After Margaret's very unhappy and confused start the rest of Wednesday went quite quietly until after dinner. We have for many years been steady drinkers of Australian cheep wine but since Margaret's illnesses have progressed we have cut back quite a lot. Normally we share a bottle of wine over dinner and watching TV afterwards. This evening Margaret wanted more wine and I said that she had had her normal amount and she got very upset. First she called me a liar and other less complimentary things and of course Mr Cool here did his block. Margaret ended up raiding the fridge and filling her glass from the cask of white wine, which we use occasionally, spilling a large quantity on the floor and leaving it for me to clean up!. I told her she was on her own and stormed of to bed. Of course I had to go back and sort out Margaret's medication. Anyway we retired to our respective bedrooms not talking. Margaret slammed her door shut but I left mine open to make sure she was OK.
In the morning her door was still shut so I had my breakfast and took Louis out for his morning walk. When I got home Margaret wheeled herself into the kitchen and proceeded to make her breakfast but nearly lost the lot when she tried to wheel it back to the bed room. I carried her tea, water glass and medications back to her room but she was still ignoring me.
I went shopping and when I was out bought her a large hazelnut milk chocolate bar. On return I offered her morning tea and a biscuit which she refused. I was still upset and feeling very depressed. These arguments really get me down so when I have my morning coffee I had four big chocolate biscuits. I spent the rest of the day resting and watching TV - the Winter Olympics and Australia winning a Gold Medal. I cooked sausages and mash with onion gravy and green beans and peas. Margaret was not hungry and ate a little mash and half a sausage. Louis has sausage and mash for dinner today.
Afterwards I offered Margaret her chocolate bar but she would only have a small piece so I ate about half of the bar. Fortunately Margaret's mood improved and although she went to bed early she was quite quiet and friendly.
I should point out a couple of things. Margaret's tolerance to alcohol has dropped considerably since her illnesses have got worse and she becomes aggressive and has a tendency to fall over more frequently. I restrict my intake to the same amount as Margaret. I also have Type 2 Diabetes which i manage by diet and exercise which Louis helps out with. Four big chocolate biscuits and half a large chocolate bar are more that I have eaten in at least for years and total more that my normal years intake. My blood sugar readings weren't too bad this morning considering.
When I think of chocolate binging I think of Dawn French as the Vicar of Dibley going on a chocolate binge after her boyfriend dumped her. I think it did help a bit with my depression.
Today Margaret is back to normal so we will probably go out to lunch later.
Friday, February 26, 2010
Wednesday, February 24, 2010
Margaret has me Stumped
Yesterday I had a bit of a whinge about Margaret being unhappy and taking it out on me but this morning I saw how desperately unhappy she is.
I get up early, shower, shave and have breakfast before checking on Margaret then taking Louis for his morning walk at about 6.00 am. This morning Margaret was sound asleep so I left her and went out to meet J and her dog Jack for our morning walk. When I got home Margaret was lying on top of her bed in tears. I tried to comfort her but all she could say is that she wants to go home. After 51 years of marriage and living in this house for over 12 years which is longer than we have lived anywhere else I thought this was Margaret's home. It appears that in Margaret's confused mind there is a place that is really home to her.
I managed to give her some comfort and Louis jumped on her bed and laid beside her while I got her breakfast which Louis shares with her.
Yesterday Margaret's GP explained that while her blood tests were holding steady the continuing increased levels of toxins in her blood would be exacerbating her confusion and causing other side effects such as itching skin and watery eyes. These will get worse over time and she will continue to have blood tests every two weeks from now on and when the kidney function drops below a certain point she will have to go into hospital for hospice type care. As I have said before dialysis is not an option.
In the mean time I am determined to try and help Margaret feel that she is at home.
I get up early, shower, shave and have breakfast before checking on Margaret then taking Louis for his morning walk at about 6.00 am. This morning Margaret was sound asleep so I left her and went out to meet J and her dog Jack for our morning walk. When I got home Margaret was lying on top of her bed in tears. I tried to comfort her but all she could say is that she wants to go home. After 51 years of marriage and living in this house for over 12 years which is longer than we have lived anywhere else I thought this was Margaret's home. It appears that in Margaret's confused mind there is a place that is really home to her.
I managed to give her some comfort and Louis jumped on her bed and laid beside her while I got her breakfast which Louis shares with her.
Yesterday Margaret's GP explained that while her blood tests were holding steady the continuing increased levels of toxins in her blood would be exacerbating her confusion and causing other side effects such as itching skin and watery eyes. These will get worse over time and she will continue to have blood tests every two weeks from now on and when the kidney function drops below a certain point she will have to go into hospital for hospice type care. As I have said before dialysis is not an option.
In the mean time I am determined to try and help Margaret feel that she is at home.
