feeling so scared at times how i am going to cope!!

[Trapisha]

Sometimes i feel as though i won't be able to handle this and get really frightened of what will come
next!! on other days i think i will be ok when it gets worse does anyone else feel like this? Mom still
able to go out with me but can tell its got worse from last year do you think we eventually come to terms with this awful illness?

 

[jaymor]

I think we do come to terms with it. We plod on doing what we have to and that’s coping. . I think it helps enormously if we can. It’s not quite the saying ‘ ignorance is bliss ‘ but much easier to accept what is happening today and not think about what might happen tomorrow or next year. Deal with it when it comes and when you can’t deal with it source some help even if it’s only to talk to someone about it. So we deal with today, we leave tomorrow and next year until their due dates.

 

[Rolypoly]

I think we do come to terms with it. We plod on doing what we have to and that’s coping. . I think it helps enormously if we can. It’s not quite the saying ‘ ignorance is bliss ‘ but much easier to accept what is happening today and not think about what might happen tomorrow or next year. Deal with it when it comes and when you can’t deal with it source some help even if it’s only to talk to someone about it. So we deal with today, we leave tomorrow and next year until their due dates.

Sound advice.

I am aware of what may be to come with mum but I don’t dwell on it as I don’t know exactly when, or even if, it will happen. I have already dealt with yesterday and I cope with today the best I can. Tomorrow doesn’t yet exist so it can wait.

 

[Spamar]

Agree with the others. Deal with what’s happening now, leave the future. No two pwd have the same symptoms, why worry about something that might not happen.
As an example, OH was never a wanderer. Neither did he move things around, or tear things up.

 

[Trapisha]

I think we do come to terms with it. We plod on doing what we have to and that’s coping. . I think it helps enormously if we can. It’s not quite the saying ‘ ignorance is bliss ‘ but much easier to accept what is happening today and not think about what might happen tomorrow or next year. Deal with it when it comes and when you can’t deal with it source some help even if it’s only to talk to someone about it. So we deal with today, we leave tomorrow and next year until their due dates.

Thank you for your reply it does help talking to someone dealing with same xx

 

[Trapisha]

Agree with the others. Deal with what’s happening now, leave the future. No two pwd have the same symptoms, why worry about something that might not happen.
As an example, OH was never a wanderer. Neither did he move things around, or tear things up.

Yes you are right mom doesn't wander or do strange things yet anyway !! its just no memory
at moment xx

 

[Amy in the US]

Sometimes i feel as though i won't be able to handle this and get really frightened of what will come
next!! on other days i think i will be ok when it gets worse does anyone else feel like this?

Oh, yes, @Trapisha, I definitely know that feeling.

It was worst before my mother was diagnosed and I didn't know what was wrong with her and was desperately trying to manage things, and also right after her diagnosis when I started learning about dementia and Alzheimer's.

Now my emotions have settled down quite a lot and I can usually be calmer. I don't know if this is acceptance, or I'm just more used to it, or I've learned more and so am not so frightened of the unknown, or I'm coping better, or all or none of the above, but it's definitely better. It was a struggle, though.

It is important to remember that there are different types of dementia and each person who has dementia, isn't necessarily going to experience all the symptoms, behaviors, and problems that others do. Also, each person may have other factors that will influence their experience with dementia, such as other medical problems. It's so individual.

If you can manage it, taking each day as it comes is a good idea.

 

[Tralouise]

Oh, yes, @Trapisha, I definitely know that feeling.

It was worst before my mother was diagnosed and I didn't know what was wrong with her and was desperately trying to manage things, and also right after her diagnosis when I started learning about dementia and Alzheimer's.

Now my emotions have settled down quite a lot and I can usually be calmer. I don't know if this is acceptance, or I'm just more used to it, or I've learned more and so am not so frightened of the unknown, or I'm coping better, or all or none of the above, but it's definitely better. It was a struggle, though.

It is important to remember that there are different types of dementia and each person who has dementia, isn't necessarily going to experience all the symptoms, behaviors, and problems that others do. Also, each person may have other factors that will influence their experience with dementia, such as other medical problems. It's so individual.

If you can manage it, taking each day as it comes is a good idea.

Oh, yes, @Trapisha, I definitely know that feeling.

It was worst before my mother was diagnosed and I didn't know what was wrong with her and was desperately trying to manage things, and also right after her diagnosis when I started learning about dementia and Alzheimer's.

Now my emotions have settled down quite a lot and I can usually be calmer. I don't know if this is acceptance, or I'm just more used to it, or I've learned more and so am not so frightened of the unknown, or I'm coping better, or all or none of the above, but it's definitely better. It was a struggle, though.

It is important to remember that there are different types of dementia and each person who has dementia, isn't necessarily going to experience all the symptoms, behaviors, and problems that others do. Also, each person may have other factors that will influence their experience with dementia, such as other medical problems. It's so individual.

If you can manage it, taking each day as it comes is a good idea.

Oh, yes, @Trapisha, I definitely know that feeling.

It was worst before my mother was diagnosed and I didn't know what was wrong with her and was desperately trying to manage things, and also right after her diagnosis when I started learning about dementia and Alzheimer's.

