Newly diagnosed with Alzheimers, where do we go from here....?

[Handel]

For the last 2 years we have lived under the 'shadow' of the short term memory problem... Mild Cognitive Impairment...no treatment possible, no answers to the many questions...Now he has the diagnosis, Alzheimers (the dreaded word). Now we have a treatment...not a cure but something....! He has been my rock, my husband and my friend for 52 years, he's always been there for me......he organised finances, travelling, social life etc and has always had a great sense of humour.... he always makes me laugh.......! I'm going to lose him.....I know it, I just don't know when.
How do I plan for this? How do I ensure that he is happy? How do I organise our life together? What support is there locally? Will he accept it? (He seems to be unaware of his condition)....How do I make my family understand the significance of this?

 

[lin1]

Hello Handel
Welcome to TP, I hope you find it as helpful and supportive as I have.

Am sorry to hear about your Husband.
Though you often know something is wrong long before, the diagnosis can rock you to your core.

I am going to put a link to one of our many factsheets on here . Its about after diagnosis
Sorry it is a bit of a read, will give you lots to think about and do. but you don't have to do things by yesterday

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

I suggest if your husband goes into denial about his condition (some people do , some don't) that you don't push him to accept it.

Their is an old thread on here about compassionate communication, it may well be to early for your Husband atm but handy to know for the future, though I must say it is not an easy act to follow, it also give a little insight .
http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Please feel free to ask questions, we will do our best to help

Would your family come here and at least read ?

Others will be here later today so keep checking back here.

 

[marsbar]

Newly diagnosed

For the last 2 years we have lived under the 'shadow' of the short term memory problem... Mild Cognitive Impairment...no treatment possible, no answers to the many questions...Now he has the diagnosis, Alzheimers (the dreaded word). Now we have a treatment...not a cure but something....! He has been my rock, my husband and my friend for 52 years, he's always been there for me......he organised finances, travelling, social life etc and has always had a great sense of humour.... he always makes me laugh.......! I'm going to lose him.....I know it, I just don't know when.
How do I plan for this? How do I ensure that he is happy? How do I organise our life together? What support is there locally? Will he accept it? (He seems to be unaware of his condition)....How do I make my family understand the significance of this?

Morning Handel,
Sorry to hear about the recent diagnosis of your husband. It's always hard to offer words of comfort without giving false hope that somehow things are going to get better. All I can tell you is what's happened to us when my mom of 83 got diagnosed. ( briefly or I could go on typing all day! ) I have four brothers and two sisters and my dad passed some years ago. We noticed things weren't right with mom... consistent repeating of things and all the other things that go hand in hand with the disease. after diagnosis I became quickly aware I would have to " read up" to get to understand this and be able to somehow manage the changes in mom. She is still in denial but is worried that she is unable to manage the things she used to do intuitively. We have all reacted differently to the changes but I have found that the more open and understanding I can be, the easier life is for me and mom. Life has changed for her dramatically but despite the anxiety, anger, and frustrating moments we can still enjoy the lovely memories we have for now, sometimes prompted by photos, music etc.
Her life is changing constantly and we have to change with it to ease the situation as best we can. Please just read all you can, accept the help that is on offer on this website, from your local alzheimers society, your GP etc and try not to do it all alone.
I can't know what it is like to have a lifelong partner suddenly plunged in to this illness but I do know what its like to have my mother who was strong and always there when times got hard for us to become so different... so quick.
Best of luck ... and keep coming back.

 

[PeggySmith]

Have a look at this:
http://www.youtube.com/watch?v=GMETLHqBTOE

Some of us have done the online course this video was made for, it's really interesting and helpful. This lady cares for her husband and gives a very honest account of what it feels like. The downside is that it's 12 minutes long.

 

[malc]

you enjoy the time you have together day by day,yes alzheimer's will be the elephant in the corner of the room,there's no getting away from the fact,i've found the only way to cope is to live day by day,treat denise has denise,not the person with alzheimer's,she's now 44,we're 4 years in after diagnosis and holding her own,i believe this to be because i treat her normal and so does our support at the hospital,i look at it this way,while i'm sat depressed i'm missing out on possible good times with my wife,the only thing i do different is make birthdays etc really special,don't get me wrong it's hard ie weeks holiday knowing that 2 days later she won't have a clue she's been away,but i remember and those memories are special.

 

[Tinkerbelle258]

you enjoy the time you have together day by day,yes alzheimer's will be the elephant in the corner of the room,there's no getting away from the fact,i've found the only way to cope is to live day by day,treat denise has denise,not the person with alzheimer's,she's now 44,we're 4 years in after diagnosis and holding her own,i believe this to be because i treat her normal and so does our support at the hospital,i look at it this way,while i'm sat depressed i'm missing out on possible good times with my wife,the only thing i do different is make birthdays etc really special,don't get me wrong it's hard ie weeks holiday knowing that 2 days later she won't have a clue she's been away,but i remember and those memories are special.

Well said Malc. At the end of the day, all we can really do is make each day as normal/special as we can.

