Chocolate bunny strikes

It is unrealistic of me to hope that as time goes by the Lily might improve a little. Be more steady on her feet. Be prepared to make more decisions for herself. I know some of her carers love to allow her to sit back while they do everything. I prefer to sit beside Lily and hand her the clothes she needs to put on next. And it takes longer. There is the constant 'I can't do it, I can't'. But I sit beside her and encourage her and eventually her arm fits into the sleeve. Or she manages to stand up and walk a little. Or sometimes as walk outside in the sun.
And it takes longer to do all this encouraging.
And it takes longer to sit there while Lily takes her time to 'do things for herelf'
Take a glass of water for instance: 'which glass will i choose?' asks Lily.
I always say, 'Lily you choose which glass'
And then i wait while the big decision making takes place.

But today was a big challenge. I got the word that Lily had slightly 'lost it' and her carer phoned me with her concerns. So another day when i had to leave work early and get back and pick up the pieces [so to speak]
But people keep the sort of thing that happened today very hush hush.
But for a carer one gets used to apologising the the professional carers, for what they had to deal with, and then trying to pick up the pieces.
So as soon as I came through the door I had to start cleaning up the carpet, the slippers, the clothing and sheets. But due to the vomiting Lily declined an evening meal. It turns out that the large chocolate rabbit that her favourite carer gave her for Easter - and should have been enough for a family of five for a month - was devoured by Lily (who is tiny, yet is unlikely to ever get fat)over the last 3 days. particularly today. No wonder she got an upset tummy.
She was checked out and pronounced OK save for too much chocolate that had upset the insides a little.


And very late this week one of the usual carers dropped the bombshell that she was unavailable next week. If she had told me earlier then maybe I could have organised a replacement.
But instead it will be me. Which means something i had planned to do has to be put to one side for another one or two weeks.
I have to acknowledge that i have some very useful innter strength that sustains me through all this.

Thank goodness for Ebay

one little bright spot that i discovered when Lily was in hospital was ebay. I know - it is amazing that I never ever thought to try it earlier.

But I have discovered some things and some wonderful people on ebay.

And have been delighted with the arrival of the things I purchased. It is a easy way to spend a spare half hour, from time to time.

And I never realised what wonderful things are on ebay.
Lots of things I really love.
Thank you Ebay for the little ray of sunshine you beamed into my life.

in a spiral vortex of caring - there are ways out, but one must actively look for them

still feeling overwhelmed. feel like it is demanded of me that I make every decision. It takes longer to wait for Lily to decide. It takes patience. And time. No wonder it is hard to get much done, except attend to Lily at all times. Some of her carers during the day are commenting that she is sleeping more and more. And it is difficult to wake her.
Yet over the last few days Lily has called out to me and required my assistance - such that I have averaged a total of 4 hours sleep per night for four nights in a row. It is almost as if Lily is trying to convince herself that no matter how demanding she becomes that I will still care for her. I have guaranteed that I will care for her.
But I know that Lily is very insecure.
How many times can I say, Lily I will do it.
Sometimes Lily behaves in ways that make it harder to care for.
But she must be worried or scared to keep this up.
There are only so many times i can reassure and reassure her.
Somewhere in all this Lily (maybe) will relax and realise that I will just be patient, not matter what she throws at me.
So far she has been in bed for three hours and has announced twice that she has 'wet herself'
She would never ever have behaved like this earlier.
She would have been horrified at her behaviour.
Thank goodness I order more 'products' on Friday to accommodate the greater use Lily is making of continence aids.
I am sure that some people who have never ever considered looking after a relative think it is all about taking in the breakfast tray in the morning and then skipping off to face the day.
It is not like that at all.
It consumes one's life.
It means that one does not have much of a life outside caring.
And the person being cared for has greater needs - so that always comes first.
It is harder to find time to catch up with friends.
And that (sadly) means that one becomes less able to keep in touch.
And even more sadly friends ring less as invariably if the phone rings Lily becomes extra demanding on the basis that she is worried that I am being taken away from caring for her - even though I am perhaps only 7 metres away. She calls out to me or develops a pressing seriously important (to her) demand that must be met immediately.
So instead I call my friends after she has gone to bed, shut the door, and speak softly.
Next week I am organising a treat for myself - though first I had to arrange for a carer to spend all Saturday with Lily so i can do it. More about that treat later.

I am human. Carers get fed up too

This morning Lily became convinced that I would go out an leave her alone.

Yes. Lily is back home from hospital. The day I picked her up from hospital she looked utterly delighted to be coming home.
However lily is back to being her usual insecure overly dramatic overly anxious worried self.
So this morning she was more demanding than usual. All because she did not believe that I would stay with her. She knew I worked at my job yesterday. So she had probably deduced that I would want some "me time" today. Well yes I would. But I had other reasons for not going out today.
Pity Lily cannot just stay calm and believe assurances she is given.
Yet if I do need to go out for an extended period - I always make sure I schedule someone to be with her all or part of the time.
And if I am popping out to the shops then I time it so it is when she is having a rest - and never drag my heels - I get in and get out and get back all in double quick time.
And I never ever go out without explaining what I am doing and how long I will be.
Even my assurances that i was not going out were not enough.
I was getting lunch ready. I let Lily know her lunch was almost ready.
Then i heard a 'clunk'. Not a big noise. But I went to check it out.
Yes Lily had slid down to the floor. She must have been standing next to the door because she was in a little heap at the base of the door.
Then the fun began.
For three hours I encouraged, tried to support her to get up. Tried everything. Put cushions/pillows down for her to press her knees into same. Brought out the brochure on falls to ensure my advice was accurate. It was.
but no matter what i tried Lily said she could not get up.
And I was met with 'you can't go out, not while I'm on the floor'
To which i replied that I already assured her I was not going out.
In the end I rang the ambulance people to help her up. I felt guilty about ringing them - but they assured me that they were not busy.
Three hours on the floor was longer than I should have waited, but I kept thinking she would be able to do it.
And the frustrating thing is when i asked her to turn towards the bed and pull herself up on to the bed she turned the other way (so she could turn) but then said she could not turn the other way.
Ambulance men were great. Very smart, kind and caring. Pulled her up easily.
Then she admonished me for calling the ambulance.
Then she lied to ambulance and said she was just 'practising' getting up off the floor. I rolled my eyes.
If that was a practice then Lily should have been on the stage, because she was convincing.
So in the end Lily went to bed and I did not feel good either.
April Respite, I await you with some joy.

