Caring from a very long distance

[OMEARA]

Omeara

My Mother too lived some distance away but nothing like you and also my sister lived locally so we knew she was always close by. It may not help but you can only do so much at a distance and once you have exhausted those avenues, remember you have a family that depends on you. It may too late and not an option but have you considered asking your Mother to move. She may not want to but its worth a discussion. I would also if you haven't, look at trying to get support from the continuing care agencies. If your Mum doesn't move although this sounds awful, if you can afford it I would consider a home sooner rather than later. I think in hindsight we concluded that a "very good care home" is better than live in carers once your Mum gets beyond a certain point. Good luck.

 

[stressed-in-oz]

Thanks again everyone for all your comments. There are three main options at the moment - mover her over to Australia (for various reasons I think this is a non-starter), we move back, or I start racking up some serious frequent flyer points and come back more often.

I'm giving serious thought at the moment to moving back, it would mean essentially that I have to give up Australia for good as it wouldn't be fair on the girls to up and move, only to have to come back again and make new friends probably when they're at school age. Plus if nothing else I don't want to do that either as I run my own company here and would mean having to close the business and start all over again at 40 in a country I thought I'd never live in again. So I need to get my head around that, I always had it in my head I'd bring the girls up here where they'd play loads of outdoor sports and get what I think is a better education out here, and a better general standard of life. It's not something I'm going to make a snap decision on, so for the time being it's all about managing it from a distance.

Although she seems to have deteriorated on the surface of it, the Dementia Service nurses seem to think it's more likely just anxiety related than a degradation, so they're fast tracking some CBT and other avenues. I have to say, all the help she's had so far has been first class. Maybe she lives in a lucky postcode.

I just want to get her started on the Aricept to see if that helps her memory any, and in turn relieves the anxiety about not being able to remember. Also, the nurse did bring up sheltered accom with her, which surprisingly she seemed open to. I'm not going to push it though, just see if she can convince herself she wants it first. If that were the case I'd feel a lot more comfortable about her situation.

As with many others on here, it's an impossible situation, and making decisions that will impact both my daughter's life immeasurably are ones you don't want to make lightly.

 

[samsmog]

Caring from a long distance

Hi Everyone
I am new to this site but finding it so helpful. Although I don't live quite as far away from my mum (250 miles) I am finding it so stressful not having her nearby. Last week I had 17 phone calls with her about a letter (a flyer) she had received about insurance. I kept telling her to rip it up but she kept forgetting and ringing me about it again and again. If she lived near me I'd be able to pop over and reassure her and remove the letter! My question to everyone is this - my mum is currently in a rental property (has been there for 50 years) and claims housing benefits. The social services / care agency / doctor all agree that it would be much better for mum now that she is deteriorating to be nearer me and my family. However, rentals are way higher where I live so her housing benefit budget would not cover anything other than a studio flat. So I looked into the idea of raising money from my own home to buy a flat (which ironically works out cheaper). I have found a fab over 55's one up the road from me. However, housing department are adamant that they wont pay benefit to mum to pay rent if a family member is the owner of the property. Has anyone managed to find a way around this? Sadly the way mum is going now the alternative will be to move her straight into a care home which is such a shame as physically she is as fit as a fiddle and like many people I hear about on this site - fiercely independent in her own mind. I'd be grateful to hear of any suggestions.

Finally, to say to the lady in OZ, my mum's social worker tells me not to feel guilty at all as mum is perfectly content and happy in her world - its me who sees the poor hygiene, lack of eating etc, not her and so not to feel bad all the time about not being able to help so much...

 

[Paul60]

Hi Alan
I live in the Perth area, with my immediate family in locations around Australia, so I understand your situation. My Mother went into a care home back in 2009.

I have been back twice since. One of the things we did was to ask the home if they had WiFi or a computer with Skype. Can also use an iPad and FaceTime. Whilst my Mother could partially communicate this helped me keep in touch with her (staff assisted in setting link) and also with the home I could talk to senior staff if needed for reviews etc.

When her communication failed it was still good to see the occasional smile when she recognised something. Deteriation has now taken her beyond this.

I went through the guilt trip but there is a realisation that you could live 500meters down the road and still be in the same situation.

If you have POA you can also set up Internet banking with some of the UK banks.

Hope this helps in some way

Regards
Paul

Hi,

Like others on here, I am new to this forum and thought I might introduce myself and see if anyone else has the same situation as me.

