there was no point. I just wanted the Manager to know, in case she was unaware, about the outburst.

On reflection, I think a little more kindly now about Nurse One. Assuming I've been told the truth, she was probably distraught and didn't know what the right thing to do was and could not think of anything except the distressing news. She may even have resisted 'leaving her post' even though she was clearly in no state to be working.
I came away at 4pm, my mum dozing. Felt quite exhausted.

 

[Grannie G]

Hi Deborah,

I relate to all your feelings of disquiet and can only suggest you remain observant.

This is all relatives can do when they have anxieties about the calibre of a home.

As long as the management know you are ready to question anything unusual, and as long as you remain a regular visitor, although the situation may not be ideal, your mother shouldn`t be affected.

A move is such an upheaval and one I wouldn`t reccommend unless absolutely necessary.

Not much comfort, I know.

Love

 

[BeckyJan]

Just read your post - hope you had a reasonable night.

at least half an hour she was beside herself with anger.

I must be very old fashioned. Whatever bad news the nurse received does not deserve someone else getting the brunt of her feelings. Sorry - but I do think a nurse/carer is there to be 'controlled' and caring at ALL times. We in our plights at home know that if the situation is difficult, we have to walk away even if only for a few minutes.

I am glad you were able to express your feelings on TP. It also came through I think that your Mum did enjoy your visit.

Have a good day Jan

 

[DeborahBlythe]

Sylvia and Jan, thanks for these posts. What you said makes good sense Sylvia

and (partly) stopped me rushing around today viewing homes I have looked up. I

could probably cope with the upheaval, if I had enough confidence in the place

which I chose to move my mother to, but I'm sure you meant that the upheaval

would be too much for my mum. Yes, it would be upheaval for my mother too,

but she barely knows where she is now. Each visit from the care staff is a

novelty , she doesn't remember them from one day to the next, (although she

can put on a stunning welcome for them!) I know this sounds self-centred

but I would be so glad to find a home where I could leave my mother and not

worry what is happening when I am not there. I don't take holidays because I

don't like to be absent for too long. It would be wonderful to think that I could go

away and leave my mother for say a fortnight and take a proper break. When I

was absent in February, because I had a flu bug, my mum's weight dropped and

I don't think they looked out for her as much as they have to when I come in

regularly.

She is so desperately undernourished, looks like a famine victim when

undressed, that I can't believe she will survive if I take a break of more than a

day or two.

During the week one of the nurses took me aside and said that another of the

homes owned by the same company had rung up to say that they now had a

room available for my mother if it was wanted. This home had not contacted me

or my brother, which I found a bit strange. We put my mother on their waiting list

last year when my mother was in hospital and her (former) home were playing

silly b...s about taking her back. I've visited it a few times to try and persuade

myself that it would be a nice place for my mum to go. It is closer to me ( three

miles away as opposed to ten) so that is it's main advantage. It has an EMI

nursing unit as well as an ordinary nursing unit but the EMI Unit has only just

received its CSCI registration and at the time that I looked it over, I was really

depressed by what I saw. To be honest I think my mum is still quite Ok for

ordinary nursing as she has no challenging behaviour whatsoever, and now can't

wander or get lost because she is virtually immobile and wheelchair-bound, bless her. It's the gamble though. Would it be going from frying pan to fire? I'd so like to improve the quality of her last days, they really are quite unpleasant at the moment.



Jan, I think my mum did enjoy the visit, and so did I. Many thanks to you both for following this thread. Love Deborah

 

[Grannie G]

Hi Deborah

You make a fair point about wanting to find a home you can visit less frequently, knowing your mother will be well cared for.

The upheaval I refered to was with regard to your mother, rather than you, [sorry if that makes you second best ]but if you have found somewhere you have more faith in and don`t think a move will add to your mother`s confusion, that`s a different story.

I was lucky as I did manage to find a wonderful home for my mother`s final months, but whether it made her feel better, I`ll never know as she didn`t appear to be aware of anything. However, it eased my conscience and I felt much happier, having absolute faith in the staff and management.

It would be lovely for you to have a holiday, secure in the knowledge your mother was being well cared for.

Love xx

 

[DeborahBlythe]

Continuing the thread about counselling and pre-bereavement counselling

Some days ago, Hazel commented on this thread that she would be interested to hear my views on pre-bereavement counselling. Firstly I'd like to apologise for not picking up on all the kind thoughts posted here and the many personal views expressed based on very intense, distressing personal experiences. Helen, I had no idea that your mum has been going through the AD journey for so very long. I cannot imagine how that must feel for you, and I send very great respect and much love.

As for whether 'counselling' is for 'billy no-mates' type people, well I have to confess that I come into that category, or at least it feels like it very often. I do have a sibling who has been involved with my mother's care, but his input has reduced markedly over the last few months, and besides, we had a falling out some months ago and I can't see the way back to our former relative closeness. I live alone apart from a housemate who, when he is around, can be extremely supportive, but he has his own life amd sadnesses and cannot be expected to be there to mop up my emotional incontinence. I don't, at the moment, have a workplace or work colleagues so am quite isolated and prone to sweeping depressions.

I think I would benefit very much from counselling, of the sort that was offered by my GP's practice for the regulation 8 weeks, but that is not available as I have had my quota. I have tried to get a referral to another counselling service run by a social work team, but last week I heard that they could not help me.

