One Step Forward

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
Well, it seems we finally have a place in a residential home for my Mum, after phoning and visiting so many I lost count: my living room is full of folders of brochures, leaflets, pamphlets, my notes, god knows what. But it's the home we liked the most of all of them.

And three hours after I got the phone call telling me that, she collapsed in hospital (she'd had very low blood pressure that morning, when it's usually really high) and spent the night in A&E, so now we're waiting on a ward review to decide if she's safe to move.

After several weeks of being confused but mostly calm - apart from outbreaks of 'going home' syndrome, which had been lessening - today when we visited she was utterly confused, very agitated and emotional. For example, I'm apparently having an affair with the doctor's daughter - which was news to me and my (male) partner. I was variously her brother (dead since 1982), my younger brother (I don't have one - I'm an only child), or me, but I wasn't popular which ever one it was.

She cried because her dog was dead (it's healthier than it's been in years and living with a friend 10 miles from me). We have apparently also barely visited her the many years since her mother put her in there ('there' wandered between being her home (although she thinks she has several), a shop, 'the office' and a couple of places we couldn't figure out - it was never a hospital; her mother died 20 years ago; and we've visited at least once a week since she was hospitalised last October). All the 'usual' threads of her delusions were there, but much stronger and more belligerently than before. Staff who have previously described her as 'no trouble', have plainly found her a considerable trial the last few days. It all seemed like a big step downhill. (And draining after a morning already spent packing personal belongings from her house to take home with us in readiness for personalising the room in the home.)

So I quietly pray that tomorrow's meeting will decide she's fit to be moved and she'll be near us soon, rather than a 7 hour round trip every weekend to either listen to nonsense or be accused of things when all I want to do is make sure she's safe and being cared for as best anyone can. (If it's going to be a 15 minute journey in the future, I think I can cope with it a little easier. I'll leave knowing the gin bottle isn't three and a half hours away.)

As so many of you are further down this long, winding road than me, a couple of questions:

* once in the home, what recourse to local services (beyond the home's GP) does she have, or do I have on her behalf? There have been changes to her medication recentlyas the hospital are contemplating Aricept and are changes existing prescriptions in readiness. I want to be reassured someone with knowledge of dementia will be involved in monitoring her medication
* what happens if the place doesn't work out or the home decide they can't cope (it's taken every spare evening and weekend for 2 months to find a place and get control of her finances so we can make sure it'll be paid for without hitches: she may be solvent if incompetent to manage it, but I'm skint)
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Dave W said:
* what happens if the place doesn't work out or the home decide they can't cope (it's taken every spare evening and weekend for 2 months to find a place and get control of her finances so we can make sure it'll be paid for without hitches: she may be solvent if incompetent to manage it, but I'm skint)
Dave, do you have an Enduring Power of Attorney set up; would she be likely to sign one? (when in a less belligerent frame of mind)

Anyway, congratulations for finding a suitable place - hope it works out well.
 

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
And other foor raised to move ...

Hi Lynne

yes, I've got Enduring PoA - we got it signed last July before things got too bad. Invaluable in dealing with banks, building societies, utilities and much more.

If anyone out there is putting off talking a relative into signing one, don't: your life will infinitely more difficult without it, and considerably more expensive.

Fingers crossed for this afternoon, and hopefully a happy outcome.

Dave
 

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
Two Steps Back ...

Review meeting decided she's not fit for discharge and needs to be reviewed again next week. So now we wait and pray that the home will retain the room (scheduled to become free on Thursday) until at least next Tuesday rather than giving it to someone else on the waiting list.

And at 4.41, I can start this afternoon's workload, wanting to bang my head into the office desk.

The marathon meets the steeplechase, with the shoelaces tied together and the waterjump full of piranhas ...
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Dave,

Do get in touch with the Nursing Home and explain the situation. Hopefully they will be amenable to a few day's grace.

Good luck.

Jude
 
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Dave W

Registered User
Jul 3, 2005
268
59
Bucks
Thanks, Jude

Hi Jude

we visited the home last night, as we hadn't had a chance to even see the room before (we've gathered some bits and pieces from Mum's in readiness). The Manageress is away on a training course till tomorrow, but the assistant we spoke to last night didn't think a few day's grace would be a problem. Let's keep those fingers crossed, eh?

Dave
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Everything crossed for you!

Hi Dave, do hope you get things sorted soon. This has been such a nightmare for you these last months especially. As you say an EPA is an absolute MUST HAVE, please everyone take note here!! Keep us posted won't you, lotsaluv, She. XX
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Dave,

Next thing is to ensure that the Manageress and Assistant are kept in the loop. A short daily update phone call should help to keep that bed available with a bit of luck.

