Caring from a very long distance

[stressed-in-oz]

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

 

[zeeeb]

I don't know what to say, but to offload a bit of free psychology for you. This is what my psychologist told me:

Guilt, is a learned behaviour, it's not a real emotion. Not sure if it helps at all, but I guess feeling guilty is pretty much a pointless waste of energy and time.

It must be really hard to be far away and unable to be of much practical help. I guess some of the most important things are the little things. All you can do is keep in regular contact with her, and if she has a social worker, keep in regular contact with them so between you all, you can try and figure it out.

 

[1954]

Hi,

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

Hi and I am sorry you have had the need to find this forum. But welcome

I don't pretend to be in your situation as I have brought MIL to live with us. However, you do seemed to have done a lot for your Mum. Don't be too hard on yourself. You actually came over to here to do the best you could for her in your circumstances

I think you are very loving and kind to her. As has been suggested keep in contact with her (I am sure you're doing that anyway) and those involved with her care

 

[stressed-in-oz]

Hi,

Thanks for your words of encouragement. I'm actually less bothered about how I feel, I'll just have to get used to that - more bothered about the physical feeling of helplessness, and the risk that puts my mum at. Even since I came back to Sydney this week, I've noticed she seems to have even less awareness of recent events, like she lives in some trance or something. I can't imagine what it must feel like to be her right now.

The good thing is that right now she's open to receiving help, be that home help, or increased social activities, I just worry about when she declines further that I won't be on hand to sort things out. I ring often, and that's increasing by the week to the point its now more or less daily. I'd imagine this will increase even more before long.

She doesn't have a huge amount of friends to call upon locally, and I'm worried that if she has a 'turn' she might alienate them with saying something out of character due to the illness.

Like I say it's all a bit stressful, but looking at other people's experiences on here, pretty minor in the overall scheme of things. I just need to see how other people in similar circumstances have managed, and just try my best (and get back to the UK as much as I can).

 

[1954]

I have read posts from other who are caring from other countries so I am sure others will come on board soon with other ideas

 

[Jaysbird]

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

Alan, I totally sympathise as I am in the same boat. My mother was diagnosed two and a half years ago and it wasn't until I attended a routine clinic appointment with her by chance that I found out. Apparently she had been told prior to this of the diagnosis but it seemed as much of a shock to her as to me.

My husband and I were already in the process of moving to Melbourne and it was with heavy hearts that we continued to move here permanently. I have two brothers who were both living not too far from Mum and whilst neither were as proactive as me in her life, they promised to do as much as possible.

One has now since moved here to Australia leaving my remaining brother with quite a heavy burden. He has his own family to care for, a busy pressurised job and a part time college course. Mum of course does not understand the concept of time and expects everything done immediately so he is not the most popular person most of the time.

I notice each time I speak to mum on the phone how much she is deteriorating. Conversations are very one sided, she talks I listen but struggle to understand just what she is talking about. Mum is talking of moving out of her home into somewhere smaller. She did this four months ago. Was determined to move and asked me to go home to sort it. I dropped everything and flew home. We looked at two places and the next minute she is being admitted into hospital with involuntary leg jitters, blood pressure through the roof and very confused. The nursing staff could find no problems with her. The consultant advised us that he felt it was because deep down she didn't want to move out. So we made her stay put.

Now she is talking of moving again but where do you put your mother who is physically fine, strong heart, independent, does her own washing, cooking and cleaning but has this evil illness. She is 77 - too young and fit for a residential care home. We did look at some but the degree of care was far higher than she needs.

My ideal plan would be to bring her to Australia to live with me but I am the only one out of the 3 siblings with permanent residency so balance of family fails for a visa and I suspect they would not grant it based on her diagnosis.

My heart goes out to you. I have no advice as I am struggling to find solutions but I just wanted to say you are not alone.

Su

 

[limafoxtrot]

Hi,

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).

Alan

Hi Alan, welcome to TP.

