Tonight I actually snapped
- Thread starter Dave K
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I think today is going to be my lucky Day!
Do hope so Dave.
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morning Dave! I also had a sleepless night, mum's psychiatrist is coming to assess mum's progress or not on medication and I think I had questions to ask and anxiety about it going around in my head. I thought of you, as sometimes the hardest time to sleep is when you most need it.
Dave, pat yourself on the back, the diagnosis is progressing, the daughter is on board and hopefully you are going to start letting your role as carer be assessed and allowing in help.
Indeed learning about these diseases is such a learning curve, there is so much to find out, I wish I had learnt more years ago when my dad had dementia, I have learnt so much more this time around with my mother. I think we can take a pride from being armed with as much knowledge as possible.
Well I have visitors coming, so I may be remiss in my role as part of the nighty night team over the next few days but doubtless will be popping in to check up on you in a spare moment. have a good day, everyone. X
Dave, pat yourself on the back, the diagnosis is progressing, the daughter is on board and hopefully you are going to start letting your role as carer be assessed and allowing in help.
Indeed learning about these diseases is such a learning curve, there is so much to find out, I wish I had learnt more years ago when my dad had dementia, I have learnt so much more this time around with my mother. I think we can take a pride from being armed with as much knowledge as possible.
Well I have visitors coming, so I may be remiss in my role as part of the nighty night team over the next few days but doubtless will be popping in to check up on you in a spare moment.
have a good day, everyone. X
Hi Dave. You probably didn't notice, but I ducked out of all the teams a good few days ago. I found your thread too stressful to deal with when I am going through my own XYZ problems here. All of us are suffering one way and another and we are all getting on with it in our own way. I am sorry you did not get the diagnosis you want/expected, but as the others have said, you have an acknowledgement that there is something wrong - and that is huge, believe me. That you have to wait for a final outcome is unfortunate but how it is, and shouting at the moon, or staying up half the night to research when what the medics have to say will be the arbiter of what the diagnosis will be, and not what ever we carers think we know. There is a process and we just have to put up with its stages and be patient - unjust, uneconomical of time, probably slued because only you have all the story, and hard on you and your wife I know, but that's just how it is. You have my very best wishes as always, but now you need to take the help that is offered - worst case scenario remember when you are asked how you manage your wife's care - and get on with your life. No more talk of chucking your business and living off the state. You know you don't want that. The unfortunate thing is that when you throw out such statements because you are at the end of your tether, you risk not being taken seriously. Just like the boy who cried wolf. Chin up, Dave. You are actually doing fine - ask anyone on here and they'll tell you. Oh no, you don't need to because they HAVE already told you - loads of times. Love X Shelagh
Hi Dave. You probably didn't notice, but I ducked out of all the teams a good few days ago. I found your thread too stressful to deal with when I am going through my own XYZ problems here. All of us are suffering one way and another and we are all getting on with it in our own way. I am sorry you did not get the diagnosis you want/expected, but as the others have said, you have an acknowledgement that there is something wrong - and that is huge, believe me. That you have to wait for a final outcome is unfortunate but how it is, and shouting at the moon, or staying up half the night to research when what the medics have to say will be the arbiter of what the diagnosis will be, and not what ever we carers think we know. There is a process and we just have to put up with its stages and be patient - unjust, uneconomical of time, probably slued because only you have all the story, and hard on you and your wife I know, but that's just how it is. You have my very best wishes as always, but now you need to take the help that is offered - worst case scenario remember when you are asked how you manage your wife's care - and get on with your life. No more talk of chucking your business and living off the state. You know you don't want that. The unfortunate thing is that when you throw out such statements because you are at the end of your tether, you risk not being taken seriously. Just like the boy who cried wolf. Chin up, Dave. You are actually doing fine - ask anyone on here and they'll tell you. Oh no, you don't need to because they HAVE already told you - loads of times. Love X Shelagh
Ouch and thank you for all your lovely posts, I wish you well too
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Ouch and thank you for all your lovely posts, I wish you well too
hi. dave. my husband needs to see a neurologist to find a solution to the severe headpains he has been gettig for 7months. he has advanced vascular demetia. our g.p said the n.h.s. waiting list is 6 months to a year!! we are going private and got an appointment in 2 weeks. is it were possible for you to get the money together at all? would the family help? just a suggestion. take care.x
hi. dave. my husband needs to see a neurologist to find a solution to the severe headpains he has been gettig for 7months. he has advanced vascular demetia. our g.p said the n.h.s. waiting list is 6 months to a year!! we are going private and got an appointment in 2 weeks. is it were possible for you to get the money together at all? would the family help? just a suggestion. take care.x
Hello Dave. You've been through the mill once more haven't you, and now you're left feeling disappointed and sad, but you may be sure you're not abandoned!
