• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

NotTooLate blog

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Just Click the link below...

 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
👇Click the Link Below...
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
It all depends on your outlook on life, but whatever that is, we all have our allotted time. The difference will be the attitude we have to it!

Do you have a positive, or negative attitude?

 
Last edited:

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog

Not a good day for my phantoms. Not seeing more so much as hearing things. I’ve started to hear Finn, calling, a sort of little yelp. I know it’s him, but then I know it can’t be. Finn use to help me with this. If I saw, felt, smelt, heard, or sensed things, I would look at Finn and if he didn’t react, I knew I was ok, but now I don’t have my little helper.

I’m told that these are nothing that exist outside my own mind and I try to believe this. You know how when you dream, it is real, regardless of how strange, then that is what it is like for me, even when I’m awake. I take medication for this, but I don’t think it helps, it certainly doesn’t stop it.

Certain things happen often, so often that they have become normal. My Mum over my right shoulder, I don’t see her, but I sense and hear her there. My constant spies at the bottom of the garden, just behind the shed. The voices at the front door, the shadow behind the curtain in the bathroom, that is not there when I move the curtain and my morning call, ‘you got to get up, you got to get up…… I see things scurry passed, gone before I see them, the spiders, or the legs just sticking out, moving, the clicks, bumps, things moving, scratching, the breaths, sighs, moans that continually haunt me.

I think this is more of a problem, because I don’t have Finn as my spirit guide. I have no way of knowing if what I see, hear, smell, feel, sense, is real, or not. I know the more it happens and the more I become aware, the more it seems to happen, but that’s no help!

I also know that this has got worse since I started reducing the Gabapentin, so I feel that this has something to do with it.

The horrible thing is, I can’t shut them off. I can’t cover my ears, keep my eyes closed, refuse to smell, or close my mind to feelings.

I’m getting stressed and jumpy, so if anyone has any suggestions or idea, I would be very grateful? Please?
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
A Balanced Life… This is a common statement, or mantra you hear all the time, ‘You have to have a balanced life,’ but more often this refers to mainly to what you do with our lives ie, balancing work and home-life.

Although I think balance in these terms is very important, I believe that Balance is a fundamental facet that permeates every part of our lives and if we thought about it more, could and would have a big impact on how we live.

A Blanced Life

Here is an example that I’m sure you will be able to relate to.

To stay in peek condition and remain healthy, you need to have a balanced diet and exercise.
If you visualise this in terms of a set of scales, then the concept is easy to understand.




As long as your diet is good and you exercise enough, then you are at your peek, you are balanced.






If your diet is not that good, or you don’t exercise enough, or too much, then you are out of balance, you are not at your peek.


What you decide is the right balance, is up to you and this is going to be based on what you understand and believe is correct.

This is the Concept of Balance, that I think is of major importance and should applied to all facets of our lives.
Try it for yourself, just think of something that you are concerned with, work and life, what you eat, how you exercise, your mental state, your health and time spent of your phone, what you are watching, getting out and your social life etc. The list goes on…


Please let me know what you think and any comments, ideas, suggestion are always welcome!?
 
Last edited:

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
I’ve been trying, and still trying, to link up with others that suffer the symptoms of dementia, but what I have found is that there is a big difference between what is thought of as having dementia, or the symptoms of dementia.


There seems to be two clear areas, those that are living with dementia and those that are being cared for with dementia.


I believe that there is a tipping point, when the balance of neurones, our brain cells, and our ability to function shifts. This is the point where a person will go from living with dementia, to being cared for with it.


Below is a post that I talk more about this point.
The Full Article


There seems to be very little for those that are living with it and more for those being cared for.


I believe that it is vital that for those where the balance of their dementia is shifted, that care and support is given, but I believe that it is also vital, that support and care is given to those that are managing to keep their balance and are living with and maybe trying to fight their dementia.


I see things like this at the Dementia Organisation site…


https://www.dementia.org/treatment




Here it talks about prevention, but this is a minor part when compared addressing those that require care.


I’m trying to Live with my dementia. I’m terrified of getting to the point of needing to be cared for. There are days when I just start to lose the will to live and I think a lot of it is because, I feel so alone.


Is there no-one else out there that is battling this thing while they can!?




My everyday is punctuated with me teetering on some intangible and enormously high place. I feel this overwhelming urge and it wells up inside. I’m slowly climbing towards that edge and trying to keep that balance, but fighting to come back! I think this is the way my brain is telling me it needs me to fight, because it needs me to survive! It needs to maintain that balance, before it is too late and it gives up!
 