I too am a long distance carer, although not as far as you, I'm around 7 hours flight away from the UK.
Like you, I phone Mum everyday at least once but more recently 2 or 3 times. Mum is fiercely independent, goes out everyday although either doesn't remember where she's been & more recently, cant remember going out, doesn't like people helping, although now has carers going in 3 times a week.
I must admit, I find it so difficult as I'm the only child, although I do have a Son & Daughter in the UK. I spend a lot of my time on the phone trying to sort things out for Mum, i just want the best fornher.
It's good you have POA, I do too & this should come in handy when you need to speak to someone about your Mum. My Mum also signed a form at her GP surgery, to allow me to speak to them on her behalf, maybe this is also something you can do.

Your are doing an absolute brilliant job, just keep doing what you're doing now by letting your Mum know you are there for her.

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

I feel very much the same as you and the guilt is so overwhelming

Lima x

 

[Mamsgirl]

I think your Mum's getting first class care SiOz, but guilt seems to be hardwired into carers whether we're in the next room or a hemisphere away. Are you using skype to talk? Being able to see things for yourself might be helpful in the time to come, and give you an idea of how she's faring physically (my Mum describes everything in great detail, often exaggerated, where my late step-father never complained about his many very serious health problems). Good luck, you're doing a great job.

 

[limafoxtrot]

Now she is talking of moving again but where do you put your mother who is physically fine, strong heart, independent, does her own washing, cooking and cleaning but has this evil illness. She is 77 - too young and fit for a residential care home. We did look at some but the degree of care was far higher than she needs.

Su

Hi Su & welcome to TP

Not sure if you have this in Australia but have you had a look at Assisted living homes & extra care housing. It's an alternative to residential care for those who value their independence. Your Mum can still have her independence in her own flat but with the added security of 24 hour care, which is usually catered to individual needs. In fact we are looking at this for Mum. We did go to see a place last time we were in the UK in June, Mum did say she liked it & is now on the waiting list, unfortunately she now doesn't remember going to see it

Lima x

 

[stressed-in-oz]

Thanks for all your replies - makes me realise that this is a much more common problem.

Su - I totally sympathise with your situation there - luckily I haven't had any 'drop everything and come home' moments yet, but I'm sure there will be at some point. I'm just hoping the recently prescribed drugs start kicking in and she regains a bit of memory retention and awareness. But I agree 77 is no age for a physically fit person to be in a care home. That said from what I can see in oz they seem to be much better equipped with 'halfway house' retirement villages, especially in Sydney. If your mum is receptive to a move out here, that could be a great option. Also would there be no way of your brother applying for PR just to get the balance of siblings over the line? There are some very good migration consultants that can work wonders on getting the points required for that kind of thing.

Lima - thanks for your kind words. I know I'm doing the best I can, just with the 9 hours time difference that only makes me available late at night and first thing in the morning UK time. And I already have agreements in place with all of her doctors, specialists and carers that I can talk fully about everything with them. We do this with every new one she sees. Same with the bank, we have an old family friend that works there so I have an 'in' there.

Mamsgirl - yes we do Facetime, although not as often as I'd like. We try on weekends to get the kids on there so she can see them - it makes her day. Since coming back though I'm going to try a lot more, I realise now how much it means to her. I think I only got a handle on her loneliness of me being over here when I was back last week, she hid it far too well for far too long. Hence the sudden feelings of guilt.

Generally though it seems to be a bit more positive today, although she's still all over the shop, the Citalopram med increase seems to be taking hold and keeping the anxiety under control, which means we can start on the Aricept hopefully next week. All fingers and toes crossed that will go well and she can regain a little bit of order to her life - she can't remember stuff from one sentence to the next at the moment.

Thanks again everyone for your replies, really means a lot.

cheers

Alan

 

[starryuk]

I do so sympathise with you all, having been through it the other way round. Mum chose to sell up and go and live in Australia in a retirement village (without residency so entirely self funding..no medicare etc) Journeys to visit became longer and more frequent as the dementia developed. Dealing with time differences and all the little problems were so difficult. I brought her home eventually after 7 wonderful years there.

