Set me free - for just five minutes!

[anxious annie]

Hi Kindred,
Yes I know what you mean. I care for mum, and it dominates my life, and must be much more so for those of you caring for your OH. Whenever I speak to my sister on the phone, or we meet up, our conversation now revolves around mum, what we need to do for her, what will happen in the future. When I see friends or old work colleagues they too, invariably start a conversation with "How's your mum?" It takes that effort to stir the conversation around to other things. You're such a positive person that others hopefully will pick up on this and realise that, as much as you adore and care for Keith, you have other things to offer too. Xx

 

[Olliebeak]

I remember once going for the jugular of someone who introduced me as P’s wife! Then I was **’s Mum. Society loves to pigeon hole people by their job or role in life. Now I find people look at me with their head on one side and say “ and how is B?”. When I meet new people (rarely) I’m quite open about it as It explains why my life is so limited. I don’t think I have been introduced as a carer - yet - but I know people talk behind my back. You certainly find out who your friends really are. The ones who ring up regularly and still want to socialise even though the OH can be hard work. KBO!

 

[Grahamstown]

I realise reading this that people do in fact ask me ‘and how are you, and I reply that I am well but with the added comment that it’s sad what has happened. They usually continue by saying that I must get help, have a break, and they do come to visit, they are concerned. Still I am doing my bit for the public education about dementia characteristics and prevention, such as it is.

 

[northumbrian_k]

It is hard to escape the demon of dementia, sometimes more so but in a different way, now that my wife is not here but is being looked after in her care home. After visiting her this morning, here I am on a lovely sunny afternoon still talking about dementia on this forum when I should be out somewhere with the dog. A strange thing is that several people who did not come near when my wife was still at home have developed a sudden interest in talking to me - and even offering to help - but all they seem to want to talk about is her. If only they had shown this interest and some actual, practical support when I was caring for her on my own for 24 hours every day. At least I have the dog and my bikes when I need a rest from thinking about dementia.

 

[Jaded'n'faded]

It is hard to escape the demon of dementia, sometimes more so but in a different way, now that my wife is not here but is being looked after in her care home. After visiting her this morning, here I am on a lovely sunny afternoon still talking about dementia on this forum when I should be out somewhere with the dog. A strange thing is that several people who did not come near when my wife was still at home have developed a sudden interest in talking to me - and even offering to help - but all they seem to want to talk about is her. If only they had shown this interest and some actual, practical support when I was caring for her on my own for 24 hours every day. At least I have the dog and my bikes when I need a rest from thinking about dementia.

I think some people are - literally - scared of people with dementia. Perhaps that is why friends stay away, or maybe it's simply they haven't a clue what to say to someone with dementia or how they should behave.

Certainly, if you meet a less-than-close friend in the street with their PWD, it's hard to know how to approach the situation as you don't know what stage they are at. You don't want to say the wrong thing.

There are people in mum's care home I definitely avoid because I haven't a clue how to deal with them if they approach me. Another man is... a bit scary. He lashes out unpredictably and shouts.

At least here on TP we know people understand - there is so much that we don't have to explain and that is a wonderful thing. With friends I never know how much of their concern is genuine. (Some is certainly annoying but I am learning to smile and grit my teeth.)

 

[kindred]

It’s something that is affecting me in a negative way at the moment

Someone on TP likened it to PTSD and the person I talk to - not a counsellor by might as well be - has considered I’m not in deep depression per se, they consider it PTSD grief

Its 2 years 6 months since mum died. I cared for her for around 10 years in one shape or form. Her last three years were in care

The first year after her death I continued going through the motions of life in a kind of numb state. The second year, I started to grieve after a fashion. It’s during the last six months that I have been helped to understand that I am deeply grieving - with a sort of understanding but the un said implication being “why suddenly now? It’s been nearly 3 years you should be used to it now”

I do feel shell shocked, so the ptsd scenario feels apt. And the depth of grieving is so intense that I feel I’m feeling the 10 years of grieving all I one go

