Long distance care for mother with Alzheimer's

[EmmaR2021]

Hello,

I am reaching out as a little lost on where to start and begin. My mother in law has recently been diagnosed with Alzheimer's, although it is a recent diagnosis her condition is quite advanced and we are becoming increasingly concerned for her welfare. We do not live in the UK so trying to manage her care and ensure she is safe and looked after is becoming increasingly difficult.
We received the formal diagnosis around 6 weeks, since then her case has gone back to the GP. Despite endless attempts to speak to the GP and understand what the next steps are we have not been able to do so. My husband flew back to London last week in the hope of getting a doctors appointment with his mum but it was not possible. We are now stuck in limbo, we are completely lost and do not know who to turn too. The GP are not helping. How can we support her? We believe she needs some kind of home care? Is this possible to get this kind of support through the government? (she is a housing association tenant) Any other help/advice on what to do would be very helpful.

Thank you,
Emma

 

[Sarasa]

Welcome to Dementia Talking Point @EmmaR2021. First of all I'd contact the social services department for the London Borough in which she lives. They should do a needs assessment and help you find some help for her. However social services are really stretched at the moment so you will need to emphasise that she is a vulnerable adult and that there isn't anyone on hand to support her. If your MiL has assets of over £23,500 you could look at just organising some care to come in for her. However that could be quite difficult to manage from a distance. Is there anyone local who is keeping an eye out for her? It might be an idea to consider a move into care if her dementia is quite advanced. Not all homes are alike and your husband could contact a few and look round them if he is still there. This site is useful for finding what is out there, but nothing beats actually having a look round.
Finally this fact sheet might help with discovering what is out there for support for your MiL

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

This is a very friendly site and I'm sure others will be along shortly with their tips and suggestions.

 

[try again]

The admin side is to get power of attorney for health and power of attorney for finance.
Once you have those, it may be easier to speak to the GP

Financially, there's attendance allowance to apply for, council tax rebate, possibly TV licence, and check for pension top up

Health wise, it's a social service assessment for her. The GP should be able to refer you to a memory clinic.

 

[Violet Jane]

GPs don’t really deal with anything to do with social care (carer visits). That is something that Social Services deal with or you can arrange yourself.

You don’t say where you live or whether your MIL has any other close relatives living nearby. The reality is that it’s hard to support a person with dementia from a distance as there are many things that visiting carers can’t deal with. As I have said to my husband on several occasions, ‘it’s the house that defeats you in the end’. It is difficult to run a person’s house, garden, care package and life and health from afar. I found it very challenging and my mother only lived an hour and a half away. If there isn’t any close family nearby I think that you will be reliant on neighbours and close friends but it’s likely that they will get fed up if they get called upon to do too much. Many people like to help out on an occasional or ad hoc basis but will pull away if they feel that they are being put into the position of taking on a responsibility that they don’t want.

I know that the diagnosis is very recent but that doesn’t mean that it’s too soon to start considering a care home. If your MIL will need funding then Social Services will probably try visiting carers (up to four visits a day) first before they consider a care home. If your MIL will be self-funding and she agrees she can move into a care home without going through the visiting carers stage.

Live-in care is a possibility but it can be more expensive than a care home and has its limitations. I have organised live-in care for an elderly friend and so I have some experience of it. I’d be happy to answer any questions if it’s something that you’d consider.

 

[Yankeeabroad]

Hi @EmmaR2021. My parents live in the US and I shoulder the main care for them. I can’t give practical advice on the UK system but can advise a bit on LD care.

It is very difficult to organise things initially from abroad and I encourage you all to get some local support ASAP. I have spent months (like 6 months in a year) on the ground in the US sorting things out, both when we realised my mom had dementia and after. We were already aware of my Dad’s diagnosis and condition. We were also lucky that they had moved to a continuing care retirement community so we had people watching them, resources on site and they prioritised my mom on the waiting list for the memory care center. I still travel back every 6-10 weeks to keep on top of admin and my dad’s condition.

We found a trusted caregiver (1st one didn’t work out) that helps tremendously. She coordinates the calendar, ensures the fridge is clean of old food, laundry, helps somewhat with tech, helps print documents that I email, drives my dad around, etc. Just on the ground stuff that it’s not possible to do from afar. she also has regular insight into his current condition and can provide observations, feedback, and identify problems. We are lucky that my dad doesn’t wander and can manage his Activities of Daily Living ( meals, hygiene, toileting) without assistance.

