Still in shock

[Hoglet]

Early onset dementure

I cannot say I am still in shock, as I am in the business and I guessed what was wrong with my husband before we heard it offically. But what has been confuseing is the first mental health consulant gave the dianosis and refered him to another consulant who tends to specialise in this dianosis, but when we saw her she called it the same thing but did not use the word dementia, which totally confused my husband. The other thing that annoys me is his support team trying to get a routine going to make things easier for him insist in only recomending places either full with over 80s or severe learning difficulties. He has a mental health issue as well and sometimes he is not safe to leave then the full responsibility falls on me. I also care for elderly parents, have a lifetime illness and work from home part time, somtimes having to go to meetings 30 miles away, and i work for expenses only. But any help i want to just be with my husband we have to pay for, we have only benifits and a pension to live on as my husband id years away from the state pension. Sorry for the rant is it like this for everybody ?

 

[chrissyo]

hi there i no a little of what your feeling my partner has just been diagnosed and im finding it hard to cope with..... hes 71 and wont talk about it at all he just wont accept that he has got it and gets really angry if i say anything to him about it
so i keep my feelings to myself at the moment ...............

hugs c xx

 

[Sofia]

Hi John

I am so sorry to read about your wife and sister, it must be a very tough time for you. I really do sympathise with you. My mum who is 64 was diagnosed with Alzheimer's at 54. My dad found it incredibly hard but he had the support of myself and 2 sisters. The Alzheimer's Society is a great source of information and support. We also had a Community Psychiatric Nurse who would visit once a month. She also had a volunteer attached to the day centre who would take her out for coffee and shopping.
I hope you have some family support, you must miss your sister very much! Don't be afraid to ask for help you can't do it all on your own. I think you're so brave and giving your wife the right medication with 'lots of cuddles' enjoy your weekend away. I hope you have a lovely time xxx

 

[Tony H]

Still in shock....Lancelot John

Please try to keep yourself together in these hard and trying times and my thoughts of support go with you...............Tony, Queensland, Australia.

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

 

[gardengirl]

I think you've already received most of the answers - take one day at a time! I too had to take on all responsibilities (as my husband did all accounts diy..) Try and get your finances in order, an LPA, we did our's through solicitors, although you can do it yourself, as trying to access bank accounts/savings can be tricky, as sometimes not very helpful people on end of phone don't know what they are doing! Quite an experience! Get yourself bus pass (from council), also you can visit various trust houses (advise you are a carer and discount applies - this also applies to other places, as went to SS Great Britain for a look around). Can suggest another website of Carers UK for help in caring - have got myself a credit card size card from Crossroads Care - they hold details of family/friends with their telephone numbers - this was more of a 'just in case' .. so family would look after my husband if I was ill .. this sort of thing may not be necessary, but gives me peace of mind! By the way, laughter is a great medicine when you can laugh together! My husband tries to tell me he's had a shower/cleaned his teeth when the shower isn't wet and the sound of the toothbrush doesn't ring in my ears! Good game - but something to laugh at! Try not to dispair and keep an eye on the website - always good to get it off your chest! Take care!

 

[Tewkesburyboy]

Aricept / Doneprezol medication


my first time on this site. I was given my diagnosis three months ago, not long after my 53rd birthday. There are an awful lot of things I could go into but I am focusing on the Aricept / Doneprezol medication that I have been prescribed.
Like a good citizen I booked and paid for a driving assessment as I was unsure of how safe I really was in a car. I was having trouble with spatial awareness, parking and judging the width of the car were issues. I passed the assessment and informed DVLA and my insurers. Only three days after going onto the Aricept I had cardiac arrest, not recommended, and very worrying for my darling wife.
I had previously had a heart attack in 2008 and the beta blocker tablets slow the heart rate The Aricept has a side effect of lowering the heart rate also. In the ambulance they administered morphine, yes that also lowered the heart rate and it gave up at that point.

I also suffer from many of the other side effects of the drug - fatigue (like you wouldn't believe) dizziness and nausea along with the bradycardia (lowered heart rate). Then the letter came from DVLA this past weekend stating that following on from medical information received they were revoking my driving licence on the grounds of the side effects of the medication I am now on. I can appeal for a new licence once I can prove that I no-longer have the side effects. The new licence would be for car only, not the extended entitlement I used to have. Only two years ago I was a company director and operating at a high level, I graduated with an MBA masters degree only 4 years ago. Now I am working two days a week for a charity, no driving licence (I now have my bus pass - whoopee! only took two days to process HOW EXCITING) and feel ill all the time. Real life changing stuff. On the plus side, my linguistic ability has returned to near previous levels, I still struggle when under pressure / stressed.
I just though it may be worth sharing my experience on the drug.

 

[EAS509]

Young Onset Alzheimers

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 John,
This is a great site to share your thoughts and feelings. My husband was diagnosed at age 54, back in 2001. He is in late stage care now and transferring him into care was a dreadful time for me.
In the last year I decided to put pen to paper and write about our experiences over since the diagnosis and my thoughts coming to terms with the inevitable decline.
As carers we set a high benchmark at the start - to look after our partner - but with the progression of the disease, it becomes more difficult to keep those promises.
I have tried to include the good and the bad in my book. There aren't many books that are written from a carer's viewpoint.
It was launched at the Alzheimers New Zealand conference last week and is called The Black Hole. It can be ordered via youngonsetalzheimers.com

Keep well, to look after someone else, you need to take care of you first.
Eileen