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Early stage Alzheimer's

Benjamin

Registered User
Jun 7, 2013
12
0
Leeds
My husband has just been diagnosed with early stage Alzheimers, given a prescription for Aricet(?) for the next 56 days. No further appointments made at the memory clinic. What happens next? Do we get support from anyone and if so, what kind of support. What can we expect?
 

janma221

Registered User
Apr 23, 2013
284
0
Powys
I have found the Alzheimer's Society near my mother have been absolutely fantastic. As I live a distance from her, they have arranged appointments and taken her there. Always there for advice but give practical help too. Don't know where you live but if you can google them for your area they should be able to point you to all areas where you can get assistance.
Hope this helps.
Jan xx
 

Benjamin

Registered User
Jun 7, 2013
12
0
Leeds
Thanks Jan, I'll google them and give them a call on Monday. Trying to get used to the idea and feeling a little lost.
 

janma221

Registered User
Apr 23, 2013
284
0
Powys
I can understand how you feel, my Mum is more mid stage now but it is hard to watch the decline of the person you know. I know the support I have received on here has helped me to understand a lot so keep posting.
Jan x
 

Badietta

Registered User
Feb 23, 2013
88
0
Hi there

So sorry to hear about your news and remember what it was like for me when my husband was also diagnosed with early AD at the end of last year. It's a bombshell that's really difficult to take in, isn't it? However, really good news to hear that he has been prescribed Aricept which should help a lot. Mine is on Ebixa because he also has heart problems which meant that he couldn't take Aricept and, if the same happens for you as has happened for us, you'll get your wonderful, loving man back again. OK, so he may have a few blanks, but his personality will be just as it was before. I was really frightened before the diagnosis, but now feel very positive again. Maybe it won't last, but I intend to enjoy every wonderful minute of the life that we have together while it does. Keep your chin up. As I've found out, there is life after having been told the worst possible thing imaginable, in fact it's really rather lovely at the moment for us. We are doing better than OK and hope, as the Aricept kicks in, it will be the same for you.

Thinking of you

Badietta
 

faith1961

Registered User
Jun 6, 2013
3
0
Essex
My local Alzheimer's Society have been wonderful. They helped me with forms and gave me details of groups that my Dad could attend. There is always someone to welcome us and give advice when we attend the memory clinic. My Mum also had Alzheimers and I helped dad care for her until she passed away aged 76 three and half years ago, Dad who is 81 was diagnosed two and half years ago.
 

Benjamin

Registered User
Jun 7, 2013
12
0
Leeds
Thank you all for your kind thoughts and words. I will take all your advice and contact the Alzheimer's Society tomorrow. We are already feeling very positive and have been out and about enjoying this lovely weather. Will keep posting.
 

Benjamin

Registered User
Jun 7, 2013
12
0
Leeds
Alzheimer's Society

Well, we finally got an appointment with our local Alzheimer's Society support worker. She was very informative, but at the same time, very negative. My husband should be appointed a memory nurse 'at some stage'; I am reliably informed from my GP that can take a year, or more. There is not much point in completing a form for Attendance Allowance, we won't receive it. My GP has not, as yet, received a letter from the memory clinic confirming the diagnosis made on the 5th June so is unable to supply us with a repeat prescription for his Arricept, we will have to go back to the clinic and get them to provide one. If this is the level of support in the early stages, what on earth can we expect when things start to get more difficult?
 

Jilly1

Registered User
Jul 22, 2013
57
0
Nottinghamshire
I am in a similar position to you. Hubby was diagnosed 4 weeks ago. We have had one months supply of the same drug at 5mg and a nurse came out with another script for 2 months of the 10mg. Someone was supposed to be calling us but we have heard nothing as yet. Good luck with everything, it is so daunting.
 

Chook

Registered User
Jun 14, 2013
238
0
Westcountry
I'm really surprised you haven't been given another appointment. Mum was put on Aricept and asked to come back in 3 months to check how she was coping with it before upping it to a higher dose.

It really does seem to depend on where you live. I hope you manage to find the support you need, I don't know why there seems to be so little support when someone is diagnosed with this evil disease. "Oh you have dementia, good luck, we'll see you around one day" just isn't good enough. Could you call the place he was diagnosed?