Hopefully these deep feelings won’t affect me for the rest of my life, but the dementia experience will always be with me

At the moment I don’t feel able to give anyone support, but hopefully with the experience of my dementia journey (hate that word but only one I can think of) I will be able to in the future

 

[kindred]

I am so sorry about your grief. It does sound like PTSD. I agree. One of the measures of grief I most hate, personally and professionally, is that **** about the seven stages of grief. Grief does not go in stages and I agree, it crowds in on us at times when we think we have at least distanced ourselves from it. I tell myself that grief is normal and it will pass. I don't think we really get over these things but we can walk more lightly with them. All sympathy and fellow feeling. with love, Kindred.xxdx

 

[kindred]

It is hard to escape the demon of dementia, sometimes more so but in a different way, now that my wife is not here but is being looked after in her care home. After visiting her this morning, here I am on a lovely sunny afternoon still talking about dementia on this forum when I should be out somewhere with the dog. A strange thing is that several people who did not come near when my wife was still at home have developed a sudden interest in talking to me - and even offering to help - but all they seem to want to talk about is her. If only they had shown this interest and some actual, practical support when I was caring for her on my own for 24 hours every day. At least I have the dog and my bikes when I need a rest from thinking about dementia.

I do understand. I think there is something about dementia that grips our minds. It's bizarre and unpredictable and actually, for many of us intensely interesting in what can be achieved and what tiny breakthroughs are possible. At least, this is what I can now feel, now that Keith is in a nursing home. Thinking about dementia can become a deeply ingrained habit (remember that bad news is actually an addiction - I have patients who are addicted to bad news only). Good to hear from you. Warmest, Geraldine

 

[kindred]

Hi Kindred,
Yes I know what you mean. I care for mum, and it dominates my life, and must be much more so for those of you caring for your OH. Whenever I speak to my sister on the phone, or we meet up, our conversation now revolves around mum, what we need to do for her, what will happen in the future. When I see friends or old work colleagues they too, invariably start a conversation with "How's your mum?" It takes that effort to stir the conversation around to other things. You're such a positive person that others hopefully will pick up on this and realise that, as much as you adore and care for Keith, you have other things to offer too. Xx

That was such a kind post, Annie, thankyou. with love, Geraldinexx

Strange I had been thinking of you and when I opened this you were there. The short answer is, yes. Dementia has shaped us like every other experience, but I do not need to tell YOU that.
As always it is other people that almost seem to gloat with concern for us, almost if it will protect them.
I am now on a few forums that know nothing of my private life, just my contributions. These help me hold to the other part of me.
I get tired when told how well I am doing, even brilliantly!!!
Anything rather than hold my hand in case I drown them in tears! So rant on in a place you are loved. alice xx

Oh bless you, Alice. Gxxxx

 

[kindred]

Me again! I had no idea what wondrous replies I would get when I started this post and I am so so appreciative. Thank you all. Thank you for understanding and sympathising and telling me how you feel about this one.
Most experiences in life are useful, so I guess that like me, many of us will eventually go on to work with people with dementia, even when we are free of our own caring responsibilities. I find it so interesting and rewarding being a volunteer in Keith's nursing home. The situations that arise and get defused, the activities that are surprisingly successful against the odds ….I love being part of it.
Thank you all so much for joining this thread.
with love, Geraldinexxx

 

[2jays]

And THANK YOU for your gentle understanding xxxxx

 

[Palerider]

It’s something that is affecting me in a negative way at the moment

Someone on TP likened it to PTSD and the person I talk to - not a counsellor by might as well be - has considered I’m not in deep depression per se, they consider it PTSD grief

Its 2 years 6 months since mum died. I cared for her for around 10 years in one shape or form. Her last three years were in care

The first year after her death I continued going through the motions of life in a kind of numb state. The second year, I started to grieve after a fashion. It’s during the last six months that I have been helped to understand that I am deeply grieving - with a sort of understanding but the un said implication being “why suddenly now? It’s been nearly 3 years you should be used to it now”

I do feel shell shocked, so the ptsd scenario feels apt. And the depth of grieving is so intense that I feel I’m feeling the 10 years of grieving all I one go

Hopefully these deep feelings won’t affect me for the rest of my life, but the dementia experience will always be with me

At the moment I don’t feel able to give anyone support, but hopefully with the experience of my dementia journey (hate that word but only one I can think of) I will be able to in the future

I hate the word dementia as well, it somehow grates with me in a way I can't describe -it makes me feel cheated out of what could have been the golden years of mums life.

