New to this frightening world

[SimplySimon]

Hi,

This is my first post here as, on Thursday, my wife (59 years old) and I visited the Exeter One Stop Shop for an assessment and scan. She got a ACE III score of 54 and were told that she has Moderate Alzheimer's Disease. The brain scan didn't show any deterioration which, I can only assume is good. The first symptoms started really showing themselves just 6 months ago.

We are three and a half years in to a planned 5+ year caravan trip around Europe, visiting as many countries as possible, blogging as we go. We decided to return from Greece after Christmas as we couldn't control what we thought was hypothyroidism, and Julia was starting to worry about it. We now have to decide, after trying out a few shorter trips, whether we continue our trip, or if we put down routes and wait for whatever is thrown at us.

I don't for one minute, expect that we are the only couple to be dropped in to this whirlwind of fear and frightening information, but the panic of not knowing what is going on or what is going to happen next is already taking its toll. Luckily we are still, after 33 years of married life, deeply in love. I will stick by her to the end and take my marriage vows very seriously.

Julia is at the stage of complete denial and forgets most things that are said to her within a few seconds. She knows who I am but doesn't know my middle names, birthday or anniversary dates, none of which is important anyway. I'll have a look through the forums here and see what advice I can find.

Thank you for your time in reading this, especially if you are in the same or similar boat to us.

Simon

 

[Grannie G]

Hello @SimplySimon. Welcome to Talking Point.

I`m no medic but all I can tell you is when my husband was diagnosed with Alzheimer`s his brain scan showed some global shrinkage. If your wife`s scan didn`t show any deterioration at this stage, it can only be a good sign.

After diagnosis we managed a few holidays , trips to India, Italy, Greece and the Canary Islands. They weren`t uneventful but they were still enjoyable. During the last holiday my husband experienced a panic attack and that was a bit frightening for both of us as we had no one to ask for help.

I would advise you to consult with your wife`s doctor about further travel . The only trouble is, most are non committal and leave the final decision in your hands.

Let`s see what others on the forum suggest. I know of many successful holidays among TPers and do hope you will be able to stick to your plans.

 

[SimplySimon]

Hello @SimplySimon. Welcome to Talking Point.

...Let`s see what others on the forum suggest. I know of many successful holidays among TPers and do hope you will be able to stick to your plans.

Thank you for the reply to my post, I am fairly positive about things, so hopefully I can stay relatively sane over the coming months and years (?)

 

[Spamar]

Hi Simon. There are several people on here who have caravan holidays, hopefully they will be in touch.

The first things you need to do is wills for you both and LPA ( Lasting Power of Attorney) for you both. There is Financial, as well as Health and Welfare. These forms can be downloaded and completed.
Well done is you’ve already done these!
There may be money to claim, Carers Allowance for you and Attendance Allowance for you wife. When my OH was at the start of all this, Age UK came and did the form filling, a great help!

 

[karaokePete]

Hello @SimplySimon, a warm welcome from me too.

We are in a somewhat similar position in that my wife is early on-set Alzheimer's and she got her diagnosis at a time when we were starting to spend prolonged periods outside the UK. In my wife's case 2 areas of shrinkage were seen on the brain scans, along with some vascular disease. My wife was put on Donepezil and Memantine and these have helped with daily functioning and slowed the rate of decline in language, cognitive and memory skills.
We are just home from a long trip abroad and have already booked our next trip and are making basic plans for the one after that. Don't lose heart and don't stop living is what I say. After all, plans can be changed or abandoned, as you have already discovered.
Good luck to the both of you.

 

[SimplySimon]

Spamar, we have will sorted out a couple of years ago and LPA packs sent off for yesterday. We are waiting for a post-diagnostic appointment. I have started looking at the different benefits we may be entitled to, so most seems to be in hand. Thank you for your reply

 

[Bree]

You my also be able to apply for a rate reduction, check with your local council.

It's scary at first when you have your OH diagnosed with AZ, but to be honest, all cases differ. Your wife is very lucky to have such a dedicated husband, just do what you are able to do for her, and consult her memory doctor, or GP for guidance. MOH and I have been on holiday abroad, but the last time the bustle of the airport, and flight was too much, so we won't be going again sadly, As has been mentioned a caravan holiday is good, as you are more or less in your own space, with no restrictions.

Best wishes

 

[SimplySimon]

Hello @SimplySimon, a warm welcome from me too.

Don't lose heart and don't stop living is what I say. After all, plans can be changed or abandoned, as you have already discovered.
Good luck to the both of you.

Thank you for the reply. I feel heartened by you comments. Neither of us want to stop yet, but the healthcare team suggested that we should consider stopping and building a secure place for Julia to live in to help with knowing where she is and where things are. After 3 and a half years in the caravan, we both feel that she knows as much as she ever will do, even though most things in the cupboards are now only found with help (6 cupboards in all!).

 

[SimplySimon]

You my also be able to apply for a rate reduction, check with your local council.
... a caravan holiday is good, as you are more or less in your own space, with no restrictions.

Thank's for that, yes I'll look into rates reduction. We both love caravanning, so it would be upsetting for both of us if we had to stop.

