Although I have found everyone's replies to my posts very helpful and supportive and have had my eyes opened to a wider scenario for caring for someone with dementia I am getting a little concerned about my reactions. I seem be be sensing there's no hope. That things will gang up on you. I am not in the desperate situation some find themselves in but fear for the future. Is it downhill all the way with all types of dementia? I have a lot of empathy for those posting and it hurts 'cos you care. But I still need the support of the site as I have very few people to talk to about Mum's situation. Have others gone through this range of emotions?
Thinking of not reading anymore posts
- Thread starter lonelyson
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I dont think your range of emotions is unusual
not all types of dementia are progressive
I have subcortical vascular dementia and my mantra is dont curse the darkness - light a candle, live life to the full,
not all types of dementia are progressive
I have subcortical vascular dementia and my mantra is dont curse the darkness - light a candle, live life to the full,
I think most people find that at times the deluge of bad news that can be posted on a site like this can be overwhelming, and that there comes a point in time where you have to withdraw for your own sense of well being, at least for the short term. However, you should bear in mind the oft quoted phrase "when you've seen one person with dementia, you've seen one person with dementia" . Every person's journey is different and you can't assume that just because someone is the same age, or the same sex, or has the same diagnosis or even the same pattern of behaviour that their dementia will progress in the same way.
I do understand the desire to "read ahead" as it were, because most of us prefer to have some idea of what is going to happen, but really, it can be unhelpful sometimes. There are some things that it can be useful to know and to have in the back of your mind (I would say the most pertinent is the fact that an infection of any kind can cause a dramatic downturn in capabilities, but other people may have other ideas). On the whole, though, while reading various posts can give you ideas and mostly that is helpful, sometimes such posts will give you the screaming abdabs. It's at that point that many people retreat to the Tea Room for light relief, or they just focus on posting their own threads.
I think it can be particularly shocking to realize just how many people there are out there who are affected by dementia. It's still in many ways a hidden disease and then you come here and fine hundreds and hundred of people dealing with it. It has to be a shock to the system.
Take care and keep posting (even if you aren't up to reading at this time).
Best wishes
I do understand the desire to "read ahead" as it were, because most of us prefer to have some idea of what is going to happen, but really, it can be unhelpful sometimes. There are some things that it can be useful to know and to have in the back of your mind (I would say the most pertinent is the fact that an infection of any kind can cause a dramatic downturn in capabilities, but other people may have other ideas). On the whole, though, while reading various posts can give you ideas and mostly that is helpful, sometimes such posts will give you the screaming abdabs. It's at that point that many people retreat to the Tea Room for light relief, or they just focus on posting their own threads.
I think it can be particularly shocking to realize just how many people there are out there who are affected by dementia. It's still in many ways a hidden disease and then you come here and fine hundreds and hundred of people dealing with it. It has to be a shock to the system.
Take care and keep posting (even if you aren't up to reading at this time).
Best wishes
I must admit I like this forum because it gives me something else to focus on, to try and see if there's any solutions for others problems, or it makes me feel better if I can make someone else feel better.
Admittedly I vent (and did get scolded for my bad language recently, but fair), but that is something I do to protect myself from storing too much stress.
The other reason I find this forum comforting is for me, it's information I can't really get anywhere else. I tried to read books about alzheimers and dementia, back when Granddad was alive, but I couldn't cope with them because when stressed my reading ability sucks (really tricky when you're a bibliophile).
But now I've gotta go to the library and choose out some phrase books, I wanna learn Italian.
Admittedly I vent (and did get scolded for my bad language recently, but fair), but that is something I do to protect myself from storing too much stress.
The other reason I find this forum comforting is for me, it's information I can't really get anywhere else. I tried to read books about alzheimers and dementia, back when Granddad was alive, but I couldn't cope with them because when stressed my reading ability sucks (really tricky when you're a bibliophile).
But now I've gotta go to the library and choose out some phrase books, I wanna learn Italian.
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I think you make a very good point. I do pull away from TP at times for several reasons:
Sometimes it is just too sad.
