To post or not to post?

[Philbo]

Good morning

Some of you will be aware that I recently posted about the sad news that my lovely wife Lyn had finally succumbed to this terrible disease.

Your messages of condolence were gratefully received and heartwarming. The support and love this forum gives is what keeps most of us going.

Like many others who have suffered a loss, I have continued visiting TP and guess I will do so for a long time. It does, though, pose a dilemma (for me anyway) as to whether to post or not, when people's loved ones are getting towards the end stages.

As carers, we are often looking for positive or encouraging responses, and whilst I am at the raw stage, following my loss, I would dearly love to add to these comments. However, it is not always easy to share some of the reality or inevitability associated with these later stages, as I really don't want to add to their worries.

 

[Bunpoots]

I felt the same after my dad died. I don't have much experience of end of life - my dad died suddenly and unexpectedly and neither my mum or my aunt had harrowing deaths. I'm very grateful for this but it does mean I don't know what to say to people in this situation.

I'm sure your experience will be useful to others so I'm pleased you feel you want to remain part of the community. It helped me to get through the raw stage after dad's death and still feels like the right place for me to be. Just do what feels right for you. I'm sure your input will be appreciated.

 

[Pete1]

Good Morning @Philbo, when you feel ready and able I think your experiences can help others, even if it is just an understanding of what they are going through. I went through it with both parents (who had dementia at different times), it is incredibly painful and confusing to witness, so I can empathize with you, I would expect you are still quite numb. I think it is admirable that you are thinking of others, but only do it when its the right for you - take care of yourself.

 

[marionq]

Your point @Philbo is well taken. I have been at the deathbed of several people without being upset but my own husband had a less than peaceful death. The kind of person he was should just have slipped away in his sleep but it was not to be. If only we could write endings. Better we don’t say too much than upset others.

 

[canary]

Do whatever you feel is right @Philbo . I am one who will explain what happens, although I try not to post upsetting details, unless they ask about them. Both my MIL and mum had long drawn out deaths from dementia and although I was never my MILs main carer I used to sit with her a couple of hours every week and I sat with her while she was at end stages too. In fact, she was the first person I had seen die. I think that quite often people want reassurance that what they are seeing is normal and many seem to worry that they are "starving to death". I hope they find it helpful

 

[Grannie G]

We are not here to predict nor can we always make things better but so much help and support can be given simply by identifying with carers who are still troubled and feel isolated.

I try to post hopefully if I feel I have something worthwhile to say. I identify with some people and predicaments more than others but the beauty of Talking Point is the diversity of its members.

I hope you will keep visiting Talking Point @Philbo for as long as you need to and at the same time will feel able to continue to offer your valuable contributions to others.

 

[Izzy]

I’m another who hopes you stay with the forum @Philbo.

As you say you are raw just now but I’m sure you will know yourself when you are ready to others.

It’s now almost 8 years since my mum died at home with us having had Vascular Dementia. It’s almost 4 years since my husband died in hospital with Alzheimer’s. I’m still around. I have felt the continuing support following my losses invaluable and like Sylvia I post when I feel I have a contribution I can make.

Your contributions will be valuable to other members - please stay around!

 

[Shedrech]

hi @Philbo
your post shows just how understanding, thoughtful and considerate of others you are
those members facing the last days of their family member or friend will no doubt appreciate a response from you
I tend to weigh up the way the person has posted to guage whether they are asking for reassurance and sympathy only or may be seeking some idea of what is 'physically' happening ... some of us want to know more/less than others ... though no-one, I think, has reacted negatively to posts offering details or links to specific information ... and you can post once offering further information then see how the member replies before responding again
I'm sure you will find a way to post appropriately in your usual kind manner

 

[Philbo]

Thanks folks, for all of your responses so far. Though it is still raw, the immediate "positive" emotion I felt (as did our family, who were with me) was immense relief, both for us and my lovely wife.

And you are of course right in that there is a need to try and gauge how much information (and the level of detail) that is being sought.

