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Found out Monday partner has dementia!

Sammyjo1

Registered User
Jul 8, 2014
194
I can't begin to imagine how hard it must be and how much you are having to cope with on your own, without the rock that you are used to being there for you.

I was wondering whether it would be possible to get contact details of someone who is treating your OH so that you can contact them if you are worried about not having heard anything?

Take good care of yourself
 

Ipswich

Registered User
Jul 5, 2014
15
I did ask him if there was a person who dealt with him more than anyone else or someone assigned to "take care of him" sort of like a mentor or similar but he said no. He has given me the telephone number of the place so if I get concerned I will just have to phone that and hope I can get some news on what is happening - not ideal I know but it's what I've got! Thank you for offering up this idea - it is very kind of you to post me.
I can't begin to imagine how hard it must be and how much you are having to cope with on your own, without the rock that you are used to being there for you.

I was wondering whether it would be possible to get contact details of someone who is treating your OH so that you can contact them if you are worried about not having heard anything?

Take good care of yourself
 

Ipswich

Registered User
Jul 5, 2014
15
The silliest of things set me off!

This w/e I went to look for a new car. The car I drive presently was bought for me by MOH in 2002, I love her and in the past when he had suggested that I upgrade, I had resisted the move knowing that if it did go wrong he would deal with the garages etc and sort it out for me. Now that I am alone, I feel more vulnerable and want a newer car that is more reliable. Typing this out, it all sound perfectly understandable. However my reaction since finding a new car and knowing that I am going to have to part with her is completely stupid. It is only a car but I can't stop crying at the prospects of having to part with her. She is only a car but he bought it for me and it feels like by getting rid of her I am loosing a bit more of him - how stupid does that sound but it is how I feel and I am completely heartbroken. If I had the room I would keep her just so that I felt that I could hold onto him just for a bit longer.

My daughter says that she understands but doesn't know what to say to help but nobody can make this feel better. Just the fact that she is there for me and listening helps but I wonder whether I am expecting too much of her because she is struggling to cope with the whole situation herself. This feels like a bereavement but without the closure. He calls me regularly and we talk just like we used to when he was away on business only now he won't be home in a couple of days and we can't plan what to do at the w/e - bits of it feel so normal but the reality is that everything is far from normal - it just messes with my head and my emotions.

I try not to get upset when he calls in case he stops calling as often because he doesn't want to deal with that on top of everything he is going through in the clinic but every now then it all just builds up and bubbles over, hence this rant. I would give anything just to wake up in the morning with him next to me and watch him sleeping like I used to. It is the little things that I miss more than anything but I didn't really appreciate them at the time. Hindsight!
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
My heart goes out to you Ipswich. I do understand how you feel about the car. My last car was bought for me by my dad when he was ill with leukaemia. I used to drive him to his appointments, take mum shopping, etc, and the car I had wasn't very reliable. After dad died, I held onto that car for as long as I could, but finally it was just costing too much in repairs and parts were expensive. And I knew my dad would have wanted me to be safe and do the practical thing. And my dad had given me other gifts, easier to keep.
As you talk to your OH regularly, why not get some input and advice from him on the replacement car? That way you can feel he was still involved in your current car?

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Optomistic

Registered User
Jul 24, 2014
123
Manchester
My husband was diagnosed in July with Alzheimers it was a great shock although i knew something was wrong. I felt like you do for many weeks then decided to live for the day and make some memories. He has been put on Aricept which is working well and there is a big improvement most days in his mood and memory.

We have just come back from a weekend in Lancaster with my son and have had a lovely time. The only thing that upsets him is that he cant have a social drink on the tablets.

I hope you settle soon and come to terms with things.
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
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
Oh Ipswich, this is such a shock to read. I can only hope that when you need emotional support, you know we're all here for you. This one leaves me a bit speechless. Please forgive me. Those words of your OH's that you wrote break MY heart. I can't even imagine what it must be doing to you. I couldn't just read and run, as has already been said. Just wanted you to know I care.
 

Ipswich

Registered User
Jul 5, 2014
15
Dr Who Moment!