My mum has recently been diagnosed with Alzheimer’s after a couple of years of noticeable memory issues. The diagnosis took a while as the MRI showed no signs of AD, and also she has always suffered with severe anxiety which we’ve blamed the memory issues on. Anyway, the diagnosis is in now and we have to live with it, and the good thing is she’s on medication now which might improve things a bit.

However the problem is that she has lived on her own for the past 20 years or so (she’s 69 now), and is fiercely independent. I am an only child, and I have lived in Australia now for over 13 years and am married with a young family here (3 and 1). Therefore this has made a normally stressful situation that much harder, as I am trying to manage the fallout from the diagnosis from the other side of the world. Although I obviously want to do whatever I can to make mum’s situation better, I have mouths to feed here and have to keep the home fires burning too.

I actually came back to the UK last week to help put things in place for her (paid home help, met our (very lovely) local AS support worker, finances, accompanying her to the diagnosis etc) which helped her immensely, but I feel incredibly guilty that I can’t be there for her full time, and was very tough indeed leaving her on her own again. Luckily before all this happened we got full PoA sorted with her full blessing, and even now she’s totally happy to leave any decisions in my hands about, well, pretty much anything. I just hope this lasts.

Does anyone have any experience of this kind of situation? I can’t help feeling that this year she’s gone downhill quite considerably (I understand this is more common in less elderly patients). It’s the most helpless feeling in the world knowing you can’t be there to help her the way she protected me when I was young. Awful.

Alan

 

[sistermillicent]

I would move heaven and earth to get your mum over to Australia. Certainly the journey would be hard but selling up for her here could be done by an agent.
I really believe in circumstance like these the carer should call the shots, it's like if you are rescuing someone from the sea, you have to be firmly attached to a helicopter or a ship otherwise you will drown with them.
Aricept won't improve memory it will just slow down the progression of the illness.

 

[starryuk]

I'm giving serious thought at the moment to moving back, it would mean essentially that I have to give up Australia for good as it wouldn't be fair on the girls to up and move, only to have to come back again and make new friends probably when they're at school age. Plus if nothing else I don't want to do that either as I run my own company here and would mean having to close the business and start all over again at 40 in a country I thought I'd never live in again. So I need to get my head around that, I always had it in my head I'd bring the girls up here where they'd play loads of outdoor sports and get what I think is a better education out here, and a better general standard of life. It's not something I'm going to make a snap decision on, so for the time being it's all about managing it from a distance

Reading this, it seems that you feel, quite rightly imho, that your girls' lives have to come first. They have many years ahead of them and there is such opportunity for you and them in the future in Australia. Please don't give up and come back.

just my thoughts of course
xx

 

[Noorza]

I just wanted to say that you can be on the doorstep as I am but when dementia temper sets in you might as well be 1000 miles away. I am currently actively avoiding dementia temper for my own sanity at the moment.

 

[Nanak]

I understand more so how you are feeling although my situation was a bit different. I live in Australia but my sister and brother and Stepfather were there to care for Mum when AD was diagnosed.
Over three years I went back to the Uk about 5 times. I felt bad that my sister (in the main) was dealing with the fallout of my Stepfather looking after my Mum.
I do understand the guilt and the fact that she is your Mum but please, think long and hard before moving yourselves and your children back to the UK. As much as I missed my family (and continue to do so) the decision to move here 23 years ago was the right one.
Your children will have a better life here, with many more opportunities.
However, your Mum is important too. I hope you can continue to get care for her. I'm presuming you don't have family over there?

Nanak (Kim)

 

[julesbol]

Long Distance caring

Hi,

Like others on here, I am new to this forum and thought I might introduce myself and see if anyone else has the same situation as me.

My mum has recently been diagnosed with Alzheimer’s after a couple of years of noticeable memory issues. The diagnosis took a while as the MRI showed no signs of AD, and also she has always suffered with severe anxiety which we’ve blamed the memory issues on. Anyway, the diagnosis is in now and we have to live with it, and the good thing is she’s on medication now which might improve things a bit.

However the problem is that she has lived on her own for the past 20 years or so (she’s 69 now), and is fiercely independent. I am an only child, and I have lived in Australia now for over 13 years and am married with a young family here (3 and 1). Therefore this has made a normally stressful situation that much harder, as I am trying to manage the fallout from the diagnosis from the other side of the world. Although I obviously want to do whatever I can to make mum’s situation better, I have mouths to feed here and have to keep the home fires burning too.

