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Feeling terrified

Scaredandconfused

New member
Sep 6, 2020
1
0
Hi.
I'm new here and don't really know where to turn to share my fears.
My mum has just been diagnosed with Alzheimers. I live 300 miles away and I spoke to her on the phone today and it was the first time she has talkwd about Alzheimers with me. She understands what Alzheimers is, but believes it is a manageable disease. I dont know how to prepare her for the future without scaring her senseless. My brother lives close to her and has been supporting her and he's asked me to discuss power of attorney with her as it needs to be done sooner rather than later as she is deteriorating very fast.
Please can I have some advice from anyone on how to broach this without sounding like I'm after her life savings or controlling her?!?! It just seems awful to say basically, "well, you've got Alzheimers, so let's get you will sorted etc"
There's so much I want to write as my head is all over the place, but I'll leave it here for now.

(brief background my mum was an alcoholic before going into AA. My brother and I also think she has a mental health condition like personality disorder. As such I haven't had a very good relationship with her over the years )
Thank you for reading.
 

karaokePete

Registered User
Jul 23, 2017
6,328
0
N Ireland
Hello @Scaredandconfused, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,848
0
Nottinghamshire
Hi @Scaredandconfused and welcome to Dementia Talking Point. You'll find lots of help, support and advice here.
Regarding the Lasting Power of Attorney. I'd couch it in terms of being a sensible precaution, maybe talk about having one done for yourself at the same time. Maybe explain that it'll mean you'll be able to carry out her wishes and if it isn't in place it could mean social services taking over her finances. Does she have any friends that would encourage her to do it? My mother refused to believe she needed any help with anything, even though it was becoming obvious that something was awry, but was happy to do the LPAs as a friend explained what a good idea it was. You could also explain that it doesn't mean that she can't look after her own affairs, just that you'll be on hand to help as and when needed. We registered the LPA with mum's bank but she still carried on drawing out money etc. as usual. As she declined I took over more and more of her affairs.
I'm sure others will be along shortly with more suggestions.
 

jennifer1967

Registered User
Mar 15, 2020
11,745
0
Southampton
i did the same with my husband although our gp is very straightforward and brilliant and said about doing it and there are 2 finance and health and welfare. i told him it gives him a voice if he cant express it himself. i said it could some years yet but you have to have capacity to allow it. its not just when have dementia diagnosis but whenever 30s 40s 50s dont have to be when older or retired.
 

Banjomansmate

Registered User
Jan 13, 2019
4,079
0
Dorset
I didn’t mention dementia when I suggested LPAs to The Banjoman, although it helped that I already had my finance one in place to refer to and did the Health & Welfare one before he did his. I put the idea forward as a good idea incase he was ever incapacitated e.g. after a stroke or something similar or if he was hospitalised after an accident. I pointed out that nobody in his family would have power to make decisions for him. I also stressed the cost of the OPG running his finances, how much they would charge annually and how much more difficult it would be for his daughter. In the end he came round to my way of thinking, only instead of naming his daughter as Attorney he would only agree if I became his Attorney. Shot myself in the foot there!
 

Whisperer

Registered User
Mar 27, 2017
318
0
Southern England
Dear @Scaredandconfused

I read your thread and you have my sympathy. Please allow me to explain how I achieved the LPA goal. I think it would be best for your brother to read my comments or you relay them to him, as 300 miles away means in practical terms he is holding the PWD hand. Fairly long story but hopefully reading it will help on other background matters as well. I am assuming your mum still has capacity so can agree to having an LPA?

