Distance and Alzheimers

[Nicky Noo]

Morning all this is my first time using the forum - you all sounds like such a nice friendly bunch and there is so much wonderful information on the website I am just working my way through it all.

My father has been recently diagnosed and my mother is really struggling to cope with him. He also suffers from many other medical conditions which does not help. He seems to fall over every couple of days, refuses to eat, wash, drink, has bad nightmares which keep mum awake at night and is generally rude and nasty to her. My biggest problem is that my parents live in Essex and I live in Worcestershire - what I would like to know is there anybody else in my situation and how do they cope with the distance issue and the guilt of living so far away.

Thank you all for taking the time to read this

Nicky

 

[Skye]

Hi Nicky Noo

Welcome to TP. I can't help with the distance problem, but I do relate to your Mum's situation, having difficulty caring for your Dad.

Have they been assessed by SS to make sure thay are getting all the help that is available? Your Mum is entitled to her own assessment as primary carer.

Are you in contact with your Mum's local branch of Alzheimer's Society? They will help to make sure she gets the help she needs.

Don't feel guilty, you must lead your own life. The best thing you can do is to make sure that a good support network is set up for your Mum.

Keep posting, and let us know how you get on.

Love

 

[Lucille]

Hi Nicky

Welcome to TP. Sorry to hear about your dad.

I live a fair distance from my mum, i.e. it's do-able in a day but is completely knackering. I have the face of a 140 year old woman but other than that, hey, it's a breeze! Seriously, I guess the problems carers like us have is that we can't lend immediacy to things. I've found I have to juggle hospital and doctors appointments around travelling distances. I try and get them for a Monday or a Friday and that way I can tag it on to the weekend. Mid-week appointments are obviously a nightmare and to be avoided at all costs, although not always possible if a particular clinic is on a Wednesday at 9.30am!!

Emotionally ... that's a tricky one. I guess we are no different to anyone else on TP. This disease leaves everyone feeling like collateral damage. I suppose if you are on the doorstep or living with someone then you are more involved with the care which, I imagine - and from what I've heard here - is very draining. On the flipside, living so far away, everything seems twice as bad. I find my brain runs away with me ... especially if mum isn't in when the carers have been. Where is she? Who is she with? When she does eventually arrive home, it's no use asking her because she can't remember, or she lies. I've managed to get to know a lot of people near my mum, neighbours and the like and have had to resort to calling them, or, checking with the chemist and getting him to call me about something once I realised mum's judgement was completely off the radar. I also keep in regular contact with the CPN, the carers, the GP and the social services. Perhaps if you can establish some relationships jointly with your mum then the onus won't be on her to do everything (or for her to feel that she has to do everything) also, two heads are better than one and can ask more questions if one of you is feeling completely stressed out.

I go through phases where I feel as guilty as hell. But I think we all do, irrespective of distance travelled. I cry (hence bags under the eyes which are more like suitcases, packed and ready to go). The top and bottom of it is, that if you lived on the doorstep, you'd still think you were not doing enough. But at the end of the day, you have a life too and you should live it. (I try in between reaching for the concealer!). You'll feel guilty and all sorts of other emotions. But this disease doesn't care about distance or anything else really. So do what you can, when you can. Visit here for support, whenever you or your mum feel you need it.

Best wishes.

 

[Nicky Noo]

Distance - thanks

Hi Lucille

Thank you so much for your support - its just nice to know that other people out there feel the same and having read some of the responses today I feel like I have been given a big massive hug - lets hope I sleep tonight!

One of the best things you have given me is about building up a rapport with some local people - I am on first name terms with the neighbours which helps but I guess we need to speak to others ie. in the Dr's and chemist etc.

Once again thank you for taking the time to help ease my burden.

Hope to speak again

Love Nicky x

 

[Nicky Noo]

Hi Hazel

Thank you so much for taking the time to reply.

Really appreciate the advise about mum being entitled to her own assessment as Primary Carer - we did not know that so I will look into that with the Social Worker - we are waiting for an appointment and hope it will be in next week or two.

Feel so much better, had some really nice responses from the forum today, feel like I have been given a big hug and its just nice to know that there are others out there who feel the same.

Will keep you posted.

Love Nicky x

 

[kindheart]

Hi nicky

Just to let you know that I understand the trying aspect of caring from a distance.

before mum came to live with me ( I moved from 137 miles back to London to care for mum).

I travelled every weekend, had a full time job and like you had to organise, doctors appointment, social worker etc etc either on a monday or friday.

I travelled 350 odd miles every week and the journey could take up to 8 hours (round trip) depending on traffic on the motorways, not to mention the cost in petrol.

All a very big strain. Thinking of you

 

[Lucille]

Hi Kindheart

I agree with you about the strain of the journey. Initially, I didn't mind trying to cope with my mum's illness but I have found over the last few months that all the travelling is starting to wear me down. People 'helpfully' suggest moving mum nearer to me, but she is early stages and is still able to go out. She knows no-one where I live and it would mean I give up my job just to 'babysit' her all day. Nah ... I don't think so! The driving is a real drag, isn't it. I did try to teach myself German, but I couldn't concentrate on the motorway and all those gutteral pronunciations!

 

[Gill W]

I was so glad to read the responses to this thread.

Mum (64) & I care for my Gran, who lives 25 miles away from us. When Gran was initially diagnosed in 2005, we were travelling every day to care for her & ensure everything was as it should be. It was mainly to satisfy ourselves that Gran hadn't gone on a walkabout for 4 hours again, (which was what set mum listening to me that she could have Alzheimers).

Doing 50 miles a day 7 days a week was starting to take its toll on mum & me. I am a single parent of 2 boys & have only between 9am & 3pm to help her. She was soon exhausted & both our lives felt like one long treadmill. My mum's a widow so has no one at home to drain down on.

This week I have insisted that Mum take a break for a couple of days & she was distraught. The feelings of guilt that she has for not being able to do the everyday thing was killing her, not being there for just a couple of days nearly made her vomit! But her own mind was starting to fall to pieces with the pressure she was under. So your distance may well prove beneficial one day in helping your mum to think straight.

Don't rip yourself up that you're not closer. Life is life, & you are where you are because all was well before now. If we could all predict what life will throw at us in later years, I'm sure we'd all be living on one another's doorsteps for the duration of our lives.

Be there when you can. When you can't, be on the end of the phone for your mum to drain down on. That can mean so much to someone who's just about climbing the walls with frustration.


Best of luck with things, and oh, keep telling BOTH your parents that you love them. That word can bridge any distance.