 

[karaokePete]

Thank you for the reply. I feel heartened by you comments. Neither of us want to stop yet, but the healthcare team suggested that we should consider stopping and building a secure place for Julia to live in to help with knowing where she is and where things are. After 3 and a half years in the caravan, we both feel that she knows as much as she ever will do, even though most things in the cupboards are now only found with help (6 cupboards in all!).

The first year we went away for so long my wife had a complete meltdown when we returned so the second time I marked all doors, cupboards etc., with names and contents before we went away as well as marking machines like the microwave with numbers to show the sequence of operation and this helped a great deal. Before our latest trip, post diagnosis, I took a video of our home, opening all doors and cupboards as I went along, and showed this to my wife every time she asked for it when we were away. My wife was also on the meds I mentioned this time. When we returned my wife's reaction was what I would call 100% normal. Result!!

 

[SimplySimon]

The first year we went away for so long my wife had a complete meltdown when we returned so the second time I marked all doors, cupboards etc., with names and contents before we went away as well as marking machines like the microwave with numbers to show the sequence of operation and this helped a great deal. Before our latest trip, post diagnosis, I took a video of our home, opening all doors and cupboards as I went along, and showed this to my wife every time she asked for it when we were away. My wife was also on the meds I mentioned this time. When we returned my wife's reaction was what I would call 100% normal. Result!!

Wow, what a brilliant idea. So glad it worked for you, I'll try the same

 

[nitram]

my wife had a complete meltdown when we returned so the second time I marked all doors, cupboards etc.,

Taking images of the contents is another way, pieces of pottery, utensils, type of food, etc.
Print off at suitable size and stick on cupboard or drawer, nothing fancy, plain A4 paper will do.
This way they actually see what they are looking for.

 

[karaokePete]

Taking images of the contents is another way, pieces of pottery, utensils, type of food, etc.
Print off at suitable size and stick on cupboard or drawer, nothing fancy, plain A4 paper will do.
This way they actually see what they are looking for.

Thanks.
Third time away I took a video, opening all doors as I wandered round the house looking in rooms and cupboards. I was able to show my wife the video while we were away and it worked a treat.

 

[SimplySimon]

Taking images of the contents is another way, pieces of pottery, utensils, type of food, etc.
Print off at suitable size and stick on cupboard or drawer, nothing fancy, plain A4 paper will do.
This way they actually see what they are looking for.

Excellent ideas here, thank you

 

[SimplySimon]

Thanks.
Third time away I took a video, opening all doors as I wandered round the house looking in rooms and cupboards. I was able to show my wife the video while we were away and it worked a treat.

Certainly something for the future

 

[YorkshireLass]

Hi,

This is my first post here as, on Thursday, my wife (59 years old) and I visited the Exeter One Stop Shop for an assessment and scan. She got a ACE III score of 54 and were told that she has Moderate Alzheimer's Disease. The brain scan didn't show any deterioration which, I can only assume is good. The first symptoms started really showing themselves just 6 months ago.

We are three and a half years in to a planned 5+ year caravan trip around Europe, visiting as many countries as possible, blogging as we go. We decided to return from Greece after Christmas as we couldn't control what we thought was hypothyroidism, and Julia was starting to worry about it. We now have to decide, after trying out a few shorter trips, whether we continue our trip, or if we put down routes and wait for whatever is thrown at us.

I don't for one minute, expect that we are the only couple to be dropped in to this whirlwind of fear and frightening information, but the panic of not knowing what is going on or what is going to happen next is already taking its toll. Luckily we are still, after 33 years of married life, deeply in love. I will stick by her to the end and take my marriage vows very seriously.

Julia is at the stage of complete denial and forgets most things that are said to her within a few seconds. She knows who I am but doesn't know my middle names, birthday or anniversary dates, none of which is important anyway. I'll have a look through the forums here and see what advice I can find.

Thank you for your time in reading this, especially if you are in the same or similar boat to us.

Simon

Hi Simon and welcome to the forum. You'll find lots of support here both emotional and factual. I can't offer experience as I care for my 92 year old mum who is a long way on the journey. However I can recommend a book that has recently been published by Wendy Mitchell. An amazing woman who has early onset and refuses to be labelled as "suffering from dementia". She is living life with dementia and sees it as a challenge that throws up challenges that she successfully manages to out manoeuvre , She is heavily involved in research groups after she had to leave her job in the NHS. She also writes a blog on Wordpress called "Which me am I today?" Here are the links
Wendy's inspiring book (which is written from her perspective)..... https://www.waterstones.com/book/somebody-i-used-to-know/wendy-mitchell/9781408893364
Wendy's blog (detailing her daily adventures including outcomes of research groups and meetings)......https://whichmeamitoday.wordpress.com/

Best wishes
Julie

 

[Hazara8]

Hi,

This is my first post here as, on Thursday, my wife (59 years old) and I visited the Exeter One Stop Shop for an assessment and scan. She got a ACE III score of 54 and were told that she has Moderate Alzheimer's Disease. The brain scan didn't show any deterioration which, I can only assume is good. The first symptoms started really showing themselves just 6 months ago.

