Still in shock

[Lancelot John]

My first post here so please forgive the length and the self indulgence.

Last June my sister, with whom I was very close, collapsed in her GP’s surgery and was rushed to intensive care. It soon became apparent that she had an inoperable brain tumour and she slowly slipped away, finally loosing her fight in early November. (Co-incidentally, today would have been her birthday which may explain my maudlin mood this evening). Throughout this time I had the unstinting support of my wife, but, in hindsight, I can now see that those atypical memory glitches of hers which I put down to anxiety or tried to pretend weren’t happening, were early signs of a serious problem. Come January and she was clearly struggling at work as she was no longer her usually efficient and competent self. A visit to our GP that month told us what we already feared that it was early onset dementia (she’s 58). This was later confirmed by a specialist (much to my annoyance and resentment this was achieved by ‘going private’ as our appointment for the initial NHS consultation wasn’t until early April). Needless to say these twin disasters have hit me very hard indeed. I sorely miss my sister’s wise counsel and support at a time I am in so much need of it. I feel hopelessly lost and inadequate to the task that now faces me.

My wife seems to have taken the grim news calmly and with great stoicism. There have been moments of confusion and anxiety, of course, but she has coped very well. Fortunately, her ability linguistically has not been impacted, but her short term memory and ability to plan have been badly hit. She has not yet been given any medication (although we have another appointment in a couple of a week). At the moment, then, the only ‘medication’ she’s getting is lots of cuddles, love and as much laughter as I can induce. But I know I am struggling to contain my feelings and emotions. It is when she’s not about that I find it very hard to control my emotions and become upset. I am desperate that she should not be aware of this since I want to do nothing to make things more difficult than they already are for her. At the moment I don’t have the courage to look ahead and acknowledge the problems that we will (soon?) have to face, but I know that I must do so. I hope that writing down these feelings and posting them here will help me deal with them. Any suggestions or ideas from this forum would be greatly appreciated. I love my wife dearly and don’t want my weakness to let her down,

John

 

[ggma]

Welcome to TP. This is the place to share your worries and frustrations, everyone feels them with the illness. The only advice I can pass on is to take one day at a time, and enjoy the good ones.

Hopefully your wife will get medication that will help, there is no cure but for lots of people the medications do help slow down the illness. All the familar routines you have as a couple will help your wife, and if is surprising how well keeping to routines people do manage for a long time.

My thoughts are with you, there are no easy answers but do look after yourself as well as your wife and try to build some support networks for times when you need them.

All the best, take care

 

[Izzy]

Hello John. I'm so sorry about your sister and your wife. I know hard to come to terms with the diagnosis and also try to stay strong for your partner. You will get lots of help and support on this forum. I do hope you get medication soon. Aricept certainly seemed to help to slow the process for my husband. Take care.

 

[lin1]

Hello John
Welcome to TP
I am sorry to hear about your sister
then your wife being diagnosed with this illness
so soon after you lost your sister

As someone has already said , try to take it one day at a time

Its important not only for you but for your wife as well, that you look after yourself
a couple of hrs a week doing something you enjoy or just having a rest works wonders
also contact the Alzheimers society helpline, number is nr top right of pages here, they can put you in contact with your local branch , who will know whats available for you and your wife in your area

I hope you find TP as helpful and supportive as I have

 

[chris53]

Hello John, am so sorry for the pain you have faced recently,your attitude with cuddles and laughing is the best medicine I hope very much you will get a positive result and understanding when you both attend the appointment. Try to keep this positive approach and remember there is lots of help out there -this website is such a help and makes you understand that you are not alone.

 

[lady g]

Hi john, so sorry to hear about your sister and your wife. Everyone on TP is here to offer what advice they can. You will never be alone on here, i know that. Thinking of you both and dont be afraid to ask for help. lots of love and hugs xxx

 

[Grannie G]

Hello John

It is not surprising you are struggling to control your emotions. What you are faced with is is daunting at the best of times and following so closely on the loss of your sister, has caught you at your most vulnerable.

Try not to look too far ahead. What you fear may be ages away and you do not want to waste the precious time you now have with your wife.

Easier said than done I know but I find myself `blinkered` . My husband lives in the here and now and I try my best to live it with him.

 

[jeany123]

Hello John ,I am so sorry about your sister and then this diagnosis for your wife must have come as a awful shock , I haven't been on here very long but I was made welcome, my husband has vascular dementia and everyone has been so kind to me and they will be to you as well, you can say things on here that people who haven't been in this situation would not understand ,

Best wishes to you and your wife ,

Jeany x

 

[Helen33]

Hello John,

Someone once said to me "the role of caregiver to someone with dementia is a role we 'grow' into". That was so true. None of us know how to go about things and know how we will manage at the onset but we do 'grow' into it.

I am glad that you have found Talking Point. It was this forum that enabled me to grow into my role and it proved to be a life-saver to me and extremely beneficial to my husband who I was caring for. I will look forward to seeing you around the site.

