Newbie carer first post

New to Carers Connect
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Hello everyone,

I recently became a carer for my dad. He has recently been having falls & he is undergoing tests to find out why he is having these falls. I have been driving him to all of his doctors/nurses/hospital appointments & I have also gone into the most of these appointments with him to support him & I have been helping him with his medication - so I decided that I would become his carer. At the moment he doesn’t need a lot of assistance but as time goes on, he will need more help. The hospital has supplied walking frames for him to use indoors to assist him with his walking & we have bought him a rollator to use outdoors - which he has mastered quite quickly & it has given him more confidence while walking.

I am sure I will have many questions to ask in the future.

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@Ewokfett,welcome to the fourm. Hopeful we can help. you are welcome to cone onto the rollcall to have a rant or ask advice from us. We don’t bite*.*

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@Michael_1910123 Thank you, I will definitely have questions to ask as time goes on.

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Welcome to the forum.
I always try to make sure everyone claims the benefits which they are entitled to. They depend partly on age. How old is dad? Is he mentally OK? Do you have Power of Attorney?

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@bowlingbun My dad is 79 years old & he is mentally OK & no I don’t have Power of Attorney.

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Speak for yourself Michael !!! :blush:

Seriously @Ewokfett a big warm welcome to you. If Dad is able to do so, I would recommend obtaining Lasting Power of Attorney for both Health and Welfare and Finance and Property as it can help prevent difficulties if anything happens to prevent him making his own decisions in the future. It is simple to do online - you don’t need a solicitor - and it may well help to discuss his feelings and options before these conversations become more urgent.

My husband suffered a stroke nearly four years ago - out of the blue - and once he was home from hospital and starting to recover we sat down one day and BOTH said ‘we need to talk about something’. It turned out we BOTH had the same thought - LPA so that if things went wrong it was all taken care of and we were both protected. As we talked thigns through we gained an insight into what the other wanted and it made discussions so much easier for us.

Since then he’s had a cascade of medical issues and I have been able to step in knowing EXACTLY what he wants and can speak for him when he gets too tired to hold conversations and when there is too much information for him to process all at once. The burden was eased for me.

I would also urge you to ensure Dad’s Will is up to date and his Executor(s) understand exactly what his intentions are. Practicalities but doing it before there’s any pressure means it’s all simple.

Likewise, in discussing LPA for Health and Welfare - you can find out how he feels about his Care if things start to decline. Stay in his own home, or whatever. That way you never feel you are forcing anything on him.

It’s a lot to think about, but initiating conversations reduces the pressure later.

Hope I haven’t sacred you too much! You’ll find a wealth of experience and knowledge on here and feel free to ask ANYTHING as it’s hard to shock any of us regulars.

I’d recommend you drop in on “Roll Call” thread as that’s where we tend to gather for a chat (or a gossip) and a laugh to ease the pressure. You can contribute or just ‘lurk’. As @Michael_1910123 says we don’t bite (often). The outpouring of support is absolutely amazing and there’s not one of us who hasn’t benefitted from that supportive environment at one time or another.

Thanks for sharing and again - welcome aboard.

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@Ewokfett ….welcome to the forum from me too

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In that case, dad may be entitled to Attendance Allowance. Consider suggesting you have Power of Attorney, when you feel the time is right.

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Dear Ewokfett

Hello and welcome to the Forum. I am Kristie and I am an online community host. It sounds like you have a lot on your plate at the moment, are you getting any extra outside support? I know it might not feel the same but the Forum has a number of carers from all walks of life who understand what your going through and are happy to support you and share their experience. Carers UK have a helpline as well that you can call and the advice team can offer you support and give you advice.

Best Wishes

Kristie

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@Kristie_2104, thank you for the welcome. I currently don’t have any outside help at the moment as I have my mum & my brother to help - so I am not on my own. My mum is home with my dad all day while my brother & I are at work & I work 6am - 2pm Monday to Friday. We have an occupational therapist coming out in the next few weeks to assess what we need to help my dad.

