Another question re husband

Chuggalug

Registered User
Mar 24, 2014
8,007
0
Norfolk
our grandaughter who is 7 seems to be the only one to put a smile on my face at the min.... telling me that grandad is still grandad who does and says silly things and we must still love him cos whens shes naughty we still love her....

alls peaceful now .. so im off to bed who knows for how long... so once again this site is just amazing and so are all of you x x x x

Out of the mouths of babes comes to mind. Such wisdom.

Wishing you a much better time of it today, Rea.
 

rea123

Registered User
Mar 30, 2015
37
0
husband just been diagnosed with frontotemporal dementia.... dnt know where we go from here... cried with relief that it wasnt all in my mind but totally lost at what happens next.... too much info given at the consultation then told if we need anything ring the hundred of phone numbers we wr given,,, do we have to inform the docotor or do they do it from the hosp... what is the outlook ... heads somewhr on another planet please wld some one help ...
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,996
0
72
Dundee
No wonder your head is in a spin rea. I wondered if this would help at all. It's the Society's Factsheet on FTD.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=167

I would imagine your husband's GP would have been informed. There's a Factsheet on after diagnosis. I'll post it in a minute.

Edit - this is it -

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=122

You might also find it helpful to talk to an admiral nurse if you have one in your area. If you don't you can contact them by phone or email them -

http://www.dementiauk.org/what-we-do/admiral-nurses/individual-teams-services/
 
Last edited:

Mossyanne1

Registered User
Feb 10, 2015
45
0
Hi Area, I am so sorry you are going through such a hard time. I went through the same problems, it is definately the awful illness, my Hubbie goes to daycare 4 time a week and he is fine there. When he comes home he bombards me with questions over and over again and he becomes very anxious. I do as others do I just agree with him, I have found through my own mistakes that trying to reason does not work. My specialist has prescribed him a mild tranquilliser which I give him when it gets really bad, it really helps, at least he dozes for an hour. Bliss!!! Please don't be hard on yourself it is so difficult to deal with, we all have days when we could scream the place down or run forever. Much love from me...xxx


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Chuggalug

Registered User
Mar 24, 2014
8,007
0
Norfolk
husband just been diagnosed with frontotemporal dementia.... dnt know where we go from here... cried with relief that it wasnt all in my mind but totally lost at what happens next.... too much info given at the consultation then told if we need anything ring the hundred of phone numbers we wr given,,, do we have to inform the docotor or do they do it from the hosp... what is the outlook ... heads somewhr on another planet please wld some one help ...

Oh really? You'd need a bit of help with all those numbers, Rea. I found it far too overwhelming when a whole load of pamphlets were dumped on me, three times! :( I was left to make contact on my own. No good if you don't know how to approach anything. Hope someone here can help you.
 

rea123

Registered User
Mar 30, 2015
37
0
Hi Area, I am so sorry you are going through such a hard time. I went through the same problems, it is definately the awful illness, my Hubbie goes to daycare 4 time a week and he is fine there. When he comes home he bombards me with questions over and over again and he becomes very anxious. I do as others do I just agree with him, I have found through my own mistakes that trying to reason does not work. My specialist has prescribed him a mild tranquilliser which I give him when it gets really bad, it really helps, at least he dozes for an hour. Bliss!!! Please don't be hard on yourself it is so difficult to deal with, we all have days when we could scream the place down or run forever. Much love from me...xxx


Sent from my iPad using Talking Point

ive done nothing but cry since i got home... feel as tho i cnt breathe... i know ive got to stop feeling sorry for myself and get my head round this.. i think it was just that we were tolf... given leaflets... and left to get on with it... but get on with what????
guess only time will tell... guessing i may need u guys more than i can imagine... thanks u i really dnt know much it helps hearing from people going thro similar things ..
feel a little lost and totaly out my depth here xx
 

rea123

Registered User
Mar 30, 2015
37
0
Oh really? You'd need a bit of help with all those numbers, Rea. I found it far too overwhelming when a whole load of pamphlets were dumped on me, three times! :( I was left to make contact on my own. No good if you don't know how to approach anything. Hope someone here can help you.

yes really.... hundreds of them just on a leaflet staring back at me... and yes a mountain of other things to read... will prob read them in m spare time... joking apart maybe when i manage to get my head round it all and something clicks on what i need to do im sure it will come in useful...heres hoping x
 