Palerider

Registered User
Aug 9, 2015
2,024
North West
I think striving for balance is important and keeps us functional, but not everyone can do this with dementia as it becomes all consuming. Unless there is adequate help and support 'balance' falls by the way in peoples lives
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Hi Palerider and thank you for taking the time to reply.

I don't know if you suffer from some form of dementia, or a carer of someone with it.

Believe me, I know what you mean by all consuming, but I have to strive for balance, but then I'm talking as someone with dementia, balance is all I have. If I lose that balance... then I'm lost!

If you are someone caring, then maybe you feel that the balance is out of your hands. I can not image the battle some carers have to go through daily trying to balance life!
 

Palerider

Registered User
Aug 9, 2015
2,024
North West
Hi Palerider and thank you for taking the time to reply.

I don't know if you suffer from some form of dementia, or a carer of someone with it.

Believe me, I know what you mean by all consuming, but I have to strive for balance, but then I'm talking as someone with dementia, balance is all I have. If I lose that balance... then I'm lost!

If you are someone caring, then maybe you feel that the balance is out of your hands. I can not image the battle some carers have to go through daily trying to balance life!
I don't have dementia, but did care for my mum. To be fair in the early stages she did have 'balance' and was very able at that, but as time went by she couldn't organise herself to achieve it so luckily she had me. I took her away to Malta in 2016 as she was desperate to have a holiday and that was great she enjoyed every bit of it. But for those of us who become carers it can be very difficult to achieve 'balance' in our lives. But each person and scenario is different
 

Lawson58

Registered User
Aug 1, 2014
2,164
Victoria, Australia
I am inclined to think that it is extremely difficult to get balance in your life when you are caring long term for a person with dementia. I can find the time to walk the dog, do the garden, mow the lawn - all good exercise. And I think I eat a good diet so that's a plus. I am retired so there is nothing to balance there with home life.

BUT the emotional toll of caring long term throws a spanner into the works often resulting in fatigue and carer burn out, a sure indication that everything was wrong, so out of balance. The scales don't really adapt to the more complex model when you include the caring and the toll it takes. Another spanner into the works is that of sacrifice and commitment, that giving up so much of your own life to care, you lose so much of yourself.
For many of us, we are not willing carers, we fell into caring because it happened slowly. The absence of an affection in their lives is a pivotal influence. and that can really rock any semblance of balance.
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Hi Lawson and thank you for your reply!

I don't know how you cope, but I suppose it comes down to, you don't have a choice and this then means balance is not down to you. When I hear these heartbreaking words, it seems that the balance was the two of you, you balanced each other in life. Now, the change comes along that you can not control and you find yourself desperately trying to keep things normal when all the time it only gets worse.

I don't want to be a burdon to anyone and cause any personal lose. I want to be able to go when I'm ready, but trouble is this thing is creeping up on me and I just think it might get me without knowing and then we are all caught out! I think this is what happens to most of us. How do I deal with this, how do I prepare? There seem to be this moment where we reach a tipping point and balance goes for all. There is no balance for the suffer, only lose, uncertainty and fear, and then there is the carer, who feels they have to care for a loved one that gave balance and meaning to their life, yet is seemingly further away each day from the person they knew and loved.

I wish you well my friend.
 

Lawson58

Registered User
Aug 1, 2014
2,164
Victoria, Australia
Hi Lawson and thank you for your reply!

I don't know how you cope, but I suppose it comes down to, you don't have a choice and this then means balance is not down to you. When I hear these heartbreaking words, it seems that the balance was the two of you, you balanced each other in life. Now, the change comes along that you can not control and you find yourself desperately trying to keep things normal when all the time it only gets worse.

I don't want to be a burdon to anyone and cause any personal lose. I want to be able to go when I'm ready, but trouble is this thing is creeping up on me and I just think it might get me without knowing and then we are all caught out! I think this is what happens to most of us. How do I deal with this, how do I prepare? There seem to be this moment where we reach a tipping point and balance goes for all. There is no balance for the suffer, only lose, uncertainty and fear, and then there is the carer, who feels they have to care for a loved one that gave balance and meaning to their life, yet is seemingly further away each day from the person they knew and loved.

I wish you well my friend.
Thank you for your words. For you to have insight into your condition is a very unusual thing. Most people with some form of dementia tend to be in denial and I think you would be the first to understand that denial probably makes it easier to get through each day. For them I suppose it is the only way they can get any sort of balance and peace into their lives.