Now I find more problems! POA in Oz not valid here, difficulty selling her unit in Oz and no attendance allowance until she has been resident here for 2 years (although she has always paid UK income tax and receives UK govt pension) to name just a few niggles. Still, at least I can keep an eye on her in her CH here.

 

[Jaysbird]

Mum chose to sell up and go and live in Australia in a retirement village (without residency so entirely self funding..no medicare etc).

Hi StarryUK

How did your mum move to Australia without residency? I would love to bring my mum over here but didnt think there was a way without a permanant residency visa. I would happily fund all her needs

 

[Jaysbird]

Hi Su & welcome to TP

Not sure if you have this in Australia but have you had a look at Assisted living homes & extra care housing. It's an alternative to residential care for those who value their independence. Your Mum can still have her independence in her own flat but with the added security of 24 hour care, which is usually catered to individual needs. In fact we are looking at this for Mum. We did go to see a place last time we were in the UK in June, Mum did say she liked it & is now on the waiting list, unfortunately she now doesn't remember going to see it

Lima x

Thanks Lima, we were not aware of this type of housing. Have made enquiries with the local authority and there is one near my mum for us to check out

 

[Carer_london]

Long distance carer

Hello there

Firstly, I disagree with the comments re guilt. Experiencing guilt makes us human. If we didn't experience guilt, we would be a psychopath or sociopath.

Secondly, whilst some contributors are offering empathy or sympathy - which is understandable and laudable - what's needed is action.

I speak from much experience here. I have been an unpaid carer for my Mum pretty much since childhood (I'm now 49). When I moved to London some 17 years ago, she was still based in the north-east of England. I was travelling up there every 4 weeks, then 3 weeks, then 2 weeks, then 10 days. I was worn out and, although I have other siblings, there was only me providing care. In short, due to this ongoing relentless situation, I ended up going into crisis which is an experience that I wouldn't wish on my worst enemy.

And, although fragile, I made a decision to 'kidnap' my Mum (by this time Dementia had well and truly set in, she was severely depressed, etc). By this stage, she'd lived on her own for c30 years which I'm convinced exacerbated the problem.

Anyway, although she kept saying that she was 'alright' I know my MUm well enough to know that, actually, she wanted to be rescued. So I brought her to live with me temporarily in London so giving me breathing space to look into options for ongoing care.

Because of work etc (and I have to provide for myself now as well as in the future), I was unable to move back to the north east of England).

Anyway, my Mum now lives 5 minutes walk from me in sheltered accommodation & attends a day centre 4 days per week (they're superb there). On the other days, I take her out for a coffee to see the sights etc. So she's showered every day, in clean clothes, socialising and getting fresh air. She's unrecognisable from the woman that I have dealt with for 3/4s of her life.

So, sorry if this might come across as harsh, but you need to set your expectation level that (a) the situation will get worse; (b) the likelihood is that your Mother could live for many years yet will this illness.

So I would encourage you to do a number of things. Contact your Mother's GP. Remember that a GP is a gateway to further services. If it hasn't already happened, the GP can make a referral to Social Services to make an assessment.

However, what I've learned though is that, whilst medical and social services support can be excellent, it still comes down the unpaid carer to manage, supervise, just basically sort things out. Bearing in mind that the key objective is to keep your Mum safe, there's a number of different possible outcomes (a) your Mum could continue to live in her own home with a support package. And, as technology is fabulous now, it's possible to get sensors that can detect if your Mum wanders, has fallen or whatever; (b) if this doesn't work, then consider a care or nursing home (the GP or social services can advise you on what is appropriate); (c) You all move back to the UK to support your Mum (she living in her own home or in a home); (d) You move your Mum so that she's near you in Australia. Option (d) worked for me but it's a very individual decision. Each situation is different.