Mibs

Registered User
May 26, 2014
73
0
Derbyshire
Hi Rea - can you see us all nodding in sympathy with you, and shedding a tear. Poor love, we know how you're feeling because we've all been there. We also know you'll find the strength to cope somehow. First thing - ditch the leaflets and ring the Alzheimer's helpline, pour it all out and they will help. You need to talk and grieve, there be plenty of time later to read the info - you can't take it in yet.
I've spent years reading every word, sentence and leaflet on dementia I could find - I wish now that I'd spent all that time just holding my hubby tight, putting my arms round him, holding his hand.
Make the call, take care - there's someone here for you 24/7
Mxx
 

rea123

Registered User
Mar 30, 2015
37
0
Hi Rea - can you see us all nodding in sympathy with you, and shedding a tear. Poor love, we know how you're feeling because we've all been there. We also know you'll find the strength to cope somehow. First thing - ditch the leaflets and ring the Alzheimer's helpline, pour it all out and they will help. You need to talk and grieve, there be plenty of time later to read the info - you can't take it in yet.
I've spent years reading every word, sentence and leaflet on dementia I could find - I wish now that I'd spent all that time just holding my hubby tight, putting my arms round him, holding his hand.
Make the call, take care - there's someone here for you 24/7
Mxx

i ditched them in the early hours of this morning... your right i just lay at the side of my husband who looked at me and said im not well am i....heartbreaking...... decided to drive to the coast for a couple of days... dnt wnt to face reality nor family and the endless questions as tho ive suddenly becum an expert in the subject... i know no answers to anything... so running away for a couple of days with the man ive been married to for 30years in august... who i love more now than i ever have... and now its my turn to take care of him just has he has me and our 3 amazing children... i have no crystal ball.. our future is here and now not 2morrow.... and thanku so much for your words of wisdom ... taken them fullu on board...x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
0
Kent
Hello rea

I`ve come late to this Thread but really want to address a couple of your comments.

My husband too was always `losing` his wallet and his keys. I think he put them in safe places because he was so paranoid and thought someone would try to steal them. He also blamed me and only occasionally thanked me with relief when I found them.

He too became verbally aggressive and however much I knew it was the illness, I found it extremely hurtful especially when I was bending over backwards to make life as good as possible for him.

During the full course of his illness he never showed this behaviour to our son, only me.
 

rea123

Registered User
Mar 30, 2015
37
0
I`ve come late to this Thread but really want to address a couple of your comments.

My husband too was always `losing` his wallet and his keys. I think he put them in safe places because he was so paranoid and thought someone would try to steal them. He also blamed me and only occasionally thanked me with relief when I found them.

He too became verbally aggressive and however much I knew it was the illness, I found it extremely hurtful especially when I was bending over backwards to make life as good as possible for him.

During the full course of his illness he never showed this behaviour to our son, only me.

thankyou sylvia... ive tried and promised myself over and over not to react or respond to my oh hurtful nassty remarks and comments and failed everyday this week so far.... why do i do it... afterwardsmi feel both ashamed and more upset than i already was...

last night was the first time he had slept since monday... and what did i do whilst he slept... cleaned the fridge and stayed awake to watch him, waiting for him to wake in his confused state.... and he didnt.... i know there are no answers no right or wrong way but ive got to find some coping mechanism before i make myself ill...
 

katie1

Registered User
Aug 5, 2014
122
0
Kendal Cumbria
hi thanks for the replies....just been back to the doctors and was told that until we have attended this consultation theres nothing they know or can tell us.... and just to go pick up the diazapan which is to be taken when needed (they are for m y husband) im trying to stay rational but failing miserably....just locked the door his the key and going to go to bed and pull the duvet over my head until i feel like facing the world again later.... soooooo stressed x

Please make an appointment for yourself to speak to the doctor about how you feel! Theres only one of you, and you are important!
 

Mossyanne1

Registered User
Feb 10, 2015
45
0
I remember what you are going through, I was at my wits end until I went to a local monthly Alzheimers meeting. I took my hubbie with me and had a one to one with the secretary. I had no idea I needed a social worker, that I could get a
reduced rates on certain things. I was given the number of the Dementia Crisis Team and a local carers group. I have learned so much and made a circle of new friends. I still have days when I feel I can't cope but then another day feels a little easier. Hope this helps.


