Chairs and Photographs

Now that's a different title isn't it but it sums up the last few days.

In spite of what Margaret said about Louis I took him in to visit her on Saturday and Sunday and she was really pleased to see him.  I also took in my external hard drive as Margaret's new TV had a USB connector and it was supposed to be possible to show JPEG images through it.   It was!  We have had several hours of slide shows with photos datng from 1918 upto last month.

The carers and RNs have dropped in to see some of the pictures and one from about 1970 got the most interest.

Margaret's Mum, Helen and Margaret.

They just loved the mini and the general comment was, "Look at those legs!".  Margaret just loved all the pictures of our pets from over last 50 years.  I am now adding photos from more recent events and we will have shows most days.

Their was one problem. The electrically assisted recline and lift chair which we had bought for Margaret had stopped working and even worse it failed to support her legs without being propped up by another chair.  The chair is nearly new but I had no warranty agreement and it would have to be returned to the supplier for repair.  On Sunday afternoon I decided to take in one of our reclining chair from home while the other was being fixed. 

First I had to get it out of the house and found that it would not fit through any of our doors without laying it on its side and wiggling it through the doorway.  Next I had to get it onto my trailer which if did using a sack barrow and laying it on its back on the trailer bed.  At the nursing home I got it on the sack barrow and wheeled it to Margaret's room where one of the male carers assisted me with swapping the chairs over and getting the broken one back on the trailer.  I didn't stop but just left Margaret to be sorted out by the carers.  When I went in on Monday she was lying in the replacement chair and fast asleep.  When she woke she said how happy she was having her "own" chair back.  She does not want me to bring the electrically assisted one back!

Actually the carers told me that they like the manually operated ones so does anybody want a slightly used, broken electrically assisted recline and lift chair at present lying on my trailer in the garage!!

On Monday and Tuesday Margaret has been much the same.  That is very weak and still requiring Oxygen assistance for breathing.  The pain control is being better managed and she appears to be more comfortable.  Her GP visited on Monday and was pleased to say that she hadn't deteriorated but still said that she could go into a decline quite suddenly.  In the mean time Helen will be here on Sunday and we are planning my birthday party which will be in Margaret's room next Tuesday lunchtime when we will also watch Australia's Premier horse race The Melbourne Cup.  Louis will also attend and visitors are welcome.

Still Holding On

I visited Margaret on Sunday and took Louis in with me.  Margaret was able to feed him some treats but for the most of the time he sat, on his lead, next her doorway to the hall.  Here he could see the carers and other staff about their business and received many pats and cuddles.

Margaret was much the same with the exception that she had been given an enema and her constipation cured.  I wish all her problems could be cured as easily.

On Monday  I visited on my own using my little folding bicycle.  Margaret was not feeling too well so I just sat with her for a couple of hours in the hope that her GP would visit which he didn't.  Margaret was a bit upset as she claimed that he told he he would see her on Monday.  He didn't visit in the evening either.

On Tuesday I went in by car which was a good thing  as her TV had broken down leaving her just sitting and staring at nothing. 

I  went to the local large TV retailer and bought her another. I spent the rest of the visit setting up her new TV.  I don't think that she really understands the programs but likes to have it on.  During the visit the RN on duty dropped in to give Margaret her medications and offered the opinion that Margaret's breathing problems were caused by too much oxygen drying out her airways.  I thought that this was a bit odd as Margaret literally gasps for breath following any exertion or even using a straw to drink but kept quiet as I would talk to Margaret's GP in the next day or so.

I visited Margaret early on Wednesday and took Louis in with me.  I was going out to my computer club meeting in the afternoon.  Margaret looked in a lot of discomfort but the RN said that she looked OK to them.  While there I checked to see if she was still using painkilling patches, Norspan.  I found one on her back dated 31 August 2010 which, as they only lasted for seven days was a bit useless. I queried it with the RN who looked all through Margaret's record and she could not tell if she was having patches or not.  She could have morphine or Oxycontin as require but as she never asked she wasn't being given them.

Back at home I left a message for Margaret's GP who called me back later in the evening.  He would drop in and see Margaret on Thursday.   He had been intending to visit her on Monday but had been off work with an infection and was only just over it.

I visited at 12.30 pm on Thursday.  She was in even worse condition and in the end we got the RN to give her an Oxycontin which helped her settle down.  Just before I left A, her GP, dropped in.  He checked her lungs and was dismayed to find them still very wet and she will be on her large dose of Frusimide/Lasix for at least another week.  He also reinstated the patches and emphasised to the RN's that Margaret is critically ill with Pulmonary Oedema and was also in continual pain.  Their primary duty was to keep Margaret comfortable even at the risk of over dispensing pain killers.

Poor Margaret had told me earlier that she would never get out of "this place" and I promised her that if she got well enough I would take her out.  I mentioned this to her GP and he said that it would be very unlikely that she would even improve that much.