sharing the load

Oh, and I forgot to mention why I was in the car, prior to the accident.
By accident I discovered that a friend also has her husband in the same hospital as Lily.
So she suggested we both go in her car, and then she would visit her husband and then join me to say hello to Lily and then we would go back to our homes in her car. It was a great idea. So that is what happened. The car park at the hospital is always packed and hard to get out of, so it was an excellent suggestion.

Some times smelling the roses is OK , even if things still happen.

Have allowed myself an indulgent day today.
Does not happen very often.
It is nice to allow oneself to smell the roses, read a book, go for a walk and not feel consumed with the thoughts "I should be doing something more worthwhile than this".
But when you are a carer there is precious little time to smell the roses before another request, another demand, another 'must do' duty intrudes into the picture.
Today nothing, so far, has intruded.
However I am packing up some things to take to Lily.

I have enjoyed a day without having to think about what 'should' I do next.
And i needed a little time out for myself.

Yesterday evening I was with a friend who was driving. We had just left the hospital after a visit to Lily. My friend was driving. The car was stopped until the lights turned green. We were just chatting looking at all the traffic moving ahead of us through the intersection.
There was a lot of traffic all around.
All of a sudden we both lurched forward.
It was good that we both had seat belts on. I could feel the car being pushed forward from behind.
It was frightening. I felt as if a Mack Truck had just run into the back of the car.
But no, it was two young boys in a car behind us. They were moving too quickly and were too close to the back of the car I was in.
To their credit they did go around us and then they stopped their car well ahead of us. But we were not certain what would happen next as they made no move to get out of the car to inspect the damage to their car nor the car they had hit.
We could see both of the boys in the car ahead appearing to shake their arms at each other. From a distance it looked as if they were arguing.
We took the car number plate down and the car details - just in case the boys drove off before speaking to us.
But finally one of the boys came down to speak to us. The other boy stayed in the car.
That is when the 'fun' (not) started.
The boy was aggressive and told us not to report the accident.
Then worse he did not have his drivers license on him.
And worse again, he said the car he was driving was not his.
I was worried that he was driving a stolen car.
My friend tried to explain that due to the damage the accident would have to be reported.
Then he became more aggressive and kicked the car, and said to my friend "your car does not have much damage"
But the car did have damage and my friend did not cause the damage.
He said again, "you don't need to report this".
It felt an intimidating situation.
I was worried about how things were going and I looked around for the boy who had been the passenger in the other car.
He was no where to be seen.
But then my friend pointed him out - he was running away from the car. It did not make sense to me. Because the boy was running away, yet had not been the driver.
So I asked the driver, "why is your passenger running away?"
Then the driver denied he had ever had a passenger in the car he was driving.
So now I knew I was also speaking to a liar.
But we were lucky.
I saw a police car across the road.
I waved it down.
The Policeman did a U-turn and approached us. He was pretty smart.
He sized up the situation.
The police officer asked us some details and he took some notes.

In front of the police I asked the boy, "why did you deny you had a passenger in your car. The other boy, who ran away?" The driver was scornful to me, 'get some glasses, your eyes are no good. There was no one in the car. Only me."

But my friend backed me up and said, "there was a blonde boy, heavier build than you, but he was in the car with you, before he ran away". The boy shook his head at us, denying again that he's ever had a passenger.

The police officer looked at that aggressive boy and asked, "how much have you had to drink tonight?"
I had not even thought the boy had been drinking, because he was not slurring his words.
And the answer the boy gave? It was priceless. He said, "no need for a breathalyser officer, I'll be over. You don't need to give me that test"
The officer just smiled.
His fellow officer approached with the machine to test the boy.

And Guess what?
Yes that boy was over the limit.

Then the fact that he was not driving his own car, would not tell the police who was the owner of the car, and he did not have his driver's license on him. And he was over the alcohol limit to drive. It was all adding up, against that aggressive boy.

And when the police asked the boy how the accident happened the boy made this comment, "we were looking at some girls who got off the bus. We were just trying to get the girls to look at us."
And this was from a man who not a moment before had denied there was anyone else in the car except himself.
Then the other police officer took photos of the damage to both cars.

The Police officer told him, "sorry sir, but you are coming with us"
Then the silly boy tried to argue with the police officer, to no avail.

And the police escorted the boy to their police car.

Locked up the other car, after they had looked through it. Then they gave contact details to my friend and we were free to drive off.

We thought we were so lucky. The boys could have driven off. Or the boys could have been even more intimidating and aggressive.
The accident could have been worse. And the police could have been miles away and this would have turned out differently.
And I have written up a statement on the accident to give to my friend.
When I see Lily I will not mention the accident, as it would only worry her. And besides I am perfectly OK. It will all work out OK. My friend at least knows that the accident was entirely the fault of the other driver.