Now my emotions have settled down quite a lot and I can usually be calmer. I don't know if this is acceptance, or I'm just more used to it, or I've learned more and so am not so frightened of the unknown, or I'm coping better, or all or none of the above, but it's definitely better. It was a struggle, though.

It is important to remember that there are different types of dementia and each person who has dementia, isn't necessarily going to experience all the symptoms, behaviors, and problems that others do. Also, each person may have other factors that will influence their experience with dementia, such as other medical problems. It's so individual.

If you can manage it, taking each day as it comes is a good idea.

I

 

[Tralouise]

Your story definitely hit a nerve. That's how I feel - my emotions are everywhere and I'm scared - I hope when we get a diagnosis things will feel better? Mums been in hospital 6 months

 

[Trapisha]

I think we do come to terms with it. We plod on doing what we have to and that’s coping. . I think it helps enormously if we can. It’s not quite the saying ‘ ignorance is bliss ‘ but much easier to accept what is happening today and not think about what might happen tomorrow or next year. Deal with it when it comes and when you can’t deal with it source some help even if it’s only to talk to someone about it. So we deal with today, we leave tomorrow and next year until their due dates.

Oh, yes, @Trapisha, I definitely know that feeling.

It was worst before my mother was diagnosed and I didn't know what was wrong with her and was desperately trying to manage things, and also right after her diagnosis when I started learning about dementia and Alzheimer's.

Now my emotions have settled down quite a lot and I can usually be calmer. I don't know if this is acceptance, or I'm just more used to it, or I've learned more and so am not so frightened of the unknown, or I'm coping better, or all or none of the above, but it's definitely better. It was a struggle, though.

It is important to remember that there are different types of dementia and each person who has dementia, isn't necessarily going to experience all the symptoms, behaviors, and problems that others do. Also, each person may have other factors that will influence their experience with dementia, such as other medical problems. It's so individual.

If you can manage it, taking each day as it comes is a good idea.

Thank you Amy thats nice to know i know that at first when it was diagnosed i was a
lot worse than now i suffered panic attacks and very bad anxiety but calmer now after
having anti anxiety meds or i am getting used to it, i just have moments of dread but
as you say its different for everyone and you can only take one day at a time xx

 

[MaNaAk]

Thank you for your reply it does help talking to someone dealing with same xx

Dear Trapisha,

After a bad day I tell myself that tomorrow could be a better day and looking back over the last two years since dad's diagnosis or to be more exact three years I remember I used to be terrified of any new symptoms but now I am used to them. I think you should take one day at a time and deal witheach situation as they happen. Some things may not happen so try living for today after all you and your mum have come so far so you will be able to go further.

MaNaAk

 

[Helly11]

Hi Trapisha, I know exactly what you mean. I can go from utter fear and despair one minute to feeling as I can cope with anything the next. I think MaNaAk makes a good point. When I look back at what my sister and I have dealt with in the last 18 months - both our parents have dementia - I am amazed at what we have coped with. If anybody had told me what was to come, and that we would get through it, I wouldn't have believed them. I have to trust that the same is true of whatever is to follow.

 

[Tralouise]

Hello helly11,

I've only joined today, so I don't have much experience but my heart goes out to
you, 2 parents with dementia must be so tough at times!

 

[Trapisha]

Dear Trapisha,

After a bad day I tell myself that tomorrow could be a better day and looking back over the last two years since dad's diagnosis or to be more exact three years I remember I used to be terrified of any new symptoms but now I am used to them. I think you should take one day at a time and deal witheach situation as they happen. Some things may not happen so try living for today after all you and your mum have come so far so you will be able to go further.

MaNaAk

Thank you MaNaAk for that reply you have made me feel a little better i always look on
worse situations and expect them to happen, but as you say it may be different for everyone
i know there are a lot of people going through this awful illness and its not just me you just think
you are the only one at times xx

 

[Trapisha]

Hi Trapisha, I know exactly what you mean. I can go from utter fear and despair one minute to feeling as I can cope with anything the next. I think MaNaAk makes a good point. When I look back at what my sister and I have dealt with in the last 18 months - both our parents have dementia - I am amazed at what we have coped with. If anybody had told me what was to come, and that we would get through it, I wouldn't have believed them. I have to trust that the same is true of whatever is to follow.

Yes thank you for reply maybe we are stronger than we think! The dread moment are
horrible but they do pass xx

 

[Whisperer]

When I first started to care for my mum I joined this site and to be frank it was a big emotional mistake. The only threads I saw were all late stage situations, posted by people facing very difficult situations. It really was a shock to the system and was deeply worrying and upsetting. As others have said no two people with dementia have the exact same journey. I am now three years in, mum is doing relatively well, is safe and happy at home.

The biggest worry stones for me was what if that happens, or how long is a piece of string when trying to predict the future. Luckily I met a local representative from the Alzheimer’s society and a lengthy chat gave me a better grip on the situation. I still get anxious and deeply worrying moments, but I tell myself deal with what is in front of me and do not paint future pictures. Ultimately there is no knowing the future, all I can do is my best in any given moment. Embrace the here and now. The human imagination is very create, both positively and negatively.

