lots of help and advice needed

[ollyfran]

Hi everyone, I have joined this site because I think Mum has early Alzheimers. She is certainly very forgetful although she really won't admit it. All she says is that she can't remember a thing then when we get to the doctors (which has taken me 6 months for her to agree to let me go with her) she just says that she is "a bit forgetful but at her age (82) it is to be expected)

Dad is fantastic with her but by the end of the day he is getting a bit fraught. His patience is endless during the day and he is still very active so he copes very well but I need to try and make life a little easier for the 2 of them.

The doctor has referred Mum to the memory clinic at the local hospital and it now seems that whilst they were away on a 5 day break the appointment has been made. It didn't help that the secretary left a message on the answerphone to say that her appointment was for (date and time) at the Old Age Psychiatry clinic. I don't think they realise the effect this has on some people. I do think it would have been better to have said that the appointment was at the Memory Clinic which is situated in the Old Age Psychiatry Unit. Mum was pretty upset to say the least.

My sister stayed over at their house for a night whilst they were away and rang to say that the fridge was full of out of date stuff - dairy stuff with use by dates going back to 2006. I thought it best to let Dad know but Mum went ballistic when he tried to sort it out. She told him to leave the fridge alone. It was her fridge and she would sort it out... and what was I doing checking out her fridge while she wasn't there! Dad explained that it was my sister who had noticed when she stayed over but it was still not a pleasant experience.

Mum is continually trying to pay me for stuff she has already paid for and Dad is concerned because she tends to set up direct debits for any charity that pops its literature through the door. He now tries to get there first and destroy any "begging" letters before she spends all their pensions on charities.

I really need help in how to deal with this. Is it better to point out how many times she repeats herself / tries to do things? I thought about taking the money she offers until she has given it to me 6 or more times and then giving it back to her to enforce the fact that her memory is not as good as she thinks it is but is this just counter productive? I guess the next day she wouldn't remember anyway so is it just cruel and pointless? What do other members do to try to help their loved ones? Is there anything we can do to help? Is it worth pointing out that she has told me something 10 times over or not? I am slowly losing my Mum, and Dad is losing his wife. I feel like I want to shock Mum into realising what is happening but I know in my heart that no matter what I do this won't happen. I am scared of the future for all of us.

It helps to know that we are not alone but sometimes reading the posts is depressing especially realising that we are only at the start of the slope.

Sorry, folks, this was not meant to get maudling. Most of the time I laugh off what Mum says and does because taking it too seriously is depressing. It is my way of coping I guess.

Thanks for listening and any help / advice would be greatly appreciated.

 

[Norrms]

Hiya

Hello and welcome to talking point, i am so sorry you feel so scared but please belive me when i say its ok to be scared sometimes as it prepares you for what might be ahead. Please why dont you take her back to the Drs and insist on a thourough investigation and ask about the availoibilty of drugs that are now and will soon be availible. we are always here to help my friend, best wishes, Norrms and family xxxxxxxx

 

[Mameeskye]

Hi Ollyfran,

((((((hugs)))))))

I actually think that this stage of this illness is one of the most challenging phases. You know that you Mum has more than normal forgetfulness problems but when they become apparent, along with the bad temper, you see your loved one disappearing in front of your eyes....and it scares the wits out of you.

I guess the next day she wouldn't remember anyway so is it just cruel and pointless?

I think that you already know the answer to this one! But sometimes it helps you, as a person, to voice the obvious because when someone argues with you when they cannot remember correctly you have it in you to want to put it right. But really, it doesn't help. It is easier to walk away than try to persuade your Mum otherwise, as she genuinely will not remember it, and if you can minimise the confrontation, you help to reduce the stress. Maybe just take the cash and slip it back to your Dad.

Like your Mum, mine was referred to the local pyscho geriatrician at the psychiatric hospital, which went down like the proverbial lead balloon! However Mum went as she saw how concerned we all were (we were mad at the GP who refused to sign a form for a home visit by the consultant, which for some reason needed done...but then she believed there was nothing wrong with Mum at the time...she scored 23/30 on the MMSE at that visit!)

Once you have the diagnosis it is a little easier to deal with, but is still incredibly frustrating...as you deal with the loss of your Mum, and gaining the new skills to deal with the personality changes that accompany dementia.

With things like the fridge, I suggest that you do a deal with your Dad where he either takes Mum out and you clean it out on a weekly basis, or vice versa. My brother used to occupy my Mum and my SIL would check the fridge and chuck the obvious culprits!
At least with your Dad there he can keep an eye out for food hygiene, eg things left out too long, or not cooked properly etc. You need a bit of manipulation to deal with it, but if you can manage it discretely and quietly you can generally tidy it away, as the memory forgets what was there. Try not to make a big thing out of it.

You will need patience and courage to deal with it...and you will find lots of support here.