Sent from my iPad using Talking Point
 

rea123

Registered User
Mar 30, 2015
37
0
I remember what you are going through, I was at my wits end until I went to a local monthly Alzheimers meeting. I took my hubbie with me and had a one to one with the secretary. I had no idea I needed a social worker, that I could get a
reduced rates on certain things. I was given the number of the Dementia Crisis Team and a local carers group. I have learned so much and made a circle of new friends. I still have days when I feel I can't cope but then another day feels a little easier. Hope this helps.


Sent from my iPad using Talking Point



thankyou any words of encoragement any peice of advise, any words of wisdom helps more than you will eva know... as you are well aware you are suddenly plunged into a world of uncertantity a world thats totally alien, you wldnt believe or may be you would how words of encoragement words of wisdom, even some one just sending the word hug to u at them times when u just dnt know how yr going to get thro the night or day makes my world a little less confusing a little less daunting x x x
 

pamann

Registered User
Oct 28, 2013
2,635
0
Kent
Hello real 123 how right you are, it is so nice to get help and advice from lovely people in the same situation as we are, a virtual hug is wonderful, makes us feel that someone is really caring about us!! Keep posting ((((BIG HUG FOR YOU))))
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
It's normal here too...my husband is genuinely certain that it couldn't have been him losing things , so his logic tells him it was someone else...always someone close by unfortunately. And accidents like spilt wine( and there's been quite a lot) are usually because someone else has put the glass in a stupid place, so it was bound to happen. Now, when it's just family, we generally use tumblers instead of stem glasses. And we're quite good now at seeing the accidents coming...it's become a bit of a joke to score a point when you've prevented some mishap!

It's really hard to get inside the mind of someone who's reality is different, and even harder not to argue the point, but for the sake of peace of mind, " go with the flow" as they say. You can come on here and have a good rant any time it gets too much...there's always someone to sympathise and understand.
Hugs xx
 

Scarlett123

Registered User
Apr 30, 2013
3,802
0
Essex
thankyou any words of encoragement any peice of advise, any words of wisdom helps more than you will eva know... as you are well aware you are suddenly plunged into a world of uncertantity a world thats totally alien, you wldnt believe or may be you would how words of encoragement words of wisdom, even some one just sending the word hug to u at them times when u just dnt know how yr going to get thro the night or day makes my world a little less confusing a little less daunting x x x

As an "ex" member, I was only going to come on here every few months to say hallo, but I read your post today, and felt I had to respond. Sweetie, you are going through hell at the moment, and floundering in an ocean of uncertainty, which is frightening.

But your lifebelt, in the shape of the wonderful people on Talking Point, will keep you afloat, even if you feel you are drowning. :) My own piece of advice, which I always gave because it worked so well for me, was to agree with absolutely everything John said.

His favourite phrase was "is it Thursday?", and after years of gritting my teeth and correcting him, I finally saw the light and thought "what does it matter if he's right or wrong". The joy on his face when I told him he was right was magical. And when he said "so tomorrow's Monday", and I agreed, it saved me getting agitated over nothing at all.

When he took my hands in his one day, and earnestly asked me "are you with child?", I took a deep breath and said "not today darling". I didn't point out that after nearly 50 years together, the fact that I had a hysterectomy over 30 years ago, and he had a vasectomy over 40 years ago, and I hadn't the energy to stray, nor a womb, it wasn't likely!

He'd wake me up in the wee small hours to ask what time our flight was, as he thought we were on holiday. John would get back to the land of nod in an instant - I'd toss and turn for ages, drop off, only to be awoken by him a few minutes later.

I didn't suddenly see the light - John was diagnosed with AD 12 years before he died at Christmas, because it's a very long learning curve. There is nothing you have experienced or will experience, as a carer of someone you love dearly, that others on TP cannot identify with, and can help you on this horrible path.

It is so bewildering being given a pile of leaflets, with the unspoken inference of "there you are, now get on with it", and so I have offered my services at our local AD club as a buddy, for new carers. Which is what happens on TP, except that you have a wonderful circle of buddies, on tap, helping to support you, night and day.

I couldn't have coped without the wonderful people on here, and believe me, the advice they'll give you is invaluable. Never feel that you shouldn't ask for help or advice on here. It's the place to open your heart, and even if people cannot offer a solution, just knowing that you're not alone is such a comfort. :) xxx
 

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