I actually came back to the UK last week to help put things in place for her (paid home help, met our (very lovely) local AS support worker, finances, accompanying her to the diagnosis etc) which helped her immensely, but I feel incredibly guilty that I can’t be there for her full time, and was very tough indeed leaving her on her own again. Luckily before all this happened we got full PoA sorted with her full blessing, and even now she’s totally happy to leave any decisions in my hands about, well, pretty much anything. I just hope this lasts.

Does anyone have any experience of this kind of situation? I can’t help feeling that this year she’s gone downhill quite considerably (I understand this is more common in less elderly patients). It’s the most helpless feeling in the world knowing you can’t be there to help her the way she protected me when I was young. Awful.

Alan

We live in Sweden whilst Mum and Dad live in the UK. Although our daughter visits her Grandparents, the biggest problems for us is helping them to make choices which is difficult enough even if we are there. We also feel guilty about not being there and also that our daughter has to pick up the pieces. We have tried to explain to Mum and Dad that we still need to work, and have suggested that they come and live with us but to no avail. We can offer no real advise as we are in a similar situation, but we can empathise with your situation. On the bottom line, if we knew that the services were in place to step in automatically if they needed help, it would be some sort of consolation, but we and our daughter are told that "nothing can be done unless they wish for it to be done". When neither of them can remember conversations or decisions that are discussed how can they be expected to express their wishes? They are both desperately clinging on to any vestige of independence that they have, and we can understand that, but in effect they are caring for each other haphazardly. If "guilt" was available as a university degree, we would both have passed with flying colours.

 

[inthemiddle]

Thanks again everyone for all your comments. There are three main options at the moment - mover her over to Australia (for various reasons I think this is a non-starter), we move back, or I start racking up some serious frequent flyer points and come back more often.

I'm giving serious thought at the moment to moving back, it would mean essentially that I have to give up Australia for good as it wouldn't be fair on the girls to up and move, only to have to come back again and make new friends probably when they're at school age. Plus if nothing else I don't want to do that either as I run my own company here and would mean having to close the business and start all over again at 40 in a country I thought I'd never live in again. So I need to get my head around that, I always had it in my head I'd bring the girls up here where they'd play loads of outdoor sports and get what I think is a better education out here, and a better general standard of life. It's not something I'm going to make a snap decision on, so for the time being it's all about managing it from a distance.

Although she seems to have deteriorated on the surface of it, the Dementia Service nurses seem to think it's more likely just anxiety related than a degradation, so they're fast tracking some CBT and other avenues. I have to say, all the help she's had so far has been first class. Maybe she lives in a lucky postcode.

I just want to get her started on the Aricept to see if that helps her memory any, and in turn relieves the anxiety about not being able to remember. Also, the nurse did bring up sheltered accom with her, which surprisingly she seemed open to. I'm not going to push it though, just see if she can convince herself she wants it first. If that were the case I'd feel a lot more comfortable about her situation.

As with many others on here, it's an impossible situation, and making decisions that will impact both my daughter's life immeasurably are ones you don't want to make lightly.

I do understand your concerns about being so far away, but PLEASE don't let your feelings lead you into decisions which could have severe consequences for yourself and your family. Having a business and a good life for your daughters is massively important for your own mental health - moving back here would be immensely traumatic for you all, especially the way that things are in the UK economically at the moment. Carers must care for themselves, you know! You are obviously keeping on top of the situation from afar and say she is receiving good care so be grateful for that and don't let worry/guilt lead you to make major changes to your family life.

 

[KTAnneB]