We are three and a half years in to a planned 5+ year caravan trip around Europe, visiting as many countries as possible, blogging as we go. We decided to return from Greece after Christmas as we couldn't control what we thought was hypothyroidism, and Julia was starting to worry about it. We now have to decide, after trying out a few shorter trips, whether we continue our trip, or if we put down routes and wait for whatever is thrown at us.

I don't for one minute, expect that we are the only couple to be dropped in to this whirlwind of fear and frightening information, but the panic of not knowing what is going on or what is going to happen next is already taking its toll. Luckily we are still, after 33 years of married life, deeply in love. I will stick by her to the end and take my marriage vows very seriously.

Julia is at the stage of complete denial and forgets most things that are said to her within a few seconds. She knows who I am but doesn't know my middle names, birthday or anniversary dates, none of which is important anyway. I'll have a look through the forums here and see what advice I can find.

Thank you for your time in reading this, especially if you are in the same or similar boat to us.

Simon

,
So begins a rather different kind of 'journey' Simon. But have heart. There are folk on these forums who, thankfully, can contribute 'factual' accounts and practicable help beyond the purely clinical. Those 33 years will without question, arm you with reserves not found elsewhere. You join a whole host of people embarking on this extraordinary journey and many who have taken it and thus, can offer so very much encouragement and sound guidance. With warm wishes.

 

[TedW]

Hi,

This is my first post here as, on Thursday, my wife (59 years old) and I visited the Exeter One Stop Shop for an assessment and scan. She got a ACE III score of 54 and were told that she has Moderate Alzheimer's Disease. The brain scan didn't show any deterioration which, I can only assume is good. The first symptoms started really showing themselves just 6 months ago.

We are three and a half years in to a planned 5+ year caravan trip around Europe, visiting as many countries as possible, blogging as we go. We decided to return from Greece after Christmas as we couldn't control what we thought was hypothyroidism, and Julia was starting to worry about it. We now have to decide, after trying out a few shorter trips, whether we continue our trip, or if we put down routes and wait for whatever is thrown at us.

I don't for one minute, expect that we are the only couple to be dropped in to this whirlwind of fear and frightening information, but the panic of not knowing what is going on or what is going to happen next is already taking its toll. Luckily we are still, after 33 years of married life, deeply in love. I will stick by her to the end and take my marriage vows very seriously.

Julia is at the stage of complete denial and forgets most things that are said to her within a few seconds. She knows who I am but doesn't know my middle names, birthday or anniversary dates, none of which is important anyway. I'll have a look through the forums here and see what advice I can find.

Thank you for your time in reading this, especially if you are in the same or similar boat to us.

Simon

Hello Simon.
My wife is into her 9th year since diagnosis with FTD. Her mobility and speech are now pretty well zero. We both loved travelling and after her diagnosis we were determined to do as much as we were able, often revisiting some of our favourite cities and regions in Italy. There were difficult and trying situations but I wouldn't have changed a thing. My memories of Ruth enjoying what she loved doing, visiting art galleries, churches and finding great places to eat made any hiccups we encountered more than worth the effort. My advice would be to do what you both love doing, there will be problems along the way but you will overcome them and have some wonderful memories.
I am like you. We will be married 50 years in a few months and I am deeply in love and devoted to my dear wife. I am her only carer (we live in Greece) and I am determined to provide her with all the love, care, and dignity that I possibly can.
You will find this site very useful and helpful in the coming years, I know I have.
Good luck for you and Julia and as many Greek people say to me, "Stay strong".

 

[Jolean]

Hello Simon, after reading your post I shuck my head, as I too went through this confusing issue what do I do?, where do we go?, what is going to happen ?- and then I stopped myself.
Yes my husband was diagnosed at 59 of Alzheimer's and it was a great shock, but do you know what , I thought he is still with me and we are going to enjoy this journey together. It has brought us closer together and we don't actually think any more that he has Alzheimer's. We arranged all the necessary paperwork and got that out of the way and then we just carried on living our lives.

We go on holiday and we enjoy trips together and not once have we thought should we be doing this...

Of course we should be doing this, as it is important that we enjoy everyday as it comes and we are not going to be pushed back for any reason.

Life is wonderful at the moment we do have our laughs when he forgets something, and he points to his head and says it is this old thing inside me needs winding up !!
Life does not end just because you have Alzheimer's or dementia - in fact make it the first day of what is going to be the best time of your lives. after all we are all going to die one day and some don't even know when that day is going to be, which I would say is more upsetting.

I love my life and I am going to enjoy the future we have together and take each day as it comes not worth worrying about something that we cant change is it.

enjoy your trip, and I am no doctor, but I am sure you will know yourself when to stop.

happy travelling. Joanna

 

[Ravens]

Sorry to hear your situation, I am an ex carer, and future sufferer already started on messing up my memory but not too bad yet.

All I can say is please watch Great Canal Journeys, Timothy West and Prunella Scales

This series didn't really appeal to me on subject matter but it is a great lesson in light touch of caring, and capability of Prunella in early stage Alzheimer’s

I think it should be recommended viewing for all taking on a caring role.