1) You state your head is all over the place. It Is not surprising when your mum has been diagnosed with Alzheimer’s, you are 300 miles away, there have clearly been past problems to deal with. Okay deep breath and accept my comments are aimed at helping and supporting you. Your brother is going to be in the front row of helping your mother on a day to day basis. You will need to help him as best you can from a distance, such as his request you mention the LPA. Alzheimer‘s is only going to get worse. You can really help your brother by being a sounding board, a voice on the phone when something needs discussing, a source of no doubt in the future much needed support.
2) Several ways to “sell” the idea of an LPA, somewhat determined by how the PWD reacts. My mum was always very practical. The LPA was sold as a means by which mum could have some control over her affairs if say she had a stroke, (runs in the family), knowing I would be able to help her eg changes in the home before leaving hospital. What had happened in the past with her mum, the related problems, allowed easy comparison. It meant mum could chose now who she wanted to run her affairs in such circumstances, appoint reserve attorneys in case as I put it I stopped the number ten bus. Humour still worked with mum and took away the thoughts you were having about being seen as wanting control of her money.
3) Mum agreed but wanted it done via a solicitor. More expensive but helped as well. The solicitor was great stressing the LPA was a good idea, practical, etc. She was aware of mum’s condition and confirmed she still had capacity without directly saying she would be checking that point. Mum wanted it all done “properly”, cross the Ts and dot the Is.
4) Importantly remember there is a stepping stone with the LPA. It can be agreed and registered with the court of protection. The choice is have it put into operation immediately so the attorney can act if need be from day one, with the consent of your mother, the best option from a carers view point. The PWD still has charge of their affairs but the attorney can act with their consent. Another sales pitch being mum I can get your standing orders amended for you in future without you having to worry, etc. The alternative is that it only comes into force if the PWD loses capacity, something of a Potential minefield, to be avoided if possible. I and the solicitor stressed to mum it was ready to go immediately If we did the former. Plan for an emergency happening out of the blue, and all will be okay was a policy mum readily accepted. I stressed you never know the future. You in hospital mum, before you can come home changes needed to your home eg chair lift, and I need the authority to get things done and paid for. Sold as an insurance policy with a working practical example. I would stay away from Alzheimer’s as the selling point, unless you are confident your mum can handle the implication for what the future holds? The important point is stressing practicality.

Our LPA was drawn up in early 2018. Gradually got used with the utilities and banks. Personally I had dreaded that day as it would represent me finally saying mum sorry I now need to take over. The insurance policy use by date has arrived. In your circumstances and your mum’s more rapid decline that moment is in reality very likely here, or soon will be.

Long story but it did not work out as I dreaded. So one last point. You clearly have perfectly understandable fears and concerns going forward. A few hours reading threads on this site will not sugar coat the situation. However please remember a few things. Firstly even from a distance you can help, in reality more by supporting your brother in difficult circumstances. Accept he is dealing with matters day to day and directly. Early on my siblings expressed confidence in me to deal with mum who I live with. They stressed they would help me but practical decisions need to be made based on what is best for me and mum, in our daily joint experience of Dementia. Those simple words helped me a lot. They support me, they recognise I have to get on with matters day to day. Secondly both you and your brother need to be gentle with yourselves, try and let go of the troubling past. Accept as best you can what has happened to your mum, recognise it will impact on your thoughts and feelings, that is normal. There are no right or wrong responses, in the initial upsetting period. Have you someone you can talk to? You have found this site, where people are wonderfully supportive, will not judge you, have a vast supply of knowledge and experience. Please keep posting no matter what the reason. You may feel alone but you do not have to stay alone. Asking questions here early on helped far more than any other information source. Remember not medical professionals, just other carers who have various levels of knowledge and experience, helping each other.

best wishes
 
Last edited:

JoannePat

Registered User
Jan 24, 2019
83
0
Hi @Scaredandconfused I am so sorry to hear about your mum. I know that my first post was very similar and i am sure if you look through the forum you will find lots of advice.

Its such a difficult question, but please don't leave it too late. We left it too late with my mum, but fortunately my dad is still with us and well, so I am able to organise their finances with him. As soon as he realised we had left it too late for mum he quickly got his paperwork organised and has now given me POA and sorted out his will.

Your mum will probably be more accepting of it than you think. Explain to her that you have to make sure she is being well cared for and that you are doing this to help her.

Good luck, xxx