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. 

An Outing For Margaret

The last week has been a mixed one for Margaret.  She started by being moved to a new room which, unfortunately is back in the High Care Dementia Wing.  The room itself is very nice and is a single room where she will probably stay.  This has meant that we were able to move in a few personal items such as her own TV and DVD player.  She has room for another armchair which makes it more comfortable for us as we usually use the wheely walker or wheelchair to sit on.

Her mobility appears to have decreased and she has to be helped in and out of her bed or big armchair.  She rarely uses her wheely walker as the carers prefer her to use her wheelchair.  More alarmingly her feet and legs have become incredibly swollen and fluid is also collecting around her lower abdomen.  She gets very short of breath following even light activity.

Notwithstanding all this she is much more settled.  She still grumbles about the home, her carers, me and of course Helen but she appears to accept that this is where she lives.  We have taken Louis in to see the new room which cheered her up.  One noticeable thing is her lack of concentration.  We have tried to get her to watch TV or a DVD with us and the carers also help her to select her favourite programs but she loses interest after 10 minutes or so and wants it switched off.  She spends most os the time just sitting and dozing in her chair.

Helen has visited everyday but I have decided to visit on Tuesday,  Thursday, Saturday and Sunday which gives me three full days a week for my own activities.  This has been recommended by Margaret's GP and the carers who tell me that she is much more settled.  I don't know what she will do after today as Helen flies home early tomorrow morning.  We shall see.

Yesterday was Margaret's seventy fourth birthday which she had forgotten.  We took in cards, flowers and some small gifts.  We suggested that she might like to go out to lunch which she wanted to do.  We decided to try the bus to our local shopping mall, Noosa Civic,  where we hoped to get lunch at the bistro located there.  The carers got her into her wheelchair and loaned us the lifting belt in case Margaret had to go to the toilet while she was out.  Civic has great disabled toilets and we would be able to take the wheelchair in to them and using the belt transfer her to the toilet and back.

We caught one of the small buses to Civic.  The driver put down the ramp and I was able to wheel Margaret straight into a wheelchair space by the door.  Unfortunately I had her facing backwards and she grumbled all the way to Civic which was only a ten minute ride.  I sat behind her and held the chair steady. 

At civic we found the bistro closed so went and got lunch at the Coffee Club.  Margaret had "all day breakfast",  I had a beefburger and Helen Calamari.  The Coffee Club is not licensed so we drank tea and coffee.  We cut up Margaret's food for her and had to feed her her fried eggs as she doesn't have the motor skills to use her fork with slippery things.  She just used her fingers to eat her bacon and actually ate a full meal for the first time in months.  She enjoyed watching the other shoppers walk by while we ate.

Afterwards we toured the shops and bought her a new skirt,  her trousers are too difficult to manage.  We also bought a bottle of wine to celebrate her birthday back at the home.  We caught a much bigger bus home and I set her up facing forward which she preferred.  Helen sat behind her steadying the chair.

Back at the home we all had a drink of Chardonnay which Margaret had chosen.  The carers settled Margaret back in her chair and we left her sipping on anther glass of wine when we left.  She was very tired and her feet had swollen even more while she was out but she was very happy.

Helen and I were both so happy that we now know that, while her health holds out, I can take Margaret for brief shopping or lunch trips using the bus.  The drivers were terrific and helped me with the chair.

Helen is making her final visit to Margaret today before she goes home tomorrow.

Helen helping margaret with her lunch

Margaret watching the other shoppers walk by.

A satisfied Helen

Margaret on the bus being steadied by Helen

Helen and Margaret enjoying their Chardonnay while admiring Margaret's flowers.

Home Again

I spent Friday morning exploring Bargara and Bundaberg.  The former is a small seaside town which is about to be developed.  There are several 5 or 6 story unit blocks just finished or under construction and on the outskirts of town is a new shopping centre with a Woolworth's Supermarket.  Bundaberg is quite a big old fashioned town with a strip shopping area in its CBD.  There appears to be only one really large store, a Target.  I spent the afternoon resting and surfing the web before having dinner at the hotel.  I watched a bit of TV before having an early night.

I left before 8.00 am on Saturday to drove home.  It was the first day of the Queensland School Holidays and there was plenty of traffic in both directions.  There was also a fair number of large trucks heading to Brisbane which tend to tail gate small cars such as mine travelling at the speed limit.  I think it is intimidation and it scares me.

I got home at 11.15 am  and after a snack Helen and I took Louis to visit Margaret  after lunch.   She was in a nice mood but told me that Helen had not come home the previous night.  I can still do no wrong as poor Helen gets all the flack for imagined transgressions.  We stayed for a couple of hour before we returned home and I had an afternoon nap.

Sunday was Louis' fifth birthday and we organised a picnic in the Nursing Centre's little courtyard of the main dining room.  We had a variety of snacks such as ham, tomatoes, cheeses, pate (3 types) and of course Margaret's favourite liverwurst  washed down by Champagne (local imitation variety) .  Louis loved the ham and had a great time.  Margaret also enjoyed herself and the RN and carers dropped in to wish Louis a happy birthday while also having a share of the snacks.  The good thing was that Margaret ate quite a good meal.  She has been eating very little over the last week or so.

After the picnic we took Margaret back to her room and the carers got her back in her chair for a rest.  We left about 2.00pm.

Sunday was supposed to be a special day as it it was Margaret's and my 52nd wedding anniversary.  We had intended to take Margaret out to lunch using either the bus, which has a ramp for wheelchair access, or the special Access Cab.  The carers were in on the plot and made sure that Margaret kept her feet up to minimise the swelling and stop the leaking.  This had succeeded but when Helen rushed ahead of me to make sure that Margaret had a card and gift to give me she found that Margaret had forgotten about the anniversary.  When I arrived she thrust the wrapped bottle of Red, which I like, and the card at me.  I gave her a card and a pot plant which we put on the table next to the window and in full view from her chair.

Unfortunately Margaret was not up to coming out with us so we brought lunch to her.  I went home and got another bottle of wine and ordered her favourite Indian Meal from her favourite restaurant.  I was back within 45 minutes and the carers had provided glasses, cutlery and plates so we had an impromptu Anniversary party in Margaret's  room.  She was very loving to both of us and we left her to rest after a couple of hours.

Over the last week she has settled very well and does not ask to come home.  In fact she calls her room home and she actually believes that she owns it and that Helen and I live somewhere else in the building.

We have decided that Helen should go home after Margaret's birthday which is next Sunday when we will try and take Margaret out for lunch.  Helen is booked home on the 28th September.

 

Louis at His Party

Margaret at Louis Party

Helen at Louis Party