Mum diagnosed Nov 21- live 150 miles away

[Wendy7633]

Hi everyone- new to this forum to seek advice and support please? 🙏
Mum (78) diagnosed with Alzheimers in Nov 21- she lives with my Dad (84) in Cardiff. I live 150 miles away so supporting from afar.

Mum is mobile, potters about and can look after herself but is more confused and bewildered each day, can no longer write and finds it very hard to finish most sentences. My Dad has always been looked after my Mum and switching roles for him to look out for her is a challenge!

The hardest part is not having a timeline for when things will deteriorate….they have a great local support but don't want to ask for help. Ive tried to set up visits to support preparing meals etc but they’re just not interested.

Any advice on how to support from afar to know they're safe- will the guilt of not being closer get any less?!

 

[SAP]

Hi @Wendy7633 welcome to the forum. I was a long distance carer for my mum some years ago, she lived 300 miles away from me.
The difficult thing is wanting the best for your parents but not taking over their lives. I desperately wanted my mum to move nearer to me but she wouldn’t hear of it. Sometimes this is denial sometimes it is pride. If your parents are managing at the moment then you kind of need to let them , meanwhile start thinking about the future. Have you for LPA for your parents, now might be a good time to sort this out if not. Have a gentle chat with your dad about what point he feels he can’t cope any more , personal care? Sleepless nights? Behavioural issues? We all have our end point and knowing what is available can help lessen the blow when this comes. Would your dad consider a cleaner to lighten his load, that would get them used to someone being in the house helping them.
The guilt monster gets us all. Just remember that you cannot live your parents lives for them and you can’t just completely change your life either . Quite possibly they would want you to.

 

[Wendy7633]

Hi @Wendy7633 welcome to the forum. I was a long distance carer for my mum some years ago, she lived 300 miles away from me.
The difficult thing is wanting the best for your parents but not taking over their lives. I desperately wanted my mum to move nearer to me but she wouldn’t hear of it. Sometimes this is denial sometimes it is pride. If your parents are managing at the moment then you kind of need to let them , meanwhile start thinking about the future. Have you for LPA for your parents, now might be a good time to sort this out if not. Have a gentle chat with your dad about what point he feels he can’t cope any more , personal care? Sleepless nights? Behavioural issues? We all have our end point and knowing what is available can help lessen the blow when this comes. Would your dad consider a cleaner to lighten his load, that would get them used to someone being in the house helping them.
The guilt monster gets us all. Just remember that you cannot live your parents lives for them and you can’t just completely change your life either . Quite possibly they would want you to.

Thanks so much for your reply, much appreciated! There is an LPA in place for Mum and they have recently got a cleaner once a week which definitely helps. A good idea to have a chat with Dad, I think he underestimates how much support Mum will need and trying to encourage him to seek his own support network but one day at a time!
Thanks again 🙏

 

[Kevinl]

It doesn't go unread Wendy , just sometimes difficult to know how to reply.
SAP covered pretty much all of ít. K

 

[Spottydog]

I'm a remote carer for my dad. It's stressful as you feel so out of control, eg. Can't pop round for a cuppa to see the lay of the land. Dad managed about four years at the 'pottering' stage after my mum died gradually getting worse. We have a joint bank account and I take care of all his bills and order his shopping each week. Getting yourself added as a third party on things like electric/doctors etc helps as you can then talk to them on their behalf. Managed like this until medication, cooking etc became difficult and then I had a battle to get care in place and had to convince him it was for my benefit rather than his! An external camera can be handy so you can see who is coming and going. I hope your mum and dad can prop each other up and carry on for longer... The problem will come if your dad gets sick or your mum deteriorates. Unfortunately there is no time line, everyone is different, but I would say when personal care becomes an issue or there is behavioral problems, e.g. Anxiety, aggression then it's time for you to worry. Rest assured you are not alone in this.... Best wishes x

 

[333pjb]

Hi,

Agree with other advice in posts.