When I phoned Helen in the evening we agreed that in order to give Margaret something to look forward too that we should arrange a birthday party for me on the 2nd November.  I will get Helen up to stay for another couple of weeks.

I am off to tell Margaret this news in a little while.  She doesn't want me to take Louis is as she gets upset as she can't really cuddle him. 

I think that the problem with Margaret and the RNs is that she is now in the Dementia wing, where she belongs, but they had forgotten that she was originally in the High Care wing and still needs the higher level of nursing for her illnesses.  Most of the other dementia residents are reasonably fit.

"Holding the Line"

The somewhat militaristic quote is from Margaret's GP, A.  Since Wednesday Margaret has been much the same.  Her legs and arms are not as swollen but her body is and she still has pulmonary oedema requiring her to supplement her normal breathing with oxygen,  I visit everyday and sit with her for a couple of hours.  She doesn't speak much so I normally find an old movie on TV and watch it with her.  Does anybody remember the magnificent dancing in Seven Brides For Seven Brothers?

One day Margaret actually had a good grin on her face following a little incident in the ward where her room is.  It is a dementia ward and there are some harmless people who just wander up and down.  Some say hello but others wander in silence.  Like Margaret they are all washed and dressed every morning and can watch TV, stay in their rooms or just wander.  On Friday we heard from outside in the corridor, "No John (not his real name)  don't take your clothes off!"  Followed a little later by the concerned carer, "Go back to your room and we will put some clothes on you."  Margaret was intrigued and asked what was going on so in my usual silly way I replied, "John has just heard about the hot young thing in Room 6,"  Margaret asked, "Whose room is that?" and when I said, "Yours!" she broke into a huge silly grin.  Somewhere in her head humour still remains in spite of all her suffering.  John was dressed in track pants when I left.

On Friday I caught up with Margaret's GP when he made the quotation in the title.  With the huge dose of Frusimide she is having her pulmonary oedema is staying constant although fluid has come off her legs and arms.  She will remain on the frusimide at the same level until she can get by without oxygen support.  He will then gradually reduce the dose until he can find a level where the oedema is just held in check.

Yesterday I took Louis in to visit Margaret and found her in bed.  She has now developed severe constipation and is having enemas to try and get things moving.  I shall visit later today.

Margaret is Holding On

On Saturday I took Louis into see Margaret.  She was in her chair and very weak.  She held out her right arm to pat Louis and he put his paw and just rested it on her arm.  He did not scratch but his rough pads just tore Margaret's skin.  I told the RN that I wouldn't bring him in again but was told that it is better for Margaret that I do and that her skin is so fragile that they have caused minor tears just supporting her.

 Margaret waiting to be patched up.

 

The skin tear.

It is now noticeable that Margaret does not sit up straight any more but leans to her right.  It is probable that she has had a mini-stroke as the right side of her face has also drooped a bit.

After dressing the arm Margaret was able to pat Louis and give him some treats he spent the next two hours just lying next to her chair except for when Margaret and he needed a comfort stop.  Margaret was having difficulty breathing and swallowing and was still on oxygen full time.

I visited with Louis on Sunday and Margaret was much the same.

On Monday I visited and stayed a little longer to try and catch her Doctor who hadn't seen Margaret since Friday evening and in my opinion she had deteriorated since then .  He actually visited in the evening and increased Margaret's Frusimide to 280 mg a day, the most she has ever been on.

On Tuesday the RN told me that she was very lethargic but quite happy.  They were having to crush her medication and serve them up in what looks like Yoghurt.  I stayed for a couple of hours and Margaret dozed on and off in front of her TV.  We had short chats about Louis and friends who had sent their regards and support but mostly she just sat there.  She is still leaning to the right and she dribbles a bit down the right side of her face when she drinks.

I shall take Louis in after lunch and hope to meet her GP if he makes it.

Margaret is Improving - Sort Of!

I have visited Margaret every day this week.  There has been some limited improvement in Margaret's fluid retention and the pulmonary oedema has reduced over the last day which is a relief as even with oxygen she was gasping for breath most of the time.  I managed to talk with her GP last night after he had visited her and he thinks that she will have to be on diuretics for some time yet.  Here is where the problem for Margaret lies.  She started on 120 mg of Frusimide a day last Friday which I am told in a significant dose but on Tuesday it was increased to 200 mg a day.  It was not until yesterday, Friday, that the fluid level in her lungs began to reduce.  She will be on 200 mg a day until her legs return to near normal and her lungs are clear.

I asked the GP about the effect this large dose of Frusimide would have on her kidneys and he replied that he did not know nor was he going to take blood tests to find out.  Until her lungs were clear she was still in danger of congestive heart failure.  I  should accept that the main object of the medication is to make her more comfortable and it is not a cure.  The underlying cause of the fluid build up still exists,  she is already in chronic renal failure so the outlook is still grim but Margaret should be more comfortable.