Arrange as much access, preferably electronic, to accounts and doctors as possible. I now have electronic access to most all of my Dad’s admin, bills and credit cards but this can be hampered as many companies block access from overseas due to security.
Try to ensure all support folk and the medical team are comfortable communicating electronically. It will help if there are time differences and ease comms. I was very frustrated when the care home wouldn’t facilitate WhatsApp or FaceTime (thus saving me loads of money) despite staff doing that in the memory unit the floor below. This is now a question I ask when arranging support.

Get a local UK number if you can and a long distance package on your phone. I have a local US mobile phone as many employees won’t be able to call out overseas. This even includes medical facilities in the US. So for example when my mom had a stroke and was taken to the ER, a local number was the only way for the ER doctor to contact me to discuss her condition and treatment options (my sister often goes AWOL and won’t answer the phone, my dad‘s phone battery was dead and he can’t really handle those types of issues). I set up Wi-Fi calling on the US phone so most times I can speak and text without charges if in Wi-Fi range.

Plan ahead as much as you can. We are familiar with my dad’s options in his community (including the administration) and have researched the local memory care facilities, identifying 1-2 alternatives. This way when or if he needs to move, we have some options (knowing wait list limitations). I update myself regularly for any changes to the facilities.

wishing you the best

 

[GROCKLE]

I live in Switzerland and since December 2019, and I've been managing Long Distance care for my 84 year old sister since December 2019. Since December 2022 she is now permanently in a care home.
In a Nutshell, you will need to do the following:

1. Get both Powers of Attorneys done for Health and Wealth - you will need them sooner or later for everything.
2. Using this you can eventually get everything paperless.
3. With a formal diagnosis of her Alzheimers/Dementia, this will be key to helping you get Attendance Allowance and also Council Rate Rebates, you will need these extra funds for care costs probably soon.
4. Care: AgeUK and we used Abide Home Care in ever-increasing time slots
5. Watch out for Telephone Scamming of vulnerable persons with dementia, see my multiple forum entries on this topic and what you can do.
6. There will be frustrations, some telephone support, in particular Banks do not allow full telephone support despite powers of attorney, when you are phoning from abroad. You have sometimes to be persuasive to get anywhere.
7. You will need a good cheap international calling solution, I use something called 10787.ch from Switzerland. Foreign mobile numbers are often not accepted by UK Service Apps.
8. PC2paper.co.uk can be used to get items posted fast in the UK, you create /add documents in a Webbrowser of Pc2Paper and then send to be posted that same day.
9. Getting to the GP, again you need to be persuasive and if you can get access to them via a secure E-Mail which I was finally able to, it helps. But the NHS Apps and things wouldn't allow me to use them living abroad. I did once even get the doctor to call me 20 mins person to person.
10. An outside key safe for carers and visitors and replace the lock on one door with Euro Cylinder Lock, for the Key from the Key Safe, which can always be opened from outside, before the PWD leaves the key in the lock and can't open it to you.
11. Having a friend/helper on the ground helps?

Btw: fortunately I was able to arrange for the Powers of Attorney in June 2019, pre Pandemic, but it still required a personal visit to the Bank in December 2019. After that, despite the Covid Pandemic I was able to manage all aspects of my sister's care and support at home from Switzerland until I first was able to visit her again in June 2022. It's doable. 🙏

 

[Violet Jane]

@GROCKLE, that’s impressive. I think that your post should be made into an information sheet for people caring from afar.

How did you manage the house and garden though? I have found that there are always things which require attention which visiting carers can’t deal with: things breaking down, things needing to be replaced, garden maintenance needed. Did your sister have a helpful neighbour who could source and supervise tradesmen, gardeners etc?

How did your sister attend appointments? Did a helpful neighbour get her ready and take her to appointments?

We have organised live-in care for an elderly friend who lives locally and although we don’t have to do as much there’s still a lot that I have to pick up, mainly to do with the house and garden.

 

[GROCKLE]

@GROCKLE, that’s impressive. I think that your post should be made into an information sheet for people caring from afar.

How did you manage the house and garden though? I have found that there are always things which require attention which visiting carers can’t deal with: things breaking down, things needing to be replaced, garden maintenance needed. Did your sister have a helpful neighbour who could source and supervise tradesmen, gardeners etc?

How did your sister attend appointments? Did a helpful neighbour get her ready and take her to appointments?

We have organised live-in care for an elderly friend who lives locally and although we don’t have to do as much there’s still a lot that I have to pick up, mainly to do with the house and garden.