 

[Scarlett123]

For the last 2 years we have lived under the 'shadow' of the short term memory problem... Mild Cognitive Impairment...no treatment possible, no answers to the many questions...Now he has the diagnosis, Alzheimers (the dreaded word). Now we have a treatment...not a cure but something....! He has been my rock, my husband and my friend for 52 years, he's always been there for me......he organised finances, travelling, social life etc and has always had a great sense of humour.... he always makes me laugh.......! I'm going to lose him.....I know it, I just don't know when.
How do I plan for this? How do I ensure that he is happy? How do I organise our life together? What support is there locally? Will he accept it? (He seems to be unaware of his condition)....How do I make my family understand the significance of this?

Hi Handel, and welcome to Talking Point. TP is my rock and support, and you will find wonderful, help, support and understanding here. Like you, I've been with my husband for a lifetime, just a couple of years less than you, but he was diagnosed 11 years ago.

To begin with, he was prescribed Aricept, and though it doesn't cure Alzheimer's, it seemed to slow things down, and we had a few good years, when we were able to live quite a normal-ish life. You ask how you should plan for this. I would say it is important to make the most of the time you have now.

Cherish your time together, do the things you can still do, whilst you can, and sod the rest of the world. A few years ago, I realised I was a midow, neither married or a widow, and that was when I grieved for the man I loved.

If your hubby always attended to finances, now is the time for you to learn, whilst he can still explain things. You ask how you can make him happy, well whilst he can still express his wishes, ask him about holidays - is there anywhere he fancies going to?

Regarding family and friends - everyone is different. Twelve years ago, I knew nothing about Dementia and Alzheimer's, or how to react to someone who had this - but believe me, you learn, however, you can't make others accept it if they're not ready.

For 2 years John went to Day Clubs, firstly just a couple of times a week for a couple of hours, but increasing as time went on. A few months ago he became a resident of a Care Home, and we've now entered another phase.

It's frightening, confusing and worrying when your loved one is first diagnosed, but you'll get so much help from cyber friends here. I wish you well.

 

[Olliebeak]

Me too ....

I joined this forum tonight and find Handel's post. I am just in the (nearly) same position. Today is our wedding anniversary and of course he has not remembered but he hasn't for a few years now - although it has only been the last year or so I have realised what I am facing. Just yesterday we sat in the Memory Clinic and had the diagnosis right between the eyes. I have worked in healthcare all my working life and have no illusions. Maybe the Aricept and B12 will make a difference but it's delaying the inevitable. I am 15 years younger than my husband and was looking forward to a retirement of travelling and enjoying our lives together - feeling sad - and lonely.

 

[Optomistic]

Feeling Sad

My husband was diagnosed with Alzheimers about 8 weeks ago and at first it was a shock. He has been having tests for 12 months a nobody mentioned it before. His main problem is he cant speak sometimes tell me what he wants to say this is what made us seek help.

I am12 years younger than my husband and was looking forward to some quality time together now the children have left home. It seems like your future has been taken away.

He started on Aracept 4 weeks ago and it has made quite a difference he is much more confident and not as confused. On Thursday he goes on the 10mg dose hopefully it will give us some more time together.

I cope by taking everyday as it comes we go out a lot and play bingo and love shopping.

The only thing that really scares me is all the stories about getting no support and having to fund care yourself. This needs sorting out other illnesses get the funding.

 

[Handel]

Thank you for your words of support -

Hi Handel, and welcome to Talking Point. TP is my rock and support, and you will find wonderful, help, support and understanding here. Like you, I've been with my husband for a lifetime, just a couple of years less than you, but he was diagnosed 11 years ago.

To begin with, he was prescribed Aricept, and though it doesn't cure Alzheimer's, it seemed to slow things down, and we had a few good years, when we were able to live quite a normal-ish life. You ask how you should plan for this. I would say it is important to make the most of the time you have now.

Cherish your time together, do the things you can still do, whilst you can, and sod the rest of the world. A few years ago, I realised I was a midow, neither married or a widow, and that was when I grieved for the man I loved.

If your hubby always attended to finances, now is the time for you to learn, whilst he can still explain things. You ask how you can make him happy, well whilst he can still express his wishes, ask him about holidays - is there anywhere he fancies going to?

Regarding family and friends - everyone is different. Twelve years ago, I knew nothing about Dementia and Alzheimer's, or how to react to someone who had this - but believe me, you learn, however, you can't make others accept it if they're not ready.

For 2 years John went to Day Clubs, firstly just a couple of times a week for a couple of hours, but increasing as time went on. A few months ago he became a resident of a Care Home, and we've now entered another phase.

It's frightening, confusing and worrying when your loved one is first diagnosed, but you'll get so much help from cyber friends here. I wish you well.

I am so glad I found this forum, I feel a lot better after reading these posts....thank you!

 

[Handel]

I feel sad too but I want to make the most of our time together.

