Family Matters

[Wendyf]

I think it's time to start a new topic devoted to those of us who are trying to find a way to handle our very elderly, very independent relatives. Having narrowly survived a visit to my mother (a 4ft 6ins, 91 year old control freak, bless her ) I need to let off steam!!
Following a recent trip to hospital it was agreed between my mum, brother and myself that we would increase the days on which she has a carer visit from 3 to 7. An hour each morning, to check her legs & feet, help her with her tights and generally do anything she needs. Of course the company we use is hard pressed early in a morning, but would mum be happy with a slightly later time? No, it would interfere with her very busy life. Full stop. I managed to arrange a 9am visit each day which sounded fine, but since we started on Wednesday there has been a problem with staff and one day it was early, one day late.....my mum is getting all uptight wondering when they are going to come....she "doesn't need people coming in", she "can manage".
Aaagh.

[Sue]

Oh Wendy I feel for you. what can I say.

[Stanley]

Good idea for a topic Wendy. The problem of home care is popping up all over.

[EileenDavid]

We had the same problem with Dave's mum no continuity with visits from the carer's she was the same age as your mum Wendy. Eventually she went into residential care and it gave her a new lease of life she loved it although it isn't for everyone but Ruth was happy. Her and my mother became good friends.

My mum didn't have home care as following a road traffic accident which they said she wouldn't survive went straight from hospital to residential care as she needed 24hour care where she continued to live for 15 years. She died in the home aged 95 of old age in her sleep and wasn't on any medication. Eileen

[Wendyf]

There are so many stories about terrible care homes that mum refuses to even consider it. I try to explain that we have the opportunity now to find somewhere really nice, but if we leave it till things get desperate the choices will be limited. In fact I have found the perfect place for her in Crosshills, very close to me, in a light, bright building where the rooms have a little kitchenette with fridge, kettle & microwave. Expensive yes, but she can afford it, especially if we can rent out her bungalow. My mothers big objection...you only got a shower once a week.
When she really can't manage we will have to employ a full time carer, which should be a happier option...it's this in between stage, when she is just about coping, that's difficult.

[Marilyn]

I feel for you all.
Thankfully, we don't have any elderly relatives to consider....for which I am very grateful indeed.

Some years ago, I used to work as a Blood Sister on domicillary rounds. Our schedule was arranged according to priority...eg those who were fasting and diabetic were called upon before those who were fasting and not diabetic. Occasionally, an even bigger emergency pushed the call time back slightly, though I used to belt around as if the car was on fire and tried hard not to keep folk waiting. These home visits were for people too sick to be loaded in a car by relatives and driven to a centre. It was a free service to the client of course. But the number of times I would arrive at a clients home to be told "You are ten minutes late and I need to get to Bingo! ( or something similar)."
( couldn't go to bingo via a blood collection centre could you deary?)

Having said that, I do understand it from the clients point of view. There must be nothing worse than sitting there dying for a wash or simply to be dressed...and I think it is quite normal for some clients to get a bit 'nit picky' until they get used to their new routine. Change is hard to accept for some folk, and that can be expressed as dissatisfaction...

[Wendyf]

I have tried to explain to mum that there are other people whose needs are much more urgent than hers Maz, and surely half an an hour each way makes no difference to her....but no, she just can't see it that way, she is paying for a service and dammit, they should come at the time arranged!! She has absolutely no patience at all, worse than a small child.

[Marilyn]

Don't worry Wendy....someone will come along who knows just how to handle her, and you will breathe a sigh of relief.

I remember back to when my hubby was in Intensive Care, giving the staff a run for their money ( he doesn't relinquish his independence easily either). Along came a little Scottish nurse who was as wide as she was tall, with a voice like a foghorn. She let him know exactly who was boss...I smiled to myself because they couldn't have found a better match for him.

