Call from the memory nurse today, not good news

[lensgirl]

Hi

my nan had a memory nurse out last week, and they have called my sister today with the expected news. nan scored 52/100, which having read some information is very low. We now wait for the appointment for the CT scan. Nan doesn't know yet, and I am going to have to tell her tonight which I am obviously not looking forward to. She is going to be devastated, but will struggle with a few things I think. Firstly her driving license - this is her total independence and not being able to drive will cause her serious additional mental issues (my sister is going to notify the DVLA she is being investigated tomorrow and nan will need to notify her insurance). Secondly - her older brother has Alzheimer's so can see what she has coming.

The positive things I'm going to highlight to her are that she has a mobility scooter. She needs to start using it to go to the shops, there is no reason for her to be "stuck in". I am currently staying with her while my house purchase is going through, so she is not on her own and I can take her places. If she wants to visit her brother, I can take her on the weekends. We are moving to be closer to my sister and mum (her daughter in law), and nan is also going to be selling her place and moving, so she will have more people who can do things with her. I am now concerned though that somewhere on her own is not a good idea, and perhaps somewhere with assisted living but where she can be independent still is going to be more suitable.

Nothing is for certain yet, so she will need to wait for her official diagnosis which I guess will give her a bit of hope. I had printed out the Power of Attorney forms last week, but I think I need to time the approach for that because I don't want her thinking we are taking every bit of independence from her.

Is there anything I need to be prepared for? I know there will probably be some sort of depression and I am even expecting a reaction of something like "there is no point in me eating" etc

 

[imthedaughter]

Hello and welcome! I too was dreading the day my dad had to give up driving, but in the end he forgot where he parked his car (not good I know but we didn't realise what was going on with him at the time!) and the police got involved, he probably parked it somewhere random.

You have a much more controlled approach which could be a lot more difficult. There was a thread about driving licences on here, have a search and you'll see the different approaches people have taken. I think it would be best if you discourage her from driving for now and get the LPAs signed. If you get a diagnosis and capacity is brought into question you can't get them signed so do not delay.

I know you think it's a lot to pile on but if the memory problems are that bad, I'm afraid to say it will be forgotten quickly. Dad had a man come to the care home and hand deliver a court summons (don't ask, but who does that?!) and he forgot all about this traumatic event within an hour! He has a similar score to your nan on the testing but we are no closer to a diagnosis, I'm actually a little envious! I am working on getting the diagnosis for Dad now and I am desperate for a CT scan.

When Dad did his LPA he did actually manage to retain the importance of it, as in, we were doing it to help him, but not the actual details. Once you have the LPA you can do everything in the background without them having to worry or understand new things like how much money they have and so on. Make sure you get both LPAs for health and welfare as well as finance and property, otherwise that's storing up trouble.

With regards to being on her own, unfortunately Dad didn't do well in assisted/independent living and has been in residential for almost nine months. I run his affairs remotely. Unfortunately degeneration is inevitable so try to plan for the future - can she cook/wash/clean? Can you get carers in to help? Is she self-funding? Do you need a social services assessment? If she's moving anyway this is a golden opportunity to take stock and settle her somewhere.

I thought Dad would be upset at the thought of memory issues but he thinks there's nothing wrong with him, apart from old age, and the rest of the 'inmates' as he calls them, are all crackers. Never mind that he's the only one getting up and demanding to go out at 2am and the only one who can't keep track of his appointments - it's definitely the others. He lives the life of a pampered prince in the home. Washed, clothed, cleaned for, fed meals, snacks, tea and toast on demand, 24/7! Medical staff come to him! No finances, bills, or post to worry about. It's amazing really. I'd much prefer he was independent but this is his greatest chance at happiness now, and we know he's safe and warm, even if he is wearing his trousers inside out today!

 

[lensgirl]

thank you for your reply. Nan is quite self sufficient and is able to cook and clean, although she will forget to eat so us being there is helping her to eat because she eats with us every evening. I don't think nan will forget this, as she fixates on things all the time and continually goes on about things. At the weekend she said that a known religious group had text her saying that they were going to take money out of her bank account for her taking one of their leaflets. There was no text, so she kept saying that they must have gone onto her phone and deleted it. I did show her one that was from EE saying they were taking her direct debit, but she was adamant that was not it. She is disabled as well, and does need a walking stick

 

[Pete1]

Is there anything I need to be prepared for? I know there will probably be some sort of depression and I am even expecting a reaction of something like "there is no point in me eating" etc

Hi @lensgirl, welcome to the forum. I can understand your trepidation, in all likelihood your Nan will have forgotten very quickly if you decide to tell her. My Mum received a letter outlining the diagnosis after the scan, read it put it away and never thought there was anything wrong. At first I used to show her the letter the letter with diagnosis when she wouldn't believe she had dementia (I knew no better at that point!), but actually that served no purpose and created anxiety, so whenever she asked 'why am I like this' (when she was forgetting) I just used to say 'don't worry you have just got in a bit of a pickle, we are here to help, its OK' - it was the reassurance that she required. The diagnosis is of more benefit to the family that are supporting the loved one with dementia, as it opens doors to funding (such as Attendance Allowance) and support networks. If you think about it, nothing has really changed, it's more about helping Nan and having the right support in place - which you seem to be on top of. All the best.

 

[canary]

Hello @lensgirl and welcome to DTP

It can be overwhelming around the time of diagnosis, but take it bit by bit - you dont have to everything at once. I personally wouldnt mention the scan until just before she goes to the appointment as it may well upset her and she might decide she doesnt want to go! Give her less time to worry about it!

I think the thing that is of most importance is to get POA sorted while she still has capacity. I see you have already download the forms from the internet and you just get a friend of hers who has known her for 2 years to witness the signature. I wouldnt delay this for too long or it might never happen.... Once she has actually got a diagnosis you have to report this to DVLA - it is mandatory, but she probably wont do this herself. The whole issue of driving is a minefield. You may find that she is not able to learn how to use her mobility scooter and this may be why she doesnt use it. It is very difficult for people with dementia to learn how to do things and as the disease progresses they forget how to do more and more things - usually starting with things like the TV, washing machine and other technology. I have recently discovered that my OH was not showering because he had forgotten how to work the shower and could not remember the process of showering himself.

Other things like whether to get carers in, or her moving and things like that can be slotted in as and when they become necessary. Moving is a huge deal, so dont rush it.

 

[Pete1]

I think the thing that is of most importance is to get POA sorted while she still has capacity.

Absolutely! I forgot to say that, it makes life extremely complicated if this isn't in place - that has to be a priority @lensgirl

 

[lensgirl]

thank you. I'm just a bit worried that she will feel I am taking away all of her independence in one go. I might just talk about it, and that it is something we need to talk about once she is feeling a little less over whelmed with it all

 

[canary]

Try putting it to her that its something that everyone needs to do - like an insurance policy. You could even say that you are going to do one for yourself. I got OH to do POA by telling him that it was something we both needed to do "while we still have our marbles" - hes actually in cognitive decline himself, but it made him laugh and he did it. By making light of it he didnt feel I was taking away his independence. The POAs are now registered and put away ready for use and I suspect that he has entirely forgotten about them.

 

[Banjomansmate]

Please get the LPAs (Health &Welfare and Finance) done immediately, it is surprising how quickly cognition can decline. If you can arrange for your Mum to do hers too, to encourage your Gran, then even better, you have (killed two birds with one stone!). I found the crunch way to get it done was to point out how much more expensive it would be to have to go through the Court of Protection if it was needed after an accident or the donor was in hospital and somebody had to deal with their finances! Money talks!