glad to have found this forum Elderly Mum diagnosed with Alzheimer's just a few months ago. She lives alone but with carers coming in daily and although we have good support from Social Services, I struggle to cope with seeing her condition worsen when she was previously so mentally able. Other family are coping better with the ongoing deterioration.
Hi, I'm new here
- Thread starter notwodaysthesame
- Start date
Welcome @notwodaysthesame
It`s a very steep learning curve and upsetting to witness.
Just try to keep in your mind that your mother needs you now more than ever.
I hope by sharing your upset and receiving support from other carers it will help you feel less alone and more able to cope.
It`s a very steep learning curve and upsetting to witness.
Just try to keep in your mind that your mother needs you now more than ever.
I hope by sharing your upset and receiving support from other carers it will help you feel less alone and more able to cope.
thankyou Grannie G, I can see from posts that others are in a much more difficult position. I need to try to keep perspective
Welcome from me too @notwodaysthesame.
It's very early days for you and I understand that it must be hard for you t come to terms with. I see from your profile that you're in Scotland so I hope your mum is also getting good support from a post diagnositc support worker.
It's good that you've found this forum. It's a good place to share your feelngs. People here will understand.
It's very early days for you and I understand that it must be hard for you t come to terms with. I see from your profile that you're in Scotland so I hope your mum is also getting good support from a post diagnositc support worker.
It's good that you've found this forum. It's a good place to share your feelngs. People here will understand.
Hi @notwodaysthesame - I’m a newbie on here too (just trying to find my way around) my elderly dad was diagnosed last august. And he too lives alone. I struggle seeing him deteriorate . He seems to have reasonably good days but others are quite hard. I manage to juggle my job whilst keeping an eye on him but I dread for the future. It’s horrible up watch isn’t it 😕
Hi Notwodaysthesame. I have also found the different coping strategies and the differences in the ability of different people (including myself) to to accept the situation a particularly difficult and confusing aspect of caring for a family member that is deteriorating. It is disorientating and isolating.
I found that a lot of the feelings of not being able to cope stem from the fear and resistance associated with being unable to accept the situation as it is.
I've been working on my own ability and willingness to accept all sub optimal situations (not just this one) as they are now for a couple of years, and thankfully it is starting to pay off. As this is a progressive and unpredictable condition, we will sadly have more and more difficulties to come to terms with as time goes on. My thoughts on this may not help you, but I thought if I was to share my experiences it might offer a little bit of reassurance or perhaps a seed of hope.
It began with me acknowledging that being unable or unwilling to accept a situation will not change it, it will certainly make it harder for me to do what is necessary to improve the situation, and will ultimately only cause me more suffering as the moments of 'peace' where I choose to distract myself or bury my head in denial are inevitably shattered at frequent and unpredictable intervals and having to re-live that initial shock and fear and all the other distressing emotions that are associated with each 'new' realisation where I am forced to face up to reality for a while, outweighed the benefit of the less troubling times where I was unable to hide from the truth.
Once that belief had solidified I started (with the guidance and help of a meditation teacher I met a few times online for brief 15 minute consultations) to spend a few minutes each day contemplating the quality of acceptance. I would sit and with my eyes closed whisper to myself or just say in my head that I am a person who accepts people and things as they are, and similar phrases like that. I would also think of other people that I admired, who I perceived to have this quality and picture them and spend time thinking about how their ability to accept things benefited them and others. It felt unnatural and uncomfortable to start with but with time I got used to it and it became a familiar and comforting practice that felt 'right' for me to do and very reassuring.
With time (months) I noticed a reduction in the strong feelings I had of wanting to escape the knowledge of and reality of certain adverse situations, and I began to notice those feelings for what they were and was able to view them more objectively rather than getting lost in them. My mind is clearer and I find it easier to focus on solutions or sensible thoughts rather than just panicking and seeking distractions or other forms of relief.
Now when I notice these feelings of resistance I can just say to the word "acceptance" a few times silently to myself and it creates a short cut to all those helpful contemplations and I feel instantly calmer and less fearful. It didn't happen over night and there are times I still struggle with thoughts of wanting to retreat into denial or escape certain situations, but it happens less often and I do feel more confident and in control now as a result.
I have also found that I am now better able to recognise when others are struggling to accept certain things, and understand their behaviour more easily, which I would have previously just found baffling and very distressing.
Are you able to articulate any particular aspects or ways in which you feel you are struggling to cope? Would you say there were any particular emotions or situations that particularly de-rail you, or are the practical aspects such as the time management, or prioritising bigger issues?
I find it helpful sometimes to go through the things that are bothering me most and try to identify what struggle would make the biggest difference if I could just 'crack it' or even just improve that issue temporarily in some small way if I know it is not something I will every fully resolve. Sometimes I need to talk this out with one or more people in order to get to that point, and for that I have found the helpline incredibly helpful as I get the feeling there is nothing I could say that they would not have heard or experienced before so I don't feel there is any risk of shocking or upsetting them which is a worry I always have in the back of my mind when talking to friends and family.