[Tizer]

Thanks for starting the topic Wendy, the subject is important and will get even more so in coming years. As you know, I've been relating the story of Mrs Tiz's parents in the Continuity topic - first her dad was taken to hospital after a bad fall (he has Parkinsons' and heart disease), then released (sorry, discharged!) but no sooner had he gone home than mum was taken in as an emergency and is still there. Now she's off the danger list the hospital needs to get her out and free up the bed for the next emergency but the occupational therapist (OT) and carers said she needs to spend 6 weeks at the local rehab centre before going home (she can hardly walk at the moment). In the meantime the rehab centre has decided to restrict admission to stroke patients only, so the hospital said they would send her directly home on Monday. Preparations have gone ahead for that but the last we heard was on Friday when they said she now can't come home on Monday! Apparently the OT has to sign her off first and this hasn't happened yet, so we don't know what will happen and when. The NHS has lots of highly motivated and well-qualified people but what seems to be in short supply is coordination, control, logistics and management in general.

Wendy describes her mum as a control freak but I think that behaviour comes to many of us with age. Our experience with parents in their 80s/90s is that they MUST have things done on time, to a schedule, with prior notice etc. I don't know whether its related to worry about missing something or because we get more confused as we get older but it's definitely a characteristic of aging. If my dad has a hospital appointment two weeks ahead he wants to know today exactly what time I'll pick him up for the journey. He's also very impatient and criticises the people at the GP's surgery if he doesn't get to see the doctor exactly at the appointment time - the GP has had to explain about emergencies setting back his schedule but it doesn't placate my dad at all!

[Wendyf]

Tiz, unfortunately my mum has been unable to deal with situations where she isn't in control for as long as I can remember. Perhaps it stems from her having a lifetime of restricted mobility. (She was born with dislocated hips, and suffered from arthritis early. Her 2 replacement hip joints are still going strong nearly 40 years after she had them done). She's never been able to cope with family get-togethers, visiting my brother or myself for more than one night or even having visitors herself for more than one night.
There was a time when we were in Scotland and my brother was living in Suffolk that we started to arrange Xmas or New Year holidays in a fabulous holiday cottage in Cumbria. Our families were in their teens and it was lovely to be able to enjoy a big family Xmas together. Mum managed 2 nights and then insisted Dad (who was having a smashing time) took her home. Shame really.

[Sunray10]

Thanks for bringing this issue up Wendy, it needs to be aired. Our parents are living much longer lives now, I myself am in a similar situation, and it can be worrying to say the least. But I can see things from both sides. But, most of all we LOVE our parents.

[Stanley]

I think I've always needed to have control, I don't think it's uncommon. As for punctuality, it was essential in my formative years but doesn't seem to be as important now. All the parents you are dealing with were brought up like that. We even had a rhyme we had to recite at school; "Punctuality is the politeness of princes and the courtesy of kings". It was serious stuff!

[Marilyn]

I think things are changing in some respects.
Hubby and I both sense that our ( combined) children will have no interest at all in worrying about us or caring for us in old age in the way that is probably currently accepted to be the norm. We feel it is our own responsibility to plan for ourselves...to make the changes in lifestyle that are needed as we age....and we are quite prepared to do that. ( hopefully we won't both 'lose our marbles' at the same time or it could get tricky!)
I can see us probably buying into a retirement village in latter years, that has an attached nursing home when progression becomes necessary.
( which is not such a bad thing as it fits in with my philosophy of gradually eliminating all the stuff that is not necessary in life. I couldn't bear to live in a house full of old junk and memories as I age. When I go, I would like to leave nothing but footprints.)
And to be honest, the kids don't give a hoot, so long as the financial side of things is all worked out ( in their favour of course!).

My thoughts may alarm some of you...but given that I wasn't raised in a family situation I guess my beliefs have come from my unique experiences...I dont believe anyone has a duty of care to me.
I would find it difficult to be burdened by the loads some of you are currently carrying...

[EileenDavid]

We had an organisation called CARE and we fought for the right of the elderly in the Bury area to have choice of where they wanted to live in residential or home care. We managed to keep them from closing down the council homes for two years but unfortunately they are now closed.

Ruth Dave's mum chose to go into residential care after her husband of 61 years died. She couldn't hack the care workers not being punctual or some days not even turning up. She had them 4 times a day but the teatime visit disappeared as they made her a sandwich and put it in the fridge. The evening visit to assist putting her to bed was supposed to be at 9pm but some days they came as early as 7pm. Consequently she was up in the early hours. There was many a time we were called out as she refused to either get out of bed for the care worker or sometimes she refused to let them in. They had a key but she put the chain on the door. She was further distressed when at bonfire night kids threw a banger in her vestibule.