Sometimes I am just so tied up in my own woes I cannot handle anyone elses.
I can't stand the squabbles.
I read but cannot bring myself to reply.
But the point it that I keep coming back because:
I need it.
I need to release the negative/guilty feelings I have at times.
I need the support and guidance it.
I need to be one step ahead as mum's disease progresses.
I have been lucky so far that as now we are entering mum's 9th year with Alzheimers. She is 86 but can still shuffle around, no incontinence issues (apart from with a UTI), she can dress herself, make a cup of tea, and TBH is very easy going - no agression. Having said that I still feel totally dragged down by looking after her. However, I have learnt that everybody's journey is different.
TP is the one place you can be totally selfish. Use it as and when you need it.
Sounds like you are quite down at the moment.
Sue
Sometimes it is just too sad.
Sometimes I am just so tied up in my own woes I cannot handle anyone elses.
I can't stand the squabbles.
I read but cannot bring myself to reply.
But the point it that I keep coming back because:
I need it.
I need to release the negative/guilty feelings I have at times.
I need the support and guidance it.
I need to be one step ahead as mum's disease progresses.
I have been lucky so far that as now we are entering mum's 9th year with Alzheimers. She is 86 but can still shuffle around, no incontinence issues (apart from with a UTI), she can dress herself, make a cup of tea, and TBH is very easy going - no agression. Having said that I still feel totally dragged down by looking after her. However, I have learnt that everybody's journey is different.
TP is the one place you can be totally selfish. Use it as and when you need it.
Sounds like you are quite down at the moment.
Sue
Hiya Lonelyson,
I think at times you have to be picky on TP...read the bits that help, and skim the rest.
Strikes me that you have got quite a long way down the dementia road with your mum without being overwhelmed, and I guess it could well go on like that...some of it is down to personality. None of us know what tomorrow holds,enjoy the moment and don't dwell on stuff that might never happen.
Amy
I think at times you have to be picky on TP...read the bits that help, and skim the rest.
Strikes me that you have got quite a long way down the dementia road with your mum without being overwhelmed, and I guess it could well go on like that...some of it is down to personality. None of us know what tomorrow holds,enjoy the moment and don't dwell on stuff that might never happen.
Amy
I agree. Sometimes I only look at the thread/post titles and can't go into them. Other times I can read everything and try to reply where I can. Other times I only go in to see if there are replies to my current thread. I think it all depends on how you feel. I hope you keep posting - I know you will get support. x
Hi lonelyson
I know what you mean, reading some posts I worry that things are going too well!
I have bad days & good days just as dad does, there are sunny days & dark days
I am learning to celebrate the good & not dwell on the bad
I do find this site to be a wealth of information & thou I dont always reply I find for me it helps
I have been writing a Blog of my journey & found it to be easier to say what I feel on there where you can't always say it to family & friends
remember to take care of you in the midst of all this
Gill
I know what you mean, reading some posts I worry that things are going too well!
I have bad days & good days just as dad does, there are sunny days & dark days
I am learning to celebrate the good & not dwell on the bad
I do find this site to be a wealth of information & thou I dont always reply I find for me it helps
I have been writing a Blog of my journey & found it to be easier to say what I feel on there where you can't always say it to family & friends
remember to take care of you in the midst of all this
Gill
wearing black
I think reading about dealing with someone with dementia is like wearing black, sometimes it seems a little too dark and sometimes it just highlights the brightness surrounding it.
Sue.
I think reading about dealing with someone with dementia is like wearing black, sometimes it seems a little too dark and sometimes it just highlights the brightness surrounding it.
Sue.
When all else seems black, The Tea Room, in The Lounge forum is generally lighter hearted. Sometimes the posts on this forum can be fairly heavy going, but it is to everyones credit that so many people get help with their problems and sometimes it is by reading other peoples posts that you realise your life is not too bad and while the threat of the unknown is there; it is only that, a threat which may or may not develop some time in the future. I belong to the school of thought which has led me to find out as much as possible, so that I can take away a lot of the daily distress of my mother so that when she asks about something I can tell her it's OK, it's normal, it's in hand and so on. Each to their own is the best motto, there is no right and no wrong. In so many of the daily horror stories, there can be funny bits too. so we laugh and cry together, and yes sometimes we stay away for a while, but there is always someone here if you need it. Keep in touch, Maureen.x.