I'm sorry to hear of your grief, I hope the fact you are now able to grieve and recognise it allows you to move forward eventually. I hope it doesn't continue to to affect you as it does now, but it sounds like you have recognised it and that is a huge step. It wasn't until I was seriously unwell (recently) that I realised the extent of my grief - but there are still parts of it I keep buried deep down because I fear everything will fall apart if I let it surface, more because of having been in a dark place before -even now that scares me. Despite all that I know when it comes to the self I struggle.

Sometimes how I feel won't let me help as some things trigger a side of me I can't explain or make me not want to engage, its like a wall for me I can't move. I just know I am here, and that is a starting point for me, perhaps you as well?

 

[2jays]

Sometimes how I feel won't let me help as some things trigger a side of me I can't explain or make me not want to engage, its like a wall for me I can't move.

I can completely relate to this. Not being able to engage. A kind of wall blocking, I guess it’s maybe empathy, for others on here... too hard to revisit my past.

what ever it is, my wall crumbled in an alarming way earlier this year, the grief became overwhelming. it’s only now I can start to face the rubble around my feet and try to make sense of it all.

Vulnerable, fragile, easily rocked by, seemingly to me, unthinking/hurtful words that in the past would have flown passed me.

So unlike me. So very difficult to understand why it was happening to me, making me feel as if I had failed something/everyone in some way. I now see I haven’t failed in any way, and this shell shock is “normal” for how I am dealing with my grief. I think, if I failed at anything, it may be the not looking after myself

Boy it’s hard. But it is what it is....

 

[dancer12]

I think some people are - literally - scared of people with dementia. Perhaps that is why friends stay away, or maybe it's simply they haven't a clue what to say to someone with dementia or how they should behave.

Certainly, if you meet a less-than-close friend in the street with their PWD, it's hard to know how to approach the situation as you don't know what stage they are at. You don't want to say the wrong thing.

There are people in mum's care home I definitely avoid because I haven't a clue how to deal with them if they approach me. Another man is... a bit scary. He lashes out unpredictably and shouts.

At least here on TP we know people understand - there is so much that we don't have to explain and that is a wonderful thing. With friends I never know how much of their concern is genuine. (Some is certainly annoying but I am learning to smile and grit my teeth.)

Hi Jaded'n'faded:

Been there, done that, got the t-shirt. When my dad developed dementia I treated him differently, I didn't understand - I still don't, I was scared I might say the wrong thing that might make him angry and I couldn't deal with it. However how do we expect others to understand something that we don't comprehend ourselves. No it doesn't give them the right of passage, but all people want to feel accepted including those with dementia and fear is fear. People fear the unknown and dementia is a BIG unknown. Don't know the answer, all I know is one day my husband said to me "I JUST WANT TO BE NORMAL AGAIN" my response was THERE IS NO NORMAL THESE DAYS. After he left the room I just cried

 

[Sirena]

I am sure it is very different if it is your OH who has dementia - it's a different relationship so people see you as bound much more closely to it. It's my mother who has dementia and no one asks me about her now. Her friends gave up within a month or two of her going into a care home - it's obvious that they think of her as having already died, a non-person. My own friends used to ask about her when she first went into a care home, but now she doesn't warrant a mention at all unless I introduce the subject. Most of them have lost parents to dementia and I think they just don't want to think about it any more - understandably. And I find if anyone does ask how she is, they don't want an honest answer.