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First post - advice please

Greenman

Registered User
Sep 29, 2016
14
East Midlands
Hi Everyone. This is my first post on TP, in fact it's my first post on any social media so it's a big step for me.

My Wife was diagnosed with AD two months ago, we are both in our early 50's. She is now on denepozil and we are starting to get some support from the local working age dementia team. There have been some difficult days (and nights) but I have been reading the posts on here and it has been a great help and comfort to know l'm not alone trying to cope, but it's also sad to know others are going through the same thing and in many cases a lot worse. I do have a couple of questions...........

1. Food. I still work full time and I am finding it difficult to get home and then cook a meal that my OH will eat. She has always been a bit fussy but I have run out of ideas, she turns her nose up at most things that she used to like, then she complains that I'm not looking after her properly and the police will find out and send me to prison. I take her to the supermarket so she can choose something and she often throws a tantrum and refuses to choose, then complains about what I have chosen when we get home. Has anyone got any suggestions for something that I could cook that she might eat? Does anyone have any experience of carers who can cook (she eats more at lunch than in an evening, but I don't get home until 6.30 to 7pm).

2. Power of Attorney. I've got an appointment for us both to see a solicitor, I've tried to explain to the OH the reason why we are going but she doesn't seem to understand, and she doesn't trust me at all regarding most things. What happens if she refuses to agree to me having POA? The only other family she has is her mother who isn't in a fit state to deal with this and my OH doesn't get along too well with her either.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,811
Yorkshire
hello Greenman
and a warm welcome to TP, where there's lots of support and information available any time - so I'm glad you found the site and have started your own thread

I have to admit that with dad, when I was still working, I resorted to ready meals as the midday carer could easily warm the meal in the microwave in minutes and actually there are some tasty and nutritious meals out there ( M&S were my favourites) - then I made sure that he had fruit and other fresh stuff when I as with him - and having made sure he had a good breakfast of porridge with blueberries and a banana and pineapple juice, that gave him a good start with a fair amount of fibre to keep him regular
I stopped asking him to choose anything as making a decision brought him too much anxiety; so if your wife complains either way, you may as well just choose what you want yourself and calmly put it in front of her as if there's no question of her not wanting it

Definitely worth having a go at getting the POAs done - personally I'd not talk about them any more to let her mind settle and to make sure you don't build up resistance - then just go along and have the solicitor take the lead - the solicitor will most likely know how to handle the situation, however will also refuse to continue if they really do consider that your wife is too anxious that day - again, just put on a front that all will work out, it's no big deal etc so that your wife picks up only good vibes from you - if she's very suspicious maybe say you'll get yours done too (actually not a bad idea, as we never know what's round the corner)

have you come across compassionate communication? it helped me get my mind around how to communicate with dad, though as with anything, it doesn't work all the time
http://forum.alzheimers.org.uk/showthread.php?30801-Compassionate-Communication-with-the-Memory-Impaired

keep posting with anything that's on your mind

beat wishes to you both
 

Beate

Registered User
May 21, 2014
11,906
London
Hi Greenman and welcome to TP.

1. I'm blessed with an OH who eats everything, but when I was still working full-time he got a lovely hot lunch at his day centre. (He still does actually) Something like this might be an idea for your wife? I'm a big fan of well-run day centres as they not only provide food but also company and lots of other activities. Some people eat better in company, there will be choices and she might not feel so hard done by seeing everyone else getting the same food choices. If you're not ready for a day centre yet, what about a lunch club? They usually provide a nourishing meal for just a few pounds. For your evening meal, why not try something sweet? Apparently most people with dementia never lose their sweet tooth. I wouldn't ask her to choose. She might have lost the ability to do so and hide this with tantrums.

