Coping with the stress of mum's dementia from 300 miles away

Boromir

Registered User
Jan 25, 2018
14
0
Autumn16, thanks for the reply! It's a curious thing how different people respond to these issues. My Dad has never been that much bothered by the variety of different faces that used to show up back when he still had day-care visitors, he just seemed grateful for the company, which made it all the more a shame that they could barely stay more than 15 mins each time. One thing I did was setup a whiteboard with name reminders of key people and this certainly helped, one would see him looking at it to remind him of who's who. A year ago I talked with his GP and we came up with the idea of a mugshots board of relevant people, an even more effective way of being able to match names to faces; the GP thought it was a grand idea, and the SS boss agreed, but it just never got off the ground (no idea why; perhaps it would work better if it was something I organised and just made it voluntary). I'll revisit this assuming he does return home.

I know my mother though would have found not being able to remember names & suchlike much more annoying, ditto being unable to manage finances (indeed that's what happened way back, but I didn't know about it at the time; a lot of unnecessary clothing and other items were bought from catalogues, most never used; now I have the task of selling them off). As you say, everyone is different.

I'm glad your Mum is in a safe environment now, that must have been a relief to observe that she was no longer scared. I think my Dad was too but didn't want to admit it, he'd put on a brave face, etc.

While he is recovering and regaining strength in a care home, I have employed a private therapist to visit him weekly, at present more as a friendly face and someone to talk to in general rather than any actual therapy (especially bereavement counseling, this has undoubtedly been an issue for a long time since my Mum passed away three years ago), that can wait until later when he's back home and strong enough, and in the meantime the therapist can get to know my Dad, build up a level of trust, etc., and he's also very good at coming up with ideas and activities, things I wouldn't think of, eg. most recently that of taking in an Airfix kit and helping my Dad put it together (he used to be an engineer), which of course had to be risk assessed and all that, but the care home said it would be ok. I also figured it may be easier for him to talk to someone who isn't family about the difficult issues. Btw, in theory the NHS ought to be able to offer such counseling, but there's very little in the way of mental health care provision on the island; back in Sept. it took three weeks to organise a CPN visit and the person had to come from the mainland (ferry cancellations due to bad weather extended the delay). Again, the nature of island life compounds these issues in ways retirees don't realise when they first move to such places.

Boromir.
 

acorns

Registered User
Jan 25, 2018
103
0
Thanks for the reply! Indeed, my Dad is receiving nursing care, currently costing 1K/week (he lives on an island so costs are generally higher, a double whammy); he's always wanted to remain at home though if possible. The care home doesn't have any long term places available, while the council-run home also has no places, so any permanent care home would mean leaving the island - I do not think he would last very long in a mainland care home, with few able to visit him.

Thus, my intent is that he return home when sufficiently recovered (regained strength), in about 3 or 4 weeks' time (or after new year if the logistics of organising the move so near to xmas are too complicated) where he would then have a 24hr live-in carer (LIC) which costs about 1300+/week, at which point he ought to be able to obtain Personal and Nursing care assistance of 241/week, something being denied at present because his current care home accomodation is supposed to be temporary, and the CNA didn't recognise the necessity of nursing care even though he's been receiving it (and paying for it) since the end of Aug. I am of course going to appeal, but it might be easier to delay the CNA process until he returns home (that really shouldn't be necessary, but the SS do make these things very difficult at times).

I agree about the pendant issue, my Dad would often take his off as he didn't see the point of it, though as his dementia progressed he cared ever less about this and now isn't bothered by its presence. A bigger issue though was that when he had some kind of problem, he forgot that he even had the pendant and alarm service available. Hence why, living at home once more, a 24hr live-in carer is the best option, doubly so as not only does he need 1-on-1 attention with regard to help eating/drinking and other matters, he will also find the continuous company a great relief, and at home his neighbours, friends and family can far more easily visit him, phone, etc. More expensive, but worth every penny. I completely redecorated the old upstairs main bedroom to be where the LIC would live, but I plan on making some further modifications such as a direct alarm arrangement so he can alert the LIC if he needs help at night, etc.

Alas it takes me a whole day just to reach his home on the island, and the care home is 16 miles (two buses) from his home, with few bus connections.

His elderly neighbours tell me that such places are understandably popular with retirees because of the quieter life, closer community, etc., and these are certainly good things (very safe, very little crime), but as one ages and various medical issues set in, especially dementia & suchlike, the remoteness of island life can become a severe hindrance. Neighbours are further away than one would desire, food/fuel costs are much higher, service provision is more limited, public transport is less prevalent, etc. Many elderly people living on islands become socially isolated just by the nature of where they live, and of course it's harder for off-island family to visit. I expect similar issues arise for those living in mainland rural areas.