Sorry I haven't been posting on here, had a little mini drama of my own which forced me to take a cool look at my own situation.. I realised that it's up to me to try and look after myself better, so that I can do the best for my husband. I was lucky, I got three proper night's sleep, which makes all the difference. Now I can think straighter, I hope.
Whether my husband likes it or not, somehow I'll have to get him to accept some Day Care, for his own good. There are other things available, like a friendly person who would take him out somewhere. I wonder if it's possible to find something like that for your wife, because it must be worrying for you when she goes out on her own.
Don't give up, mon brave!
Sorry I haven't been posting on here, had a little mini drama of my own which forced me to take a cool look at my own situation.. I realised that it's up to me to try and look after myself better, so that I can do the best for my husband. I was lucky, I got three proper night's sleep, which makes all the difference. Now I can think straighter, I hope.
Whether my husband likes it or not, somehow I'll have to get him to accept some Day Care, for his own good. There are other things available, like a friendly person who would take him out somewhere. I wonder if it's possible to find something like that for your wife, because it must be worrying for you when she goes out on her own.
Don't give up, mon brave!
Good morning...
I had been thinking on the lines of this last night during my reading and investigating marathon last night, it is a lot quieter at night as everyone is in bed so there are no distractions or upsets, mind you time flies at night when you loose all track of time
I think what I am going to do is to wait for the appointment letter to arrive first as you never know the appointment may be only a month or two away, so wait for the letter and see what date has been given then decide to go private or wait.
Thank you for the suggestion, great minds think alike
I also hope that your husband can loose the headaches as there is nothing you can really do with headaches, no rubbing as you would do with a different type of hurting
So my fingers are crossed for you, your husband and hope your neurology appointment can quickly find, identify and hopefully relieve your husbands headaches
Take Care
Good afternoon Anne
Thank you for your message, I do realise that folk have lives outside of TP and are also caring for others and trying to keep themselves fit and well enough to do that job with all that goes along with caring, please do not need to apologise for not posting, I do not keep tabs of folk, honest
Yes, one more disappointment but at the end of the day I am new to all this once the decision was taken back on February to take my wife to the doctors. It seem that this disease, diagnosis and support takes forever, I am not good at waiting, never have been and more than likely never will be able to wait (My bad)
My wife is not in immediate need of help, it is me that has to ask for the help, this was done yesterday, however, it is another waiting game as it seems like the SS and carers support are snowed under with cases, never knew until recently on how many folk this one disease takes out, 1 sufferer, 1 (or more) carers, 1 SS person, 1 memory clinic nurse and doctors and specialists. Now I am realising why there are such huge waiting times
Anyway, it is me that need to slow down, breath deeply and learn a little patience, understanding and things can not be fixed in an instant.
SEE, I AM GETTING IT NOW
My wife is not ill enough to need a carer and she seems to do well on the bus trips, no problems as of yet, she also like her independence. Other than Daughter 2 there is no one else to accompany her anywhere and daughter 2 has a life, husband, 2 kids (grown up) and 2 dogs to care for. What she has done for me this week was a great relief and she is taking my wife to Bournemouth for 2 nights and 3 days to visit daughter 1 which will give me enough time to put the house and myself back in order.
Back to your post...
Yes, as you and many others have told me many occasions, we all need rest and that goes for the folk that kept on telling me this ( think you were one of the many
). please do as you preach and gave a day or two off, I know it is hard, my 2 day break last week ended in a complete disaster (not going into that again) but something good did come out of it as Daughter 2 is on board whenever she can and the 2 night break at the end of the month. So it will be just me and Zeus (fingers crossed)So, rambling Dave is at it again....
Hi Kassy
I suppose I will have to resign myself to the fact that may well be the case for me also, but there is still the neurology tests to go so hopefully this will prove that there is a problem even if a label cannot applied for now
Wife had suffered depression before I met her back in 1989, she was on antidepressants for years prior to us meeting but my charm weaned her of these completely within 6 months (see I am / was useful for something)
but I do not think it is depression, though not a doctor and as to emotional blackmailing to spend more time with her does not count as I have worked from home since 1991 (the day my son was born)There is something wrong, I know it, my son knows it, daughter 2 is now realising it as well as the doctor (gp) and memory psychiatrist all know it. so if a 'label' can not be applied I think I will give it my own name to make me feel better... Any suggestions.... Something funny and not detrimental
Yes using the word 'Lucky' was definitely a wrong choice as I thought I was lucky this morning when I went to fry an egg and it was a double-yolker.. But I forgive you for the Pun
- Probably something I would have said too I know how you feel Kassy regarding convincing 'everyone else' I think that is the hardest part / battle in many ways as I have, I am sure, been label'd the 'bad guy' 'doesn't know what he is talking about' etc.