Patience all around is evident.

One marvels at the professional carer, and here I mean nurses. Yesterday I spent seven hours in Emergency. Lily was asleep most of the time. Waking occasionally. Very needy and anxious. And always relieved to see a familiar face. Lily is such a lovely person, she is kind to the nurses and tries to be so little trouble to everyone.
But that cannot be said for all in Emergency.
The patience and professionalism of the nurses amid many sad things is incredible.
They are the front guard in the medical arena. They assess, they organise the blood tests. They prioritise and get things organised before the doctor is available to make more decisions.
But what they have to contend with - if politicians would each spend 24 hours in an Emergency area of a big public hospital, then maybe politicians would get real about the cost and needs of health care.
From the public Emergency Lily was eventually transferred to the private hospital on the same site as this big public hospital. But amid the great many things the nurses had to do for the patients in Emergency I was in awe at their patience, calm demeanor and professionalism.
Those nurses are literally in the firing line of agitated, sometimes abusive, occasionally angry and demanding, unhappy suffering patients and their loved ones as well, at times, it seems. And so many who are impatient.
The nurses deal with things that should not be part of nursing.
Take last night.
A man who had something wrong was groaning and crying out and screaming verbal abuse at the nurses.
He said he felt sick.
They rushed a sick bag to him.
He was sick.
Then he flicked the whole contents of his sick bag over the two nurses attempting to help him. They had to be replaced by two other nurses. The nurses had to leave to change their uniforms.
Then a cleaner had to be brought to clean the floor and a bed nearby had to be remade as that too had ended up with some of his sick on the sheets.
And a security guard came and talked to the man. All that time and effort for a man who was not in any way grateful for the care her was receiving either.

Then a woman with her daughter.
The daughter appeared to be in pain and looked as if she was about twenty five years old. The daughter was very demanding of the nurses, but they stoically coped with this young woman.
This mother appeared distressed at the state of her daughter.
When her daughter was demanding 'smokes' and some matches so she could 'light up'.
The nurses told her the hospital did not supply 'smokes and matches' to patients.
And that she could not smoke in the hospital. But that if she still had any in her bag that she could smoke outside the hospital in a designated area. The young woman was clearly not happy. More abusive words to the hospital staff from the young woman. Eventually the girl's mother offered up her own packet and a lighter with some reluctance. A wheel chair had to be organised to allow the mother to take her daughter outside to smoke. The young woman's mother confided in me that her daughter was once beautiful, but was now an alcoholic and suffered from liver damage. I said to her 'your daughter is still beautiful' because one could see that the daughter was still a pretty girl. But the loss of her daughter's looks seemed very important to this mother. Sad that alcohol could do so much damage to one so young.
Then one sees the sick who are clearly very ill, But at least they are quiet and patient.

The nurses are equally kind and professional to all, even the abusive patients.

What struck me too, in Emergency, were the number of people who appeared to have psychiatric issues and were brought in by Police and then were surrounded by security personnel for the whole time they were in Emergency. They looked able bodied, except their eyes looked different. There was a wariness and a tenseness to these people. Once again politicians should have to spend 24 hours in emergency to see the problems. I think there is a case for 24 hour separate Emergency areas and public hospitals dedicated to solely these patients.
These people with what appears to be psychiatric issues are sick.
The public accepts dedicated separate hospitals and clinics for cardiac,renal, maternity and other issues.
Why not dedicated separate public emergency 24 hour facilities and dedicated and separate public hospitals for psychiatric patients. Not just a separate wing. But a whole dedicated area with gardens surrounding it to help their people restore or better manage their health. Then maybe too there would be security personnel there who are also trained in how to deal with these clients who are suffering. As are their families suffering.
But these patients can be very scary.
The nurses need better protection.
The police should not have their valuable time used to babysit these very sick people until security can take over.
I saw and mused on all this while Lily slept on and on in her bed in Emergency. I stayed beside her as I did not want her waking up alone in a strange place.

Late last night the nurses shifted Lily into a lovely room. The doctor and the nurses were very kind and lovely to Lily. And Lily knows she just has to get better and she will be home again.
Lily is a very good patient. She is quiet, calm and co-operates with the nurses in whatever they ask of her.
But Lily is safe and being well cared for,
Lily seemed better when i left her last night than how she was when she was admitted.
Lily seems scared of all her medical issues that keep happening.
She prefers being home to any other place.
My job is to encourage her, support her and help her in any way to improve her health. Whatever the doctors tell me to do to help Lily i will do.
With one proviso. Lily has told me that no matter what she wants to always live in her own home.
Come hell or high water all solutions to help Lily must be solutions that support Lily to live in her own home, as is her wish.

Running all day

Yesterday I did not check the medication the hospital gave me for Lily, before I left the hospital.
But it was so hard to get anyone to do the medication hand over. I should have asked. But I thought any instructions would be in the bag. They were not.

In any case I was asked to take Lily for a check up to see how things are progressing after she has left hospital. For blood tests and things. And I realised that, despite a chat with the doctor before I took Lily home, that some of the medication was new to me. And I do not feel comfortable giving Lily any medication (new or familiar) until I know what it does and what it is for. So I was lucky enough to get an appointment with the Doctor. I took a carer with me in case Lily felt unwell. Two sets of hands are better than one set in this situation.

