Second (third, fourth) guessing myself

[jenniferpa]

My mother continues much the same, although getiing information is like getting blood from a stone. However, I have booked a flight to come over, but now I'm second guessing myself - should I have thrown caution to the winds, and got on the first available plane? This is what I have done in the past, and the hell with the money, and then sat around for 2 weeks twiddling my thumbs waiting for them to realease her from hospital. True, then I can visit every day, but it seems to make her more upset when I do (take me home, why can't you take me home, when can I go home: questions to which I do not have the answers). The problem is, without accurate information it's difficult to decide what is appropriate. If they would say she's taken a turn for the worse (not that I want this of course) at least I could go into full-fledged "get me there now" mode. I have a call into the hospital social worker who is, today, supposed to be "evaluating her care package" with a view to release, I suppose. She is supposed to be calling me (well, she'd better - Mummy will have no idea what care she's getting), and I might have a better idea then. However, having taken the logical approach this time, I am finding myself torn. There are lots of good reason for not getting on a plane today, not least my own family. They have been very good about this whole thing, but there's no denying that my children and my son in particular have really paid the price over the past year. Not life-threatening, of course, but there have been "issues" which would have made my hair go white if it wan't well on the way already.

I suppose my problem, like everyone else, is balancing the constant, but low-level, drip drip of parental responsibilities, with the more immediate "fire fighting" needs of my mother.

As it stands, I'm getting back to the UK on the 19th - this is later than I would have wished even at my most logical, but due to other commitments, travel between the 12th and the 18th is not feasible unless we're talking truly lfe-threatening. On the other had, at 89, everything is life threatening. Oh god. Damned if I do, damned if I don't.

Jennifer

 

[Grannie G]

Jennifer, I know I`m stating the obvious, but you can only do your best.
Just take a minute to sit and reflect. What will anyone gain by you beating yourself up?
How would it be if you wait till your mother is discharged from hospital. Then you will know they have done all they can for her and you will, at least, have their considered opinion of her condition.
When she`s out of hospital, you will be able to get a better idea of how she really is, away from the hospital set up.
I know it may be easy for me to say, but you seem to be banging your head against a brick wall, and that won`t help anyone.
Jennifer, be a bit kinder to yourself. Love Sylvia x

 

[Skye]

Hi Jennifer

Sounds as if panic is taking over again!! Deep breaths!!

I'm not being facetious, truly. You've done your best, for your mum and for your family. I know you'd rather have been at her side, but then you'd still have felt guilty, wouldn't you?

Try to relax. You've really got everything covered. Your mum's care package is being sorted out, you'll be with her soon, and if she should suddenly take a turn for the worse you still have the option of an earlier flight.

You've done so well, getting everything organised from a distance, and your family obviousy need you too. I do hope your mum continues to improve.

Love,

 

[DeborahBlythe]

Hi Jennifer. The 19th will be fine, don't worry. Let them know that you are coming back but perhaps allow a little space for travel hiccups, tiredness? You have valid reasons for coming then, not earlier, and from the sounds of what you have been writing, your mum is reasonably stable. You are doing the right thing. They told me that my mum had but a few weeks to live in April, but here she is pottering through 2007 having taken her 92nd birthday in her stride. Predicting mortality is an unreliable activity and as a friend of mine once said " Consultants? What do they know about mortality? They said my husband would be dead in the month and he lived THREE years!"

Take it easy. Deborah

 

[jenniferpa]

Margarita
Mummy is at the moment in hospital. When not in hospital, she lives in an extra-care facility attached to a nursing home. As I see it, there are 2 options for discharge 1) she can go back to her existing living arrangement or 2) she'll need to be in a nursing home.
For 1) to happen she needs to be weight-bearing, to the extent that she can get to the bathroom by herself. If that's not the case (and it seems to vary day by day at the moment) it's option 2. However, it is possible, even perhaps probable, that option 2 might be a temporary arrangement - she obviously can't stay in hospital of ever, but if there was improvement she could go back to her original living arrangement at some point in the future. The nursing home in question often does provide this recuperative care, so if they want to release her before I get there, I could put that in place with a phone call. The advantage of that is that I know them and they know us. I have to accept, though, it might not be an ideal long-term placement.

Sylvia
You know what they say - if you bang your head against a wall, it feels so good when it stops.