Hang in there....!

Jude
 

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
Will do

Hi Jude, will do. Off to bed with stinking cold right now, so probably working from home tomorrow so will try to give them a ring. CPN also battling on my side (I believe it's traditional to say "allegedly" at these points). Will pray between lemsips :)
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Poor Dave,

Like you haven't got enough to cope with, you have to be inflicted with an awful cold as well? I had a stinker 3 weeks ago (still have the remnants of it now) and I swear by Beechams Cold & Flu Remedy (tablets) - "others brands are available" as they say. They don't cure it, but at least you're Walking Wounded rather than living dead.

Sympathy & best wishes

PS Don't take too many products containing paracetamol, i.e. not Lemsip + Beechams
 
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Dave W

Registered User
Jul 3, 2005
268
59
Bucks
And another step

Cheers Lynne - don't worry, I always read the labels, and prefer rest to chemicals. Feeling marginally brighter for a day in bed watching bad telly :) (Shockngly bad movie on 5: really quite enjoyed it!)

Apparently, home have no problem with room but the latest from the Ward is very unlikely she'll be freed to go at next Monday's meeting, so we plough on for another week.

Think I'm going to go back to bed.

Dave
 

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
Bad Telly free zone

Well, I took Connie's advice. Radio 4 and a pile of CDs was much more therapeutic. Seem to be back on my feet again, at least physically - definitely needed three days more or less entirely in bed just to feel human, so I think it was an evil little bug.

In the meantime, we're now back to mid-December. Not Square One, exactly, but Square Three or Four. Mum's still not fit or stable enough to be discharged, and it is currently expected that it will be at least another week possible two before ths is the case. So the room we thought we'd found won't be held that long, and - once the hospital decide she's fit enough to discharge to a home - I'll be back on the phones rining round again. At least this time, I have all the numbers and have seen all the properties.

Think I'd better put the kettle on ...

Thanks to you all for lovely messages, metaphorical shoulders and support - it really does help.

Dave
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Dave,

Oh dear.... So sorry to hear that your mother is so unwell.

All I can suggest is that you keep ringing around the homes and keep them informed as to the situation on a daily basis.

I've got my fingers crossed that it will all work out well.

Jude
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Dave, Jude is dead right there, keep ringing all the homes so you are informed ready for when you need a room. Thinking of you, love She. XX
 

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
Thanks Jude/Sheila

Thanks to both of you. Spoke to the ward tonight, and she's becoming a little calmer again, although she's been very paranoid. The 'step down' does seem to have been fairly significant - she's considerably more confused, and has also been noticeably more incontinent. She's also taken a couple of minor falls - quite possibly accidental, as one occasion was on a wet floor and the other tripping over shoes someone had left in a doorway - but no damage done after a thorough checkup. Blood pressure starting to come down slightly, after a change of tack on medication for that, but they have upped the dose of quetiapine (spelling?) to try to restore a more even emotional/psychological keel.

I'll ring all the homes again tomorrow and advise them, although the ward staff aren't optimistic she'll be ok to go next week. Ho hum.

I'm beginning to apprciate Lynne's signature now - it may not be the party we'd expected, but let's dance while we still can.

Dave
 

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
Might not be so bad ...

Spoke to the home today, and the room is still currently available and hasn;t yet been offered to anyone else, so will hope that this have stabilised in time for Monday's meeting.

Fingers crossed (this is becoming a mantra!)
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear Dave,

Hang in there and keep those phone calls going. A holding deposit might be a good idea if you feel that Mum will be ready to move next week. That way, it's a sure thing.

Jude
 

Dave W

Registered User
Jul 3, 2005
268
59
Bucks
At last?

Well, review went well on Monday and the current plan is for Mum to be moved to the home next Tuesday, as the room's still free. Hallelujah. The hospital will confirm on Friday in case of any changes during the week (they're also introducing Aricept, as they feel it would be of benefit although her diagnosis is mixed vascaular/AD, and have changed her blood pressure medication for a successful regime - her levels are back to only slightly above normal), so we can hopefully move some belongings in over the weekend.

Let's just hope she settles in and accepts the move - then all (!) I have left is sorting the financial arrangement with the home, rehousing the cat, updateall the utilities and thinking through when to sell the house (if the home works out, with her income, the other capital may well outlast her, but let's not get carried away with optimism.)

Wish me - and Mum - luck everyone, and huge, huge thanks to everyone here who's contributed and messaged so kindly, thoughtfully and reassuringly over the last year. I'd never have made it this far on this journey without your help.

Dave