My husband was diagnosed almost six years ago and has mostly been in denial ever since. But then he is unlike most people with dementia. My GP says that he thinks my husband is the happiest person with dementia he has ever seen. He doesn't have the insight you do but he is a high functioning individual who still plays bridge several times a week. He is now eighty years old and far more afraid of corona virus than he is of dementia.

Perhaps the insight and understanding you have will help you find a way forward though I know that won't be easy. The next few years in your life may be fruitful and fulfilling if you keep faith in yourself. Maybe making those scales go up and down a bit could add a little adventure. My dad always use to say that to defeat a monster, you first have to look him in the eye.
 

Wordy

Registered User
Mar 27, 2020
20
You say it's got worse since you have reduced the gabapentin but I wonder if that could even be the cause even though given for anxiety can alter reality as it did for my mum. It could also be withdrawal symptoms too. I advise you to contact your dr to see if there is an alternative.
Also have you considered getting an older rescue dog who would need you as much as you need support. Dog rescue centres are really struggling at the moment and could arrange a fostering placement with you.
In the meantime, try talking out loud your thoughts as this can help your reality. Anything is worth a try. I'm about tomorrow if you need to share ❤
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Good Morning Lawson….

I sorry for the delay in replying, had a few bad days, but ok now!

When you said, 'For you to have insight into your condition is a very unusual thing,’ this struck home as one of my major worries. I’m not sure how unusual this is? I certainly know that I haven’t heard off many that seem to be aware, more than this situation of denial, but if you deny something, are you acknowledging something is different, or are you truly oblivious of it?

I often wish for oblivion, but then doesn’t help those that have to deal with me in their world. If that makes sense?

You say your husband was diagnosed six years ago. Well first, this gives me hope that there is life after diagnoses, which is really different from the message I received when I got my diagnosis. However, I wanted to ask, did your husband go along with this diagnosing process, did he know something was different then? You see, I went to my doctor many years ago, about memory problems I was experiencing while I was teaching, but stress was the then preferred diagnosis.

I truly believe that if my concerns had be looked at further from the outset, I would not be in this state now, where I am disabled, deaf, have Neuralgic Amyotrophy Epilepsy, Meniere’s, addicted to too many tablets and now this final nail.

The biggest pain in all of this, is that I am aware of it all!

I’m sorry, I’m ranting again!

I haven’t met many people with dementia that are overtly happy, but then again, I haven’t met many with dementia, but I think you husband is very lucky and I envy him. You also mention that at 80, he is still a keen Bridge player. Has he always played Bridge? I certainly believe that by keeping your brain active, helps with all aspects of dementia. I wonder if this has led to this state that he is in? Keep playing Bridge I say. I use to play chess, but I cannot keep the moves in my head now, it is like they are there, but just out of reach. This does not stop me trying everything and anything I can. I believe my brain will recover, I have to believe!

Coronavirus doesn’t really worry me! Maybe it should, but I think if people stop acting out of self pity and stop acting as this is affecting them alone, then we will be ok. We are not on our own!

As you say, perhaps an insight and understanding will help me and I will not give up trying to find an answer that will work with my own dementia.

You ended with this; My dad always use to say that to defeat a monster, you first have to look him in the eye.

It made me smile, because it is so true and I referenced a quote from Terry Pratchett in one of my post:

To Beat the Monster...

Check it out, about half way down…

I thank you again for taking the time to reply and wish you and your husband happiness!
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Good Morning Wordy!

I’m sorry for the delay, not great few days, but fine now!

I’ve started a campaign to come off as much of the medication I’m on, especially the addictive stuff, that I can. I spent over six months coming off morphine and the difference is truly amazing!

It is now Gabapentin. I assumed, for some unknown reason, that this would be easier, but it is not. I’m now down to, 200, 100 and 200mg throughout the day and this is a big reduction, but now I’m stuck. The sights, sounds and feelings are constant. My tinnitus is also really bad and I think this just acts as a reminder. I know I have to drop the morning, or night dose to 100mg. It’s like standing on an edge and that feeling of I am going to fall.

Interesting you mention an alternative, I’m already on Pregabalin, which I intended to come off next.. Hate medication!

I like the idea of a rescue dog. Finn was a support dog for my epilepsy and I knew him from a pup. I was contacted about a boarder terrier that was going to be put down, because he had an undershot jaw, so didn’t really fit the breeders needs. I took him straight away, the training was fun, but he managed to know when I was about to have a seizure and he would look at me and tap me with his paw, until I stopped doing whatever I was doing. Later it became a bit, crazy, he would get me dozing off as a possible episode, but I wouldn’t have had him any other way!