 

[jenniferpa]

Hazel - well of course - I do panic so well! You're right of course - if necessary I could be there the next day (if I heard about it early enough, the same day even). I will practice my deep breathing (with a paper bag by my side in case I hyperventilate)

Deborah - thank you. I must admit, I've been running the "what if she dies" scenario through my head, but let's face it, there not a lot i could do to change that. I suppose my concerns are those of a parent with a child in hospital - she's frightened and distressed and I'm not there to reassure her. However, even if I was there, she doesn't rememeber from one visit to the next that I have been, or even how long she has been in hospital (1 day is several weeks in her mind). So, unless I'm standing there 24/7 she is going to be distressed, and as we know, memory loss means that she can't remember the reassurances.

Jennifer

 

[jenniferpa]

I do wish people would tell me stuff (well people in "authority"). I've just had a call from a carer to say that the social worker had been in touch and she's ready for release! This is after having been told, oh nothing will happen until next week. Actually, nothing will happen until next week becasue Monday is the earliest time that the care manager can get into the hospital to do an assessment. As it stands, they think she'll be able to go back into her flat, with hourly visits for bathroom breaks. Mind you, that begs the question of what's going to happen at night. I have to say, her carers have really come up trumps - I really cannot speak highly enough about them.

Jennifer

 

[Tender Face]

I have to say, her carers have really come up trumps - I really cannot speak highly enough about them.

Jennifer, you know it really struck me how lovely it was that you have something so positive to say in such stressful circumstances for you ....

Now.... instead of beating yourself up about what you're NOT doing or CAN'T do for whatever reason .. how about thinking about all the wonderfully positive things about YOU and what you ARE achieving.......? Doesn't help much with all the 'practical' you're having to deal with, I know ...

You could start with .... "Even though I'm stressed out and worried about everything I am the kind of person recognises, appreciates and acknowledges the good in others" ....

Shall I carry on ......?

Love, (and my hugest admiration) Karen, x

 

[jenniferpa]

Yeah, well, there's enough people I can be twitter and bisted about. I'll start with the social worker who was supposed to call me back, but seems to have taken POETS day to heart. I even told them to reverse the charges for the phone call.

Still, I feel all warm and loved

 

[Skye]

.

Still, I feel all warm and loved

Jennifer, you are warm and loved. You've taken so much trouble to help so many people, and you're doing so well caring for your mum and your family.

Will you have to change your flight?

Love,

 

[jenniferpa]

It looks like I'm going to be able to keep to my original plans. I hope so anyway, although I have a tentative plan on hand to come over next week for 5 days (an additional round trip ticket is $900 cheaper than trying to reschedule my existing flight - how stupid is that?) According to the staff nurse, Mummy is much more lucid today, and is zipping (although I'll take that with a pich of salt) around with a walker. From the point of view of living arrangements, this is the most important part - if she can get to the loo on her own, we're all set. Mind you what is it with hospitals? Do they have a rule about mentioned bad news on the phone? When I call, I'm told she's fine. It's only the next day that I'm told that she's better than she was the previous day! For example, on Monday I was told she was "fine", but by Wednesday they were saying she was much better than on Monday when she had been "quite poorly" which as far as I can see means, in medical speak, anything up to death's door.

Jennifer

 

[mel]

Hi Jennifer......good news about your mum "zipping around" .
In the hospital whre mum is there's a lady called Vera in the next bay to mums .....she has AD and she was certainly "zipping around" yesterday....to the point where she was visiting all the other bays and trying to get into any bed that was unoccupied I thought her and Irene in the bed next to mum were going to come to blows over it and I had to summon help
Mum didn't bat an eyelid at the impending fisticuffs.....just carried on eating her dinner.........
love xx

 

[DeborahBlythe]

Tripping around

Mel, I wonder if that's the same hospital/ward here my mum was from March to end of May. The lady with dementia in the bed next to hers ( who we'll call Norma) was an absolute darling but kept getting into other people's beds and cupboards, and driving the nurses frantic. They ended up keeping her seated with them at the nursing station so that she couldn't get into mischief.

One day Norma was tootling around the ward and stumbling a bit, wearing a nightie that looked too long for her. The nightie looked rather familiar and turned out to be my mum's which she had somehow extracted from my mum's drawers. No wonder she was stumbling: my mum is a good foot taller than her!

Whenever my mum's dentures went walkabout. ( You didn't know teeth had legs, did you?) we always looked in Norma's direction first off.

Jennifer, that's great to know your mum is 'zipping'. Hope you feel a little more reassured. All the best,

 

[alex]

Hi Jennifer

Its so difficult when your torn between your family and your mum and of course the distance..........you must be tearing your hair out!................you've done the best you can.............no point in beating yourself up...........plans can be changed quickly if need be, i'm sure your family would understand and support you if you needed to leave quickly.................and yes jennifer, hospitals will give you bad news over the phone if your the next of kin........they are obliged to tell you if there is reason for concern..................but hopefully, your mums on the mend now (fingers crossed) and i'm sure it won't be long before she's zipping around in her own home.........so enjoy your visit on the 19th............safe journey!