Thanks everyone for your advice & recommendations.

Regards.

Ewokfett.

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I mentioned Attendance Allowance in my first post to you. Please make sure dad applies, It is NOT means tested, and might enable him to have a few things to make life easier. I always call my dishwasher my “mechanical slaves”! Depending on his savings qualifying for AA might enable him to have pension credit. Carers UK has an excellent helpline which can go through things with you, confidentially.

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Hi, thank you for your latest message, I am sure that the occupational therapist will advise on whether he will qualify for any benefits when they visit. We haven’t really looked into it yet - we don’t actually know what his condition is yet which is making it difficult to know what benefits he could be entitled to so we can apply for the correct ones.

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Hi @Ewokfett Welcome to the forum!

Good for you reaching out this early on, and also that you’re making a conscious decision about being a carer. It sounds like you’ve already been providing care support

Are you working full time, in an office/remote? Are they understanding and flexible?

When you say ‘we have bought him a rollator to use outdoors’ - is this you and your partner? Your mother? Siblings? meaning - do you have family support or are you doing this on your own?

Work flexibility and support will become more important.

FYI here’s the Carers UK info on Power of Attorney: Different ways of managing someone's affairs | Carers UK that @Chris_22081 and @bowlingbun mentioned

A few suggestions

a) Put a Hospital Go Bag together, to be ready if and when you need it. This helps immensely if there’s an emergency. Include a bottle of water and some biscuits as it could be a long wait in ER.

b) Write a one-pager to put in the bag, and a couple of handy copies: NHS number, medications, allergies, GP name and any recent doctor consult info

c) if you are going to take on the responsibility for his care it may be good to start having conversations with your Dad about how he does bills, payments e.g. utilities, insurances, car…”so that you’re aware’ this is a good segue to talk about doing the power of attorney (PoA) so that you can execute his wishes with banks etc. Starting open conversations about his wishes is a good way to start paving the way on how you’ll do things together..its a continuous evolving discussion not a tickbox, and it can get tricky if he’s starting to feel more vulnerable, scared and less able

Standing orders, direct debits, billing etc can be a pain if something is missed and your Dad is ill - if you don’t have a PoA and sometimes even if you do, institutions want to have your Dad on the phone

Lastly - NEVER assume things will happen, or ‘the right questions will be asked’ or automatically done. The healthcare system is often fragmented, siloed and communications don’t flow, if it does it can be slow (sometimes even inaccurate).

So, think up questions prior to consults (ask us :wink: ), ask for medications to be spelt out, what the next steps are and how you can follow up if you haven’t heard by when - telephone who at what number (e.g. consultant’s secretary, email address)

Having a ‘go bag’ is SO helpful. For you and your Dad.

[I cared for my Dad with my Mum until he passed in 2020, then pivoted to care for Mum through cancer surgeries and treatment. ]

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@Ewokfett Forgive me chipping in again. Leading on from what @Victoria_1806 has already mentioned about “go bags” etc, I would strongly recommend that if you have not already done so, you ensure your GP and Dad’s GP know you are his Carer.

They will record that information on both your and his records and it opens up avenues of further support to you. It also means that if you have to visit your GP the staff are aware of the additional pressure you are likely to be under.

We are lucky to have an amazing GP Practice and although I wouldn’t say we get priority attention, they know that if I ring it is a genuine reason for my concern and not just ‘crying wolf’. My GP even authorised me to have the Shingles vaccination slightly ahead of schedule as he recognised the risk of Graham being without a carer if I take ill.

The OT visiting will, hopefully, give you a lot of support with useful equipment etc. Don’t be afraid to ask for the Moon - the worst they can do is say “no” ! Our OT got hold of what they call a ‘sit/stand’ frame for Graham which fits under the chair or sofa and allows him to pull himself to a standing position - or sit down in a controlled way. An amazing yet so simple piece of kit, which not many people knew about.

Good luck and do please keep in touch on here. As I said there is an abundance of support from everyone.

