Saturday, October 31, 2009

The Pathology Results

Yesterday we made it to Margaret's GP to the pathology results. They weren't very encouraging, while not in failure, her kidney function had deteriorated since she left hospital just over two weeks ago. Her Doctor has ordered new blood tests for Monday and is forwarding the results to the Specialist at Noosa Hospital who normally cares for her. We will know the results next Tuesday. He also said she should continue to use the patch to alleviate her pain and keep the Prednisolone at 20 mg a day even though it increases her confusion. She was also to maintain her Frusimide at 80 mg a day.

During the consultation Margaret went off on a tangent asking the doctor, " If it ain't Boeing are you going?" A. was confused until I pointed out that Margaret had been watching a TV documentary on the latest Airbus Software problems where an Airline Pilot used this phrase.

Apart from this the rest of the day was fairly quite. Margaret rested up until dinner time while I walked Louis and watched TV with me afterwards. She was very sleepy and not really following the program, Midsomer Murders. After it finished I helped her to get into bed and she was asleep by about 10.30. I finished my book, The Persimmon tree by Bryce Courtenay and was asleep by 11.30.

Up at 5.00 am and made Margaret a cup of tea as she was also awake. I took Louis for his walk and met J and her cattle dog/red heeler cross after the break in the country. We caught up with each other's news.

Margaret has some pain but I think the patch is taking the edge off it. Today is washing day with a little tidying up.

Friday, October 30, 2009

A Few Problems

Yesterday Margaret and I had lunch at the Noosa Bowls Club. Clubs in Queensland are a great source of good, reasonably priced food in high quality surroundings. Noosa Bowls Club is no exception. Margaret had Sizzling Garlic Prawns and I had Oven Baked Dory, one of my favourite fish dishes. Margaret had two glasses of sparkling white wine and I had a light (low alcohol) beer. After lunch we stopped off to get Margaret some fruit jellies.

We arrived home at 2.30 pm and I got Margaret into bed and settled down in front of TV to watch a program I had recorded the evening before. It only lasted 30 minutes and I was soon having an afternoon snooze when I was rudely wakened at 3.30 pm by Margaret rushing in with her wheely walker. She was fully dressed and had her sunglasses and hat on ready to go out. She told me that we had to go to the shops and was very angry when I wouldn't agree. It took some time to settle her down. She had forgotten about going out to lunch and didn't want to come out and walk Louis later in the afternoon so she stormed off back to bed.

Later I walked Louis and when I came home found Margaret in a great deal of pain. I assumed that she had cramps in both legs but it didn't ease off. I gave her two osteo paracetamol but these had no effect. She did not want any dinner but had some biscuits and I noticed that she had eaten nearly all the fruit jellies so I gave her her evening medication.

By about 8.00 pm the pains were much worse so I got her dressed took to her to the Out Of Hours GP service at Noosa Hospital. Here she was lucky to be seen very quickly by a pleasant and efficient lady doctor. She reviewed Margaret's recent medical history and examined her swollen legs. She thought that the first thing was pain management and asked me to cut a 10 mg Norspan Bupremorphine patch we had left over from a previous episode and apply it to Margaret's back when we got home. This would provide continuing pain relief. Next she thought the onset of pain may have been caused by a combination of fluid retention and reduction in Margaret's Prednisolone medication. She asked me to give Margaret an extra 5 mg when we got home and to increase her normal daily dose back to 20 mg. Finally because of her recent renal failure problems she authorised blood and urine tests to be carried out first thing in the morning and ask us to follow up with Margaret's normal GP next afternoon when the results came back.

When we got home I applied the patch and gave Margaret her prednisolone and tried to get her back to bed. She was having none of it and stayed up until the pain forced her to go and lie down at about 10.00 pm. I got her into her nightclothes and tucked her in but she insisted on watching TV so I went to bed and read for a while then returned to switch off her TV and light at 11.30 pm

Today I got up at 5.30 am and took Louis for his early walk at 6.15 am. I returned home at 7.00am and managed to get Margaret to give a urine sample and get dressed. We were at the pathology collection centre by 7.30 am and the blood collection was made by 7.45 am. The results should be ready by 4.00 pm today.