It was in Covid time, when I realized that things started to get really bad, she failed to renew her driving licence on time, fortunately. I told her we'd sell her car, organized it with the garage, and then I E-Mailed the vicar of the church I knew my sister fairly regularly visited. I was lucky, very quickly, two of her friends from the church got involved. They helped organize the Attendance Allowance without my sister's knowledge, she didn't want it, but my PoA was accepted with the friend going in by the local care persons. With the diagnosis of Alzheimer's, the AA was easy to get as was the full council rate rebate, took less than a week.
These two friends also have organized a gardener when necessary. One also took her to a dental, doctor and covid injection appointments. I also have a cousin and his wife who live 1 hr away and visit maybe once every couple of months. These two friends of my sister did so much, but the various care units, AgeUK, Abide Home Care etc. were all very helpful in setting up the organization of her daily care and support.
For a while, the time-consuming problem was the phone scamming attacks and ensuing Direct Debits, I have written about this and how I solved it in detail in this forum protecting-against-phone-scammers.
Now she is permanently in a home since December 20, I have to organize a gardener, spring is coming.
Everything else is paperless. I am an IT person from profession, retired now. I will go over in a couple of months and start clearing out the house. I have all Deeds, Will, Funeral plan etc in safety.
Yes, it consumed me these past years, retired with an unexpected full time job, some months 30+ hrs Switzerland to UK telephone calls!, but also these friends of my sister were active too, more than they probably let on. She is now safe, cared for at a cost of course.
There is still a lot for me to prepare for with the house. I will want to sell it, but need to clear it.
The worries are not yet over.

 

[GROCKLE]

What communications are useful or a problem to manage UK issues when you live abroad​

Living in Switzerland, my only way of managing these issues were digital solutions. My sister also didn't have anything digital or knowledge, therefore I had to use my PoA to set up everything in a paperless digital way. Problems are because of physical location outside the UK, IP checking and also Mobile Phone Numbers which are allowed or in my case not allowed. Also, registration with non UK Postcodes causes problems.

Here a list of what works or didn't work:

1. Banking
   • Lloyds Bank App works abroad on a non UK phone, very useful. Website Access OK, also trusted device and two-factor authentication works. International phone calls essential for security issues, but not technical support given unless you could coax them into it, even for scam security issues! Cost me hours of international calls. Fortunately, I have a cheap international call account.
   • Barclays App does not work on a non UK phone, Website Access OK, also trusted device and two-factor authentication works.
2. NS&I
   • Website Access OK, also trusted device and two-factor authentication works.
   • App not possible?
3. British Gas Utilities
   • App does not work on a non UK phone
   • Website Access OK
4. BT
   • App does not work on a non UK phone, website access OK
5. Care
   • AgeUK - E-Mail and (WhatsApp with special agreement)
   • Abide Home Care - Carer Report App, E-Mail and (WhatsApp with special agreement)
6. Care Home
   • E-Mail, Telephone and a Website Photo Access only
   • (WhatsApp with special agreement, special occasion)
7. GP Surgery (in our case)
   • Initially a special secure E-Mail but read by a receptionist, this wasn't a reliable form of communication and I had sometimes to coax the receptionist into doing what I wanted. Phone is a nogo international, 15 mins 2x loop as the first caller. I was then asked to use the NHS App, got almost to the end of setting it up, and then it failed because either I was not in the UK or the Mobile Phone was not a UK one. I went back to mail showing the error messages and that I need to continue using the secure E-Mail. That was accepted, and I received a 20 min person to person call to Switzerland from the GP himself. But this will all depend on the surgery and in many cases you could be fobbed off if you are not too digital savvy.
8. Charities and such, Websites and E-Mails usually no problem, except when trying to change addresses, non UK postcodes are not accepted. In general, any organization which ties in it's security information check to your postcode could have problems.
9. Scottish Widows: I managed to get access via the web, PoA was accepted. But the access was then blocked when they found out that I was not the person from the account, despite having approved PoA - a company policy rule. But lots of ensuing problems which invoked an address change which ricocheted to the bank and ISAs and all data had to be corrected again. Compensation given at least. I have closed the account.
10. Spammer Phone Checking Web Tools, some don't work if you are outside the UK, but can be tricked into working using VPN services.
11. Worksmen: Gardner, Locksmith... WhatsApp, E-Mail all OK.

Hope this helps, maybe if I remember I'll add more to this list.