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Found out Monday partner has dementia!

Ipswich

Registered User
Jul 5, 2014
15
Thank you for your words of encouragement and support - they really help lift my mood. I think I would feel better if he would talk to me about how he is feeling and start to sort out things like power of attorney but I don't think he is ready yet! He refuses to tell his family until he has his diagnosis -doesn't want to says he has dementia, wants to be able to be more specific?! I just feel frustrated with him because the bottom line is whatever type he has, he is not going to get better. I think he is in denial - if he doesn't say it then it almost isn't real to him. I'm guessing this is a common reaction and I need to stand back and give him time to get his around the whole thing. It is early days yet and now I have TP to support me hopefully I will be able to give him the space he needs until he gets his diagnosis and we can move forward from there. Thanks again.
 
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Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
Hi Ipswich,

I can only imagine you were somehow 'in the know' that something wasn't right for a time, as no dementia diagnosis comes out of the blue. For some of us, getting to diagnosis point can take years. In the meantime, now you have a diagnosis, there are things you can do to improve your own state of mind. Reading factsheets here has already been mentioned, but if and when you feel so inclined, there are many good books on the subject which can help you manage the condition to a degree.

There must be thousands of us on here who have been through the many and varied issues concerning dementia, and so there will be plenty of help for anything you wish to know about.

Coming here isn't all bad! Sometimes, we love to laugh. I've seen some wonderful things that have been said, along with some extremely sad, scary things. But after someone gets a discussion going, everyone else piles in with great suggestions. It's up to each of us who care for someone else to take up those suggestions, or not.

I hope you find this a helpful site, Ipswich, and I do hope you also get lots of time to smile and laugh. We all need to keep a sense of humour by our side. No one knows how long their journey is going to be. So always feel welcome to come and share anything you need to, and a HUGE, welcome to you, xx
 

creativesarah

Registered User
Apr 22, 2010
9,578
East Hunsbury Northamptonshire
much support Ipswich

its so easy to think ahead and to think the worst case scenario thats just human nature
I hope that you will have many many good times together as you walk this different path from the one you had planned.

I had to give up work but I was relieved and now I can do some of the things I have always wanted to do. At the moment I am writing a book!

If I hadn't been ill I wouldn't have had the time and in October I am having my second Exhibition of my photography and this time I am including some silk paintings too

My mantra is don't curse the darkness light a candle

much support

Sarah
 

Ipswich

Registered User
Jul 5, 2014
15
Hi Chuggalug, I was nowhere in the know! My partner went for his diabetes check up and mentioned a few symptoms he had noticed recently. He assumed they were medication related - neither of us had any idea that he was going to be referred for tests "asap" and that he would be diagnosed with dementia! It was a shock then and still is. He won't talk about it and I need to talk about it. There is an elephant permanently in the room!!

Hi Ipswich,

I can only imagine you were somehow 'in the know' that something wasn't right for a time, as no dementia diagnosis comes out of the blue. For some of us, getting to diagnosis point can take years. In the meantime, now you have a diagnosis, there are things you can do to improve your own state of mind. Reading factsheets here has already been mentioned, but if and when you feel so inclined, there are many good books on the subject which can help you manage the condition to a degree.

There must be thousands of us on here who have been through the many and varied issues concerning dementia, and so there will be plenty of help for anything you wish to know about.

Coming here isn't all bad! Sometimes, we love to laugh. I've seen some wonderful things that have been said, along with some extremely sad, scary things. But after someone gets a discussion going, everyone else piles in with great suggestions. It's up to each of us who care for someone else to take up those suggestions, or not.

I hope you find this a helpful site, Ipswich, and I do hope you also get lots of time to smile and laugh. We all need to keep a sense of humour by our side. No one knows how long their journey is going to be. So always feel welcome to come and share anything you need to, and a HUGE, welcome to you, xx
 

Ipswich

Registered User
Jul 5, 2014
15
Thank you for your support and kind words.

Everything seems so big and scary because of the unknown element of this whole thing for me. He won't talk to me about the situation (typical head in sand response). He obviously needs more time to come to terms with things and I need to back off until he is ready to come to me but I find it very hard to do.

The support I get from TP is my saving grace.

Thanks to everyone.

much support Ipswich

its so easy to think ahead and to think the worst case scenario thats just human nature
I hope that you will have many many good times together as you walk this different path from the one you had planned.

I had to give up work but I was relieved and now I can do some of the things I have always wanted to do. At the moment I am writing a book!