The pre-bereavement counselling was suggested by the social work team as they couldn't help me themselves. I suppose when it was suggested, I was quite shaken, and wanted something better than a service supplied by volunteers. And I didn't want to be expected to focus on my mum's death and come to grips with it on the basis that that was what the service was tailored towards. I want to talk about what I want to talk about. I want to set my own agenda.Perhaps I haven't understood the full potential of pre-bereavment counselling, or perhaps this particular Bereavement Service ( the service to which I was offered access and which offered to help me) hasn't quite managed to intepret what it what might offer very flexibly yet..

Yes, TP is a fantastic resource and there are fantastic examples of people giving great advice and wonderful kindness, but there are some problems, at least in my case. I cannot be fully open about the things that I need to talk about, partly because I would hate my family to know what I am thinking. Although there is a fair degree of anonymity in using aliases here, there is also scope for enough revelation to make it clear at some time that particular individuals are offloading their less than charitable thoughts about others in the same family. And some of my issues just don't bear revelation even anonymously anyway. I need to speak in confidence to another human being, not a virtual family, however supportive.

Also, with the virtual world, as some members, including Bruce and Joanne have mentioned elsewhere, it is very easy for misunderstandings to occur because of the rather faceless yet speedy way in which words appear and the occasional difficulty in understanding or conveying nuances and misinterpretations of emphasis. Even when we get to know each other's style and personality and come to think of TP members as friends, there are times when TP can be upsetting, disquieting. I am speaking personally here as someone who is a bit prone to paranoia, on the edge and worries a good deal about what other people think of me. Pathetic, I know, but I can't help it. It's part of a general lack of confidence flowing from the loss of my job four years ago. In a counselling session I can pour out my heart to one person in a confined area. On TP the world and its wife and big brother can be listening. It's just a bit spooky sometimes.

As for the principle of pre-bereavement counselling, well what I would say is that people who are involved with dementia care do deserve every support that can be brought to them if they want it. The nature of dementia, the fact that it can,as Helen knows, last for so long, the way in which personalities seem to unravel, the relentless downhill journey, the 'living' loss of loved ones, and the many many care issues around dementia which are not yet, in my opinion adequately addressed makes dementia a uniquely poignant and heart-rending condition for us all to face. Perhaps this is 'special pleading', in a world full of other heart-rending stories and perhaps what might suit me would not appeal to other carers. And yes, of course we have to accept that an ageing process and eventual loss will occur for every person, whether with dementia or without. I just think that the process of dementia presents carers with a different series of traumas for which some sort of counselling, face to face, might be a useful safety valve and support.

 

[Skye]

Dear Deborah

Firstly, don’t apologise. You’ve obviously done an incredible amount of soul-searching, and I appreciate your full and very honest reply.

I have to say that I agree with so much of what you have said. In fact I could have written so much of what you have said.

I don't, at the moment, have a workplace or work colleagues so am quite isolated and prone to sweeping depressions.

I want to talk about what I want to talk about. I want to set my own agenda

Even when we get to know each other's style and personality and come to think of TP members as friends, there are times when TP can be upsetting, disquieting. I am speaking personally here as someone who is a bit prone to paranoia, on the edge and worries a good deal about what other people think of me.

Deborah, those three statements could so easily describe me.

As for the principle of pre-bereavement counselling, well what I would say is that people who are involved with dementia care do deserve every support that can be brought to them if they want it. The nature of dementia, the fact that it can,as Helen knows, last for so long, the way in which personalities seem to unravel, the relentless downhill journey, the 'living' loss of loved ones, and the many many care issues around dementia which are not yet, in my opinion adequately addressed makes dementia a uniquely poignant and heart-rending condition for us all to face.

..........................

I just think that the process of dementia presents carers with a different series of traumas for which some sort of counselling, face to face, might be a useful safety valve and support.

Again, I can only agree. Alzheimer’s is a foreign country, and we have no map. TP can offer advice, support, virtual friendship, but we are still each on our own. And if you can find someone that you relate to and can talk openly to, then grab the opportunity with both hands, you deserve it.

Thank you so much for having the courage to say what you have. I for one don’t feel quite so alone tonight.

Love and huge hugs,

 

[alfjess]

well what I would say is that people who are involved with dementia care do deserve every support that can be brought to them if they want it. The nature of dementia, the fact that it can,as Helen knows, last for so long, the way in which personalities seem to unravel, the relentless downhill journey, the 'living' loss of loved ones, and the many many care issues around dementia which are not yet, in my opinion adequately addressed makes dementia a uniquely poignant and heart-rending condition for us all to face. Perhaps this is 'special pleading', in a world full of other heart-rending stories and perhaps what might suit me would not appeal to other carers. And yes, of course we have to accept that an ageing process and eventual loss will occur for every person, whether with dementia or without. I just think that the process of dementia presents carers with a different series of traumas for which some sort of counselling, face to face, might be a useful safety valve and support.

Hi Deborah
I agree totaly with what you have said above. As well as councilling, some training would be good also.
Alfjess

 

[Grannie G]

Dear Deborah,

Your extremely moving post has made think hard about my own state of mind and how I address my inner turmoil.

To be honest, I think half my feelimgs are undisclosed, because there is no-one to disclose those feelings to.

Whether or not it would be of benefit to disclose those feelings is something I have never been sure about.

The problems are;

a] the availability of Counselling facilities for a long enough period for the service to be effective,
and
b] the calibre of the counsellor.

Because of the above, I have never felt comfortable enough to explore what is available and just get along as best I can, disclosing what I am able to, and keeping the other stuff as far to the back of my mind as I can.

The comfort I get from TP is knowing there are so many others with hidden demons, and yes, it makes me feel less isolated.

Take care

Love xx