Caring for a PWD is the toughest thing I have ever done in my life to date. There are no ready to reach for guidance manuals, you have difficult emotions bubble up, the reaction of others can be an eye opener, you find yourself telling less than the whole truth to the PWD which made me uncomfortable, loneliness can be an issue or at least a sense of isolation. Deep down you have to ask yourself do you want to be a carer with all that comes with it, look the other way, behave like a helicopter, etc. I made my choice and recognising I will always do more good than harm gives me a positive outlook I can normally rediscover after a period of self doubt, anxiety, etc. Bad feelings, experiences and emotions will arise, but each time they are overcome you get a little extra strength and confidence.

In short there are going to be bad days in the future. All Carers have to deal with them. Stress, anxiety, low feelings, etc, are the human price to be paid for being a carer. Being aware of them allows us to not get totally overwhelmed by them. Bad moments, days, are going to happen. Do not beat yourself up.

Two tips given to me might help. Select a piece of music, song, picture, poem, etc, which has in the past brought you joy. When you get a bad patch remember it and reach for it. If linked to a good memory the feelings and emotions should come through. The mind can normally only hold one emotion at a time. Push a positive one in. Secondly try keeping a journal you write up at the end of the day. You may have felt worried earlier, anxiety caused by something, etc. Here you are at the end of the day. How do you feel now and be honest. Writing down feelings and concerns I find helps get them into perspective. Sounds odd and I was doubtful when told to try this, but somehow it seems to work. Negative emotions seem to shrink when recorded in writing. Do not over write, a few minutes only. Refer back in the future and see if any patten emerges?

Best of luck and good fortune in the future, anyone who reads this. None of our journeys will be easy. I would rather be on it though, than face myself after my mum has gone and admit I was someone who looked away, expected others to step in, etc. Take care all of you touched by this dreadful illness.

 

[Trapisha]

When I first started to care for my mum I joined this site and to be frank it was a big emotional mistake. The only threads I saw were all late stage situations, posted by people facing very difficult situations. It really was a shock to the system and was deeply worrying and upsetting. As others have said no two people with dementia have the exact same journey. I am now three years in, mum is doing relatively well, is safe and happy at home.

The biggest worry stones for me was what if that happens, or how long is a piece of string when trying to predict the future. Luckily I met a local representative from the Alzheimer’s society and a lengthy chat gave me a better grip on the situation. I still get anxious and deeply worrying moments, but I tell myself deal with what is in front of me and do not paint future pictures. Ultimately there is no knowing the future, all I can do is my best in any given moment. Embrace the here and now. The human imagination is very create, both positively and negatively.

Caring for a PWD is the toughest thing I have ever done in my life to date. There are no ready to reach for guidance manuals, you have difficult emotions bubble up, the reaction of others can be an eye opener, you find yourself telling less than the whole truth to the PWD which made me uncomfortable, loneliness can be an issue or at least a sense of isolation. Deep down you have to ask yourself do you want to be a carer with all that comes with it, look the other way, behave like a helicopter, etc. I made my choice and recognising I will always do more good than harm gives me a positive outlook I can normally rediscover after a period of self doubt, anxiety, etc. Bad feelings, experiences and emotions will arise, but each time they are overcome you get a little extra strength and confidence.

In short there are going to be bad days in the future. All Carers have to deal with them. Stress, anxiety, low feelings, etc, are the human price to be paid for being a carer. Being aware of them allows us to not get totally overwhelmed by them. Bad moments, days, are going to happen. Do not beat yourself up.

Two tips given to me might help. Select a piece of music, song, picture, poem, etc, which has in the past brought you joy. When you get a bad patch remember it and reach for it. If linked to a good memory the feelings and emotions should come through. The mind can normally only hold one emotion at a time. Push a positive one in. Secondly try keeping a journal you write up at the end of the day. You may have felt worried earlier, anxiety caused by something, etc. Here you are at the end of the day. How do you feel now and be honest. Writing down feelings and concerns I find helps get them into perspective. Sounds odd and I was doubtful when told to try this, but somehow it seems to work. Negative emotions seem to shrink when recorded in writing. Do not over write, a few minutes only. Refer back in the future and see if any patten emerges?

Best of luck and good fortune in the future, anyone who reads this. None of our journeys will be easy. I would rather be on it though, than face myself after my mum has gone and admit I was someone who looked away, expected others to step in, etc. Take care all of you touched by this dreadful illness.

Lovely advice xx Thank you xx

 

[Trapisha]

Your story definitely hit a nerve. That's how I feel - my emotions are everywhere and I'm scared - I hope when we get a diagnosis things will feel better? Mums been in hospital 6 months

Im sure they will i was just the same up and down but think we will get stronger xx

 

[Helly11]

Hello helly11,

I've only joined today, so I don't have much experience but my heart goes out to
you, 2 parents with dementia must be so tough at times!

Hi Tralouise, thanks for your kind message. At the moment, it is tough all of the time, unfortunately! Our parents' needs are changing faster than we can address them and it is hard to know what to do next. I allow myself a wry smile, when I think back to when we only had one parent with dementia and realise that those were the good times!