If I hadn't been ill I wouldn't have had the time and in October I am having my second Exhibition of my photography and this time I am including some silk paintings too

My mantra is don't curse the darkness light a candle

much support

Sarah
 

LadyA

Registered User
Oct 19, 2009
13,590
Ireland
Thank you for your support and kind words.

Everything seems so big and scary because of the unknown element of this whole thing for me. He won't talk to me about the situation (typical head in sand response). He obviously needs more time to come to terms with things and I need to back off until he is ready to come to me but I find it very hard to do.

The support I get from TP is my saving grace.

Thanks to everyone.
I hope your husband does come around to being able to talk to you about his diagnosis, so you can plan for the future. At least he has been told the diagnosis. My husband, who is now in the late stages of the disease, has never acknowledge that there is anything wrong with him - through all the deterioration! And he was never able to be told, as his consultant felt he was so hostile toward any diagnosis of dementia that it would be counterproductive - he would probably have refused to attend any more appointments. Would have made life so much easier in many ways. Hang in there. The "D" word has been spoken and it can't be unheard. It take your husband quite a while to process it himself - especially as he won't feel any different now to before the diagnosis.
 

Ipswich

Registered User
Jul 5, 2014
15
Be careful What you Wish for

So much has happened since I posted these thoughts. Having gone down the emotional rollercoaster of deciding how WE could deal with his illness together, MOH dropped a major bombshell on me which explained why he hadn't been speaking to me about things. He had been diagnosed with frontal lobe dementia and alzheimer's - the first one being his main concern because of its speed of progression and the mood changes characteristic of this type of dementia. He had looked at the care and funding for dementia patients in the UK and decided, following discussions with his GP that his best option would be to go to a dementia clinic in New Zealand and basically become a lab rat!. He knows that it is unlikely that they will find anything in time to help him but he says that he would feel some sort of acceptance of his situation if he thought he might help somebody in the future. The clinic in NZ is receiving major Russian funding(apparently the type of dementia he has is most common in Russia and somebody/s have committed to invest large amounts of funding for a significant number of years) and that is where my other half has taken himself off to. He is adamant that this is what he wants, he does not want any of his nearest and dearest to see him or watch him turn into the "thing" he will become(his words not mine) and so I am now at home, trying to get on with my life waiting for his phone calls and e-mails for as long as they last. It goes without saying that this does not sit well with me and I am struggling but I have to respect his wishes as he unilaterally made this decision for us both and no amount of begging, crying shouting etc would change his mind! I tell myself that he will come home one day or I can go and visit him next year some time, maybe, but in my heart I know that this is unlikely. I have to keep positive because the alternative is too painful to contemplate. I probably won't post anything further for a while because I won't have anything to report but if I need an emotional rant or similar you might find me back on the site. Your words of support were so comforting back in July when we first found out about this so I know where to come if I need it again. Take care. Ipswich
I don't know what to do - I feel I should be strong and supportive but all I keep doing is bursting into tears. He is only 56. I feel totally useless - I don't know what to do or what to say, probably because there is nothing I can say or do to change anything. Even this e-mail seems wrong because it's all about me so far and I know that although I am scared witless, it must be so much worse for him. Is there anyone out there who can help me take control so I can try to help him through this rather than be the blubbering mess I am right now?
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
So much has happened since I posted these thoughts. Having gone down the emotional rollercoaster of deciding how WE could deal with his illness together, MOH dropped a major bombshell on me which explained why he hadn't been speaking to me about things. He had been diagnosed with frontal lobe dementia and alzheimer's - the first one being his main concern because of its speed of progression and the mood changes characteristic of this type of dementia. He had looked at the care and funding for dementia patients in the UK and decided, following discussions with his GP that his best option would be to go to a dementia clinic in New Zealand and basically become a lab rat!. He knows that it is unlikely that they will find anything in time to help him but he says that he would feel some sort of acceptance of his situation if he thought he might help somebody in the future. The clinic in NZ is receiving major Russian funding(apparently the type of dementia he has is most common in Russia and somebody/s have committed to invest large amounts of funding for a significant number of years) and that is where my other half has taken himself off to. He is adamant that this is what he wants, he does not want any of his nearest and dearest to see him or watch him turn into the "thing" he will become(his words not mine) and so I am now at home, trying to get on with my life waiting for his phone calls and e-mails for as long as they last. It goes without saying that this does not sit well with me and I am struggling but I have to respect his wishes as he unilaterally made this decision for us both and no amount of begging, crying shouting etc would change his mind! I tell myself that he will come home one day or I can go and visit him next year some time, maybe, but in my heart I know that this is unlikely. I have to keep positive because the alternative is too painful to contemplate. I probably won't post anything further for a while because I won't have anything to report but if I need an emotional rant or similar you might find me back on the site. Your words of support were so comforting back in July when we first found out about this so I know where to come if I need it again. Take care. Ipswich
Wow! I couldn't just read and run. What a strong minded person your other half must be, to decide to take himself to the other side of the world to be a guinea pig. I can't offer any words of advice, but just want to wish you both the very best, and to urge you to come back here whenever you feel able to. God Bless. xxx
 