The Doctor was so kind. He could see that Lily is less well than when he saw her last. He insisted that the next set of tests can be done in her own home. So she will not have to trek around to the Doctor.
Also the hospital has not faxed the letter to the doctor explaining lily's most recent problems in hospital. So I told doctor i would chase that up and ask them to fax him. Later in the day, after the visit to the Doctor I finally fixed that problem. But that took and hour of phoning person one, person two, person three and so on until it was finally fixed. And I was assured that the doctor would get his letter.
Then there was pathology.
Setting all that up with the pathology people took some time, despite the Doctor's approval for it to happen. I have no idea how people without relatives manage when they are sick. The Pathology still questioned me on whether Lily really needed a home visit. They have never even seen Lily. The Doctor was certain it is required. When Pathology finally turn up they may be kinder in attitude.
Then big wait at the chemist to get one more prescription filled. Chemist is (I suppose) the equivalent name for a person who makes up the medicines that people need when they are sick.
Is it any wonder that I had to have some days off (took it off my annual leave days) to attend to Lily's woes.
Do all countries call that job a Chemist? I suppose not.
The Chemist thought the medication was for me. I look fairly able bodied. Maybe the chemist wondered why a reasonably fit person needed the medication. So the chemist was very courteous, but did start questioning me, on why I needed the medication. Because the medication is very strong. I soon showed the chemist my ID versus Lily's approval for me to collect her medication. And suggested that the chemist contact the doctor, if in doubt. In the end she fully understood that I was only picking it up for a person. And told the chemist what the doctor had told me. Re what the problem was and why it is needed. I suppose that chemists have to be careful. It does not bother me if chemists are careful. I never want to take anything that is not meant for me, and nor have I even thought of taking anything illicit. Yes the world cannot be all amazing exciting people. There is still room in the world for non-alcohol non-smoking non-anything illegal average people like me.
Then I had a few more things to do. And picked up a mango for breakfast. Though it is a different variety so hope it will be OK in the morning.
Almost managed to get Lily some new slacks. But none left in her size in the fabric she likes. The ones she loves wearing now will eventually wear out.
With the chemist all wrapped up I returned to Lily's and had a chat with her. Then the door rang and it was a man trying to sell several large oil paintings. He said all were painted by his friend. But the paintings were terrible. However we had a nice talk and Lily even came out to sit near the window to hear the conversation. The man said that he had been trying to sell the paintings for three days and he was also trying to get some idea of what sort of paintings people would like to buy. Although one could see all the paintings were done by the same hand they were a bit of a mixed bag. Since I love painting but mainly have tried water colours I did still suggest that his friend get a better view (by looking at masters in their field) of painting water and perspective. And maybe lessen the use of red, yellow and orange. Because in some places the use of these three colours was heavy handed and over bearing. He said that my comments were the most helpful he'd had in three days. There was one abstract that I suggested he show to a couple down the street - because I know they like very strong colours and abstracts.
Lily's appetite seems to be returning. Which is good.

Finding blogs i enjoy. It is amazing the beautiful things some people achieve

And I have found two thoroughly glorious blogs that I love.

The Warp and the Weft - Scraps about French General

The people contributing to this blog are amazing.
The Warp and the Weft
http://frenchgeneral.blogspot.com/

and

Just Scrap and Stamp
This person is a creative genius
http://justscrapandstamp.blogspot.com