I have lived with my wife and worked from home for 23 years, I think I know my wife better than anyone else does, including the kids...
I think family support is absolutely vital for the sufferer and carer, even if it is just to lend an ear but 3 of the kids are 'step-kids' and even after all this time (26 years), when it comes to their Mum, they will take the Mum's side quite understandably.
But I am sure we will all get there, sooner or later (fingers crossed)
I had an op many years ago to investigate a problem. I was told that they were only doing it to basically shut me up as there wasn't anything wrong it was all in my head. They got really nasty with me when I said I wasn't going to go home until I had spoken to a doctor. So in a hospital corridor I finally had my consultation.
Turned out I had a rare condition that needed treatment. I ended up being treated by St Mary's in London I also took part in the drug trials they were doing. I had some complications but that was ok as they got lots of useful info that they would use in future treatments.
I remember crying when I was told this is what you are suffering from. The doctor said oh it isnt that bad. I said its just the relief in finally being able to give it a name and being believed.
Think that goes for whatever the condition is, just to be taken seriously and listened to.
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Turned out I had a rare condition that needed treatment. I ended up being treated by St Mary's in London I also took part in the drug trials they were doing. I had some complications but that was ok as they got lots of useful info that they would use in future treatments.
I remember crying when I was told this is what you are suffering from. The doctor said oh it isnt that bad. I said its just the relief in finally being able to give it a name and being believed.
Think that goes for whatever the condition is, just to be taken seriously and listened to.
Sent from my GT-S6810P using Talking Point mobile app
Good on you for 'stomping' your feet and refusing to go until you had your consultation even if it were in a corridor.
You and YOU alone got yourself sorted in the end
You have hit the nail on the head with the 'needing to have a name' or label as I am calling it but in my (and wife's) case we would rather have a name (label) that is fit for purpose than to just pluck one or to be given none, I will leave it until all avenues have been sorted then I think I may 'stomp' my feet a little but that may be some way off from now though sadly
Many, many people never have an accurate diagnosis.
In fact Alzheimer's Disease s very diffiult to diagnose until a post mortem amd most receive this diagnosis by having other causes ruled out.
My husband never received any scan at all. He was diagnosed by a consultant psychiatrist as having vascular dementia due to his history of peripheral artery disease caused by long term diabetes - with possibly some Alzheimer's present too.
To be honest it made no difference at all.
At the start he was prescribed Aricept(Donapezil) in case Alzheimer's was involved but once his dementia deteriorated after a radical amputation, it was stopped.
You have to just deal with the here and now and the symptoms as they present themselves. Whatever the diagnosis, or lack of it, apart from a few common factors, sufferers progress in different ways and speeds and can show different symptoms.
As one TPer's signature line says "When you have seen one person with dementia, you have seen one person with dementia"!
In fact Alzheimer's Disease s very diffiult to diagnose until a post mortem amd most receive this diagnosis by having other causes ruled out.
My husband never received any scan at all. He was diagnosed by a consultant psychiatrist as having vascular dementia due to his history of peripheral artery disease caused by long term diabetes - with possibly some Alzheimer's present too.
To be honest it made no difference at all.
At the start he was prescribed Aricept(Donapezil) in case Alzheimer's was involved but once his dementia deteriorated after a radical amputation, it was stopped.
You have to just deal with the here and now and the symptoms as they present themselves. Whatever the diagnosis, or lack of it, apart from a few common factors, sufferers progress in different ways and speeds and can show different symptoms.
As one TPer's signature line says "When you have seen one person with dementia, you have seen one person with dementia"!
Yes Saffie, I am beginning to realise this now but I think I will skip on the post mortem diagnosis for a while though
Like I said, I think I will sit here when it is quite and think of a good 'pre-diagnosis' name (label) for this condition, a sort of temporary one rather than keep sayin ' I dunno what it is'
SEE, I AM GETTING IT NOW
Delighted to hear it! Wishing you peace and progress.
It seems to me that diagnosis matters most if treatment's available to stop / slow down the deterioration or control the symptoms. What's mattered most to us as a family has been advice and help with managing Mum's and our "life" problems" arising out of her dementia.
I started out wanting to know what was happening to Mum's brain and body, these matters are only of passing interest to me now.
Of more pressing concern is monitoring how Mum feels from day to day and adapting our own behaviour accordingly. Looking after the vulnerable main carer and ourselves has just as high a priority.
Each time there's a decline in Mum's capabilities we feel saddened by it - but the length and slowness of the decline means we notice less each individual step downwards (the boiled frog syndrome, I suppose).
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