truth24

Registered User
Oct 13, 2013
5,725
North Somerset
Echoing Scarlett's remarks. This must be so very hard on you and what a major shock if you weren't expecting it. Can only send best wishes and sympathy.

Sent from my GT-N5110
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Echoing Scarlett's remarks. This must be so very hard on you and what a major shock if you weren't expecting it. Can only send best wishes and sympathy.

Sent from my GT-N5110
Me too

And hoping that you have support around you xx


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Jessbow

Registered User
Mar 1, 2013
3,026
West Hertfordshire
Goodness me, how unsettled you must feel.

I admire your strength in letting him go - It must be horrendous for you, I cant imagine what you must be feeling.

((Huge hugs)) and bucketfulls of strength.
Please stay with us .
xx
 

LadyA

Registered User
Oct 19, 2009
13,590
Ireland
Oh Ipswich. Oh, oh, Ipswich.:( Even though you feel you won't have much in the line of updates on things to post - do come back for yourself if you need support or need to let off steam or have a rant. We've all had things to say that we feel those around us just wouldn't understand or would be horrified by. You have had an awful kick in the guts by this disease, and while your OH may have felt that he was sparing you terrible pain down the road, all the pain has actually been dumped on you now, like icy water from a barrell.
 

Ipswich

Registered User
Jul 5, 2014
15
LadyA, You have hit the nail on the head. This is exactly what he was trying to achieve by taking the route he did but there is no closure for me and I feel that I will never be able to move forward with my life. If he had allowed me to be with him and I could have seen him deteriorate it would have been easier for me to let him go. I feel abandoned - I feel that I signed up for a long haul flight and I have been put off somewhere over Europe!! OMG that sound so selfish because he must be scared and lonely out there but he made this all about HIM but it affects both of us and we should have faced it together. I cry more now than when he first told me about the diagnosis and I have no control over when it happens! I feel wrung out most of the time. Fortunately my youngest daughter lives quite close so she comes and mummy-sits when she can and both the girls call me often to check up on me. (Here ends rant No1!) Thank you to everyone for their support and kind words - it is always a comfort.
Oh Ipswich. Oh, oh, Ipswich.:( Even though you feel you won't have much in the line of updates on things to post - do come back for yourself if you need support or need to let off steam or have a rant. We've all had things to say that we feel those around us just wouldn't understand or would be horrified by. You have had an awful kick in the guts by this disease, and while your OH may have felt that he was sparing you terrible pain down the road, all the pain has actually been dumped on you now, like icy water from a barrell.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
I've only just come across this thread and just wanted to say that my thoughts are with you Ipswich. I don't know how you begin to deal with such a situation. If he had even talked it over with you before deciding it might have been easier but just to be presented with it as a fact must have been devastating.

But you also sound like a strong-minded person. I don't expect it feels like it, but you had readied yourself to 'face it together' and that takes some doing. You have also accepted that you couldn't have changed his mind which, again, suggests some inner strength to me.

I'm so glad you have loving daughters. It must have been devastating for them as well but at least in some ways you are in this together.

I hope you will keep posting as I'm sure that many people will be thinking of you.

Take care
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello ipswich
I have only just found your thread my mother came from ipswich, my Mums sister lives in Ipswich and she has just been diagnosed with dementia. I cannot imagine how life must be for you, what a sho k for you, is your husband able to keep in contact with you? I do hope so for your sake. This must be the worse thing that l have read on TP. I am thinking of you and send you my love ♥♥♥