I hope someone on here will give you some good advice.

Chook
x
 

Tony34

Registered User
Aug 17, 2013
0
0
I'm on the Treshold and am looking for Advice, etc

My wife was diagnosed with MCI nearly two years ago. After a year she was re-assessed with 'early stage dementia'. At the moment her problem is 'memory loss' (both short term and long term) and the consequences of blaming me for things that she forgot we agreed to do, places to go, etc. I go through our diaries to ensure things are in both and I always update the kitchen calendar. I use a blackboard in the kitchen to show what we are doing in the immediate future - it helps somewhat. What can I do as 'aide memoirs' to help overcome the problem of memory loss?
 
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Austinsmum

Registered User
Oct 7, 2012
304
0
Melton Mowbray
My wife was diagnosed with MCI nearly two years ago. After a year she was re-assessed with 'early stage dementia'. At the moment her problem is 'memory loss' (both short term and long term) and the consequences of blaming me for things that she forgot we agreed to do, places to go, etc. I go through our diaries to ensure things are in both and I always update the kitchen calendar. I use a blackboard in the kitchen to show what we are doing in the immediate future - it helps somewhat. What can I do as 'aide memoirs' to help overcome the problem of memory loss?
Hi Tony, I see this is your first post. If you start a brand new thread, your question will be more visible and consequently you should get much more feed back. At the moment your question is buried inside someone else’s thread. Good luck. :)
 

Crashbabe

Registered User
Aug 15, 2013
5
0
Billingham
Hi Tony, I see this is your first post. If you start a brand new thread, your question will be more visible and consequently you should get much more feed back. At the moment your question is buried inside someone else’s thread. Good luck. :)

Hi Tony, I know what you mean. We have recently installed a whiteboard in the kitchen to see if that will help. We have a calendar which my hubby checks to see what is happening in the week. However, that doesn't stop him asking me continually what I am doing this week etc! I don't think there is an easy answer. We have notebooks too, for my hubby to write things he needs to remember - you've guessed haven't you - remembering to write in them is the problem! I spend my time reminding him! If you find a solution, please share!
 

Tony34

Registered User
Aug 17, 2013
0
0
Thanks

Hi Tony, I know what you mean. We have recently installed a whiteboard in the kitchen to see if that will help. We have a calendar which my hubby checks to see what is happening in the week. However, that doesn't stop him asking me continually what I am doing this week etc! I don't think there is an easy answer. We have notebooks too, for my hubby to write things he needs to remember - you've guessed haven't you - remembering to write in them is the problem! I spend my time reminding him! If you find a solution, please share!

Thanks to Crashbabe and Austin's Mum re how to get the best out of the site - although I worked in IT for 40+ years I do have problems in learning how to use these sort of systems.
 

morgaine

Registered User
Oct 10, 2013
3
0
What a positive reply

Just got diagnosis for mum and first time on here so scrolling through. Thank you for sharing such a positive outlook and how to make the most of what we have. Mum also heart issue so can only have exiba, hoping she has the same response as your dad. Thanks for sharing, much love, joy and peace to you all, xxx



Hi there

So sorry to hear about your news and remember what it was like for me when my husband was also diagnosed with early AD at the end of last year. It's a bombshell that's really difficult to take in, isn't it? However, really good news to hear that he has been prescribed Aricept which should help a lot. Mine is on Ebixa because he also has heart problems which meant that he couldn't take Aricept and, if the same happens for you as has happened for us, you'll get your wonderful, loving man back again. OK, so he may have a few blanks, but his personality will be just as it was before. I was really frightened before the diagnosis, but now feel very positive again. Maybe it won't last, but I intend to enjoy every wonderful minute of the life that we have together while it does. Keep your chin up. As I've found out, there is life after having been told the worst possible thing imaginable, in fact it's really rather lovely at the moment for us. We are doing better than OK and hope, as the Aricept kicks in, it will be the same for you.

Thinking of you

Badietta
 

Tony34

Registered User
Aug 17, 2013
0
0
My husband has just been diagnosed with early stage Alzheimers, given a prescription for Aricet(?) for the next 56 days. No further appointments made at the memory clinic. What happens next? Do we get support from anyone and if so, what kind of support. What can we expect?