You might also like to touch base with the charity Carers Trust who are a superb resource for unpaid carers. Your Mum's local branch may be to advise you / offer support. Alternatively there must be a similar organisation in Australia.

Eg as well as practical support from the charity, I created a carers' group that meets on the 1st mon of the month in in a local hotel (18:00 for 18:30 until 20:00 hours). We meet in the lobby so there's no room hire charge (we pay for our own coffees). We divvy up the time so that, if 6 are attending, we get 15 minutes to 'share'. Just the fact that we're talking and listening to others in the group is massively therapeutic. I get much from it & know that the others do too.

You are doing an excellent job and your Mum is very lucky to have you (ie there are many people in your Mum's situation who have no one looking out for them).

I wish you luck for the future.

Take care

 

[starryuk]

How did your mum move to Australia without residency? I would love to bring my mum over here but didnt think there was a way without a permanant residency visa. I would happily fund all her needs

I am sorry to have to tell you, but mum got in on a temporary retirement visa. That kind of visa was ended in July 2005? 2006? Mum was initially granted 4 years which was then renewed for another 10 years. But still not allowed to get permanent residency.

Have you scoured the Australian Department of Immigration site for all types of visa? That is how we found out about the retirement visa. I am going to have a look.

10 minutes later...
What about the 'remaining relative' visa? http://www.immi.gov.au/media/fact-sheets/32other.htm

An applicant and their partner (if any) must not have any near relative, other than a near relative who is usually resident in Australia and is an Australian citizen, Australian permanent resident or an eligible New Zealand citizen. A near relative is a parent, sibling, non-dependent child or step equivalents.

 

[starryuk]

sorry mistake

 

[Jaysbird]

Have you scoured the Australian Department of Immigration site for all types of visa?

Yep, have dug deep on the immi website. Remaining relative does not work for us as one of my brothers is still in the UK. He desperately wants to move here but even then, he would only be on a temporary visa (too old for PR) so we would not pass the requirements unless he puts mum down as a dependent relative. Thats our next research path

 

[channa]

Caring from far away

I live in Israel and am Jewish. As Jews, we are raised that the most important thing in life is respecting your parents.... However, I wanted to live in Israel, so I moved away from my parents. I live in a neighbourhood where most people are in the same situation. Luckily, my parents followed me. However, my sister, who still lives in Holland has the same guild feeling as you have. My friends in my neighbourhood travel a lot to their parents in order to take care of them. We all live in two worlds. What a lot of people did, was to try to convince their parents to move to Israel. Try not to feel too guilty. You also have your own life. Try to find good loving caregivers for your mother and hug your own children more.
I wish you luck,

Channa

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

 

[jeannius]

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

As you have POA have you spoken to your mother about having social services involved. Every older person is entitled to an assessment of needs. If she has deteriorated then maybe this needs to happen and her future considered for other forms of care and possibly living in care home as a last drastic measure. If you are the only sibling you don't say if there is other family in the UK or whether friends or neighbours can help? Most older folk are firecly independent wherever anyone lives and it takes time to get them on side. usually doctors are a favourite with older people and will listen to them. I suggest speak with social services about anything they can do. There is also a befriender scheme that Age Concern run. she could have a live in carer. There are all sorts of help around but please you cannot do anything from Australia except find out. Email is so useful in this situation to ascertain what is available to your mum in her area. Stop feeling guilty. Useless emotion. If you mum wasn't too confused you could get her a tablet with Skype on it.

 

[starryuk]

Yep, have dug deep on the immi website. Remaining relative does not work for us as one of my brothers is still in the UK. He desperately wants to move here but even then, he would only be on a temporary visa (too old for PR) so we would not pass the requirements unless he puts mum down as a dependent relative. Thats our next research path

Oh Jaysbird, I was hopeful for a minute! Keep on thinking though, I hope you can find a way. So difficult.
xx