My mum didn't have a choice social services said she had to go into care as it was needed 24/7 (hate that expression so American) I used to take her out regularly and she always came to us for Xmas dinner. Ruth on the other hand didn't want to come out she was happy in the home.

All you can do Wendy is suck it and see. Both our mothers went in for a day to see if they liked it. I also know someone who recently went into a home although she was against it at first but they took her to visit several and she found one she quite liked.

Good luck Eileen

[Wendyf]

Thanks Eileen, its always good to hear positive stories. Maz I agree with you, and we plan to take a similar route, (though when I mention moving somewhere smaller to Colin he talks about getting somewhere he can experiment with water power....don't think he quite grasps the concept!)
We have no choice but do what we can to support mum, that is the position she has chosen to put us in, and it is not in our nature to "leave her to rot" as she suggests. Her strength of mind and sheer determination to keep going and stay in her own home is admirable, but independence doesn't come into it. She is totally dependent on her family, kind neighbours who pop in to chat, put her bins out, and take her shopping once a week, a cleaner, a gardener...its quite a list really, and it only takes one link in that chain to fail and she is in distress. Oh dear, I do sound awful don't I...I did say it was a letting off steam topic!!

[Sunray10]

Wendy, NO it dosen't sound "awful". You are doing the caring thing and she is your mum. Its what we do isn't it.

[Tizer]

In my last post I said the hospital had decided Mrs Tiz's mum couldn't come home on this Monday. But this morning her dad got a call saying she would, after all, be coming home today (Monday). At 5.30pm we rang dad but there was still no mum - the hospital said they had no transport. We got a call from dad at about 7.40pm to say mum would now arrive home at 8.00pm. We don't know if a carer will turn up tonight to put her to bed - possibly the ambulance staff will do that? Will carers turn up tomorrow? No-one seems to know what's happening!

It's interesting reading Maz's plans and expectations but I wonder if we often fool ourselves about what we expect to do or be in our twilight years? Judging from what we've seen in recent years with our parents and some neighbours, as we get old our preferences and needs change and we end up living in quite a different way to what we would have expected when younger. For example, we've found that older folk often find indoor lighting or sunlight too bright, so they avoid bright places. They dislike windy weather because it's noisy (not good when your ears are failing anyway) and you feel more frail and liable to be blown over. We are given the impression that the `older generation' is living a great life, working in second careers, taking sea cruises, partying etc - but the truth is that's only a part of the older population, there are many that we don't see much of who can't indulge in the high life through poor health and/or lack of money. They are less visible.

[Stanley]

Maz. I don't find you're attitude surprising. I had the benefit of reading the story you and Cath told on the old site and if all that did one thing it made you act independently. Of course as Tiz says, we don't really know what will happen. My ideal would be going to bed after a good day and not wakening up. I can't control any of the issues and so simply crash on doing my best to stay active and be a good example for my children. I have done as much as possible to make tidying up after me as painless as possible. ( And the washing machine and breadmaker are on!)

[Wendyf]

I hope all went well Tiz, but somehow it seems unlikely. A similar thing happened to my aunt a couple of years ago when she had been taken into hospital with chest pains. The powers that be refused to accept the extent of her alzheimers so she was packed off home one evening by taxi without me being notified, a young social worker popped in and brought her fish & chips then left her to it. Within an hour she was wandering the streets, the police & ambulance were called and she was off back to hospital and the process began again.
Mum has agreed to give the new system a chance to settle. Phew.

[Tripps]

I could say a great deal on this thread, but am reluctant to put too much personal detail on a public site. I have been through most of the problems referred to over ths past few years. I would just say that I found most Occupational Therapists difficult to deal with. They were strong on promises, but weak on fulfillment. I've had all the problems with care visits, but remember to see it sometimes from the carers's point of view. They are given impossible schedules to keep to, however bed at 6.30pm "because it looks as if it might snow" was a step too far. I'm quite assertive when necessary, but was unable to get any visit after 9 pm, we just had to adjust our routine.
I asked the question many times - are we here for the convenience of your staff, or they here for the convenience of the clients?