Back at home Margaret was still in pain but I think the patch was taking the edge off it. I phoned Margaret's GP's office and got a receptionist who did not know Margaret. They had no appointments with Margaret's normal GP but my GP could see her at 3.30 pm. I was a bit curt and asked what it the results were not in by then. Her reply was that she couldn't help that. I said that we may have to change doctors to get an appointment when they were ready or I suppose we could just sit there and wait till they arrived! Luckily I didn't quite blow my stack and accepted the 3.30 pm appointment. Five minutes later the receptionist phoned back and apologetically said that Dr A, Margaret's GP, had heard about Margaret's problems and had made space in his schedule for her at 3.00 pm. He would also check directly with the pathology service to get the results a soon as possible.

All there is to do now is to keep Margaret calm and comfortable until her appointment.

Thursday, October 29, 2009

A Shopping Trip

At about 12.00 noon yesterday Margaret was taken on a shopping outing for a couple of hours. These outings have been arranged with Bluecare by the Rehabilitation Hospital Occupational Therapist. While not free they are heavily subsidised by the Uniting Church and the Australian Federal Government. The client, in this case Margaret, is charged $5.00 an hour and 75c a kilometre for transport so about $20 for Margaret's trip today.

The carer had not met Margaret before and as Margaret had not really wanted to go out I was a bit worried that they might not get on. I shouldn't have worried S (other than family members all others mentioned remain anonymous) was a little woman with a bright friendly personality. She soon went through the preliminaries and packed Margaret and her wheely walker into little car. If needed, they would get a wheelchair from our local shopping mall, Noosa Civic.

After they went I changed Margaret's bed linen, vacuumed out her bedroom and cleaned her en suite following her little "accident" earlier in the morning. After putting the washing on I settled down for a light lunch and coffee while checking my friends posts on the Internet.

At about 2.00 pm S returned Margaret home. She asked me had Margaret any brain injuries as, while she had had a good time and was no trouble, trying to follow a conversation with her was impossible. I explained that the vascular dementia made Margaret lose track of what she was saying and it was not uncommon for Margaret to cover two or more unrelated subjects in one sentence. The only other comment was that Margaret refused a wheelchair and tore around Civic at high speed which was a worry as she is not very stable.

Margaret had used her time well and had bought a T-shirt and a nice top. I think that S was worried that Margaret may not have the money to pay but I had checked her purse first. Margaret also bought them coffee and donuts at Donut King.

S also made a fuss of Louis which went down well with Margaret. Previous contact with Bluecare had resulted in Louis being locked away as dogs were a no no. S said that she loved dogs and as he was restrained until he settled down he was no problem.

After S left Margaret commented that that silly woman walked all around Civic and didn't buy anything!!

Unfortunately Margaret had overdone it and her feet we even more swollen - I hope the extra Frusimide works soon. I got her into bed to get her feet up. If not in bed she rarely puts them up. Later she began to get pains in her legs and later severe cramps in her feet. These are really difficult to help her with. Because of her kidney problems most of her stronger pain killers have been discontinued so I gave her osteo paracetamol and told a little lie about their strength. After that she slept until dinner time.

I always have a nice piece of scotch Fillet once a week but Margaret wont eat steak and had some pork sausages with salad so I got the barbecue out and cooked outside. Margaret is on a chocolate ice cream trip at present and had one on a stick after dinner.

She caved in again about 8.30 pm and I tucked her in her snuggies and she was asleep soon after 9.00 pm with her bed mates.




This morning Margaret awoke at 5.00am cold and with pains in her arms and legs. I gave her more paracetamol and tucked her back in bed, this time under her duna. She slept until after I had walked Louis.

Later if she is feeling OK we will go out to lunch.

Wednesday, October 28, 2009

A Visit to the Doctors

Yesterday, after lunch it was time to make the deferred visit to Margaret's GP. This was timed for 2.45 pm but in the true fashion of busy GPs we finally got in at 3.15 pm meaning that we were glared at by the two patients who thought they should have been next.