Love

 

[frazzled1]

My first post here so please forgive the length and the self indulgence.

Last June my sister, with whom I was very close, collapsed in her GP’s surgery and was rushed to intensive care. It soon became apparent that she had an inoperable brain tumour and she slowly slipped away, finally loosing her fight in early November. (Co-incidentally, today would have been her birthday which may explain my maudlin mood this evening). Throughout this time I had the unstinting support of my wife, but, in hindsight, I can now see that those atypical memory glitches of hers which I put down to anxiety or tried to pretend weren’t happening, were early signs of a serious problem. Come January and she was clearly struggling at work as she was no longer her usually efficient and competent self. A visit to our GP that month told us what we already feared that it was early onset dementia (she’s 58). This was later confirmed by a specialist (much to my annoyance and resentment this was achieved by ‘going private’ as our appointment for the initial NHS consultation wasn’t until early April). Needless to say these twin disasters have hit me very hard indeed. I sorely miss my sister’s wise counsel and support at a time I am in so much need of it. I feel hopelessly lost and inadequate to the task that now faces me.

My wife seems to have taken the grim news calmly and with great stoicism. There have been moments of confusion and anxiety, of course, but she has coped very well. Fortunately, her ability linguistically has not been impacted, but her short term memory and ability to plan have been badly hit. She has not yet been given any medication (although we have another appointment in a couple of a week). At the moment, then, the only ‘medication’ she’s getting is lots of cuddles, love and as much laughter as I can induce. But I know I am struggling to contain my feelings and emotions. It is when she’s not about that I find it very hard to control my emotions and become upset. I am desperate that she should not be aware of this since I want to do nothing to make things more difficult than they already are for her. At the moment I don’t have the courage to look ahead and acknowledge the problems that we will (soon?) have to face, but I know that I must do so. I hope that writing down these feelings and posting them here will help me deal with them. Any suggestions or ideas from this forum would be greatly appreciated. I love my wife dearly and don’t want my weakness to let her down,

John

hi there,

So sorry to hear about your sister and now of your wife's diagnosis. There are different types of dementia and different rates at which people are affected and in our case i would offer the advice to focus on the physical issues, its really important for you and your wife to try to stay mobile and active so you can enjoy hobbies together and the simple pleasures in life like admiring a beautiful garden and being able to visit places of natural beauty or go to nice cafes or places to eat and to see intersting new things. My experience of dementia is of the memory being impared but of this happening quite slowly and to be honest, as we have told friends, family and community of our Alzheimers diagnosis, everyone has been wonderful and from a social point of view it hasnt impacted too much on our life as a whole just a few things like finances which lots of people WITHOUT dementia need help with as life is so complicated nowerdays. You dont say how active physically your wife is...can she walk unaided fine? Could you both go to an exercise class together? Something fun of your choosing, can be anything from zumba to ballroom, line dancing, disco, whatever.....or if she needs a wheelchair, then there are wheelchair exercise classes available and NHS physios...i would say the physical side is maybe even more important than the mental as the exercise builds confidence and staves off depression and will put you both on a high! Also v good for the memory! Let us all know how you get on because with your kindness and devotion to eachother you are going to be just fine.

 

[stanleypj]

My heart goes out to you John. I'm sure you will find great help and support on TP.

My wife first attended a memory clinic at age 50. She wasn't finally diagnosed until last year (aged 62). The advice we were given during this time of increasing difficulty and frustration was 'live a good life'. We did try to carry on doing the things we liked doing and had many great experiences together.

Don't assume that everything will get dreadful 'soon'. You may well have many years together.

As someone else has said, you do grow into the role that is required. The most difficult time for me was when my wife had a sudden sharp decline last autumn, frequently became aggressive, stopped eating properly and would not go to bed until the small hours. I was close to the edge.

But I believe that you can get used to anything, given time. Gradually we both 'recovered' and now life is back to something like what passed for normal before the unexplained decline, apart form the fact that Sue frequently has conversations, sometimes quite heated, with her auditory hallucinations.

The key point to remember is that you know your wife best. Follow your instincts, which you are already doing with 'cuddles, love and laughter' - these may turn out to be of more use than medication; they have for us but everybody's different - another important maxim.

But as you say, when you are alone, things can look very bleak. Try to get in contact with an admiral nurse, a wonderful though pitifully meagre resource (3 for the whole of Manchester). There's a phone number 0845 257 9406 for direct access. They can help you by phone but should also be able to tell you whether there is an admiral nurse in your area. It took me a long time to get this support but it's been very helpful.

Do keep posting. And have a look at my blog (f you have the time!)

Most important, look after yourself.