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LadyA

Registered User
Oct 19, 2009
13,590
Ireland
LadyA, You have hit the nail on the head. This is exactly what he was trying to achieve by taking the route he did but there is no closure for me and I feel that I will never be able to move forward with my life. If he had allowed me to be with him and I could have seen him deteriorate it would have been easier for me to let him go. I feel abandoned - I feel that I signed up for a long haul flight and I have been put off somewhere over Europe!! OMG that sound so selfish because he must be scared and lonely out there but he made this all about HIM but it affects both of us and we should have faced it together. I cry more now than when he first told me about the diagnosis and I have no control over when it happens! I feel wrung out most of the time. Fortunately my youngest daughter lives quite close so she comes and mummy-sits when she can and both the girls call me often to check up on me. (Here ends rant No1!) Thank you to everyone for their support and kind words - it is always a comfort.
But you know, it is one of the saddest things with this disease, that often the person loses (and quite early on, at least it was with my husband) the ability to sort of engage or understand on an emotional level, what affect their decisions or behaviour is having on their loved ones. It appears as if they "do it anyway" or don't care, but it's more as if there's a connection missing - they will see how upset we are, but just don't get it. So while your husband may have made his decision on a rational plane, to spare you pain in the long run - and realised that the prognosis, the deterioration etc. was going to cause you a lot of pain - he couldn't actually empathise with your here and now pain. Does that make sense?
 
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Ipswich

Registered User
Jul 5, 2014
15
LadyA Yes it does sort of make sense but I think a large part of the reason he made the decision he did was because, as a young man, he had to clean up his Grandfather on one occasion (he had Parkinson's I think) and, as horrible an experience as it was for him, he remembers looking into his Grandad's eyes and seeing the upset and humiliation he was going through, and because of this he is/was adamant that he would never put himself or his loved ones in that position. At this moment in time, he knows what is going on and understands my pain ( he is feeling it too) but his pride and this memory would not allow him to risk staying with me longer. He worried in case he became not able to make the decision he wanted to regarding his future care etc. He knows that I would keep him close for as long as I could manage to look after him (I had told him this was the case in one of our one-sided early days conversations) and he really did not want this. The girls are devastated obviously and do their best to comfort me but we are all dreading having to tell the Grandchildren (x's 3), 5yrs, 8yrs and 9yrs. Fortunately he worked away regularly and so were used to visiting and being told that Grandad was at work but we can't say that to them forever. Everything feels such a mess right now but in time I expect things will be clearer and between us we will find the right words to explain to then. Thank you for your concern and thoughts, they really do help. Take care.
But you know, it is one of the saddest things with this disease, that often the person loses (and quite early on, at least it was with my husband) the ability to sort of engage or understand on an emotional level, what affect their decisions or behaviour is having on their loved ones. It appears as if they "do it anyway" or don't care, but it's more as if there's a connection missing - they will see how upset we are, but just don't get it. So while your husband may have made his decision on a rational plane, to spare you pain in the long run - and realised that the prognosis, the deterioration etc. was going to cause you a lot of pain - he couldn't actually empathise with your here and now pain. Does that make sense?
 

Ipswich

Registered User
Jul 5, 2014
15
Thank you pamann. Yes he is able to contact me quite regularly right now. He has been texting me on a daily basis and phones every second or third day usually but at times the testing is very intensive and he is confined to his room and drugged up and then I don't hear anything for a while. Obviously at these times I think the worst and the relief when I receive a communication is indescribable. At some point, and I have no idea when, he will stop communicating because he can't - I dread the day. Tak care.
Hello ipswich
I have only just found your thread my mother came from ipswich, my Mums sister lives in Ipswich and she has just been diagnosed with dementia. I cannot imagine how life must be for you, what a sho k for you, is your husband able to keep in contact with you? I do hope so for your sake. This must be the worse thing that l have read on TP. I am thinking of you and send you my love ♥♥♥

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lin1

Registered User
Jan 14, 2010
9,319
East Kent
Oh Ipswich. I have just come across your thread. and read your post about your Husband going to New Zealand With my heart in my mouth for you.
I know in his own way your Husband is trying to spare you , I cant even begin to imagine what you are going through , I wish I could say something wonderful that would help to ease your distress.

TP has helped me so much, well the people here have !!! So as others have already said, please don't just come here to update us.
What you cant say to friends and family, can often be said on here. most of us here need to have a bit of a rant from time to time .
You may just want to chat, we do a lot of that here too .

Wish I could give you a real hug , instead I will just have to settle for giving you my favourite cyber one

hugs-desi-glitters-32.gif
 

Onlyme

Registered User
Apr 5, 2010
4,995
UK
Thank you pamann. Yes he is able to contact me quite regularly right now. He has been texting me on a daily basis and phones every second or third day usually but at times the testing is very intensive and he is confined to his room and drugged up and then I don't hear anything for a while. Obviously at these times I think the worst and the relief when I receive a communication is indescribable. At some point, and I have no idea when, he will stop communicating because he can't - I dread the day. Tak care.
It's almost impossible to imagine the depth of your pain. We are all here to listen and offer support where we can.

Massive hugs.