Thought I'd post today because for the first time I feel I can be positive about something!
Since my last post about the prospect of having to replace my old much loved car because MOH had bought it for me I am now feeling more at peace with the prospect. I have achieved this by buying a car which is exactly the same only it's new! It is the same colour, the same make, same model(obviously has more up to date bits inside) and I think of it as a Dr Who moment rather than changing the car. This might sound completely bonkers to some of you reading this but in my mind it works and so now instead of dreading the moment when I have to part with her, I feel like part of her is still with me and in that way so is MOH. Also, it was his suggestion that I look at that make and model as he had seen the write-ups, so in a way, he was involved in the process.

MOH has been in the clinic for 5/6 weeks now and the testing has been very intensive. He thinks they are getting to a point when they might be able to tell him about the progression of his dementia and whether anything they have been trying on him has shown a positive influence in the short term - fingers crossed.

Thanks to everyone who responded to my previous rant(s). They are so helpful, words cannot express the effect they have. Take care. :)
 
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stanleypj

Registered User
Dec 8, 2011
10,708
North West
Doesn't sound bonkers at all Ipswich - it's a great solution and I'm glad you have something to feel positive about.

Finger crossed indeed in anticipation of some kind of positives about your MOH too.

I love your name BTW. My parents moved to Ipswich when I was 17 and I lived there for a couple of years then visited for many more. It remains one of my favourite places - in fact, if I had any choice now I might well decide to move there.:)
 

truth24

Registered User
Oct 13, 2013
5,725
North Somerset
Am glad you got your car situation sorted. It must be such a relief. You must miss your man so much. Just hope you can be reunited soon.

Sent from my GT-N5110
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
In the circumstances, it was the perfect solution for your car dilemma Ipswich. And your OH has had input, and given you advice so you can feel his involvement still in your life. Well done. :)

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Ipswich

Registered User
Jul 5, 2014
15
It's Been Over A Year Now!

MOH has been a lab rat for over a year now and I live day to day waiting to hear from him. It is a really surreal situation because he texts me pretty well on a daily basis and phones roughly once a week or when he can though this is a bit hit and miss. I am still in denial really - I pretend that he is away at work and e-mail him twice a day to tell him what I've been up to. When he phones we chat and laugh exactly like we used to when he was actually just away on business!! It is really hard to understand why he had to leave so soon after the diagnosis because he still sounds so normal and I just feel that this is all time that we could have had together. I know that he hoped and still hopes that they will be able to find a drugs combination that will give him more time long term and enable him to come home but the reality is that this is not likely and I would have preferred to have had him here with me for as long as I could.
I haven't posted for ages because on the whole I have accepted this situation and get on as best I can but with Christmas round the corner I am starting to struggle with the whole thing again and just feel out of control emotionally at times.
The bottom line is that I love and miss him as much now as when he first left and time has not healed anything and probably never will so I just have to accept it.
He's not exactly having a ball over there either and I like to think that my daily "conversations" make his days a little more bearable than if I had done what he had said and forgotten about him and got on with my life (as if I could?!).
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
Lovely to hear from you again Ipswich. I have wondered now and then how things are for you. It must be so hard, this limbo you are in.

"When you're down, and troubled
And you need a helping hand
And nothing, no nothing is going right.......
Something something something something dum-de dum-dum
I'LL BE THERE....."
We all will. When things get too much, the TP community, without whom many of us would not make it, are just the other side of the keyboard! :)
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
Dear Ipswich, Been reading through all of this again. Glad to see you are both still very much in touch with each other, and the conversations still flow well. Since reading this before, after you first wrote your initial post, my hubby went into care. It's a very different experience altogether and took me ages to get used to. If he could still use a computer, I'd use Skype to chat with him. I'm going to ask about this, as he still misses me when I'm not at the home. I'll get a laptop to keep over at the CH so we can speak and see each other, if a staff member is willing to set up a time for the call.

Must ask about that next week when I go in. Have you ever considered doing the same? It might help ease the pain of separation a tiny bit.

Wishing you much courage and strength, xxxxxxxx
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
I think that's a very good idea Ipswich. I know nothing will really come close to having him physically near you but seeing as well as hearing could help you both a bit.
 