 

[allthings]

Hi john sorry to hear of another early onset , it has been 6 months since my wifes diagnosis at 51 years of age, i have just been able to come to terms with this, but have learned to really look after myself ,also this is very important part of giving the best care to your loved one. It takes time because what you are doing is greiving for the loss of your loved ones abilities and realize that you have to look after a disabled person. I have been able to cope very well since accepting what is happening its not easy but it does not need to be the end of the world

 

[Bodensee]

50,51,58 years of age so very young to have AD

So many people in their 50's being told they have AD is alarming, and todays story in the Daily Mail regarding farmer Peter Russell with AD aged just 58 years being tasered by police is disturbing.
Lets hope that other neurological diseases have been ruled out, this epidemic of 50+ year olds with AD in the UK is very shocking.

 

[stanleypj]

What is the evidence for saying there's an epidemic?

I'm not disputing it, it's just that I've never heard talk of an epidemic before. Is there actually an increase or is it just that diagnosis has improved or that we just weren't aware previously?

 

[Lancelot John]

Many thanks to all for your most kind and helpful response. I was at a fairly low ebb when I posted - perhaps not the best time to do so. I am grateful for the warmth of the welcome and the practical ideas that people have offered. Most, if not all, of which I am sure I will adopt. The notion that I will be able to 'grow into' the role and will have time to do so was particularly comforting. My wife was always the one who dealt with household bills and organised things (a degree in Economics helped!) so I'm daunted by taking on this novel role. I've always been the forgetful and absent minded member of the team so I'll have to 'shape up'!

It is early days, but I do think that posting here has helped. So too has a moment earlier today when my wife and I allowed ourselves a tearful moment which told us that it's OK to express our emotions. I think we'd both been trying to 'protect' the other by maintaining a stiff upper lip when we were together. Somehow this 'cleared the air' and removed a little of the pressure I've been feeling. It helps too that we decided to treat ourselves to a weekend at a 'posh' hotel in Brighton! As for the digression about whether there's an epidemic of the condition, I suggest it's more appropriate to start a new thread on the issue as those who might have interesting observations will probably not see the post here. So many thanks once again,

John

 

[nicoise]

Dear Lancelot John,

I'm glad you've found support since your posting.

Indeed, I often think that we do post at our lowest ebb - because we've hit a type of brick wall in our coping skills, or are tackling a new problem we've not encountered before, or just need to reach out and hopefully find someone who understands.

I often find just reading posts helps me out with my particular problem. But I also enjoy the social interraction of the forum - which can help when I feel isolated.

Enjoy your weekend in Brighton - I hope the sun shines for you!

 

[jeany123]

Many thanks to all for your most kind and helpful response. I was at a fairly low ebb when I posted - perhaps not the best time to do so. I am grateful for the warmth of the welcome and the practical ideas that people have offered. Most, if not all, of which I am sure I will adopt. The notion that I will be able to 'grow into' the role and will have time to do so was particularly comforting. My wife was always the one who dealt with household bills and organised things (a degree in Economics helped!) so I'm daunted by taking on this novel role. I've always been the forgetful and absent minded member of the team so I'll have to 'shape up'!

It is early days, but I do think that posting here has helped. So too has a moment earlier today when my wife and I allowed ourselves a tearful moment which told us that it's OK to express our emotions. I think we'd both been trying to 'protect' the other by maintaining a stiff upper lip when we were together. Somehow this 'cleared the air' and removed a little of the pressure I've been feeling. It helps too that we decided to treat ourselves to a weekend at a 'posh' hotel in Brighton! As for the digression about whether there's an epidemic of the condition, I suggest it's more appropriate to start a new thread on the issue as those who might have interesting observations will probably not see the post here. So many thanks once again,

John

I hope you have a lovely weekend ,share as much as you can with your wife ,happiness and sadness , enjoy all the lovely times together .


Jeany x

 

[Helen33]

Dear John,

It was nice to read that you and your wife had a special moment this morning which felt like a release of tension. Poshing it up at a lovely hotel in Brighton sounds wonderful and I hope that you both have a great time. We'll try and organise some nice, sunny weather for you

The more I felt supported, mostly by Talking Point, the better I felt and the more confident I became. This had a knock-on effect on Alan, my late husband. I soon realised that the better I was, the better it would be for him and so I started to take great care of myself as an act of love towards him.

Have a really good time and I hope you will come back and tell us all about it.

Love

 

[Lancelot John]

Thank you again for your continued support and kindness.

Fortunately, my wife continues to be well physically and only the odd lapse in memory reminds us that all is not well. It is really a most peculiar condition. Liz had (has even) no problem remembering the number of our hire car when on holiday in April which I certainly couldn't manage. Yet she has no recall of the much shorter number of our hotel room. Yet when reminded of the latter instantly replied that it was the number of the bus which ran from her childhood home to Watford (306 if you really want to know). We'll chat about something in the paper in the morning which she'll introduce as a novel topic of conversation in the afternoon having no recollection of what we talked about previously.

If the sun shines in Brighton then I'll know who to thank!

 

[afossil]

My husband was diagnosed at 60, though looking back it was obvious he had problems before that. I really do think that the fact that he went on medication straight away helped to keep it at bay for many years and he continued to do as much as he could with support from our family and the local community. This year he has gone into care but we had ten years together. Think positive. As a couple you can do this!
afossil