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And so it goes on...

Grahamstown

Registered User
Jan 12, 2018
1,711
80
East of England
I have to say the ad really irritated me as well. I understand what it means, that many people in the early stages of dementia can still have a good quality of life. But it doesn't seem to take into account the carer /partner of the PWD and their need for a good quality of life as well in the way it comes across.
Yes absolutely, it’s all very well and the PWD can only have that ‘good quality of life’ whatever that may mean, at the cost of the carer’s well being. The fact remains that in spite of my initiative, his life is closing in and he is contented thankfully. It’s me who is going stir crazy at times. I have a very good friend who has moved to be near her son whose husband clearly has undiagnosed dementia of some kind, but she is a martyr to the cause, would never complain and she has just exhorted me to ‘keep on keeping on’, which for some reason rubbed me up the wrong way, I haven’t any choice for goodness sake!
 

jugglingmum

Registered User
Jan 5, 2014
5,863
Chester
In a different context, I was told how strong I was, although well meaning, it irritated, I had no choice to deal with what was on my plate and so a large extent at the time I was putting a brave face on. No one can say they know how you feel (another regular comment at the time) as they are not in your shoes, and don't know how things are affecting you.

As you know it is my mother who has dementia, she is very contented, when I moved her into her flat, she went to all the social activities, and did jigsaws and crosswords, these things are too difficult for her now, and she spends a lot of the day snoozing but is happy. I don't see that much of her in reality, just popping in with her food as with 2 kids, and all their activities there isn't time. She enjoys seeing the kids but they can only cope with her repeated comments for so long.
 

Grahamstown

Registered User
Jan 12, 2018
1,711
80
East of England
I am constantly being told how well I am coping and how strong I am, and I think, how can you possibly know, because I am not. I have very little patience and I get cross with the sheer stupidity of this condition, which the sufferers cannot help. I still get cross. My son’s suggestion of a white board is working because I put the day, the date and days activity even if there is not much, and when he asks over and over again I say it’s on your board and he is happy and I am less irritated.

My situation is pretty much the same, all the things you say about your mum apply to my man, sleeping, contented, some of the grandchildren finding the repetition trying. It is trying to get him active that is proving difficult so I can’t be too pushing.
 

kindred

Registered User
Apr 8, 2018
2,493
Yes absolutely, it’s all very well and the PWD can only have that ‘good quality of life’ whatever that may mean, at the cost of the carer’s well being. The fact remains that in spite of my initiative, his life is closing in and he is contented thankfully. It’s me who is going stir crazy at times. I have a very good friend who has moved to be near her son whose husband clearly has undiagnosed dementia of some kind, but she is a martyr to the cause, would never complain and she has just exhorted me to ‘keep on keeping on’, which for some reason rubbed me up the wrong way, I haven’t any choice for goodness sake!
Yes, for heavens sake - what about our quality of life? As for keep on keeping on ... no choice at all. With you all the way. This is not a life, we are human sacrifices. Warmest, Geraldinex
 

AliceA

Registered User
May 27, 2016
2,856
The problem is how can it actually change?
I cannot see any external answers, I have tried to no avail. There seems no respite in any form. No day care in any form.

Internal answers seem to be the only thing we have to empower us.
Our attitude helps to find meaning in meaningless situations.

I was reading in the small hours Joseph Campbell who wrote about universal Myths.
In his companion book he writes about marriage.
(free on line. I have it on my kindle from somewhere.)
He writes about sacrifice, he suggests that one sacrifices to the relationship rather than the actual person(situation?).
The relationship may seem very onesided now but by looking at it as a whole can be very different.
For me I feel when I struggle to cope I would not cope at all if I saw myself as a victim, a sacrifice. How we see ourselves is vital. What others think is not but it is a long journey sometimes to realise that.
When we change our situation we still have problems, they never go away completely. They just morph into others.
Any ideas?

I have been weighing the pros and cons for us. Muddling along seems a good answer for as long as it takes. If the situation changes, I will have to rethink for both of us.
More help means more disruption, lack of disruption makes it easier to muddle along. Muddling along is giving a calmer atmosphere.

