Starting to struggle

[Hellis]

I have a loving husband and two beautiful children 22 and 8, I consider myself incredibly fortunate for the life I have. I am of dual heritage and was adopted in 1976 into a loving family, to whom I still live next door too. My adopted mum gave birth to a son in 1960, two years later they were the first white couple to adopt a "coloured" baby in Bristol. In 1967 my mother gave birth to another son, and finally in 1976 along can me.
So here I am 39 years later living next door to the most important people of my life, and "BANG" my father is at the first stages of dementia. So any help and advice from this community would be so helpful, so I can care for my dad who adopted and cared for me.

 

[Amy in the US]

Hellis, welcome to TP. There's a great wealth of information and resources here, and it's always a safe place to come and vent to people who understand what you're experiencing and don't judge you for it. I've been here only a short time, but have found it a lifesaver.

I'm so sorry to hear about your dad's diagnosis. This must be a very difficult time for you and your family. Good for you, for reaching out for help.

I'm not in the UK, so you will need to wait for a "local" to come along with better advice, but if you haven't already located the web sites/information for the Alzheimer's Society UK and Age UK, those are two places I know you should look for information and support.

I know you must be feeling overwhelmed, but if you're open to suggestions, one piece of advice would be, if you don't already have legal paperwork (power of attorney) sorted out, then do that ASAP. I hope you won't need it right away, but better to have it before you need it, than have to get it in an emergency.

I would also suggest that you secure permission to speak to your dad's doctors/have them speak to you directly, however you go about that in the UK.

You might just want to browse around in old threads, or do a search, or not. I found this helpful at the beginning when I was trying to "get my bearings," as it were, but others can be overwhelmed.

If you like, tell us more about your dad's situation, or any questions you have. I'm also at the beginning of this journey but it's clear to me that it is long and difficult. However, many kind people here and elsewhere make it just a little bit easier/bearable.

And one last thing: you must take care of yourself, or you cannot care for your dad or for your kids. It sounds silly, but it can be easy to get overwhelmed. Remember that your own life is important, too.

 

[liz56]

Hi Hellis
I am fairly new on here too, but I am finding it really helpful!
Welcome !

 

[Suzanna1969]

Hi Hellis,

Such a hard time for you and your family. I am fairly new to this too although a little further down the line. The best advice I can give is to set things up in these early stages because as things deteriorate you will have enough on your plate to deal with and it may be too late for some things so:

Get Lasting Power of Attorney for Finance AND Health sorted asap. The local AGE UK people arranged for someone to come over and help fill out the forms and they were invaluable in doing this for us.

Get Attendance Allowance sorted asap. Again, my local Age UK branch sent someone round to help fill in the forms so we had the best chance of a successful outcome - which we got - and can advise on other benefits too.

Get your Dad to write a letter to his GP to give you and your family Power of Disclosure so you can phone up on his behalf and get info/help.

My local Dementia Service provides excellent Cognitive Thinking Workshops which are weekly for 7 weeks, they really helped Mum and gave Dad a break too.

We have a local Dementia Cafe, enquire if you have one local to you too. Ditto Oveer 60s Clubs. Social interaction is SO beneficial for dementia, make sure family members visit as much as possible without overloading and keep your Dad socially stimulated.

If there isn't already something in place, set up a funeral plan. I KNOW it's morbid but it's the best thing you can do. As and when the time comes you wil have enough to upset you without having to sort out a funeral from scratch too.

Make sure you are not losing yourself during this time, it is easy to do as you get swept along trying to help. It is vital that you take time out for you and keep yourself healthy in body AND mind.

Don't take it all upon yourself. You have siblings, involve them and ask them for help.

Google like a maniac, there IS help out there! And use this forum too. I am fairly new but I know how incredibly daunting it all is when it's fairly new and also reading some of the other members' experiences can be upsetting, especially those who are caring for more advanced sufferers. I nearly didn't come back because I was so distressed reading about what my future could be but the fact is that everyone is different and nobody's future is pre-determined.

Don't be afraid to be afraid. I am bloody terrified. And don't feel bad for laughing sometimes too. There can be hilarious moments, in the early stages anyway.

 

[Kevinl]

Hi Hellis, welcome to TP, great first post, you really painted a picture for us all to share.
I think Suzanna has covered all the big points, you need to see what is available in the way of help and put everything in place for the future as he loses capacity. Get the POA, get the doctors on side, get the benefits sorted, check about a council tax reduction and most importantly try to plan who's going to do what, just because you live next door to the parents and you're willing don't be a doormat to your siblings (bitter experience talking there).
No two people progress at the same rate, my wife was diagnosed 4 years ago and although there is a lot she can't do there is a lot she still can. The diagnosis may be as you say a BANG but then life does go on, just differently to how you might have expected it would, so time may be one your side more than you think (fingers crossed for you).
My wife was originally from Bristol and we been there visiting relatives hundreds of time, one of our children lives there now with his dual heritage partner, I've often though about moving down there, I have to say the council's website (link below) makes it seem like they're putting some effort in to dementia help. Anyway anything you want to know just ask.
K
https://www.bristolccg.nhs.uk/your-health-local-services/help-and-support/dementia/

 

[Pickles53]

Just one thing to add to Suzanna's brilliant checklist....you can also apply for a reduction to council tax, though may have to wait until Attendance Allowance is approved if they don't get another qualifying benefit already. There should be information on your local council's website; search for 'severe mental impairment' often abbreviated to SMI.

 

[chelsea girl]

Get all the help you can. Welcome x

 

[henfenywfach]

I have a loving husband and two beautiful children 22 and 8, I consider myself incredibly fortunate for the life I have. I am of dual heritage and was adopted in 1976 into a loving family, to whom I still live next door too. My adopted mum gave birth to a son in 1960, two years later they were the first white couple to adopt a "coloured" baby in Bristol. In 1967 my mother gave birth to another son, and finally in 1976 along can me.
So here I am 39 years later living next door to the most important people of my life, and "BANG" my father is at the first stages of dementia. So any help and advice from this community would be so helpful, so I can care for my dad who adopted and cared for me.

Hello hellis

I care for my dad who has dementia.
I am also a mum and a wife and they too are supportive..but there are occasions where my dad needs and dementia keeps me on my toes.

The best way i can put it is that its now about society and family and healthcare adapting to help him. This sometimes doesnt happen but dont feel that you cant insist or demand or raise your voice if you have to. My dad attends different groups craft art choir..and all are therapeutic and for people of all abilities and for carers..you need to be around people going through the same..

I read every factsheet went on every course or session i could. This meant that as things changed or happened..i knew it was going to and what it was just not when.
This meant i could spend time dealing with things than being upset or panicking and unable to react because i was in shock as something had happened.

Im only human of course i still am sad about things but being determined and slightly angry with dementia allows us to laugh together at things and move on when something happens or changes.

There are also packs for children and dementia friend sessions for adults and children.

Take any help you can get..alzheimers society age uk crossroads carers projects etc.

Dont forget you matter and theres no shame to not knowing or coping or feeling youve had enough. Its your head telling you that you need to do something even if its only taking time out.

Valuable info from others poa an absolute must!!!. Red tape is hard work..when you have no legal right.

You will find that lots if services dont know enough about dementia...put the onus on them to find out more..so they can help your dad.

Best wishes

Sent from my GT-I9505 using Talking Point mobile app