Thinking back all those years to when I first started browsing TP, it was hard to even do so, when I was full of foreboding and anticipatory grief, following her diagnosis. But the quantity and quality of the responses from everyone willing to open up and share their experiences was truly humbling.

So I will indeed continue to browse and post where I feel I can help support those who are still on their journey, or who like me, have reached the end but are still coming to terms with what's next.

God bless
Phil

 

[Jale]

Hello Philbo, I think your insight with this awful illness will be welcomed. Admittedly some people may not want to know all aspects that dementia throws up but for me personally I do like to know so that I can be prepared (or as prepared as possible)

Take care x

 

[Cat27]

@Philbo I‘m glad you’re staying. Your posts are always so supportive & helpful.

 

[myss]

I agree with canary that you should post if you like to. I'm glad you've now decided to continue posting. As you have experienced with your own sad news, the words and comfort from those who have been or are going through the same sad/similar process will be of use to others as well as your experience handling the behaviours of your dear wife.

 

[CWR]

Thanks folks, for all of your responses so far. Though it is still raw, the immediate "positive" emotion I felt (as did our family, who were with me) was immense relief, both for us and my lovely wife.

And you are of course right in that there is a need to try and gauge how much information (and the level of detail) that is being sought.

Thinking back all those years to when I first started browsing TP, it was hard to even do so, when I was full of foreboding and anticipatory grief, following her diagnosis. But the quantity and quality of the responses from everyone willing to open up and share their experiences was truly humbling.

So I will indeed continue to browse and post where I feel I can help support those who are still on their journey, or who like me, have reached the end but are still coming to terms with what's next.

God bless
Phil

The great thing about this forum is that it helps carers know that what they are experiencing is common, that they are not alone, that others have gone through this too. It serves as an information resource, where practical solutions can be suggested, and emotional support given by others who understand what it means to be a carer for someone with dementia. I personally have found the forum a tremendous help, especially at the moment, when I am coming to terms with the loss of my lovely mother. Friends are good too, but at times you can feel you dont want to burden them with it. That's where the forum comes in. As for how much detail about distressing situations, well, thats where discretion comes in, for all of us. I can't say how much TP has helped me, so I hope you continue to add your comments when you feel it's right to do so.

 

[Alibear]

I absolutely agree @CWR- i too find this forum invaluable as there doesn't seem to be anyone else with this wealth of experience and information that i've found. I visit regularly and find comfort in knowing others are in similar situations and none of us are alone. Xx

 

[Beate]

When Izzy posted about Bill's last days, it helped me. When I posted about John's last days and the funeral arrangements, I hope and think it helped others, though I didn't do it for anyone, I did it for me.

It might also help others to know that there is life after caring, so don't stop posting.

 

[Izzy]

When Izzy posted about Bill's last days, it helped me.

That's so kind of you to say so @Beate. Thank you.

 

[Hazara8]

Good morning

Some of you will be aware that I recently posted about the sad news that my lovely wife Lyn had finally succumbed to this terrible disease.

Your messages of condolence were gratefully received and heartwarming. The support and love this forum gives is what keeps most of us going.

Like many others who have suffered a loss, I have continued visiting TP and guess I will do so for a long time. It does, though, pose a dilemma (for me anyway) as to whether to post or not, when people's loved ones are getting towards the end stages.

As carers, we are often looking for positive or encouraging responses, and whilst I am at the raw stage, following my loss, I would dearly love to add to these comments. However, it is not always easy to share some of the reality or inevitability associated with these later stages, as I really don't want to add to their worries.