My mind needs more hence Joseph Campbell in the early hours!
This gives me things to consider when doing the chores.
If I had the time I would read more and write more,
Even if no ones reads it!
 

jenniferjean

Registered User
Apr 2, 2016
760
Basingstoke, Hampshire
For me I feel when I struggle to cope I would not cope at all if I saw myself as a victim, a sacrifice. How we see ourselves is vital. What others think is not but it is a long journey sometimes to realise that.
Interesting thought. There are times when I feel that I am a victim, a sacrifice. But when I'm struggling to cope I don't think about myself at all, it's just something I have to deal with.
Although what others think is not vital, I do wonder how they do see us. I don't think I could actually ask them, maybe I don't want to know.
 

AliceA

Registered User
May 27, 2016
2,856
I am very suspicious of the power of labels especially those we give ourselves. Say it often enough and it can become true it seems.
We can disable our selves rather than enable.
I wonder whether people do really ever see us or just a reflection of how they would be in the situation they can only imagine.
It certainly is nothing like ours really is. It seems impossible to understand how it really is for someone,
we all have our strengths, weaknesses and out trigger points.

As you said whe you are dealing with something you just do it, I find the same and I am constantly surprised.
I do find it helps to imagine going into a lower gear, sometimes automatic for repeated questions and reminders.
It takes less effort!

It can be lonely, I heard something funny tonight but my husband had not been listening. It is these small things that make me aware of how I miss the sharing.

Be kind to yourself, Alice
 

Grahamstown

Registered User
Jan 12, 2018
1,711
80
East of England
My son came to visit over his lunch hour and he was very chuffed to see the white board in use and the chunky cutlery he had suggested in place. The white board is proving useful and the chunky cutlery is helping because his hands are very claw like now with no fine control. I told my son that his dad had used a full bottle of milk and laid it on it’s side in the fridge where milk had leaked out all over the place, instead of the upright one. I was complaining away and he said oh dear, that’s happening in our house all time with the kids and himself and his wife gets so cross. We did have a laugh and I realised I had to pick my complaints, some are universal. He also suggested a chunky simple remote control for the tv but he only watches button 1 BBC1, so he can remember that so not needed yet. I can see my son is problem solving, also his job, and I can see he would just like his dad to be able to function. Very useful suggestions though.
 

Grahamstown

Registered User
Jan 12, 2018
1,711
80
East of England
Yes, for heavens sake - what about our quality of life? As for keep on keeping on ... no choice at all. With you all the way. This is not a life, we are human sacrifices. Warmest, Geraldinex
Thank you so much Geraldine, I did wonder if I was being churlish because she is a very good person but a bit nun like in her life, assuming saintly suffering without complaint. I can’t be like that I’m afraid. To me her remark wasn’t comforting it got under my skin, sort of stating the obvious. I still feel I was a bit too sensitive, perhaps that’s after years of experience of her approach to life.
 

kindred

Registered User
Apr 8, 2018
2,493
Thank you so much Geraldine, I did wonder if I was being churlish because she is a very good person but a bit nun like in her life, assuming saintly suffering without complaint. I can’t be like that I’m afraid. To me her remark wasn’t comforting it got under my skin, sort of stating the obvious. I still feel I was a bit too sensitive, perhaps that’s after years of experience of her approach to life.
Thank you so much. I was kept going by necessity of course, and by believing that enabling another person to live is an honourable occupation. But that doesn't mean it wasn't pretty darned appalling!
with love and bestm, Geraldine.
 