2. If she refuses to give you POA or does not have the capacity to grant it anymore, your only other option will be deputyship. May I just say that you do not need to pay a solicitor hundreds of pounds to fill in forms you could fill in yourself or with the free help of a charity. If you choose an old friend as a certificate provider, that person might be able to make her understand about the POA, but if not, I doubt anyone else could be attorney either. Deputyship is expensive and onerous, so try to avoid it if you can.
 

doodle1

Registered User
May 11, 2012
246
Re meals could I maybe suggest Wiltshire farm foods ? They deliver too and small,portions .also the company Cook do really nice ready meals. But also if you are working what about leaving her a sandwich at lunchtime and then doing yourselves an easy ready meal in the evening? Don't offer her a choice - it's too stressful for her - just say I've left you a nice ..... Meal/ sandwich for lunch. Try and not engage.
Also search www.youtube.com for Teepa snow videos they are short but really help with understanding communication issues in dementia
By the way a warm welcome to this site
 

fizzie

Registered User
Jul 20, 2011
2,730
hi and welcome
Re PoA this is really useful - you can do it online which might be a whole lot less stressful and it is a fraction of the cost too You fill it in online and then print it out get the signatures and send it in - https://www.gov.uk/power-of-attorney/make-lasting-power

You could also do with appplying for non means tested Attendance allowance for her and you can get some excellent help for the tricky form from Age UK on 0800 169 2081

You should also be able to get a rebate on council tax - ask LA for a form for waiver for 'severe mental impairment' - it will go to your doctor for signature so you might want to have a word to say it is coming (and they are not allowed to charge for filling it in)

Could you have a carer who would just pop in at lunch time to do a microwave meal for her - she might find it easier (and you might) to have someone else chat and give her a meal
Also this is really useful for reducing stress - we kept it on the fridge and I asked everyone to read it and try to use it, it really reduced my ma's stress
http://www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf
 

Greenman

Registered User
Sep 29, 2016
14
East Midlands
Thanks Shredrech. She does have a good breakfast before I go to work, and she does eat lots of fruit. I've been avoiding ready meals as I think she will refuse them but I'm now getting desperate so may have to take the plunge.

I will have a look at the compassionate communication article.
 

canary

Registered User
Feb 25, 2014
11,690
South coast
Hello Greenman
Mum always eats better at lunchtime and eats her main meal then. I agree with the suggestions of ready meal lunch time or day centre/lunch club to cover this period. When mum used to say that she didnt want anything in the evening I would put a plate of finger food (sandwich cut up into squares, mini pork pie cut into quarters, halved cherry tomatoes, grapes, apple slices etc) next to her and just say to eat whatever she wanted. It always went!

If your mum wont agree to POA at the solicitors you can download the forms and then choose your time. If she says that she is worried about money you could ask if she would like you to sort it al out for her. If she says yes, produce the forms and get a friend to witness it before she changes her mind. I must say, though, that my mum never did change her mind as she was so suspicious that I was stealing from her. I eventually had to go for CoP deputyship.
 

Greenman

Registered User
Sep 29, 2016
14
East Midlands
Hi Beate. The WAD team are helping to sort out some day time activities, one of the places does provide lunch so that might help. I have noticed she likes sweet things so maybe I will have to adjust the recipes.

I decided to use a solicitor as it is one that we have used for other things before and my OH knows him and I hope she will trust him even if she doesn't trust me.
 

Greenman

Registered User
Sep 29, 2016
14
East Midlands
Also search for Teepa snow videos they are short but really help with understanding communication issues in dementia
By the way a warm welcome to this site
Thanks Doodle1. I'm beginning to realise that it's like having to learn a new foreign language, one wrong word can start world war 3. Although, I guess most married men probably think that even without the complication of AD :eek:
 
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Greenman

Registered User
Sep 29, 2016
14
East Midlands
Hi Canary. I'm going to do my own POA at the same time so hopefully she won't be too suspicious if we both do it. If that doesn't work then I'll try downloading the forms and choosing the right moment.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,717
Kent
Hello greenman

A mutual POA worked for us. I`m afraid I did feel slightly deceitful but it was a means to an end.

Our solicitor knew the medical history and spoke to my husband on his own, to make as sure as possible he understood what he was signing . My husband trusted me enough to accept my story.

It was as well we did it because my husband had closed a joint account of ours and opened a new account in his name only with the money. This was even though I had told the bank he had dementia and asked if any large amount were withdrawn if they would contact me.

They didn`t.
 

Meppershall

Registered User
Aug 16, 2016
180
Bedfordshire
Hi Everyone. This is my first post on TP, in fact it's my first post on any social media so it's a big step for me.