Boromir.
Hi Boromir
I just wanted to jot down a few quick thoughts I had on your situation:
- a friend had live in carers and she said that worked v well, but she did need two of them so they could each have time off
- I found my 6+ hr weekly journey very tedious until I started to use it to organise, plan, study, do online grocery shop, email etc and eventually it became quite a relaxing interlude between my two worlds
- Health and care people never seem to put anything in writing despite my best efforts. It's been incredibly frustrating all these years - I used to have to stay an hour longer at work to make up the time after all those calls.
- when I first started going back to my mother's there were always 30 charity letters in the pile of mail. I dread to think how many cheques she was sending out each week...
- your situation does sound incredibly complicated. Could you take more control by spending half your week there and then organising care for the other half?
- is there an option via direct payments where you are the employer and can advertise for staff and do the paperwork yourself? I'm going to look into this again although it would be easier to stick with agencies...
I hope you get a good system up and running so your dad can stay safe on the island for as long as possible ....
 

Boromir

Registered User
Jan 25, 2018
14
0
acorns, thanks for the reply!

As it happens the company that provides the live-in carers operates a rotation system anyway, typically a team of 2 or 3 people, so each gets a rest as needed, typically either a week on & week off cycle, or a month on & month off (whatever). What they do is have the team look after the same number of elderly people (eg. a team of three would be dealing with three elderly people), chosen so that at least one of the elderly people is someone who does not require overnight attention. Thus, whichever carer is currently looking after them is able to restore their normal night's sleep for that period of time. This also means there is never a period where the family has to step in to take over, because the company can simply rotate in someone else for that period.

The journey doesn't offer much in the way of practical organising as it's two buses, two trains and a ferry, a lot of changing and generally very tiring, in parts with no net link (by that I mean no cell reception either, so one can't even tether a phone).

I hear what you say about getting things in writing. I slowly learned that anything agreed on the phone with the council was pointless. The day care visitors though were generally pretty good at writing things down, but the down side was that they would often include things which were unintentionally misleading, eg. they might say a particular pudding had been put out for my Dad to eat, but this bore no relation to whether he actually ate it (because they were not able to remain & observe).

Sorry to hear about the charity letters. Retired peope mean well with such things of course, they feel like they want to give something back, but they don't realise its money they will need in the future far more than the charity does.

Re half weeks there & not, alas as I say my Dad lives on an island and I'm most of a day away, it's not remotely practical (and there's no way I could cover my own rent & costs if I was away half the time). Care-wise, I couldn't do much of what is necessary, not at all qualified, and my Dad wouldn't be comfortable with that either re hygiene, toileting & suchlike.

I did look into the idea of direct payments and employing someone in that manner, but a bad experience with hiring a private cleaner a few years ago completely put me off that idea. It's also more complicated since one has all sorts of extra legal obligations & suchlike. Safer and easier to go through an agency, in which case council funding assistance goes directly to the agency, which is also simpler.

Thanks for the best wishes! Though my Dad is recovering and has gained 2kg weight in the last two weeks, I don't think it likely he'll be going home before xmas, too complicated to sort out when it's so close to the season holiday, and as I suspected it's taking longer for him to recover his strength than the medical people thought anyway. Restoring a proper food & fluid regime was difficult enough, but encouraging him to exercise is a far bigger challenge as he's always been a somewhat sedentary man, likes nothing better than just to sit in his chair and ponder things. Not an issue in one's 60s, but it's a long time habit which is working against him now. Another reason why a live-in carer is a good idea, the constant encouragement & attention to deal with such things, without his feeling unsafe at being alone.
 

acorns

Registered User
Jan 25, 2018
103
0
Hi Boromir - the live-in carer option sounds perfect! I've not heard of a company offering that before. I hope your dad can come home and benefit from that. (Make sure he's not left to lie in bed all day where is he is - that happened mum last xmas and she's not been back on her feet since...)
 

Boromir

Registered User
Jan 25, 2018
14
0
I found two companies which offer live-in carer services, Christies Care and Clyde Carers, but there are many others.

My Dad did used to have an issue with staying in bed too much, though back when he just had day care visitors they were pretty good at getting him up. However, he seems to have evolved a somewhat better habit after being in the care home for a while, they get him up earlier in the day and he goes to bed earlier (he used to stay up far too late, a hangover habit from when my Mum was still alive, the two of them would play Scrabble & suchlike well into the small hours). With a live-in carer present, I'm sure staying in bed wouldn't be a problem anymore, with a lot more opportunities for planning physical activity which wasn't possible before. This btw is why of course it's a bad idea to put a TV in such a person's bedroom! :D
 

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