In the case of my wife after the initial course of Aricept we had a review with my wife's GP at which point the GP took over from the Memory Clinic's psychiatrist. The GP now does a six monthly review. So far my wife is stable so don't know what will happen if and when the situation worsens. Re support this depends on the severity of the patients problem and possibly where you live - I have been told that for early stage problems there is little that the NHS in Buck, Berks and Oxon can offer. The Alz Soc in our area have a Carers Group (very good), a Dementia Café (not yet tried) and Singing for the Brain (not yet tried). You need to get in contact with them - they are very helpful.
 

Silver Lining

Registered User
Nov 20, 2013
224
0
Its Up to Me

My Husband has been prescribed 5mg Aricept for one month and then 10mg Aricept after that but with no further instructions or follow up instructions, Aricept 10mg now on repeat prescription.

My Husband also has a lifelong illness called "Addisons Disease" which means he is replacement Cortisone Dependant and has to be monitored closely in case of an Addisonian Crisis.

He has had Prostate Cancer this year together with 34 treatments of Radiotherapy.

No mention about this from Medical Profession and it, has always been left for me to monitor. I often have to remind him to take the tablets he has been taking for 40years on which his life is dependant.

Good job I care because no one else does!!
 

Tony34

Registered User
Aug 17, 2013
0
0
Things Are Gettng Worse

Since my last note my wife's condition has worsened markedly - her memory loss is now almost instantaneous. I have asked for help from my wife's doctor in tapping into NHS support services. I am seeking advice on how to manage my wife's responses and actions to situations - the chalk board, the calendar, the joint diary appear now to be of little use. I am looking for a discussion with a professional (from the Memory Clinic?) on how to manage situations. Her GP says that her 'doctorly remit' is limited to prescribing medicines and ensuring my wife is healthy. When we last saw her GP my wife said to the doctor she ought to ask me how she was - she then contradicted most things I said. Where do I find help?
 

FifiMo

Registered User
Feb 10, 2010
4,705
0
Wiltshire
Hiya Tony,

I'm sorry that you are not getting the support that you and your wife need. If you haven't already done so, you could consider contacting the Alzheimer's Society in your area to see what support they can supply by way of information or perhaps putting you in contact with other carers. Other than that I think you will find that this is where Talking Point comes into it's own.

As to your your wife's marked deterioration, on of the first things to rule out is whether there is any underlying reason for this. Does she have a UTI perhaps, or a cold or a chest infection? All of these can cause fast deterioration in someone with dementia, but it is usual for some improvement once the infection is treated.

As the memory deteriorates you find that you have to find different ways of communicating. If she forgets something immediately then there is no point in giving advanced information because you will end up sounding like a broken record and your wife may get angry or frustrated, especially if it is interpreted as you trying to control her life. You might find the following thread useful... http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

If you want to give us some more examples of scenarios where she is struggling most then I am sure others will share their strategies for coping with you. For us we were lucky that my mother continued to remember to use the phone. We would call her throughout the day to give her all manner of reminders. If she had an appointment for example, we didn't tell her in advance (she would just forget) we would phone and tell her we would be there in 15 minutes to pick her up so could she put her coat and shoes on. Some days she would and others she would forget even that, so we got her ready when we arrived. For things like medication we would wait on the phone until she told us she had taken them. After a while though, we had to get carers in to prompt her.

I hope you find the cusp port that you require.

Fiona
 

Tony34

Registered User
Aug 17, 2013
0
0
Compassionate Communications

Fiona, thank you so much for your helpful comments. You've hit a number of my nails on the head with me having not to explain them They are of course not unique to me, you've all had to deal with them. The item on Compassionate Communications is enormously helpful. At the moment my wife is accusing me of wanting to control her life inc. not letting her cook. We've been in our new house for six years and she can't use any of the appliances safely and doesn't know where things are in the cupboards or pantry - she gets upset when I offer help.

I do go along to the local Alz Soc carers meeting.

Thank you for your help. I will practice all the good recommendations in the article but may be back if I get overly frustrated!

Cheers

Tony
 
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