1. Food. I still work full time and I am finding it difficult to get home and then cook a meal that my OH will eat. She has always been a bit fussy but I have run out of ideas, she turns her nose up at most things that she used to like, then she complains that I'm not looking after her properly and the police will find out and send me to prison. I take her to the supermarket so she can choose something and she often throws a tantrum and refuses to choose, then complains about what I have chosen when we get home. Has anyone got any suggestions for something that I could cook that she might eat? Does anyone have any experience of carers who can cook (she eats more at lunch than in an evening, but I don't get home until 6.30 to 7pm).

.
Hi Greenman x

Taking a poorly person to the supermarket can be particularly stressful, especially as you say your OH can be difficult sometimes. If you are not keen on the microwave meal selections that are out there perhaps you could try on-line shopping ? Find a quiet time in the evening when your wife is calm, cup of tea and a biscuit and then do it together. Your wife wil be able to choose for herself and might feel involved, and it will be so much less hassle for you, no parking either ! :) The good thing is, if she does start to feel a bit stressed you can save your list and go back to it another time when it is more convenient. Your shopping wil be delivered to your door at a time of your choosing, and bought into the house if you want, and your wife might be glad to see a friendly delivery mans/womans face - someone else to have a quick natter to !

Maybe it's worth a try ?

I hope you find a solution that works for you xxx
 

Greenman

Registered User
Sep 29, 2016
14
East Midlands
And I should have added: apply for a PIP personal independence payment for your wife. Experience on here varies, but my OH fairly straightforwardly got one at the higher rate and that pays for a lot of the support he needs during the day.
I've started the PIP process today by phone so I'm hoping it will get sorted without too much hassle, and am trying to organise some daycare. Having thought I was coping quite well I now feel I'm running out of energy and as there's no other family close by to help I know I've got to organise something ASAP.
 

mark2160

Registered User
Aug 19, 2015
6
Nottinghamshire
Hello Greenman
As someone of a similar age and situation here are my observations and experiences which you might find helpful or not as the ‘curse’ effects people in different ways.
Get your finances in order. Although you’re working at the moment the rate of decline especially in younger people can be quite scary.
I gave up work around 15 months ago and already at a stage where I have to wash , dress and clean her up when she goes to the bathroom.
Knowing when to give up work is a judgement call only you can take.
With the various allowances my wife and I get just over £300 pw although not a fortune , is enough to live on.
Try not to dwell on the past, take each day as it comes. We’re entitled to feel sorry for ourselves , however there are people who are in even darker places than us.
Good luck Greenman with your journey don’t let it destroy you – life will go on.
 

Greenman

Registered User
Sep 29, 2016
14
East Midlands
hello Greenman
and a warm welcome to TP, where there's lots of support and information available any time - so I'm glad you found the site and have started your own thread

I have to admit that with dad, when I was still working, I resorted to ready meals as the midday carer could easily warm the meal in the microwave in minutes and actually there are some tasty and nutritious meals out there ( M&S were my favourites) - then I made sure that he had fruit and other fresh stuff when I as with him - and having made sure he had a good breakfast of porridge with blueberries and a banana and pineapple juice, that gave him a good start with a fair amount of fibre to keep him regular
I stopped asking him to choose anything as making a decision brought him too much anxiety; so if your wife complains either way, you may as well just choose what you want yourself and calmly put it in front of her as if there's no question of her not wanting it

Definitely worth having a go at getting the POAs done - personally I'd not talk about them any more to let her mind settle and to make sure you don't build up resistance - then just go along and have the solicitor take the lead - the solicitor will most likely know how to handle the situation, however will also refuse to continue if they really do consider that your wife is too anxious that day - again, just put on a front that all will work out, it's no big deal etc so that your wife picks up only good vibes from you - if she's very suspicious maybe say you'll get yours done too (actually not a bad idea, as we never know what's round the corner)

have you come across compassionate communication? it helped me get my mind around how to communicate with dad, though as with anything, it doesn't work all the time

keep posting with anything that's on your mind

beat wishes to you both
I have found the article on compassionate communication really helpful. I hope I have always tried to be patient and understanding, but now I realise at times I can make things worse when trying to make things better. Over the last few days I have followed these guidelines and it has helped, there have still been tantrums and outbursts but I have been less stressed which seems to have helped us both.

It's a pity the NHS don't give carers this kind of info as soon as the diagnosis is confirmed.