Love Alex x

 

[jenniferpa]

Just an update.

I have still not managed to speak to a social worker - it would appear if you are paying you don't even have a right to an assessment (yes, I know that's not true, but it seems like that). However, I have just spoken to her care manager and she is, in her words "as bright as a button" and very much looking forward to going home, which should be tomorrow. So, will be travelling over on the 18/19 January as planned.

Thank you all for your support at this time. It is, as always, very much appreciated.

Jennifer

 

[jenniferpa]

Final update (I hope)

My mother, is now thankfully out of the hospital, although in worse condition than when she went in - she has essentially stopped eating. We (her care manager and I) have been unable to get a diagnosis - the discharge papers said "UTI? Stroke?" I have no idea whether this is refers to another stroke, or simply the fact that she has had strokes in the past. As for the UTI, this was the first time either of us had heard this mentioned, although it's not uncommon in the elderly. The medication dabacle continues however - she was sent home in an ambulance without her medication, which subsequently came in a taxi. However, as she is cared for by paid carers, medications need to be a pre-measured dosages - these were simply provided in boxes. When the care manager called to point this out, and that she had been quite clear about the requirements, and anyway, the hospital had my mother's own pre-packaged medications she was told "Oh yes, we've got them here" at which point they were sent in another taxi! Added to that, they tried initially to discharge this 89 year old after 8 pm. They are have been unable to grasp the fact that although her home (flat) is in the grounds of a nursing home, she is not a resident IN the nursing home - at 8 pm all the domicilliary care staff have gone off duty.

Irritatingly, she was kept in hospital for approximately 5 extra days (3 of them "working" days) because there were no OT or PT's available to assess her. If the NHS wants to cut hospital stays, they should ensure that there are sufficient numbers of these people to perform their duties in a timely manner. Finally, a system which seems to encourage everyone to pass the buck is never going to work efficiently, or catch problems before they occur.

Sadly, I suspect that this is not the last I shall see of this hospital. There is talk of closing it, and I, for one, will be delighted, although I fully appreciate that these problems can and do occur all through the system.

 

[Tender Face]

Jennifer, if it's any consolation, the 'discharge' process I have witnessed for many years in NHS hospitals has driven me batty! I have become used to a consultant giving the OK for discharge on an 8am ward round - and felt lucky 'to get out same day' ... all things apparently pinning on OTs and pharmacy ....... I have often felt that mum is just a 'pawn' in their process - and the waste of beds and resources for others whilst a patient is ready and eager to get home ?????

That aside, let's hope mum is still 'bright as a button' - you've said her carers are wonderful and the Care Manager certainly sounds to be 'on the case' .... keep your faith in that until you get here for yourself....

Thanks for the update (although it does sound a bit mixed) ......

Love, Karen, x

 

[jenniferpa]

I wonder, has anyone ever discharged themselves, or someone else, without getting the "all-clear"? As far as I can see (and has been reported by her carer) all the OT does is see if they can walk and ask them stupid questions like "can you make a cup of tea" (Answer: yes, even though I doubt she would recognise a kettle, let alone be able to fill it). I could do that (ask stupid questions). Even if there's a problem they don't actually do anything. When I get over there I'm going to go to the hospital and see if I can get any answers through PALS, who were about the only helpful group in the hospital.

Jennifer

 

[mel]

Hi Jennifer
pleased to hear your mum is now out.....( I think !!!)
I'm sure you'll feel much better when you've seen her for yourself but as Karen says....it sounds as though she's surrounded by really caring carers....
Love Wendy xx

 

[Tender Face]

Jennifer, have you been in touch with the Hospital Social Work Team ....??? Years back (pre dementia - or was it? I now ask myself?! ) they were fab with me ... understood that mum was claiming she could climb Everest in an effort to be discharged quicky... that she could 'manage' when clearly she couldn't (at that time on a physical level only) which the OTs chose to believe because presumably mum had provided the answers to allow them to tick the right boxes on the paperwork .....

I know I've mentioned this before but the problem I see with the OT service in the UK NHS is that they're like bees round honey within a hospital - on a home assessment basis (which surely is more essential and accurate?) they are so scarce we can expect to wait 12 months for an assessment ....

That is no reflection on OTs .... but the system they are forced to work within ... they must be as frustrated as the patients/carers .... why train them for specialist help to be so badly utilised? Must be demoralising.....

K, x