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CollegeGirl

Registered User
Jan 19, 2011
9,524
North East England
I've only just read your thread, Ipswich and feel shocked on your behalf, and yet can understand his thinking, in a way, about wanting to spare his loved ones by going away. Of course, he didn't realise that going away would just cause a whole other raft of emotions and problems for you all.

Just wanted to add my support to that of everyone else, and send love and strength your way, especially as one of the most difficult times of the year is coming up.

xx
 

Tin

Registered User
May 18, 2014
4,825
UK
Good to read your update, often wondered about you because of the extraordinary circumstances. Just lost for words to describe how brave both of you are.
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
Dear Ipswich, Been reading through all of this again. Glad to see you are both still very much in touch with each other, and the conversations still flow well. Since reading this before, after you first wrote your initial post, my hubby went into care. It's a very different experience altogether and took me ages to get used to. If he could still use a computer, I'd use Skype to chat with him. I'm going to ask about this, as he still misses me when I'm not at the home. I'll get a laptop to keep over at the CH so we can speak and see each other, if a staff member is willing to set up a time for the call.

Must ask about that next week when I go in. Have you ever considered doing the same? It might help ease the pain of separation a tiny bit.

Wishing you much courage and strength, xxxxxxxx
I used to use Skype to let William talk to some of his children /grandchildren. If he was in good form, he would smile and wave and blow kisses to them. If he wasn't he would just glower at them! But his family really appreciated the interaction.
 

Emac

Registered User
Mar 2, 2013
186
MOH has been a lab rat for over a year now and I live day to day waiting to hear from him. It is a really surreal situation because he texts me pretty well on a daily basis and phones roughly once a week or when he can though this is a bit hit and miss. I am still in denial really - I pretend that he is away at work and e-mail him twice a day to tell him what I've been up to. When he phones we chat and laugh exactly like we used to when he was actually just away on business!! It is really hard to understand why he had to leave so soon after the diagnosis because he still sounds so normal and I just feel that this is all time that we could have had together. I know that he hoped and still hopes that they will be able to find a drugs combination that will give him more time long term and enable him to come home but the reality is that this is not likely and I would have preferred to have had him here with me for as long as I could.
I haven't posted for ages because on the whole I have accepted this situation and get on as best I can but with Christmas round the corner I am starting to struggle with the whole thing again and just feel out of control emotionally at times.
The bottom line is that I love and miss him as much now as when he first left and time has not healed anything and probably never will so I just have to accept it.
He's not exactly having a ball over there either and I like to think that my daily "conversations" make his days a little more bearable than if I had done what he had said and forgotten about him and got on with my life (as if I could?!).
This is the first time I have read your story Ipswich and I am truly shocked. I can't help but think your situation is unique and most people diagnosed with dementia would never think of cutting themselves off from loved ones in this way. I can't decide if he's very brave or completely pig-headed but he obviously feels it is the right thing for him and that he is sparing you pain. I am not sure that you agree with that? Perhaps this is causing you even more pain because you are being shut out.

In some ways in making this decision and giving you no choice it must feel like your husband has left you. Yet because of the circumstances, you are still in touch and there is no closure or moving on for you. I really admire the way you have fought to stay connected to him and I am not surprised you are struggling. As you say in your post 'It is really hard to understand why he had to leave so soon after the diagnosis because he still sounds so normal and I just feel that this is all time that we could have had together.' I think most of us in your shoes would feel exactly the same. This is his choice and what he wants. I want to sit beside you, hold your hand and ask you, what do you want? You say you have to accept what he wants, but what about you? What would make you feel better? You have the support of your daughter which is good, but I wonder if you have had any counseling to cope with the turmoil of emotions this must have caused and will continue to cause. You seem as others have said to be a very strong and brave woman to accept this and still be there for your husband. Please if you haven't done so already find someone that you can lean on emotionally while you continue to support him. (Actually that is probably a good suggestion for all of us on this website!) :) Wishing you love, strength and sending a great big virtual hug. xx
 

Jinx

Registered User
Mar 13, 2014
2,333
Pontypool
Just found the updates on your thread too Ipswich. I have nothing but admiration for the way you're coping with this unprecedented situation that is not of your making, you are a strong lady. What I wondered is if the trial in NZ is for a limited time? Huge hugs xxxxxxxx


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