Margaret was in fine form prattling to the GP about any subject except her current health situation. She was particularly pleased that she could spell "world" which, during a recent cognition test, she was asked to spell backwards! She had her blood pressure checked and her GP was pleased that she looked OK apart from the hyper behaviour which was probably caused by too many steroids, 20mg of prednisone each day which he reduced to 15 mg per day.

I pointed out Margaret's ankles which are both very swollen and painful due to fluid retention. This always presents a problem as the the main solution to fluid retention is Frusimide which is also her main medication which can cause renal failure. So we have to balance the treatment for excess fluid retention, which can cause strain on the heart, against the possibility of kidney failure. Actually there is no option but to increase Margaret's Frusimide from 40 to 80 mg per day until the swellings go away. This indicates that we are beginning a cycle of events which will probaly put her back in hospital in about six weeks - let's wait and see.

After dinner which was Margaret's latest favourite, Hawian Pizza, Margaret was very tired and wanted to go to bed. She took some time as there are now three Teddy Bears, the rag doll and an elephant on the bed. It was decided that the old Teddy Bear and the latest Paddington Bear could sleep on a pillow next to the bed. Margaret finally fell asleep about 9.30 pm. I switched of her TV and light then also had and early night.

This morning I woke at 5.00 am and after my shower was getting my breakfast when Margaret rolled in with her wheely walker saying she was cold. I made her a cup of tea and helped her back to bed. I persuaded her to get under the duna to keep warm (actually the thermometer in my bedroom showed 23C/74F which is not cold).

After my breakfast I took Louis for his morning walk. I like to get about an hour to myself each morning and Loius's walk is a good excuse. Normally I walk with J and her dog but they are away for a few days. After a little while it started to pour with rain so I cut the walk short to 30 minutes.

At home Margaret had somehow managed to struggle into her snuggie while under her duna and was now too hot. I made her her normal breakfast of two slices of toast, one with apricot jam and vegemite on the other. I had sorted out her medication (13 tablets and a sachet) and followed by Louis took them into Margaret. She shares the toast and vegemite with Louis who then barks in disgust while she eats the toast with jam on her own.

I also take the opportunity to update this blog.

At 12.00 noon today Margaret is being taken on a social outing by a Bluecare carer for a couple hours. This is the first time and Margaret is showing signs of not wanting to go but I think I should be able to persuade her. It will also give me a chance to tidy up her bedroom, change her bedclothes and clean up her en suite bathroom.


Louis looking sweet - actually he is a Rat bag

It is 8.00 am and Margaret has just walked through saying that she wanted to go shopping. I told her that she was going out a 12.00 but she appears to have forgotten. Next she gave a little cry and was of to her bedroom. Margaret is normally urinary incontinent and because of the Chron's she also has other "accidents". This was one of them and being very confused she needed help. I undressed her and helped her shower. She is now dressing but wants to put on the same pair of trousers that she has been wearing for several days - oh well I'll wash them later today. Next time I am shopping I will try and find a similar pair.

In the middle of all this Margaret grabbed her library book and literally yelled, " I told you she had lots of babies!". For the last few days she had been telling me that the fat lady, who I must know, had lots of babies but couldn't show me where. In the book the author had dedicated it to her, admittedly, numerous children. I am sure that Dannielle Steele would not like being called the fat lady!

Tuesday, October 27, 2009

A Normal 24 Hours

Yesterday Margaret was supposed to visit her local GP for a weekly check up but this was canceled due his own illness so we are rescheduled for this afternoon. This caused Margaret some problems because twice during the day she got fully dressed, put on her hat and pushed her wheely walker through the house announcing that she was going out. She knew that she had had a doctor's appointment but with its cancellation had not been able to understand that there was no reason to go out. After a little while she settled down after I said that we would go for a walk with her little dog, Louis, later in the afternoon. I like to rest after lunch as I usually do the housework and shopping the in the morning.

