My first steps...

[Lifebuoy44]

Hello,
Last year, my Wife bravely consulted our doctor because she was concerned for her lapses of memory. She began a regime of medication and all seemed to be under control. Then, about four weeks ago, she displayed a severe change in personality and declined sharply in normal abilities. We are both devastated, although she continues to face it bravely and knows the inevitable changes from caring for her own mother in similar circumstances about twenty years ago.

Although I shared with her care to her Mum, I was to some extent insulated from the full agony by the slight distance afforded by the "in-law" status. But I have no such umbrella now and I want to be the husband she deserves; to ensure she KNOWS of my love, and feels secure even when I begin to fade from her memory.

Some days she is brilliant and yesterday was one such day, when we laughed and relaxed all day, but today was disappointing. I realize I need the benefit of the experience and guidance of others who have already travelled along this trail.

Where can I find GOOD advice and support, please? Who will teach me how to retain some "professionalism" when (sometime in the future) it starts to get tough, and my feet of clay begin to show? I've always been the DIY man who could cope with anything, but now I really feel out of my depth. Any help will be greatly appreciated, by both my Wife and me. Thank you, especially because if you are reading this, you already have problems of your own and speaking to me may open old wounds for you.

Best regards,

Lifebuoy44

 

[Tin]

Hello,
Last year, my Wife bravely consulted our doctor because she was concerned for her lapses of memory. She began a regime of medication and all seemed to be under control. Then, about four weeks ago, she displayed a severe change in personality and declined sharply in normal abilities. We are both devastated, although she continues to face it bravely and knows the inevitable changes from caring for her own mother in similar circumstances about twenty years ago.

Although I shared with her care to her Mum, I was to some extent insulated from the full agony by the slight distance afforded by the "in-law" status. But I have no such umbrella now and I want to be the husband she deserves; to ensure she KNOWS of my love, and feels secure even when I begin to fade from her memory.

Some days she is brilliant and yesterday was one such day, when we laughed and relaxed all day, but today was disappointing. I realize I need the benefit of the experience and guidance of others who have already travelled along this trail.

Where can I find GOOD advice and support, please? Who will teach me how to retain some "professionalism" when (sometime in the future) it starts to get tough, and my feet of clay begin to show? I've always been the DIY man who could cope with anything, but now I really feel out of my depth. Any help will be greatly appreciated, by both my Wife and me. Thank you, especially because if you are reading this, you already have problems of your own and speaking to me may open old wounds for you.

Best regards,

Lifebuoy44

just stay where you are, these people are amazing. the advice and support will help you I promise, its helped me.

 

[truth24]

Welcome to TP. My husband is much further down the line than your wife, but if you are looking for a place to share your worries, download your fears and seek advice you could not have come to a better place. Someone will always be here to help you along the way with words of wisdom, understanding and sympathy. Sometimes even humour! I hope you find it as much comfort as I do. With very best wishes.

Sent from my GT-N5110

 

[lin1]

Hello Lifeboy44
Welcome to TP, I hope you find it as helpful and supportive as I have.

I am sorry to hear about your wife's sudden decline, this can be for a variety of reasons
The type of Dementia , sadly their are many.
Vascular Dementia ( referred to on here as VaD or VD) can go in steps, ie a period of stability then a sudden step down
Alzheimer's disease (AD) Is often a slow but steady decline

Any infection even a cold can cause a drastic worsening of symptoms , which can improve once the infection has cleared up. It may be a good idea arrange with the GP for a sample of your wife's urine to be tested for a urinary tract infection (UTI)

Sundowning, is a period of great agitation /confusion during the day or night, sometimes at regular times

One thing you should remember, when you are dealing with the erm professionals , even the highly skilled ones, is that you know your wife best

If you haven't already done so, it would be a good idea to join the Alzheimer's Society
Local branches often run, Cafes, these are for carers to meet up and discuss things ,their caree is often there but engaged in other things.
They usually run courses for carers.
They also know what is available in your area
Can check you are claiming for everything your wife and you may be entitled too
ie , a reduction or disregard of council tax Attendance Allowance. you may also be entitled to Carers allowance.
help with form filling .