The reality check is that predictably things WILL deteriorate as time progresses, hopefully gradually and without much heartache, but you need the plan now, including the rough framework for the difficult decisions which still hopefully will be some way off.

Definitely LPA, EPA as soon as you can with a reputable firm. Mental capacity isn't an issue at the moment it shouldn't be a problem as long as parents will not be upset / worried by paperwork they would need to have explained and sign.
If inheritance planning is being considered get professional advice, from same advocate if possible who can provide the LPA/EPA to avoid the "deliberate deprivation of assets allegation." If you suspect there will eventually be the destination of a care home for both parents, and there isn't any 'primary medical need' any assets will start to be swallowed up very quickly.

All very concerning I know, particularly as you are remote, but much easier to consider what you are facing when you have some time. We didn't get the chance with my Dad, and now have care home bills of £1800/week, no EPA, Dad without mental capacity, nobody with access to his house / finances or knowledge of what he does or doesn't have. - A steep learning curve and massive demands on time with pressing deadlines to make right decision. Avoid this at all costs.

It could be worth having "general conversations", with parents "about the future" in order to gain their views without scaring them that "you are planning something already"

What you want to avoid is any crisis, out of the blue, e.g. an accidental fall when you get that call late at night and there's the panic and immediate response needed.

Social services in local area need to be contacted to establish a 'keep an eye on' relationship. so if you need them you have the contacts and they know you.

Go through the harsh questions you are fearing, so you can establish if they are 'impossible to do', 'possible in the future, with major changes to you life' or 'likely to happen, so need to plan for."

Then, you can then use this framework to start to consider the future impact on your life and the timescale involved. e.g. will moving mum and dad closer to you be practical? (big decision, for you and them), is the alternative looking at a sheltered accommodation home in the near term? Places can be scarce but they do maintain waiting lists for when it might be needed.

You have to get advice from someone who will you be able to listen to, and understands your situation. Age UK and the Alzheimer's society are good sources. Age UK Factsheet 10 and 41 is a good start. (search for on web).

Taking some action now, without any commitments, will help the feeling of guilt not being able to help day-to-day. It will also be in the best interests of you all long term, despite being an unpleasant reality.

Good luck.

 

[333pjb]

I'm a remote carer for my dad. It's stressful as you feel so out of control, eg. Can't pop round for a cuppa to see the lay of the land. Dad managed about four years at the 'pottering' stage after my mum died gradually getting worse. We have a joint bank account and I take care of all his bills and order his shopping each week. Getting yourself added as a third party on things like electric/doctors etc helps as you can then talk to them on their behalf. Managed like this until medication, cooking etc became difficult and then I had a battle to get care in place and had to convince him it was for my benefit rather than his! An external camera can be handy so you can see who is coming and going. I hope your mum and dad can prop each other up and carry on for longer... The problem will come if your dad gets sick or your mum deteriorates. Unfortunately there is no time line, everyone is different, but I would say when personal care becomes an issue or there is behavioral problems, e.g. Anxiety, aggression then it's time for you to worry. Rest assured you are not alone in this.... Best

 

[333pjb]

Hi,
I don't know if by mistake I replied to you, rather than the original post (remote carer 150 miles away), that you responded to. If so, please accept my sincere apologies.

Regards,
Patrick

 

[jugglingmum]

Just to note that EPA was replaced by LPA in 2007, so sometimes people have older EPAs but only LPAs can be made after this date. The general recommendation is to replace with LPAs. EPA doesn't cover health and welfare so best to get this with LPA.

 

[SuperFab]

Just to note that EPA was replaced by LPA in 2007, so sometimes people have older EPAs but only LPAs can be made after this date. The general recommendation is to replace with LPAs. EPA doesn't cover health and welfare so best to get this with LPA.

And they are very easy to do. This is one of the very few things this government has got right. It's an incredibly simple on line process, and very quick now the backlog has subsided. Google 'LPA' and their website comes top of the list.