Lily is happy to be in her own home again

Lily was weighed yesterday. Before she left hospital. She commented that the lady who weighed her told Lily she weighed 37 k. I made no comment as there is no need to worry her. But it is not good.
Before she was sick she hovered around 53k. Then when she was very sick last time she dropped to 45k. Back then the doctor made some suggestions, and she has followed them. Anything to improve her appetite, rebuild her strength and physio to help the process. He suggested a bigger breakfast and sweets/dessert always after her evening meal. Plus drinks to help build her up. And he knows that I will sit with her for breakfast, before her carer arrives, and I go off to work.
Now that she is back I will get back to the fresh fruit salad I cut up for Lily in the morning. And her cereal with psysillium husks and hot milk and sugar. And her wholemeal toast with honey. And the banana yoghurt that she loves.
We sit together while she eats her breakfast. Lily eats very slowly. So breakfast last about 45 minutes.
Lily loves dark chocolate Belgium biscuits and chocolates. When she was in hospital she asked me to bring some in as she thought the hospital biscuits were too hard. The doctor told her she can eat them any time she likes. They never make an ounce of difference to her though. And she likes to suck on barley sugar sometimes.
Her arms are so frail. But 37k is the lowest she has ever been. It worries me. No wonder she is exhausted all the time.
Lily told me she was looking forward to coming home. She has been away for six weeks. A long time, for her. She was worried that the doctor might say she had to stay longer. But he was pleased with her. Even though he said it will take her some time to get her strength back.
And I talked to the physiotherapist today and a program of daily activities is in place for Lily to do with her carers. It gets her outside in the sun and allows her to keep in touch with the world. Her drives to the beach brighten her up. Once the drive is half way through often her carer gets two ice creams, one for Lily and one for the carer. They sit in the car and look at the sea as they eat the ice cream together.
The neighbours were eager to see Lily today, but she went to sleep in her bed as soon as she arrived home. So the neighbours understood that they will be able to see her and talk to during this week, when Lily is ready.
Tonight I helped dress Lily in her most pretty pajamas.
They are beautiful satin ones I bought for her in town. They are a soft green with cherry blossoms on them. Lily said she wondered if i had lost them, as I did not pack them for her trip to hospital.
But once before one of her other favourite (English spelling again instead of USA spelling of favourite) pairs of pajamas went missing in a hospital. Even though everything I ever pack has woven labels with her name on each label. And sewn conspicuously on the inside of the collar. And I pick up and do all her washing for her. So I did not want to chance losing another favourite pair of pajamas in hospital.
Lily said 'pack them next time, they would not fit anyone else'. At least she has her sense of humour intact, (this is the last time I will mention that I use English spellings not USA spellings)
The first hospital Lily was in was great. Before that she had not needed to enter a hospital in decades. But the last three years have made up for her previous absence from a hospital.
But an ambulance cannot always take a sick person to a hospital of first choice. Often hospitals are full and will not accept more ambulance patients.
This most recent hospital was not our choice. Lily was so sick this time that at first my whole focus was on her.
It was only later I noticed things that were not as good as the first hospital that Lily and I think is the bees knees in every aspect. It is a wonderful hospital run by the Presbyterian Church and they do a wonderful job. The caring atmosphere pervades every level of staff. From the volunteers in the coffee shop right up to the most senior medical and nursing staff and everyone in between.
Over the last three years Lily has had so much medical attention. I think it has made me a lot more aware of what is good in a hospital (from the patient/client point of view) and what is not.
I like hospitals where there is a caring atmosphere. And there are little things that make a difference. It goes without saying that hospitals have to be spotlessly clean. And do everything to prevent other clients being infected with the illnesses of other people in the hospital or visiting the hospital.
Some hospitals encourage everyone to use a waterless disinfectant/hand cleaner on arrival. Expensive I know, if everyone uses it then there are benefits. But how much more trouble is there if a sick person (whose health is already in poor shape) also gets an infection because someone failed to keep their hands clean? That can result in a death for a person who is already in poor health.
And often one senses a hospital where everyone cares. Where everyone works towards common (positive) goals.
Versus this last one where there was a feeling that the staff were so stressed and so under pressure all the time.
Lily even made the comment, as she was getting better, - "there are not many staff here, compared to the last place" and "I can hear the staff talking and laughing loudly, but they take a long time to come when I ring the bell."
I can vouch for the last comment. One day I turned up and said that outside was a wonderful day and "would she be interested in a walk outside?" Lily's eyes brightened and she said "let's go now".
I guess 'walk' does not quite explain it. I walk her, using a walker, and when we reach a nice chair outside I help her to her feet and walk beside her until she reaches the chair and sits down.
Then we went outside and were away from lily's room for about fifteen minutes. We returned to her room and sat on the two chairs by the wall, and talked for about ten minutes. Total time 25 minutes.
When we got back from the walk Lily did not go anywhere near her bed nor near the buzzer/bell that she presses to call for assistance. Lily needs help to walk even short distances, such as going to the bathroom. So it was agreed at the start that staff would attend to her promptly.
So a total time of 25 minutes had elapsed since I arrived for my visit.
At that point a stressed looking staff member burst into the room and asked 'what do you want Lily? You rang your bell.' I knew Lily had not rung the bell all the time I had been with her. And said so. Then the staff member admitted that she was busy and had not found the time to attend to Lily and that Lily had rung the bell 'about 25 minutes earlier'. It must have been at least 25 minutes earlier.
It turns out that what Lily has wanted (from a staff member at least 25 minutes earlier) I did for her. After I arrived. But of course I had no way of knowing lily had run the bell, not long before I arrived. And once I helped her she probably thought no more about the bell.
I felt so sorry for the staff.
It was clear they were run off their feet. And they need more staff.
And maybe a kinder group of people at the top running the hospital.
Because there is only so much staff can do in the allotted time. The place had so many people booked in. Maybe too many.
And if there are too many patients and too few staff then that is a recipe for disaster.
The other thing that shocked me was that often when i arrived there was no water in the jug for Lily to drink. I always topped up her jug when I arrived. Not good if the patient become dehydrated.