Caring from a distance

Hello Alan,
I live in Melbourne with my husband & three boys (10 - 17 years) and mum & dad are at home in UK. Dad started showing signs of dementia when they were visiting us at Christmas 2012; once back home his dementia deteriorated quite quickly, and he is now at the point where mum often has to remind him how to eat, and she has to help him with the basic daily activities of life. I've been here in Australia for 15 years and it is incredibly hard to be so far away from family who are ill when I want to be able to help them physically and emotionally. I was a registered nurse in the UK so I know the ins & outs of the NHS & what good care can be like.
I went back to the UK in March this year, to help mum set up various systems and help, some of which have worked, some of which haven't, but I must say that the majority of health care professionals I met on that trip were amazing & they are all happy to talk with me if I feel the need.
I do have a brother & sister in law who live about a 4 hour drive away from mum & dad; they do what they can and the best thing is they bought me my ticket to go home in March!
I am lucky that dad has mum to look after him, but I know that mum has her health issues too (dad is 87, mum is 81) and that she can't care for him forever. They do have carers going in every couple of days for 2 - 3 hours as well as District Nurses (dad has a pressure sore on his heel - he had a colostomy formed 4 years ago due to cancer & ever since then he sleeps on his back & literally does not move off his back in his sleep. Since he's had dementia he can sleep for up to 14 hours at a time - a long time & easy to develop a pressure sore) & support from the local Mental Health Team. An Alzheimers Society supporter also visits. So I know they have lots of help & support, even though mum doesn't necessarily want it all but she realises she has to have it for her own sake.
For me, being so far away is horrible. I have learnt how not to think - like not allowing myself to think "if I was there I could be doing this or that...." and "I feel awful for not being there". I found I was getting depressed with those thoughts and I had to change how I looked at it all.
My darling husband has suggested ways of trying to go back to the UK, if only for a relatively short period of time, but, like you Alan, we have children whose lives and friends are here. Our lives are here. We made that choice several years ago and if we were to go back to the UK then realistically we can only help for a few years at the most; mum and dad will not live forever!
Guilt always gnaws away at the back of my head but I push it away, I have learnt it is not useful. When I feel guilty I do something proactive, like make a phone call to mum or send a letter or some photographs. When I talk with dad he often has no idea who I am these days but he still knows the older two boys & my husband! I don't do Skype, mum struggles with the technology & I can't bear to see my mum without being able to give her a cuddle!
So yes, it is very hard. I know that even if it was an option for them to come here that dad would not cope with the flight - when they returned home after their last visit here dad was very hard to deal with on the flight despite sedatives (which did not work) and as a result I don't think he'd be able to get travel insurance now. I actually wonder if it was the flight from UK to here that started the whole dementia thing off but that may well be a weird idea!
Sorry, Alan, I hoped to help you but I seem to have told more of my story than I intended. I always thought I'd be able to look after mum & dad; before we came to Australia my husband (who is Australian) promised that I could always go home if I needed to but with work, children and other commitments it's not so straightforward these days!
Be kind to yourself, keep working at the connections you have built (the AS workers are amazing) and just do the best you can and what is right for you and your family. I remind myself every day why we chose to live here in Australia and I know my mum and dad would never have wanted me to change my mind because of them.
Just a thought - Your mum protected you when you were young and she helped you grow into a strong, caring, supportive (I'm sure there are more adjectives I could use...!!!) man. Part of that is letting you go so you can do the same for your young children.
Enough of my rambling! Best of luck.

 

[stressed-in-oz]

It's a tricky decision alright about moving back. On the one hand I'd be closer to mum (but realistically for how long and of what tangible use), and my wife's Irish so I don't think I'd get much pushback there given she has a very big and strong family connection, but as everyone says, it's about setting the girls up for their life. Every day at the moment I have a different perspective on how good an idea it is, so best not make any decisions just yet.

I do use FaceTime with her, I bought her an iPad about a year ago and if I'm honest that's where many of my suspicions about her memory started, she used to be so good with technology for her age, she just couldn't grasp the iPad at all. Now I can see why. But she knows how to receive FaceTime calls on it and the girls love it because they can wander round the house with my phone showing her things.

I think I just need to transition my life a bit to cater for her new developments. Not sure what to do with the big increase in phone calls, most in the middle of my night. She also persists in ringing my work number even though I told her I'm essentially only there when she's asleep, but I suppose it beats my mobile going off all hours of the night. It's only been a couple of weeks since the official diagnosis so hopefully she might settle into a pattern soon. Really not looking forward to when some of the later symptoms like dementia temper set in.

But at least with all your stories it makes me realise that this is a very common issue. Given there's sections in here for all sorts of scenarios, maybe one on caring from a distance might be a useful heading? Just a thought. We could all use it to share our concerns and stories.

Cheers again

Alan

 

[KTAnneB]

How are things going Alan? Maybe the phone calls have calmed down a bit. One thing I've learnt with dementia is that what happens today may not be happening tomorrow/next week.
I think your suggestion of a long distance carers forum is a good idea. Being a long way away does make a difference to the 'carer'.
Hope all is well.