I found that a lot of the feelings of not being able to cope stem from the fear and resistance associated with being unable to accept the situation as it is.
I've been working on my own ability and willingness to accept all sub optimal situations (not just this one) as they are now for a couple of years, and thankfully it is starting to pay off. As this is a progressive and unpredictable condition, we will sadly have more and more difficulties to come to terms with as time goes on. My thoughts on this may not help you, but I thought if I was to share my experiences it might offer a little bit of reassurance or perhaps a seed of hope.
It began with me acknowledging that being unable or unwilling to accept a situation will not change it, it will certainly make it harder for me to do what is necessary to improve the situation, and will ultimately only cause me more suffering as the moments of 'peace' where I choose to distract myself or bury my head in denial are inevitably shattered at frequent and unpredictable intervals and having to re-live that initial shock and fear and all the other distressing emotions that are associated with each 'new' realisation where I am forced to face up to reality for a while, outweighed the benefit of the less troubling times where I was unable to hide from the truth.
Once that belief had solidified I started (with the guidance and help of a meditation teacher I met a few times online for brief 15 minute consultations) to spend a few minutes each day contemplating the quality of acceptance. I would sit and with my eyes closed whisper to myself or just say in my head that I am a person who accepts people and things as they are, and similar phrases like that. I would also think of other people that I admired, who I perceived to have this quality and picture them and spend time thinking about how their ability to accept things benefited them and others. It felt unnatural and uncomfortable to start with but with time I got used to it and it became a familiar and comforting practice that felt 'right' for me to do and very reassuring.
With time (months) I noticed a reduction in the strong feelings I had of wanting to escape the knowledge of and reality of certain adverse situations, and I began to notice those feelings for what they were and was able to view them more objectively rather than getting lost in them. My mind is clearer and I find it easier to focus on solutions or sensible thoughts rather than just panicking and seeking distractions or other forms of relief.
Now when I notice these feelings of resistance I can just say to the word "acceptance" a few times silently to myself and it creates a short cut to all those helpful contemplations and I feel instantly calmer and less fearful. It didn't happen over night and there are times I still struggle with thoughts of wanting to retreat into denial or escape certain situations, but it happens less often and I do feel more confident and in control now as a result.
I have also found that I am now better able to recognise when others are struggling to accept certain things, and understand their behaviour more easily, which I would have previously just found baffling and very distressing.
Are you able to articulate any particular aspects or ways in which you feel you are struggling to cope? Would you say there were any particular emotions or situations that particularly de-rail you, or are the practical aspects such as the time management, or prioritising bigger issues?
I find it helpful sometimes to go through the things that are bothering me most and try to identify what struggle would make the biggest difference if I could just 'crack it' or even just improve that issue temporarily in some small way if I know it is not something I will every fully resolve. Sometimes I need to talk this out with one or more people in order to get to that point, and for that I have found the helpline incredibly helpful as I get the feeling there is nothing I could say that they would not have heard or experienced before so I don't feel there is any risk of shocking or upsetting them which is a worry I always have in the back of my mind when talking to friends and family.
Hi NatalieJ, what incredible strengths you have learnt to enable you to manage your current situation.
Thank you for sharing.
Hello Notwodaysthe same, everyone else on the forum will feel your emotional pain, watching someone you love deteriorate.
Hopefully you will obtain support and advice and some insightful similarities from individuals on this forum.
My mum was only diagnosed 3 weeks ago with Vascular Dementia, but I've been on the forum since January. Reading stories, hearing advice and obtaining information has helped me immensely.
So keep posting and asking questions.
We are all on the same journey and can help each other.
Thank you for sharing.
Hello Notwodaysthe same, everyone else on the forum will feel your emotional pain, watching someone you love deteriorate.
Hopefully you will obtain support and advice and some insightful similarities from individuals on this forum.
My mum was only diagnosed 3 weeks ago with Vascular Dementia, but I've been on the forum since January. Reading stories, hearing advice and obtaining information has helped me immensely.
So keep posting and asking questions.
We are all on the same journey and can help each other.
Hi Izzy, thankyou for your post.
Yes the post diagnostic support has been put in place and we have been made aware of local carer support events.
Mum's OT has been working with us since Mum was discharged from hospital last year following a hip replacement. It was during that hospital stay that professional concerns were raised about her memory
I do think this forum is going to help me
Yes the post diagnostic support has been put in place and we have been made aware of local carer support events.
Mum's OT has been working with us since Mum was discharged from hospital last year following a hip replacement. It was during that hospital stay that professional concerns were raised about her memory
I do think this forum is going to help me
Hallo Pammie A and thankyou for your post
I already feel less alone just reading replies to my post
I'm grateful for your message
I already feel less alone just reading replies to my post
I'm grateful for your message
Wow Natalie J, thankyou for your indepth reply. I'll take time to read it through, I wanted to say thankyou at this stage
Hi Shazbag and thankyou for replying. I am so glad to have found this forum and can speak to people in the same boat. I no longer work so I have the benefit of free time. Looking to the future frightens me too