Not sure about another dog, just yet.

Talking out load, not sure. Sometimes, when I become aware, I realise I am talking out load, mainly ranting about something, or other. Don’t like this!

I try and keep busy and keep my brain challenged! My blog keeps me doing something!

Thank you for taking the time to reply!

I wish you well, stay safe and be happy!
 

canary

Registered User
Feb 25, 2014
13,690
South coast
You dont say what sort of epilepsy you have @NotTooLate , but Im wondering whether the auditory hallucinations are part of a seizure?

Are you coming off the anti-epileptics with medical support? I do hope you are not coming off them on your on back. My OH, a few years ago, became convinced that his epilepsy had gone and started coming off he anti epileptics. Needless to say, it wasnt true and he ended up in a terrible state.
 

Wordy

Registered User
Mar 27, 2020
20
Good Morning Wordy!

I’m sorry for the delay, not great few days, but fine now!

I’ve started a campaign to come off as much of the medication I’m on, especially the addictive stuff, that I can. I spent over six months coming off morphine and the difference is truly amazing!

It is now Gabapentin. I assumed, for some unknown reason, that this would be easier, but it is not. I’m now down to, 200, 100 and 200mg throughout the day and this is a big reduction, but now I’m stuck. The sights, sounds and feelings are constant. My tinnitus is also really bad and I think this just acts as a reminder. I know I have to drop the morning, or night dose to 100mg. It’s like standing on an edge and that feeling of I am going to fall.

Interesting you mention an alternative, I’m already on Pregabalin, which I intended to come off next.. Hate medication!

I like the idea of a rescue dog. Finn was a support dog for my epilepsy and I knew him from a pup. I was contacted about a boarder terrier that was going to be put down, because he had an undershot jaw, so didn’t really fit the breeders needs. I took him straight away, the training was fun, but he managed to know when I was about to have a seizure and he would look at me and tap me with his paw, until I stopped doing whatever I was doing. Later it became a bit, crazy, he would get me dozing off as a possible episode, but I wouldn’t have had him any other way!

Not sure about another dog, just yet.

Talking out load, not sure. Sometimes, when I become aware, I realise I am talking out load, mainly ranting about something, or other. Don’t like this!

I try and keep busy and keep my brain challenged! My blog keeps me doing something!

Thank you for taking the time to reply!

I wish you well, stay safe and be happy!
Are you on pregabalin for epilepsy, nerve ending pain or anxiety. I'm asking as gabapentin does the same thing. Like someone else said, I hope you are weaning off with drs advice as even if you are not taking them for epilepsy, coming off them without advice can cause a seizure too. I understand what you say about cocktails of medication such as morphine especially as morphine can cause sleep nightmares. It sounds to me, you need a thorough review of medication with your GP , which can be done on the phone with you having written down all your problems before hand.
I hope you have a better day today xxxx
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Good Morning Canary….

Sorry for the delay in replying, but I’ve had a few bad days, down to epilepsy, but I’m ok now. I know how it goes and just get on with it.

I have Epilepsy related to damage to my left temporal lobe, which I believe was originally caused by shingles. I have grand mal seizures rarely now, thanks I think to medication. My main problem are the small seizures which I have a lot and basically mean I’m absent for the moment. I also believe this has a major impact and relationship to my dementia, particularly to my battle with reality and my dream world. My epilepsy has no triggers and I have no knowledge of oncoming seizures. I am light sensitive and flashing lights can affect me. Strangely, with the onset of led lights, especially in the telly, the problem isn’t anywhere near as bad!

I’ve started a campaign to come off as much of the medication that I can. My doctor is guiding me through this. I will try reducing, or possibly coming off all together, all of my medication, but this is going to take two years, or more according to the doctor.

I’ve had Epilepsy a lot longer than my other problems. These have developed over several years and I battle with them constantly. When I had Finn, my support dog, I would look at him and if he didn’t react to what I was hearing, or seeing, I could shut it out. Now he has gone, I’m finding I’m doubting myself. I swap, without any real awareness of it happening, between what I would say is my real world and my dream one.

My last reduction of Gabapentin, is causing a few problems, but then again, I still struggling with having just lost Finn.

I will beat it… I have to!

Thank you for taking the time to reply.

Stay safe and be happy!

Richard