Thoughts are with you

Love

Mameeskye

 

[sistermillicent]

Hi,
It seems to me that there are people who do accept that they have AD and there are people that don't, probably part of the illness itself, but I don't know. My mum is one who did not accept it and to try to tell her was cruel and pointless as you suggest. The only thing that has made a difference is going along with what she says, it just makes it easier for all of us.

As well as your mum going through the stages of AD you will go through different stages of caring, and it is perhaps your actions and efforts and support for yourself during those different stages that will have the most impact on life.
By this I mean that I don't think there is much other than medical help and psychiatric drugs etc that can help with AD, the illness. But the effects of the illness are manageable to some extent, or at least life can be made as good as possible by changing the attitudes of the carer, the people who have the ability to change. This is not a one off process, it will need to happen again and again as things deteriorate with the AD.

As well as all this you are of course coping with the grief, which isn't proper grief because your mum is still alive. You will find a way to cope with the fridge etc, don't worry.

Don't be put off by what you read here, there is a lot of very useful support, and just because something is happening to one person who posts it doesnt mean it is happening to others.

One final piece of advice is to keep a very careful record of who you speak to, dates, what is said or agreed, we didn't and have ended up in a lot of confusion.


with love

 

[lin1]

Hello.
You do find ways of dealing with things such as the fridge, it is often a matter of being inventive.

Reading posts here is a good source of info, but do try to remember, we are all at different stages, some are much further along this path. and the illness affects our loved ones differently. what im trying to say is though there may be some simularities there are huge differences too.

all you can do is take it one day at a time.
done berate youselves when you get it wrong, no one is perfect!

 

[piedwarbler]

I agree with other posters that the time before diagnosis is particularly stressful and I think the A scoiety did some research that confirmed it. Once you know your enemy you can start to do things to help the situation and you can also get the right support.

One thing a social worker told me early on was to keep a diary of Mum's symptoms and actions. Write it up and present it to the doctor as a brief list of dates and items. I have found letters describing my worries get ignored but doctors will look at lists of facts if they are brief eg Mon 12 - paid twice for papers Tue 13 - told the same story 4 times in 10 mins Wed 14 - asked the date 13 times in 2 hours (my mum did all these things and more!)

Coventry have a START team of social workers for older people, according to the area of the city you live in you will be North team or South team, try and get in touch with them if you can to start some support. Also keep working on your GP.

Finally take one day at a time and you will find some level ground eventually.

Take care of yourself, carers need hugs too! x Good luck x

 

[JackMac]

hello

I really understand where you are coming from as my mum is at a similar stage. Infact, I could almost have written your post! I re-read it incase my sister had come on here and posted but then realised your mum is 82. Mine is 72.

My parents just went on holiday and I made them some dinner for the day they returned. I went to put it in the fridge and it was a bit smelly to say the least so I went through the whole thing. MOST of it went in the bin. yoghurts out of date in July. A solid bottle of milk! Black mouldy bacon. Being a vegetarian, it didn't help when I pulled out some mouldy salmon.........I nearly threw up.
I had to then sterilise the fridge as it was in such a state. I have to say I almost burst into tears because it made me realise how bad she was. I even found yoghurt in the cupboard from March this year.

I have learned to let a lot of things go when I cant get through to mum. The thing is, you can try and do the right thing but it really depends on the person whether its the right thing or not. What works for one, might not work for another. I am trying not to beat myself up when I get it wrong.
I had to tell my mum about the fridge as she probably would have had a go at dad otherwise for throwing things out. She was fine about it luckily. Our kids go round there sometimes so its vital they are not fed out of date food.

Sometimes we know we cannot be honest. we're thinking about getting a cleaner in when she's out one day now i have realised how bad things are getting. She would never agree to that but probably won't notice if we do.
could you sort the fridge out when she's not there?

Hopefully, your mum might be able to try aricept or something similar and you might even see some improvement. Thats what I am hoping for with my mum anyway.

Don't feel bad about laughing sometimes. We often laugh at things that happen........or we'd cry. There's a fine line between the two I think. But at other times I can't help but cry.

As piedwarbler has said, keep a diary. We have just started doing that too as the consultant does not see the way things are in a short appointment.

My mum would give money to anyone too and dad has to shred the begging letters as they come in. Its a big worry. We have just sorted out power of attorney but as she is only in the early stages, we cannot control how she spends her money right now.

I do have an idea how you feel as I feel pretty much the same.......like I'm slowly losing the mum I know. The only thing that helps is enjoying every moment of the good days.......and there are still plenty of them. And trying not to focus too much on what's ahead. Easier said than done of course.

 

[ollyfran]

Thank you so much for all of your support, advice and general kindness. There are a lot of good ideas which I will now take up. I feel the diary will help both the doctor and me. I will be able to check how quickly (or not) things are progressing.

I shall be contacting the Start organisation to see what they can offer locally.

Meanwhile I need to accept what I have now and work on what will be in the future. Hopefully we can get Mum started on something to slow the progression and hang on to her for a bit longer.

Thank you all again and as Arnie said "I'll be back!"

Bless you all x