Hello - I’m new here

New to Carers Connect
1

Hi everyone

I’m Liz and I just wanted to say hello and introduce myself. I’m so sorry that this is so long.

**Warning: very long post! Summary - long distance care of 2 parents with differing care needs which have suddenly changed and increased.

I live in Kent and my elderly parents live in South Wales. It’s about 4-5 hours drive and I have made it to the hospital before the X-ray results when mum had a fall, so I keep telling myself that it’s not like being the other side of the world. But I am finding long distance care a struggle.

My dad is 84 and had a stroke a year ago. Before the stroke he was fit and active Although was using a walking stick. He was going swimming once a week and very socially active going to social clubs, and playing on darts teams so that he was out pretty much every evening. Since the stroke he has regained mobility and at first glance you’d think he’s fine. But he doesn’t have the same level of focus, his memory is not good, he looks after his own personal care but struggles with buttoning up correctly. His hearing has been bad for years and although he has hearing aids he doesn’t like them. He tends to nod and smile and I’ve seen him do it to social services / professional visitors and they have taken it to mean he understood what they were saying.

My Mum, 83, on the other hand has been in constant pain and suffering from lots of physical problems for many years and gradually become less and less mobile so that now she can only manage to get around in the house. They have a stairlift and grab rails and perching stools, so she manages but can only be on her feet for very short bursts. Over the past few months she has had a number of falls. Back in November she fractured a vertebra, that on top of the spinal stenosis that she has had for years. But the fracture healed. Sadly she had another bad fall last weekend which has resulted in a hip fracture and a partial hip replacement.

So right now mum is in hospital and dad is home alone.

After Dads stroke myself and other family members stepped in and got social services involved as mum couldn’t cope physically without dad. Eventually everything settled down with us having Home Instead providing an hour of care every day of the week. My mum is a formidable woman and was adamant that they were managing but eventually accepted practical help with housework, laundry, changing beds etc. The carers are fabulous.

Now with mum in hospital I have become aware of how much dad is struggling. His memory and logic is poor so that he has bought a loaf of bread and a tub of butter every day while mums been in hospital - so he now has 5 tubs of butter in the fridge. I know that he struggles with money. And it also turns out that he isn’t managing his medications. Also I’m worried that my mum is starting to lose mental capability. Her memory seems to be worsening. But her character is so formidable that I don’t think other people would notice if they didn’t know her. She comes across as being sharp as a pin.

I have spoken to Home Instead and they are aware of all the issues. I am going to try to persuade my mum to increase the visits to 2 per day so that they can help dad when he’s most active and likely to go to the shop. I have contacted the gp about his meds, and asked Home Instead to support with that - so that’s under control.

I feel it’s time to look at using the power of attorney that they registered. But it’s so daunting.

So this is where I am. Mum is still in hospital. Dad is wandering about to the shops and taking the dog out for walks. I’m not supposed to go there under current covid rules, if I go I’d have to stay in mums bed as there aren’t any hotels open, I normally check into a premier inn. And if I went there the hospital isn’t allowing visitors. I can’t track down the LPA document. So I’m a bit stuck in terms of taking over their finances. I’m just feeling overwhelmed, worried, and guilty for being so far away.

I guess that there is nothing unusual in any of this. It’s actually a great relief to find a group of people who can understand.

I’ll post more focussed questions in the relevant boards but just felt the need to explain my situation.

To anyone that makes it through my very long post - thank you and I look forward to getting to know you.

Liz
Xx

2

Welcome to the forum, Liz. Sounds like you have a lot on your plate at the moment and I hope you’ll find the advice and support you’re looking for.

3

Hi Liz,

Welcome to the Forum. Hope you find it useful. So difficult doing long-distance caring. I did it for my mum for a number of years before eventually caving in and moving closer to her (but not in!!).

Does either parent have a diagnosed form of dementia? Just wondered as it is important to get the Power of Attorney activated beforehand. Was it registered or done through a solicitor? If registered, you should be able to search for it here:

Sounds as if parents will need more care going forward. Dependent on who is paying for the care, would be good to get this sorted before mum leaves hospital. I know it is difficult at a distance but have you considered a nursing home ultimately when their care needs increase, or even 24 hr support at home? As ever, all depends on who is paying for it.

Anyway, take a look around the Forum and if you have any questions just shout, there is normally someone around even if you just want to vent.

Take care,
Anne

4

Thank you both.

The LPA was registered so I’ll take a look at the link.

Neither of my parents have been diagnosed with dementia or any problems with mental capacity, this is all very new.

Until now mum has been the brains of the outfit and dad does the ‘doing’.