Their is a thread on here about communication with the memory impaired.
It may or may not be right for your wife at the moment, nor is it an easy act to follow

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

A link to the Alzheimer's society national helpline , who can out you in contact with your local branch and a few other things
http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

Admiral Nurses
These are specialist Dementia nurses, , they are not hands on nurses, they are run by a charity and sadly are few and far between, but they do have a national helpline

http://www.dementiauk.org/information-support/admiral-nursing-direct/

I hope you find these helpful

Feel free to ask us questions, we will do our best to help

 

[Chuggalug]

Hello,
Last year, my Wife bravely consulted our doctor because she was concerned for her lapses of memory. She began a regime of medication and all seemed to be under control. Then, about four weeks ago, she displayed a severe change in personality and declined sharply in normal abilities. We are both devastated, although she continues to face it bravely and knows the inevitable changes from caring for her own mother in similar circumstances about twenty years ago.

Although I shared with her care to her Mum, I was to some extent insulated from the full agony by the slight distance afforded by the "in-law" status. But I have no such umbrella now and I want to be the husband she deserves; to ensure she KNOWS of my love, and feels secure even when I begin to fade from her memory.

Some days she is brilliant and yesterday was one such day, when we laughed and relaxed all day, but today was disappointing. I realize I need the benefit of the experience and guidance of others who have already travelled along this trail.

Where can I find GOOD advice and support, please? Who will teach me how to retain some "professionalism" when (sometime in the future) it starts to get tough, and my feet of clay begin to show? I've always been the DIY man who could cope with anything, but now I really feel out of my depth. Any help will be greatly appreciated, by both my Wife and me. Thank you, especially because if you are reading this, you already have problems of your own and speaking to me may open old wounds for you.

Best regards,

Lifebuoy44

Lifebuoy44, welcome to Talking Point

I was just about to slope off for a kip when I saw your message. Is there anything in particular you're concerned about, or is it just general knowledge of your situation you're looking for? It must be so hard for your wife since she's aware of her condition. Has she had a proper diagnosis yet? You could both enquire perhaps about her getting scanned if not. The GP should be able to sort that out for you.

Naturally, you'll both want to decide about banking, and who cares for all the financial stuff. Bill paying and all that caper. Driving, too, needs to be taken into account if your wife drives. I believe, the law is that she should get an assessment of her driving skills if that's at all relevant.

It's so hard to sit here trying to talk with someone I'm not familiar with, and I certainly don't have all the answers. You could both approach social services and ask for an assessment for both your needs.

So many here have gone through with the many and varied issues that go with dementia. There are loads of good books that helped me in the early days. People on Talking Point are full of knowledge so if there's anything you need to know in particular, please do put the word out. There will always be someone with an answer. Alzheimer's Society also do loads of fact sheets:

http://www.alzheimers.org.uk/factsheets

There's lots of info there. Hopefully, you'll find something that's useful. I'm so sorry to know you are having to deal with this. Sending you my best wishes.

 

[jaymor]

Hi and welcome from me too.

We have all experienced your fears when dealing with dementia. None of us has got it right every day, none of us are saints or perfect. We do our very best and still things fall apart. What we do very well on this forum is help each other. There is so much kindness on here, everyone ready to answer questions, guide you in the right direction to get help, empathise with you on a bad day and listen to you when you just want to let off steam after a bad experience. We all have lost it at some time and no one will judge you when you are not coping.

What you must remember is that in all this you have to count too. A carer that is burnt out is another person needing care and that means the sufferer will have lost the carer they rely on.

Please join us and make use of the wealth of information on here, sometimes solutions can be found in minutes, you may wait months for a professional to come up with the same answer

Look forward to seeing you posting on here,

Take care,

Jay

 

[Lifebuoy44]

Lifebuoy's response

Thank you, Tin.

I have every faith in our care systems; I desperately need to know the questions to ask them, to get my Wife the help she deserves. What shoudl I be asking for?

sincerely,

Lifebuoy

 

[WIFE]

You will cope Lifebuoy44 because you are not hiding your head in the sand but facing this sadness with your wife, head on.

I hope, with help from this excellent Forum you will get the help you need and deserve - my only personal words of advice are - try always to keep your sense of humour - difficult but as the road becomes steeper - essential at times.