Our afternoon walk was a success. I got Margaret in her wheelchair clutching an umbrella as storms were forecast and I stuffed a waterproof poncho in my hip pocket. We set off with Louis on his lead being held by Margaret and had a three kilometre walk around our local estate. We finished up in a park on the way back where the local dog walkers can let their dogs socialize off the lead. Her we met Joy and Bill with their neighbor's dog Buffy. They have looked after Louis and walked him on several occasions so we stopped and talked for a while while Louis and Buffy played. Soon we were joined by several other dogs and their walkers and Margaret enjoyed a nice social chat. We got home before the storms broke.

Back home I cooked dinner - Margaret's favorite beer battered fish and salad. After I cleared up we sat and watched TV. Margaret watches a lot of television but doesn't remember too much about the shows so she was very pleased when a repeat of Dr Who came up on ABC2. When it ended she asked when it was going to start. In this episode, Blink, the Doctor plays only a minor part as others try to save him being trapped in 1969.

Now it was time for bed. Margaret was tired and confused. I had to supervise her night time medications, sort out her nightclothes and get her settled. This took about forty five minutes as she was worried about our daughter, Helen, back in South Australia. Finally she settled lying on top of her duna wrapped in two snuggie's which was her last "rational" purchase from the TV. I went to bed and after reading for a little went back to Margaret's room and switched of the light and TV before getting to sleep at 11.45.

This morning Margaret was awake, when I got up a 5.00 am, feeling cold - it was actually quite warm but her internal thermostat doesn't register properly. She told me that she had got up early to find her big Teddy Bear and had ended up in my bathroom before returning to bed where he was hiding all the time. In the last two weeks Margaret has become more and more childlike and takes two Teddies and a Rag Doll to bed; they make up a lot of Margaret's conversation. One thing about her dementia is that she appears to have passed through the aggressive stage and is quite sweet.

It is now just after 9.00 am, Margaret has had her breakfast and morning medications (11 tablets!) and I am just about to start a few chores while things are quiet.

Monday, October 26, 2009

Introduction

Where do I start?

Margaret, my wife of over fifty one years, returned home from hospital two weeks ago. She had had several falls over a short period culminating with a trip to our local hospital's emergency department where I wished her a happy birthday at 12.00 midnight on the 26 September.

In hospital, scans and tests showed that she had had two significant strokes in the last couple of weeks which would have affected her balance. She had two compression fractures of the spine as a result of the fall and more importantly she was suffering acute renal failure probably triggered by a urinary tract infection.

It took almost seven days to get her kidneys functioning properly. After seven days she would have needed dialysis which, due her poor health, she was not a good candidate for.

She was then transferred to a rehabilitation hospital where she was taught how to use walking aids such as a stick and, what we call, a wheely walker. After ten days I was asked what I wanted for Margaret.

Thed hospital's preferred option was to place Margaret in a nursing home as a medium high care patient as the list of her ailments included:

  1. Chron's disease now in remission but the root cause of all subsequent problems as the main treatment over the last 40 years has been steroids to reduce the bowel inflammation. These have now destroyed her immune system, stopped her adrenal glands from producing cortisone and resulted in spontaneous bruising and bleeding.
  2. Cardiovascular problems causing numerous mini strokes and the two significant ones mentioned above.
  3. Renal Artery Stenosis which with the cardiovascular problems has caused pulmonary oedema and congestive heart failure on several occasions.
  4. Osteoarthritis of the knees and spine aggravated by osteoporosis and made worse by the continuing treatment by steroids.
  5. Finally vascular dementia requiring almost full time supervision as Margaret has little short term memory and forgets times, dates and what medication to take.

My response was that if Margaret could live safely at home she should come home and I would continue to be her carer. Earlier this year, following another stay in hospital, Margaret spent several weeks in a retirement home to give me respite and rest while I had surgery. She was very unhappy in spite of the homes being excellent places with dedicated carers so I want her to live at home as long as possible. As this, to some extent, depends on my personal health and well being I have decided to blog about my day to day experiences and emotions as Margaret's carer.


Margaret in 1957