Lily was weighed yesterday. Before she left hospital. She commented that the lady who weighed her told Lily she weighed 37 k. I made no comment as there is no need to worry her. But it is not good.
Before she was sick she hovered around 53k. Then when she was very sick last time she dropped to 45k. Back then the doctor made some suggestions, and she has followed them. Anything to improve her appetite, rebuild her strength and physio to help the process. He suggested a bigger breakfast and sweets/dessert always after her evening meal. Plus drinks to help build her up. And he knows that I will sit with her for breakfast, before her carer arrives, and I go off to work.
Now that she is back I will get back to the fresh fruit salad I cut up for Lily in the morning. And her cereal with psysillium husks and hot milk and sugar. And her toast with honey. And the banana yoghurt that she loves.
We sit together while she eats her breakfast. Lily eats very slowly. So breakfast last about 45 minutes.
Lily loves dark chocolate Belgium biscuits and chocolates. When she was in hospital she asked me to bring some in as she thought the hospital biscuits were too hard. The doctor told her she can eat them any time she likes. They never make an ounce of difference to her though. And she likes to suck on barley sugar sometimes.
Her arms are so frail. But 37k is the lowest she has ever been. It worries me. No wonder she is exhausted all the time.
Lily told me she was looking forward to coming home. She has been away for six weeks. A long time, for her. She was worried that the doctor might say she had to stay longer. But he was pleased with her. Even though he said it will take her some time to get her strength back.
And I talked to the physiotherapist today and a program of daily activities is in place for Lily to do with her carers. It gets her outside in the sun and allows her to keep in touch with the world. Her drives to the beach brighten her up. Once the drive is half way through often her carer gets two ice creams, one for Lily and one for the carer. They sit in the car and look at the sea as they eat the ice cream together.
The neighbours were eager to see Lily today, but she went to sleep in her bed as soon as she arrived home. So the neighbours understood that they will be able to see her and talk to during this week, when Lily is ready.
Tonight I helped dress Lily in her most pretty pajamas.
They are beautiful satin ones I bought for her in town. They are a soft green with cherry blossoms on them. Lily said she wondered if i had lost them, as I did not pack them for her trip to hospital. But once before one of her other favourite (English spelling again instead of USA spelling of favourite) pairs of pajamas went missing in a hospital. Even though everything I ever pack has woven labels with her name on each label. And sewn conspicuously on the inside of the collar. And I pick up and do all her washing for her. So I did not want to chance losing another favourite pair of pajamas in hospital.
Lily said 'pack them next time, they would not fit anyone else'. At least she has her sense of humour intact, (this is the last time I will mention that I use English spelling not USA spelling)
The first hospital Lily was in was great. Before that she had not needed to enter a hospital in decades. But the last three years have made up for her previous absence from a hospital.
But an ambulance cannot always take a sick person to a hospital of first choice. Often hospitals are full and will not accept more ambulance patients.
This most recent hospital was not our choice. Lily was so sick this time that at first my whole focus was on her.
It was only later I noticed things that were not as good as the first hospital that Lily and I think is the bees knees in every aspect. It is a wonderful hospital run by the Presbyterian Church and they do a wonderful job. The caring atmosphere pervades every level of staff. From the volunteers in the coffee shop right up to the most senior medical and nursing staff and everyone in between.
Over the last three years Lily has had so much medical attention. I think it has made me a lot more aware of what is good in a hospital (from the patient/client point of view) and what is not.
I like hospitals where there is a caring atmosphere. And there are little things that have an expectation that one will use a waterless cleaner. Expensive I know if everyone uses it. But how much more trouble is there if a sick person (whose health is already in poor shape) also gets an infection because someone failed to keep their hands clean?
And often one senses a hospital where everyone cares. Where everyone works towards common (postive) goals.
Versus this last one where there was a feeling that the staff were so stressed and so under pressure all the time. Lily even made the comment as she was getting better that, "there are not many staff here compared to the last place" and "I can hear the staff talking and laughing loudly, but they take a long time to come when I ring the bell." I can vouch for the last comment. One day I turned up and said that outside was a wonderful day and "would she be interested in a walk outside?" Lily jumped at the chance. We were away from her room for about fifteen minutes. Then we sat on the two chairs in her room and talked for about ten minutes. Total time 25 minutes. When we got back from the walk Lily did not go anywhere near her bed nor near the buzzer/bell that she presses to call a nurse. Lily needs help to walk even short distances, such as going to the bathroom. So it was agreed at the start that they would attend to her promptly.
At that point a stressed looking staff member burst into the room and asked 'what do you want Lily, you rang your bell?' I knew Lily had not rung the bell all the time I had been with her. And said so. Then the staff member admitted that she was busy and had not found the time to attend to Lily and that Lily had rung the bell 'about 25 minutes earlier'. It must have been at least 25 minutes earlier. I felt so sorry for the staff. It was clear that they need more staff. And maybe a kinder group of people at the top running the hospital. Because there is only so much staff can do in the allotted time. And if there are too many patients and too few staff then that is a recipe for disaster. The other thing that shocked me was that often when i arrived there was no water in the jug for Lily to drink. I always topped up her jug when I arrived. It turns out that what Lily has wanted I did for her. But of course I had no way of knowing she had run the bell not long before I arrived. And once I helped her she probably thought not again about the bell.