There are numerous forums online dealing with various issues such as relationships, health, weight loss and so on. Here we are engaged in something which, it seems to me, is profoundly unique. The certainty of an outcome borne out of an exclusive and elusive disease, which takes ownership of a person in a manner both oblivious to feelings of both parties and capable of quite staggering levels of deterioration also in both parties, mental and physical. Dementia in its many guises has broken hearts and rendered strong men and women virtual invalids. Not always of course. But every story is unique and should be told, if indeed the teller is willing. At the time it is perhaps the very last notion on your mind to do this, owing to the sheer level of engagement, both physical and psychological. When the journey ends for the one who has borne the brunt directly, it is the aftermath which can often produce truly valuable input to such a forum as this one. Because " you have been there " . We can study - as l have done - the research, the workings of the brain, the various features of the various dementias, how cells form and behave, etc etc. Very interesting and important. But actual first hand experience in terms of care and relationships, is invaluable because you are witness to the actual behaviour, the actual facts, the actual feelings evoked, the actual physical implications and complications which arise and the pronounced emotions evolving out of often desperate situations and traumatic events. All of this is unique to you, as carer. There are truly excellent texts explaining the known nature of say Alzheimer's or Parkinson's and so on. But at the end of the day our humanity is what enables empathy and perhaps a sense of "coming to terms" with such a hugely challenging disease. You are a mouthpiece for all those who tread this path and who seek solace by way of knowing they are not alone. There is a limit to information alone being a means to an end. It is that all important and irrefutable fundamental human element with its vulnerability and sensitivity combined, which communicates to fellow carers something of tremendous value. However "raw" the moment of loss might present in terms of heartache or even profound despair, the fruits borne out of all that has gone before, enhances the meaning of life and as such should be shared if you are willing to do so. There will be many, many ears receptive to that sharing l do assure you. So thank you.

 

[Grahamstown]

There are numerous forums online dealing with various issues such as relationships, health, weight loss and so on. Here we are engaged in something which, it seems to me, is profoundly unique. The certainty of an outcome borne out of an exclusive and elusive disease, which takes ownership of a person in a manner both oblivious to feelings of both parties and capable of quite staggering levels of deterioration also in both parties, mental and physical. Dementia in its many guises has broken hearts and rendered strong men and women virtual invalids. Not always of course. But every story is unique and should be told, if indeed the teller is willing. At the time it is perhaps the very last notion on your mind to do this, owing to the sheer level of engagement, both physical and psychological. When the journey ends for the one who has borne the brunt directly, it is the aftermath which can often produce truly valuable input to such a forum as this one. Because " you have been there " . We can study - as l have done - the research, the workings of the brain, the various features of the various dementias, how cells form and behave, etc etc. Very interesting and important. But actual first hand experience in terms of care and relationships, is invaluable because you are witness to the actual behaviour, the actual facts, the actual feelings evoked, the actual physical implications and complications which arise and the pronounced emotions evolving out of often desperate situations and traumatic events. All of this is unique to you, as carer. There are truly excellent texts explaining the known nature of say Alzheimer's or Parkinson's and so on. But at the end of the day our humanity is what enables empathy and perhaps a sense of "coming to terms" with such a hugely challenging disease. You are a mouthpiece for all those who tread this path and who seek solace by way of knowing they are not alone. There is a limit to information alone being a means to an end. It is that all important and irrefutable fundamental human element with its vulnerability and sensitivity combined, which communicates to fellow carers something of tremendous value. However "raw" the moment of loss might present in terms of heartache or even profound despair, the fruits borne out of all that has gone before, enhances the meaning of life and as such should be shared if you are willing to do so. There will be many, many ears receptive to that sharing l do assure you. So thank you.

What a truly wonderful post and so uplifting and true! As another person on TP has said in answer to me, it’s a great privilege and expression of love to care for another and help them over the threshold between life and death.

 

[worriedson77]

What a truly wonderful post and so uplifting and true! As another person on TP has said in answer to me, it’s a great privilege and expression of love to care for another and help them over the threshold between life and death.

I felt compelled to post to agree with you @Grahamstown that @Hazara8 captures so eloquently what I wanted to say to @Philbo. The information and support I have experienced on here has been a lifeline for me as a carer but also helps me better understand my pwd as well. Genuinely it brings me hope and gratitude that there are individuals on here that in their own darkest moments are able to provide support and guidance to others. Its strange but this place helps me understand and make connections between the condition, the clinica and otherl processes and the underlying emotional effects which do defy logic a lot of the time. I wanted to add my Thanks to those that have been there for me and say to Philbo that i am sorry for your loss but so grateful for your insight.