Margaret has not been eating very much this week but the fluid around her waist makes he look very fat and her skirts are getting tight.  She spends most of the day in her chair in front of her TV which is normally on.  Her confusion has returned and she is always asking me what our phone number is and I write it down for her.  She also is fascinated by the controller for her chair which has two buttons, up and down.  She tells me that she doesn't know how t it works and she always gets me to make small adjustments to the angle of her back or foot rests.

She loves having Louis in to visit her but because she is too ill to take out for a walk in her wheelchair Louis has to sit next to her for two hours and gets bored so I don't take him in everyday.   Even yesterday her legs went beetroot coloured when she was taken to the toilet for 10 minutes and they were not elevated.

I shall take Louis in today if the rain eases up.  We have had 250 mm (10 inches) overnight and he got soaked on his early morning walk. (ABC News report)

Margaret has Problems

This is a difficult blog to write as the future for Margaret is on a knife edge but first lets go back to last Monday when Helen made her goodbye visit to Margaret.  She stayed over lunch and caught the 3.00 pm bus home.  I think that she cried all the way home as we both know that Margaret is in a bad way.  We spent a quiet ev evening together and went to bed early as Helen was catching the 2.45 am, Tuesday, shuttle bus to the airport.  I got up an saw her off.  She was clutching a handful of tissues.

At 11.45 am Helen phoned to say that she was home back in the Adelaide Hills so I was able to let Margaret know that she was safely home when I visited at 12.30 pm with Louis.

Margaret was in her big chair with her feet up as her legs were still very swollen but she was quite bright and had eaten some lunch.  I had taken in the remains of the bottle of wine which we had on Sunday and Helen had forgotten to take in on Monday.  There was enough for a good glass full for Margaret and a small glass for me.   It was quite a good visit with Margaret chatting away as she had been to concert in the dining room in the morning.   I left just after 2.00 pm and left her watching TV in the knowledge that I would visit again on Thursday .

On Wednesday I cleaned up the house and mowed the lawns which had got in a bit of a mess during Helen's visit.

I visited at 12.30 pm on Thursday and Margaret was in a good mood and I took her and Louis for a walk around the block.  She was grumbling a bit about wanting to see her GP and I agreed that, if he didn't see her on Friday, I would phone him.  We agreed that if Margaret was OK we would take the bus to Tewantin to have lunch at the RSL.

On Friday I took a day off from visiting as previously agreed with the home.  Helen phoned her and was concerned that she didn't sound OK and was in some pain with her swollen legs.  She phoned Margaret's GP and left a message  and was assured that he was visiting Friday evening and would let me know if there were any concerns.  As I received no phone calls I assumed that Margaret was OK.

I turned up at 11.00 am in good time to get Margaret ready and in her wheel chair to catch the 11.30 bus into Tewantin only to find Margaret tucked up in bed on oxygen.  I sought out the RN who said that Margaret's GP had visited the previous evening as promised and found that Margaret was in a bad way.  The fluid had spread to her lungs and she was literally drowning.  He got her on oxygen and reluctantly put her back on diuretics over the weekend as he was going away.  Apparently Margaret was a little better in the morning but if she sat up for any time her legs were going purple  so she was being kept in bed with her feet and head elevated - in a U shape.  She was upset that I could not take her out but her carers didn't even like taking her to the toilet as she was very weak. her legs swelled up and she became very breathless.

She continued like this over the weekend.  She had also stopped eating once again.  Yesterday Morning I finally got a phone call from Margaret's GP.  He had been trying to contact me over the weekend but had the wrong number, more later.  He repeated what the RN had said and added that there was a strong chance that the diuretics would cause Margaret's kidneys to fail once again.  I aske that if they did that Margaret should remain in the Nursing Centre to quietly slip into a coma and die peacefully.  He said that that was his plan but he hadn't given up on her yet.

I met him at the Nursing Centre at lunch time.  He said that Margaret was a little better but still in some distress.  He would give it another day and if things hadn't improved would increase the diuretics and take a chance with her kidneys.  Apparently death from acute kidney failure with the correct palliative care is much better that dying gasping for air.   Margaret has also developed another Urinary Tract Infection, UTI, and in is on antibiotics and morphine is also being given which should improve her breathing while the diuretics kick in . He is visiting her again today.  I stayed with Margaret for couple of hours.  She is very grumpy (who wouldn't be?)  and I assured her that I would visit every day until she is stable once again.

The story about the phone number was that her GP had visited her on his way for a weekend trip.  He had asked Margaret for our home phone number and she had got it wrong!!  At present she is quite normal with no hallucinations but still has memory loss problem.  I expect the UTI and morphine will bring back the confusion for a while.

I shall take Louis in after lunch.