I had a day last week when all the sadness on the forum got to me but I took a bit of time out, was sellective of what i read (mainly stayed in the Tea Room) and had some lovely supportive posts and PMs from other members. The truth is we are all living with the horror of dementia in our lives It is unfortunately a sad illness and comes with many challenges and battles, but in amongst the sadness and the fear and the loss there are brighter moments, some good times and some memories to treasure and share with others who will genuinely understand.
I hope you continue to read posts, even if you are sellective in what you read.I hope you will also feel able to share your journey with us and allow us to support you as best we can.
Dealing with dementia can be a very lonely experience but this forum allows us to be 'alone' together.
Karen x
I hope you continue to read posts, even if you are sellective in what you read.I hope you will also feel able to share your journey with us and allow us to support you as best we can.
Dealing with dementia can be a very lonely experience but this forum allows us to be 'alone' together.
Karen x
I have Aspergers Syndrome (a form of autism) and don't relate to people in the standard emotional way, so when I read a lot of the caring posts it makes me feel completely inadequate and evil almost! I can only really relate to my father in a practical duty-based manner; I don't really feel any love or affection for him and he can wind me up into a temper very easily. When I read about the endless patience, care and kindness that other people on here are offering daily in circumstances far beyond anything I could ever cope with it makes me feel ashamed and deficient in emotion. That is why I can often avoid the site - it feels as if people are talking a different language to me. I only really like reading the posts about practical/factual matters like LPA's and medical things - posts where I can learn new things or possibly offer advice. My brain is logical, not empathetic so I try to stick to my forte. If I tried to do a 'caring, sharing' type post people would sense it was fake in my opinion so there's no point; in fact I wouldn't even know how to do one - it really is alien territory to me; the emotion has to be there in the first place. It's not that I don't want to support people, it's just that I don't have the capacity to offer that type of emotional support.
As regards your worry about the progression of the dementia, In my experience it doesn't help to try and second-guess the future - you can't ever know for sure how a person's condition will progress so it's best to focus on practical matters in the here and now and try not to burden yourself with extra worry.
For example this evening I was trying to work out exactly how long my father's income will cover his outgoings - it's very worrying as you can't know how much fees will go up or whether investments will depreciate. This is worry but more practical, necessary worry.
As regards your worry about the progression of the dementia, In my experience it doesn't help to try and second-guess the future - you can't ever know for sure how a person's condition will progress so it's best to focus on practical matters in the here and now and try not to burden yourself with extra worry.
For example this evening I was trying to work out exactly how long my father's income will cover his outgoings - it's very worrying as you can't know how much fees will go up or whether investments will depreciate. This is worry but more practical, necessary worry.
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Many thanks
Your responses have been very touching and thoughtful. Going through a new set of firsts at present. Respite care after a fall, first dealings with a care home setting, mum's sense of betrayal, isolation, new key social worker, care package decisions, etc. Plus I am a new member to this forum and forum's in general. Think I jumped right in there and got a bit too immersed with reading too much stuff too soon. Thanks for your support and advice. Need to go see Mum and reassure myself that she is o.k. so I can really have a bit of respite.
p.s. Does anyone have any experience of caring for someone with spondylolis of the spine as Mum can be reduced to tears and needs to get out of her chair. Not good with screws and plates in her femur
Your responses have been very touching and thoughtful. Going through a new set of firsts at present. Respite care after a fall, first dealings with a care home setting, mum's sense of betrayal, isolation, new key social worker, care package decisions, etc. Plus I am a new member to this forum and forum's in general. Think I jumped right in there and got a bit too immersed with reading too much stuff too soon. Thanks for your support and advice. Need to go see Mum and reassure myself that she is o.k. so I can really have a bit of respite.
p.s. Does anyone have any experience of caring for someone with spondylolis of the spine as Mum can be reduced to tears and needs to get out of her chair. Not good with screws and plates in her femur
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Mirror Image
Hi Lonely Son,
I have only just joined this forum and I am still finding " my feet". However I just had to reply to your post when I sensed the loneliness and despair is akin to how I sometimes feel.