Lily is back

Lily was weighed yesterday. Before she left hospital. She commented that the lady who weighed her told Lily she weighed 37 k. I made no comment as there is no need to worry her. But it is not good.
Before she was sick she hovered around 53k. Then when she was very sick last time she dropped to 45k. Back then the doctor made some suggestions, and she has followed them. Anything to improve her appetite, rebuild her strength and physio to help the process. He suggested a bigger breakfast and sweets/dessert always after her evening meal. Plus drinks to help build her up. And he knows that I will sit with her for breakfast, before her carer arrives, and I go off to work.
Now that she is back I will get back to the fresh fruit salad I cut up for Lily in the morning. And her cereal with psysillium husks and hot milk and sugar. And her toast with honey. And the banana yoghurt that she loves.
We sit together while she eats her breakfast. Lily eats very slowly. So breakfast last about 45 minutes.
Lily loves dark chocolate Belgium biscuits and chocolates. When she was in hospital she asked me to bring some in as she thought the hospital biscuits were too hard. The doctor told her she can eat them any time she likes. They never make an ounce of difference to her though. And she likes to suck on barley sugar sometimes.
Her arms are so frail. But 37k is the lowest she has ever been. It worries me. No wonder she is exhausted all the time.
Lily told me she was looking forward to coming home. She has been away for six weeks. A long time, for her. She was worried that the doctor might say she had to stay longer. But he was pleased with her. Even though he said it will take her some time to get her strength back.
And I talked to the physiotherapist today and a program of daily activities is in place for Lily to do with her carers. It gets her outside in the sun and allows her to keep in touch with the world. Her drives to the beach brighten her up. Once the drive is half way through often her carer gets two ice creams, one for Lily and one for the carer. They sit in the car and look at the sea as they eat the ice cream together.
The neighbours were eager to see Lily today, but she went to sleep in her bed as soon as she arrived home. So the neighbours understood that they will be able to see her and talk to during this week, when Lily is ready.
Tonight I helped dress Lily in her most pretty pajamas.
They are beautiful satin ones I bought for her in town. They are a soft green with cherry blossoms on them. Lily said she wondered if i had lost them, as I did not pack them for her trip to hospital. But once before one of her other favourite (English spelling again instead of USA spelling of favourite) pairs of pajamas went missing in a hospital. Even though everything I ever pack has woven labels with her name on each label. And sewn conspicuously on the inside of the collar. And I pick up and do all her washing for her. So I did not want to chance losing another favourite pair of pajamas in hospital.
Lily said 'pack them next time, they would not fit anyone else'. At least she has her sense of humour intact, (this is the last time I will mention that I use English spelling not USA spelling)
The first hospital Lily was in was great. Before that she had not needed to enter a hospital in decades. But the last three years have made up for her previous absence from a hospital.
But an ambulance cannot always take a sick person to a hospital of first choice. Often hospitals are full and will not accept more ambulance patients.
This most recent hospital was not our choice. Lily was so sick this time that at first my whole focus was on her.
It was only later I noticed things that were not as good as the first hospital that Lily and I think is the bees knees in every aspect. It is a wonderful hospital run by the Presbyterian Church and they do a wonderful job. The caring atmosphere pervades every level of staff. From the volunteers in the coffee shop right up to the most senior medical and nursing staff and everyone in between.
Over the last three years Lily has had so much medical attention. I think it has made me a lot more aware of what is good in a hospital (from the patient/client point of view) and what is not.
I like hospitals where there is a caring atmosphere. And there are little things that have an expectation that one will use a waterless cleaner. Expensive I know if everyone uses it. But how much more trouble is there if a sick person (whose health is already in poor shape) also gets an infection because someone failed to keep their hands clean?
And often one senses a hospital where everyone cares. Where everyone works towards common (postive) goals.
Versus this last one where there was a feeling that the staff were so stressed and so under pressure all the time. Lily even made the comment as she was getting better that, "there are not many staff here compared to the last place" and "I can hear the staff talking and laughing loudly, but they take a long time to come when I ring the bell." I can vouch for the last comment. One day I turned up and said that outside was a wonderful day and "would she be interested in a walk outside?" Lily jumped at the chance. We were away from her room for about fifteen minutes. Then we sat on the two chairs in her room and talked for about ten minutes. Total time 25 minutes. When we got back from the walk Lily did not go anywhere near her bed nor near the buzzer/bell that she presses to call a nurse. Lily needs help to walk even short distances, such as going to the bathroom. So it was agreed at the start that they would attend to her promptly.
At that point a stressed looking staff member burst into the room and asked 'what do you want Lily, you rang your bell?' I knew Lily had not rung the bell all the time I had been with her. And said so. Then the staff member admitted that she was busy and had not found the time to attend to Lily and that Lily had rung the bell 'about 25 minutes earlier'. It must have been at least 25 minutes earlier. I felt so sorry for the staff. It was clear that they need more staff. And maybe a kinder group of people at the top running the hospital. Because there is only so much staff can do in the allotted time. And if there are too many patients and too few staff then that is a recipe for disaster. The other thing that shocked me was that often when i arrived there was no water in the jug for Lily to drink. I always topped up her jug when I arrived. It turns out that what Lily has wanted I did for her. But of course I had no way of knowing she had run the bell not long before I arrived. And once I helped her she probably thought not again about the bell.

Coming home

Today Lily is coming home.
Usually if Lily has been in hospital I spend the last day before she comes out doing a spring clean of her home. Because coming home from hospital can be a big thing anyway. Though if it were me I would want to see flowers. But Lily does not like flowers. I learned long ago not to bring flowers - because Lily would then put the flowers outside near the back door. Or be eager to throw the flowers out at the first sign the flowers were fading.

Yesterday I did attend a local neighborhood meeting on behalf of Lily. Local neighbours (English spelling of neighbours, not USA spelling of neighbours, apologies to those who think the spelling is wrong) of Lily.
These neighbours were debating the need for some changes. I did not enjoy the competitive one up-manship of some of the people there. Nor the clear agenda to impose some changes that the older neighbors were not in favour of.
It was as if some things had been well and truly agreed upon before the rest of the people arrived. Then the push to impose and stifle discussion was a challenge for me. I found the people with the clear agenda rude. There are ways to seek change and there are ways that are patronising, arrogant and too hasty and impatient.
But those with the agenda spoke over the top of anyone who dared to ask a question.
I asked a question at the meeting.
It was only a question, to help me understand.
It was not in support of one postion or another.
The man acting as chair started talking over my voice before i had finished my quick question. And poured some scorn on my question.

I know that I do not enjoy the company of ignorant rude people like that.
There was no openness. Instead there was a feeling that impatient people had already decided in advance that they would push through some changes. And then did not like it when it was clear they did not have the numbers.
I am glad these people are not my neighbours.
Who would want to live near stuck up arrogant rude people like that?
Not me.
I like a kinder community. One that respects people of all ages and all incomes. It was clear that the much older people were resistant to spending up big on projects that might take several years to finish.
And Lily had already made it clear to me what she wants, when she asked me to attend as her proxy.
After the meeting I went to Lily's place to file the papers from the meeting. And I resisted the desire to start a spring clean.
But maybe I am getting more relaxed with the need to try to make everything perfect?
Usually I do go overboard and clean.
So this weekend I spent time doing some nice things that I will be less able to do this week.
And last night I had a great one hour chat on the phone with a distant friend from my school days.
It was good to catch up.
And my friend's call was timely.
Because if the call had to me, later this week, when I will be caring for Lily in the evening, then things would be different. After Lily is back in her home.
Then Lily would have continued complaining, in the background, if I was on the phone more than a couple of minutes.
Note, as a relative I do the caring for free.
It is not as if the time I spend with Lily is as a paid professional carer. I just care as a relative. Carers are expected to do as much and more as a paid carer, but often they are taken for granted by everyone around them. And they do it for free. And sometimes carers are even out of pocket with the caring role. Many times when I pick up things for Lily I feel churlish to ask for a receipt. But unless I get a receipt then there can be no reimbursement to me. So I must ask for receipts. But sometimes one forgets. Or it seems unreasonable to ask for a receipt for one mango. But it all adds up. Lily loves mango!
So there are times when I feel as if I am treated as the resident Cinderella by paid carers who do come in to do the caring, when the primary carer is absent.
I get quite used to notes from carers left for me. Things for me to do, such as, "Lily needs this/ Lily will have to ..... ,or /this needs replacing/This is running out/ Could you get this?"