PS beware the phrase "multi disciplinary approach" - it's jargon fo passing the buck.

[Tizer]

Here's our latest update. Mum was brought home at 8.00pm but by 8.20 she had fallen while walking with the Zimmer frame, had a bloody face and dad had to call the ambulance service - he can't lift her if she falls. They arrived in 10 minutes and took her straight back to hospital and she's still there, having tests. Dad was at the hospital until 4.00 in the morning! He rang about 10.00am today but he's in a confused state and didn't know which hospital mum was at, except that it was nearer to home than the last one. A carer has arrived at home - but for mum, not dad! All the care services have been fired into life but mum's not there. Chaos!

EDIT: Update at 8.00pm. Dad rang the carers and told them not to come until further notice because mum's back in hospital. Then he got a call saying she was being sent home again today! She hadn't arrived when we rang recently. It turns out she was taken back to the same hospital last night but is in a different ward. It's not surprising she fell down when she arrived home - she had been in a chair all day waiting for the transport which finally materialised at about 7.30 in the evening.

Meanwhile, my dad, who has a large lump under his armpit and had been told by the GP that he needs a scan, had a phone call giving him an appointment in October. But he doesn't know where he has to go and whether or not it's for the scan. He never asks any questions and just says `yes' if they ask him anything. He's convinced himself it must be to have the scan but I think it's an appointment with the GP to get the results after the scan, and that he'll soon get a letter with a hospital appointment for the scan itself. But once he decides something you can't change his mind. We'll have to ring the surgery tomorrow and check - but they say we're going to have to get ourselves registered as the official person for them to talk to about his medical care otherwise they won't speak to us. Patient confidentiality.

EDIT (again): It's 9.30 on Wednesday morning now and Mrs Tiz's dad says he stayed up until midnight waiting for her arrival but they didn't bring her home. He's tried phoning but can't get any useful information. Mrs Tiz will try again today. He's worried about going out in case they bring her home with no-one to receive her, and he's delaying making meals in case she turns up. Her carers are visiting the house but they aren't interested in him!

EDIT: 9.15am Thursday now. Mum arrived home yesterday lunchtime - the hospital had decided to keep her in overnight because the transport turned up so late in the evening (good decision). A carer arrived and gave mum cheese on toast for lunch. Now we have to see how well mum copes with being at home, how well the carer system copes with mum, and who makes the meals etc.

[Jamie]

Just a reader on here,but this topic is interesting, to see how time flies just look back 10 then 20 then 30 and then 40 years. 40 years ago doesn't seem that long back ? well to me it doesn't either. Is old age something that creeps up on us and when it does it comes as a complete surprise, hence the reluctance to adapt and change circumstances ? I don't think we realise that we are getting old,my father died aged 68 I thought he was old, now I am approaching the same age I don't think I am old.
We seem to be planning for our own future old age much better than our parents did, so I think we will be able to adapt to living in a care home or such much better than our parents ever could.

[Stanley]

That's a good point Jamie. I always think that when we go to a funeral, whilst ostensibly the people there are paying their respects to the deceased, they are also mourning their own mortality, they know it's their turn next. The same could apply to worrying about our parents, there is an element of recognising that we are going to be in the same position. The good thing is that many of the taboos have fallen away and we spend time these days addressing the matter. The problem is of course the unknown, none of us knows how we will end our lives. My attitude is to look after myself as well as I can and hope I just fail to waken up one morning. The thing we all fear is senility and dementia but at least we talk about it. That's one of the reasons why this is such a pertinent topic.

[Sue]

This has come a long way whilst I have been away. So much said that brings to mind the last 15years with my Dad. I miss him, but I don't miss all the worry , distress and emotional turmoil. I am thinking of you all in this predicament

[Stanley]

I was lucky Sue, long lives, short illnesses and quick deaths. Lots to be said for them. However, life balances out, losing Big Harry was terrible. Parents shouldn't have to bury children. We have never stopped grieving.