I am the only child, (daughter) of a father who was diagnosed with Alzheimers in 2005. He is currently in hospital and I have to visit twice a day. I echo the comments of earlier writers. Please don't give up on the forum entirely yet.
Off to hospital now , will try and write more later. Regards Judepa64
Hi Lonely Son,
I have only just joined this forum and I am still finding " my feet". However I just had to reply to your post when I sensed the loneliness and despair is akin to how I sometimes feel.
I am the only child, (daughter) of a father who was diagnosed with Alzheimers in 2005. He is currently in hospital and I have to visit twice a day. I echo the comments of earlier writers. Please don't give up on the forum entirely yet.
Off to hospital now , will try and write more later. Regards Judepa64
I know exactly what you mean,I was quite ignorant of the effect of dementia until my Mum developed it within the past year.
I'm absolutely staggered by the numbers of people dealing with it every day and what they have to bear,far,far worse than what I have to deal with.
As yet another only child ( how many of us are there on here,and I only know a few in real life ! ) I too visit my mother in the care home twice daily.
She's bedridden and not at all aggressive so far,but it's her sheer neediness that really gets me down. Every time I'm greeted with, " Thank God you've come ! I was so afraid you wouldn't be here ! "
It's as though nobody else can possibly do things for her as well as I can,or at least that's how she perceives it. She'd have me at her bedside 24 hours a day if she could.
Now I know I'm selfish and horrible,but I can't stand her attitude,and this is the one place where I can admit that to people who understand,because if I were to say it in real life I'd be seen as a nasty,uncaring daughter.
So that's one reason why I keep on looking at the forum,but as I say,when I see what most people are coping with compared to myself,I feel quite guilty complaining. I have such admiration for everyone who supports their loved ones so unselfishly.
I'm absolutely staggered by the numbers of people dealing with it every day and what they have to bear,far,far worse than what I have to deal with.
As yet another only child ( how many of us are there on here,and I only know a few in real life ! ) I too visit my mother in the care home twice daily.
She's bedridden and not at all aggressive so far,but it's her sheer neediness that really gets me down. Every time I'm greeted with, " Thank God you've come ! I was so afraid you wouldn't be here ! "
It's as though nobody else can possibly do things for her as well as I can,or at least that's how she perceives it. She'd have me at her bedside 24 hours a day if she could.
Now I know I'm selfish and horrible,but I can't stand her attitude,and this is the one place where I can admit that to people who understand,because if I were to say it in real life I'd be seen as a nasty,uncaring daughter.
So that's one reason why I keep on looking at the forum,but as I say,when I see what most people are coping with compared to myself,I feel quite guilty complaining. I have such admiration for everyone who supports their loved ones so unselfishly.
I have such admiration for everyone who supports their loved ones full stop. It's a very hard job and although I'm no longer a carer (my mum died nearly 2 years ago) I can still remember vividly the sense of desperation and how TP got me through. I don't post as much as I used to but something still draws me back.
I agree that sometimes we need to "have a break" from TP if it all gets too much. The beauty of this forum is that is allows us to do just that, to post when we need to and to withdraw when the need takes us.
I hope you'll continue to use TP, lonelyson, and get the support and help you need.
Best wishes xx
You are right I can drop in and out and it is good to know that there is support of this kind out there. Have a meeting in half an hour or so about new, 'enhanced' care package. Hopefully we can get this implemented quickly as I want to get Mum home asap. She really is getting down and all she gets from me is a lot of negatives as just about every sentence has going home, leaving with you, take me home in it. Means I can't stay too long on my visits. It's as if she feels I am punishing her for something she's done. Anyways, she is reasonably bright when I can squeeze a joke in and I think I've got a good key worker on the team now. So fingers crossed. Will let you know.