And I need to make sure I put away anything that is mine.
I have brought items that are mine to Lily's home, for me to use, for me. It is for when I stay overnight at Lily's. It makes sense to leave some things at Lily's. Otherwise I would forever be carrying an overnight bag withe me.
Examples being my hairbrush and my toiletries. Often I find my lovely bath products have been used and put back on Lily's side of the vanity.
Or my hairbrush has been removed from the bathroom and put in Lily's drawer. Or my books have been removed from the side table and put into Lily's bookcase.
As if 100% of anything in the home of Lily is Lily's. Except the paid carers do know that I stay overnight.
At least my clothes are safe since I am a lot taller than Lily.
Sometimes it makes me feel like I am the invisible carer.

Lily can become over anxious if the focus is not on her. Goodness knows what it is that Lily thinks, but I know that if I am at Lily's place and my mobile rings then that, for Lily, seems to be an unwelcome intrusion.
So my friends now are more likely to meet me for lunch rather than call. It spares them the comments in the background. Comments from Lily such as, "who is it/what do they want/how long are you going to talk?" or the more usual request, such as "I need your help now/help walk to the loo, or walk me to my bed. I need to lie down now".
All this at the same time as a caller is trying to speak to me.

Have to remember to assert myself. And understand that one does not have to try to be perfect.

Caring never looks hard until you do it

Before I started being a carer I went to the gym four days a week. Went where I liked and when i liked. And if I wanted to stay back and finish a special job I could work long hours. Back then I could do what ever i liked when i wanted to. But all that changed in a dramatic way three years ago. And at first I thought it would only be for three weeks. Then maybe only for three months. And slowly it dawned on me that this job will continue while Lily is alive. So it could go on her years. Three years ago I know i was fitter. And that is also an issue I have to address.

I'm having a short break from caring because Lily is in hospital. Lily is my very elderly relative. She has always been an important part of my life. Lily had a child a long time ago, but he died. Her husband lost the will to live after that and he died, leaving her alone. Well not completely. She enjoys visits from relatives. Twenty five years ago Lily had a health scare and at that time the Doctor would not let her home unless she could nominate a person who would check up on her regularly. Lily asked me to be that person. She used to be very independent, but twenty years ago I noticed that she started to get a little more needy. Then after a health scare fifteen years ago Lily sought me out whenever she wanted something fixed or attended to. Then three years ago she called on me when she felt 'funny' as she put it. I took one look at her and called an ambulance. Just as well too. Because that was a tough challenge for Lily.
So Lily has had some serious health issues. She can be pessimistic - the glass is always half empty for her. And I've always been the complete opposite. . And says if she had a pinch of my optimism she might see things differently. I tell her if I had a pinch of her wisdom I would be a much better person.
She's been very sick this time, and on a drip, but finally is on the mend. But I know Monday will be full on. That's the day she gets out of hospital and comes home. I've visited her after work each day. Each day she is more worried and does not want me to leave. But the Doctor said she can't go home until she's had some physio. Until she can walk OK again. So everyday she has done her physio faithfully.

I let everyone Lily knows and sees regularly know where Lily's rehabilitation place was and I am very happy that a number of those people went to visit Lily. She liked getting those visitors. Ad I have let her know of all the neighbors who have asked about her.

During the week (when Lily is at her home) at her home Lily has carers who help her at different times in the day. Then at the end of the day i take over. So after work I make her tea, help her with things and in the morning I make her breakfast, talk about what is in the news and then i go to work. At weekends I can spend more time with her, and do the washing, cleaning etc. Oh, and I look after her garden (as well as my own garden irregularly) because looking after her garden is now too much for Lily. Though she loves her garden to look lovely.

And some times at weekends, I make some meals in advance so that I can get her tea ready more quickly at the end of the day, during the week days.
Lily lives so far away from me, and I do not drive a car, so that the only way I can assist her is to stay overnight most days. So my home does not get much love. And Lily complains that she is 'very worried' every time I do go to my place. Her over anxious outlook can be tiring.
But today there was no pressure. I just did things I wanted to do. This will be my last Saturday like this for a long time. So I actually got to spend an extended time in my garden. It felt so good. But because of the drought and the extra hot weather recently I counted all the plants i have lost while looking after Lily these last three years. I have to watch that I do not get sad, drained out and as pessimistic as Lily. I have to make more time to do something nice for me. Because caring is all about what has to be done next for the person. And their needs seem always more pressing.

I knew people who were carers before I ever became a carer. And I know I used to ask myself, 'why is that woman so tired?' Because I could not understand how hard caring can be.
Now i know. It is mentally very exhausting. And the person being cared for seems to get more and more needy as time goes on.
So my goal in the next six months is to find opportunities to do something nice for me in between working full time and looking after Lily. And find some opportunities to regain some fitness. And maybe very gently stand up to lily when i know she is twisting me around her finger. Though that last one may be too diffcult.