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You don’t need a diagnosis, just give details about what he needs help with. Talk to the helpline. Don’t ever rely on OT’s or social workers for advice on benefits. Too often they don’t know the rules. I reclaimed £8,000 from Hampshire Social Services for mum as a result. I’ve been helping people with benefits for over 50 years, as part of my work, and later as a volunteer. My son, mum, dad, mum in law and father in law all claimed disability benefits, and I received them after I was nearly killed in a car accident.

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Just to add to what others’ have already said - welcome! I’ve been caring for my mum and dad for the past year, before that I lived in the US but was doing a lot of the organising and admin, and coming over for appointments or attending virtually. Initially I had little other support but managed to get carers coming in as needs increased and now they have 24hour care at home. It’s been extremely tough at times, and definitely exhausting, and taking on the admin (benefits, bills, correspondence etc) is massive and easy to underestimate how much time it adds on top of the time you are physically with them, but what I want to say is how relieved I am that I’ve been here and able to do this, and how much I’ve loved being with them some (certainly not all!) of those times. It is such an amazingly important and undervalued thing to care - I hope it brings you joy as well as all the difficult times for as long as you decide to do it.

I’d also reiterate other points:

As @bowlingbun says, definitely apply for Attendance Allowance. It takes time to complete the form, but well worth it. My mum didn’t want me to initially but someone said to her not claiming it is a bit like saying you don’t want your state pension, your entitled to it if you meet need, and that helped.

My parents GP has also been extremely helpful and supportive to me, even seeing me for appointments without my parents when that’s easier. I’ve also had a good cry on the receptionist’s shoulder.

I have LPA and this is so helpful - and those early discussions when you have time and space so good. My dad can’t communicate now and there will always be things I wish I’d asked.

I hope your dad gets his diagnosis soon, knowledge does help, and opens up new conversations. It took over a year to get my dad’s diagnosis (actually quite fast for his type of rare dementia), and while it helped and did open up different avenues of support, it wasn’t quite the difference I hoped it might be. With hindsight I wish I had asked more then about what to expect and used it to talk more with my dad, though it was good to focus on him as he was then and what he needed then and to enjoy doing things together - no right or wrongs! Take care.

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Thank you for the welcome & the advice.

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Dear Ewokfett

I would like to say that i am sure you will get all the help you need from the occupational therapist in relation to what equipment you need to assist with your dad. I would also like to say that on the Forum Carers UK have a helpline so if you need help within your caring role you can find the Carers UK phone number and give them a ring they are open Monday to Friday. Have you had a carers assessment done to see whether you could get outside help with carers looking after your dad as well? The outside carers could help you. The information for this will be on the Forum. When you become your dads carer you might be able to claim for carers allowance so please check your entitlement for this. I would hope you find all the information you need on the Forum. Welcome to the Forum once again Ewokfett.

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@Kristie_2104 thank you for your post, my caring role for my dad is currently taking him to his appointments & going into the appointments with him. I am also maintaining the medication levels & ensuring he takes the medication as directed by the GP/hospital. We don’t require outside carers atm but as time goes on we will certainly look into this.

I have looked into Carers Allowance & unfortunately I do not qualify for this as I work full time.

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Hi and welcome to the forum! You have been given a lot of really great practical advice to pour over. In addition to this please make sure you look after yourself. Make time to regularly do something you enjoy. Another tip, please delegate tasks to other people when you can.

I am part time carer for my 99 year old mum who still lives alone. Over several years, her needs have increased and each time I tried to meet them. Early this year, I burnt myself out and contacted my GP for sleeping tablets. GP was so helpful and as a result I attended a course for carers and to help me sleep better. As a result, I realised that in trying to meet Mum and others physical and emotional needs, I was neglecting my own needs. Since then I have made sure that I I do things just for me and have opened up to others that I am struggling. Unfortunately, there are no relatives or friends locally that can help, but I do feel in a better place myself.

The amount you do for your Dad will likely ramp up with time, so by asking for help early you are likely to be in a much better place to cope longer term. Good luck.

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