Grahamstown

Registered User
Jan 12, 2018
1,711
80
East of England
I am with you on that, that is what I am, an enabler and a very worthwhile ambition. Not an easy task at times but your nursing home adventures keep us amazed x
 

kindred

Registered User
Apr 8, 2018
2,493
Interesting thought. There are times when I feel that I am a victim, a sacrifice. But when I'm struggling to cope I don't think about myself at all, it's just something I have to deal with.
Although what others think is not vital, I do wonder how they do see us. I don't think I could actually ask them, maybe I don't want to know.
Aha. How others see us. Well, I have a neighbour who refers to me all the time as Poor Dear Geraldine .... and Keith as Poor Dear Keith. I HATE IT. love and best, Gxxxx
 

kindred

Registered User
Apr 8, 2018
2,493
I am with you on that, that is what I am, an enabler and a very worthwhile ambition. Not an easy task at times but your nursing home adventures keep us amazed x
Oh thank you, so much. Just about to write the next one!!
with love and best, Gxxx
 

Grahamstown

Registered User
Jan 12, 2018
1,711
80
East of England
What a wonderful doctor we have been lucky enough to see. There is very little he can do practically but his moral support is invaluable. The physical signs and symptoms are part of the disease attacking the brain, including the heavy breathing which has become a habit. The doctor observed that he wasn’t heavy breathing during the consultation but he said he knew that he would do it at home with me. The doctor never took his eyes off him throughout the consultation, and started off by trying to get him to communicate, to no avail of course so I looked at my husband and discussed his symptoms as if it was him saying and he agreed with all I said so I was able to say tough stuff in the best possible way. He asked me if I had made any more enquiries about help and we discussed that. He is the doctor at the nursing home we have visited and we agreed that at the moment we can do no more. His last comment was that he would expect him to worsen in the next six months! I know but I don’t look that far ahead.
 

AliceA

Registered User
May 27, 2016
2,856
Aha. How others see us. Well, I have a neighbour who refers to me all the time as Poor Dear Geraldine .... and Keith as Poor Dear Keith. I HATE IT. love and best, Gxxxx
I would hate it too, how condescending! How do you keep your mouth shut!!!
 

AliceA

Registered User
May 27, 2016
2,856
What a wonderful doctor we have been lucky enough to see. There is very little he can do practically but his moral support is invaluable. The physical signs and symptoms are part of the disease attacking the brain, including the heavy breathing which has become a habit. The doctor observed that he wasn’t heavy breathing during the consultation but he said he knew that he would do it at home with me. The doctor never took his eyes off him throughout the consultation, and started off by trying to get him to communicate, to no avail of course so I looked at my husband and discussed his symptoms as if it was him saying and he agreed with all I said so I was able to say tough stuff in the best possible way. He asked me if I had made any more enquiries about help and we discussed that. He is the doctor at the nursing home we have visited and we agreed that at the moment we can do no more. His last comment was that he would expect him to worsen in the next six months! I know but I don’t look that far ahead.
Not looking ahead is the best thing we can do after making a few emergency plans. It was good to have someone listen though, could you kidnap him next time. You would make a fortune hiring him out!
I think a lot of the problems are being made worse by lack of hearing what we are saying.

Take care, love Alice
 

jenniferjean

Registered User
Apr 2, 2016
760
Basingstoke, Hampshire
The doctor observed that he wasn’t heavy breathing during the consultation but he said he knew that he would do it at home with me.
With us it's not just at home. While visiting my daughter last week my husband was doing it there. My daughter was quite concerned. I couldn't tell her much only that he doesn't do it all the time. At least now I can tell her that it is a known condition with dementia. Thanks for telling me.
 

Grahamstown

Registered User
Jan 12, 2018
1,711
80
East of England
With us it's not just at home. While visiting my daughter last week my husband was doing it there. My daughter was quite concerned. I couldn't tell her much only that he doesn't do it all the time. At least now I can tell her that it is a known condition with dementia. Thanks for telling me.
He certainly does the heavy breathing with our daughter and son, not so much with friends or other people, nor so much when he is watching tv and absorbed which is not that often. He has had his chest checked out for anything bad but it is always clear. These silly symptoms are a bit like crying wolf, but I think I would know if he was ill. I forgot to add that the doctor has stopped his drugs now as being not much use which is the main reason we went to check on. He is doing exactly what happens to people with this disease and there is no stopping it.