Thanks for being here

x

5

Hi Liz
I’m a long-distance carer too. I live in London but care for my mother (90) who lives in Scotland. I don’t really think of myself as a carer so much as I don’t do the personal, day-to-day stuff. I just do all the bills and finance and am a general “fixer” over the phone and visit every couple of months or so. I’m the only surviving child so it’s all down to me, and just unfortunate that I’m a day’s travel away.

Definitely try and get the Lasting Power of Attorney sorted out. Well worth it. I’m not clear whether there is already one in place which just needs reviving or whether this is something you need to start from scratch. It’s a slightly different document in Scotland but what I have for my mother is essentially the same. There is plenty of online advice, eg Age UK.

I have to say I haven’t found it particularly helpful as far as personal care is concerned. I find it still tends to be down to the individual medic/social worker as to whether they are willing to talk to you, whether you can wave an LPA at them or not. Some will, some won’t. Distance adds to the difficulties of building relationships with the professionals involved in care I’ve found.

However, as far as bills and finance are concerned it’s been an absolute godsend for me. It was a huge weight off my shoulders to know that all the bills were accounted for and I wasn’t going to discover at some point that the house insurance bill had lapsed weeks or months ago. Getting bank statements, utilities bills, pension letters, tax, etc etc rerouted to me has been hugely helpful.

I had the reverse situation to you – it was only after my father died that I realised how much he had been doing for Mum. The crunch came for us when the lawyer refused to deal with her as an executor of Dad’s will, which bounced us into getting Power of Attorney. Get it done sooner rather than later. As long as your is lawyer is satisfied that your parents can understand what it is they are being asked to sign, then a bit of memory loss isn’t an issue. There’s no advantage in depriving an elderly person of assistance from a loving daughter for the sake of form, and it will save a great deal of hassle and grief further down the line.

The hospital won’t discharge your mother from hospital without reviewing her home circumstances, however it would do no harm just to speak to the Staff Nurse and just make sure she knows that your mother is caring for your father and that he has special care needs. Your father sounds like an absolute sweetie by the way. I keep seeing his 5 tubs of butter.

Aargh! Feisty, independent mothers. They are a handful! Physically – for someone who is 90 – my mother is incredible. She needs a frame to get round now and she has carers coming in several times a day, but she’s been cooking her own meals up until very recently. Mentally, she is a bit more tricky. There are a couple of long-standing mental health issues and her memory and concentration are pretty shot. But, like your mother, she is great at putting on a good front and, on form, she is very funny and a fund of good anecdotes. Although these days, quite often Anecdote A skips to Anecdote B without warning, like a needle skipping tracks on a record. She hasn’t remembered my birthday for several years now and needs a bit of prompting to remember her grandchildren’s names, which is sad. Unfortunately, she also suffers badly with anxiety and she leans on me very heavily for emotional support. This takes the form of frequent, lengthy and intense phone calls. She has very little contact with anyone else, so I get the lot. This can be quite distressing when she’s on a downer and says she wants to die. If anything goes wrong – her carer is late, the fridge or the tv remote isn’t working – I get panicked, hysterical phone calls. She wants me to fix the problem NOW but trying to explain anything to her over the phone is a nightmare because she can’t follow a train of thought to the end and she has no focus, constantly interrupts and then goes off on tangents and I have to try and bring her back. It’s not always possible for me to fix things and she doesn’t understand this. She gets frustrated and is impatient, rude and quite aggressive with me. If this goes on multiple times over several days I end up so jumpy waiting for the phone to ring yet again I just have to unplug it for a while. My life would be a lot calmer if I could just go in and see for myself that, contrary to what she is shouting at me, the fridge is not broken, I’m not stupid, and it is worth checking the dial because she has accidentally turned it all the way round to 0. My phone bill during lockdown has been huge. There are a whole lot of other issues around money, medication and who she invites into her flat, but that’s for another time and place.

I go and visit for a few days every couple of months (pandemics permitting), but it’s very expensive and I’m not working now so I don’t know how I’m going to keep that up long term. It’s difficult not to feel inadequate. Wherever I am, I ought to be somewhere else. If I’m away, I’m being missed at home, if I’m at home I’m being neglectful. And other people do so much for her, that I can hardly complain.

I did wonder about moving for a while but, to be blunt, at Mum’s age it’s not sensible for us to uproot and move all the way across the country away from our children just for a few years. And my lovely husband has Parkinson’s and is showing some signs of memory loss too, so I wouldn’t put him through that anyway. My mother tends to soak up enough of my attention as it is.

Anyway, virtual hugs to you Liz. Take one day at a time. I hope things reach some sort of resolution and you get some peace of mind.