I joined this forum tonight and find Handel's post. I am just in the (nearly) same position. Today is our wedding anniversary and of course he has not remembered but he hasn't for a few years now - although it has only been the last year or so I have realised what I am facing. Just yesterday we sat in the Memory Clinic and had the diagnosis right between the eyes. I have worked in healthcare all my working life and have no illusions. Maybe the Aricept and B12 will make a difference but it's delaying the inevitable. I am 15 years younger than my husband and was looking forward to a retirement of travelling and enjoying our lives together - feeling sad - and lonely.

We seem to have joined this forum at a similar point in our lives, maybe knowing that we are not alone will be of some comfort.......

 

[Trisha4]

My husband was diagnosed with Alzheimers about 8 weeks ago and at first it was a shock. He has been having tests for 12 months a nobody mentioned it before. His main problem is he cant speak sometimes tell me what he wants to say this is what made us seek help.

I am12 years younger than my husband and was looking forward to some quality time together now the children have left home. It seems like your future has been taken away.

He started on Aracept 4 weeks ago and it has made quite a difference he is much more confident and not as confused. On Thursday he goes on the 10mg dose hopefully it will give us some more time together.

I cope by taking everyday as it comes we go out a lot and play bingo and love shopping.

The only thing that really scares me is all the stories about getting no support and having to fund care yourself. This needs sorting out other illnesses get the funding.

Like many on here I totally understand what you are feeling. I empathise and sympathise. Your words reflect my own feelings completely. But many things are still possible. We still travel - just had 5 weeks in France in our motorhome, visited Panama in January, Greek Islands in May and I'm currently organising a holiday in China for next year.
I think there are important things to put in place, firstly lasting power of attorney which gives you access to asking for a cut in council tax. We did the lasting power of attorney immediately we knew there was a problem.
I also went on a CRISP course (run by Alzheimer's society) which I found very helpful. And of course there's talking point where there is always someone to 'talk' to, which many of us find so supportive.
Your husband's Alzheimer's sounds as if it had affected him in the same way as my husband's. He cannot find words and has lost understanding of numbers. It was medically described as an uncommon Alzheimer's.
All the very best to you and keep meeting on TP.

 

[Scarlett123]

A warm welcome to all the Newbies out there, and though it is sad that you have needed to look for this Forum, you couldn't be in a better place. As the saying goes "if you've seen one person with Alzheimer's - you've seen one person with Alzheimer's".

Trisha's post is a shining example of the differences. As a couple, they can still have many holidays together, which is wonderful, and create marvellous memories together, whilst they still can.

But one size doesn't fit everybody, both health-wise, perhaps family commitments, finances etc, so you have to tailor your life to fit all these elements. Some people are blessed with a large, supportive circle of family and friends, whereas others find that their friends drift away, and their family develop ostrich tendencies.

But whatever you face, you can be sure that there will be somebody on here, who has experienced similar, or can make suggestions, so that you don't feel alone.

 

[chick1962]

Trisha4 welcome to TP I am also 13 years younger then my husband who got diagnosed with Alzheimer's 4 years ago. He has similar problems with finding the right word and numbers as well as short term memory loss. However 4 years in we are holding up well and still go out, just been out on the bicycle for an hour, and take each days as they come so far his memory test scores are staying the same but he changed medication from memantine to rivastigmine last year. The yearly declines are minimal so far, but the collection of other ailments has gone up and mild vascular dementia been diagnosed this year. We both try not to worry too much about what will happen and when as everyone's journey is so different . Make sure all the financial things like poa and the health ones are sorted out and enjoy being together and create lovely memories for when things take a downward step . Much love to you


Sent from my iPhone using Talking Point

 

[LadyA]

Welcome to those who are new.
The only thing to remember for right now is that Dementia does not act like a guillotine once the diagnosis is pronounced! Things are the same the day after diagnosis as they were the day before. Except that now you know your enemy by name, and to a certain extent, knowledge can be power. And you have come to the right place to learn. Not only about dementia, but about dealing with officials, and all the other unexpected things that crop up along the journey.

Deep breaths! The world has not ended yet, and there is still living to be done! One step at a time, one day at a time. "Do not worry about tomorrow, for each day has enough trouble of it's own." (Jesus)

 

[Olliebeak]

Thanks Handel - and the others who responded -good to know others are in the same boat. I do agree that having a diagnosis does not mean the world has changed. I am sure everyone in this situation goes through a period of panic and then a sort of grief but now, like lots of others on this forum, I can see I need to learn to manage the problems and make the most of what we have now.

 

[Trisha4]

Welcome to those who are new.
The only thing to remember for right now is that Dementia does not act like a guillotine once the diagnosis is pronounced! Things are the same the day after diagnosis as they were the day before. Except that now you know your enemy by name, and to a certain extent, knowledge can be power. And you have come to the right place to learn. Not only about dementia, but about dealing with officials, and all the other unexpected things that crop up along the journey.

Deep breaths! The world has not ended yet, and there is still living to be done! One step at a time, one day at a time. "Do not worry about tomorrow, for each day has enough trouble of it's own." (Jesus)

Wise words. Thank you