 

[Trisha4]

Hello,
Last year, my Wife bravely consulted our doctor because she was concerned for her lapses of memory. She began a regime of medication and all seemed to be under control. Then, about four weeks ago, she displayed a severe change in personality and declined sharply in normal abilities. We are both devastated, although she continues to face it bravely and knows the inevitable changes from caring for her own mother in similar circumstances about twenty years ago.

Although I shared with her care to her Mum, I was to some extent insulated from the full agony by the slight distance afforded by the "in-law" status. But I have no such umbrella now and I want to be the husband she deserves; to ensure she KNOWS of my love, and feels secure even when I begin to fade from her memory.

Some days she is brilliant and yesterday was one such day, when we laughed and relaxed all day, but today was disappointing. I realize I need the benefit of the experience and guidance of others who have already travelled along this trail.

Where can I find GOOD advice and support, please? Who will teach me how to retain some "professionalism" when (sometime in the future) it starts to get tough, and my feet of clay begin to show? I've always been the DIY man who could cope with anything, but now I really feel out of my depth. Any help will be greatly appreciated, by both my Wife and me. Thank you, especially because if you are reading this, you already have problems of your own and speaking to me may open old wounds for you.

Best regards,

Lifebuoy44

Hi Lifebuoy44,
Speaking from personal experience, I found a CrISP course run by the Alzheimer's soviets very helpful. It had 4 sessions. Folk on this website can give personal helpful advice as everything you experience will have been experienced by someone before. There are also memory cafés in most areas where again you will find both professional and personal advice. I send my very best wishes to you both.

 

[Tin]

Hi Lifebuoy44,
Speaking from personal experience, I found a CrISP course run by the Alzheimer's soviets very helpful. It had 4 sessions. Folk on this website can give personal helpful advice as everything you experience will have been experienced by someone before. There are also memory cafés in most areas where again you will find both professional and personal advice. I send my very best wishes to you both.

I love the memory café concept, mum doesn't feel over whelmed and it feels to me like i'm simply meeting a few friends, unfortunately I've only found one in my area and only meet once a month. we have also recently found a village church that recently started a free lunch, live music[piano] and people., but this too is only once a month, I must find more.

 

[Trisha4]

I love the memory café concept, mum doesn't feel over whelmed and it feels to me like i'm simply meeting a few friends, unfortunately I've only found one in my area and only meet once a month. we have also recently found a village church that recently started a free lunch, live music[piano] and people., but this too is only once a month, I must find more.

I know there are a few in our area and some folk attend quite a lot of them so they having something once or twice a week. But I guess every area is different

 

[Jinx]

Thank you, Tin.

I have every faith in our care systems; I desperately need to know the questions to ask them, to get my Wife the help she deserves. What shoudl I be asking for?

sincerely,

Lifebuoy

I found Age Concern really helpful with form filling for attendance allowance, council tax rebate etc. they're very helpful with practical advice on the steps to take and, who to contact. If you're already in touch with Social Services ask for a carers assessment. Can you leave your wife on her own for any length of time or has she reached the stage of needing 24/7 care/supervision?
I have found TP invaluable in the relatively short time I've needed it, someone always has advice.


Sent from my iPad using Talking Point

 

[LadyA]

Lifebuoy, it's a huge benefit that your wife is open to acknowledging her illness - so many of us have had to deal with a spouse who went through the early and moderate and even to the late stages of the illness while all the while furiously and doggedly insisting that there was nothing wrong!

While your wife is still in the relatively early stages, it really is vital that you talk to her about Power of Attorney and Enduring Power of Attorney - so that you can make decisions for her when she no longer has the capacity to, and so that you can make decisions that would need a joint signature when she no longer has the ability to sign. It's not easy to look ahead to this time, but it is important to get Power of Attorney, if you can. Believe me, it can cause all sorts of hassle later on, with very simple things, if you don't have it!

 

[Trisha4]

I would confirm the benefits of getting lasting power of attorney ASAP. We did it as soon as my husband realised he had a problem. Having spoken to carers who left it until later it seems to be a much more difficult situation to sort when the person living with dementia does not have the capacity legally to give PoA.