Tuesday, February 23, 2010
Margaret is Unhappy
I suppose the title is bloody obvious but I feel Margaret has become more and more depressed over the weekend.
Friday lunch was a letdown. The Bowls Club has decided to limit its menu to a few simple dishes at a rock bottom price with a few more expensive specials. Neither menu included Margaret's favourite, Sizzling Garlic Prawns. We decide to go to another restaurant near the river called Maddisons. Here were had a fairly expensive meal with Margaret having a chicken on a Turkish bread roll while I had fish and chips. At least they were nicely presented and well cooked.
The rest of the afternoon Margaret spent resting but she woke up hungry so I made her, the old standby, cheese and tomato sandwich followed by a fresh peach. Margaret did not want to stay up and went to bed early. At about 10.30 pm I looked in on her to find her sitting up on the side of the bed. She was quite distressed and said that she couldn't get to bed properly. I managed to straighten up her bed and get her to lie down but she took some time to go to sleep again.
On Saturday Margaret woke up in an upset state. She is becoming more and more confused about what day it is and was worried that she was missing some appointment or other. She relaxed when I told her it was Saturday and that she could relax all day.
Saturday looked like being a fine day so I decided to only do the washing and spent the rest of the morning mowing the lawns and tidying up the garden. Margaret got quite upset with the noise of my little push mower which is really quite quiet and slammed her bedroom window shut. I split the mowing into two periods and had morning tea in the middle. Margaret wouldn't talk to me nor have a cup of tea.
After finishing the mowing and a couple of loads of washing I asked Margaret what she wanted for lunch and she said that she didn't want anything. Apparently she had had an "accident" which she had cleaned up but she still had pains in her tummy. I asked if she had diarrhea which has been getting recently. She confirmed this and I gave her some Lomotil to settle he tummy down. These are prescribed for this sort of event but have to be used sparingly after diarrhea. I managed to get her to eat a sandwich with Liverwurst and tomato and she rested for the rest of the afternoon.
Margaret had said that she wanted a portion of cold roast chicken for dinner with salad and fruit so I had bought half a roast chicken from the local supermarket. Margaret chose the breast and then after eating the wing left the rest! Louis had the rest the following day for dinner - have I said that he is getting fat?
After dinner Margaret again went to bed early has she still wasn't really talking to me. I managed to delay her taking her tablets until about 10.30 pm which as they include a sleeping tablet meant that she slept most of the night.
Sunday morning she woke in a foul mood and why shouldn't she. I can't see any reason for Margaret to be happy. She is is in constant discomfort in spite of the morphine patch. She has continuous diarrhea causing incontinence and has little or no energy due to her failed adrenal glands and failing kidneys. The problem is that she has only me to take it out on.
Sunday morning I changed my bed linen and put them into wash while I did the house work. I dusted throughout, vacuumed the floors and washed the tiled floor areas. I also cleaned both the bathrooms so by lunch time I was knackered and just wanted to relax in front of the TV. In the middle of the housework I had to help Margaret following two messy "accidents" but Margaret had other ideas, she wheeled herself into the lounge and demanded that I change her bed linen as well. I managed to defer it until after I had walked Louis later in the afternoon. She actually watch the complete first series of "To the Manor Born" during the day but i don't know if she took it all in.
I asked her what she wanted for dinner and she said nothing then changed it to bread and butter and a peach so I gave her that. I had an egg and bacon sandwich which made Margaret very angry. I asked her what she really wanted and she just said that she didn't want eggs or bacon and I told that's what she had - an egg and bacon sandwich less eggs and bacon. She was not amused -once she would have been.
She had another early night.
Monday was more of the same - angry and "accidents". I manged to get her to eat a full roast dinner but by 7.30pm she was angry with me and I don't know why so she took herself of to bed again. I haven't seen much of her for the last few days and when I have she has been angry with me.
Today Margaret went to see her GP to get last Friday's blood test results. They are much the same which is good.
Friday lunch was a letdown. The Bowls Club has decided to limit its menu to a few simple dishes at a rock bottom price with a few more expensive specials. Neither menu included Margaret's favourite, Sizzling Garlic Prawns. We decide to go to another restaurant near the river called Maddisons. Here were had a fairly expensive meal with Margaret having a chicken on a Turkish bread roll while I had fish and chips. At least they were nicely presented and well cooked.
The rest of the afternoon Margaret spent resting but she woke up hungry so I made her, the old standby, cheese and tomato sandwich followed by a fresh peach. Margaret did not want to stay up and went to bed early. At about 10.30 pm I looked in on her to find her sitting up on the side of the bed. She was quite distressed and said that she couldn't get to bed properly. I managed to straighten up her bed and get her to lie down but she took some time to go to sleep again.
On Saturday Margaret woke up in an upset state. She is becoming more and more confused about what day it is and was worried that she was missing some appointment or other. She relaxed when I told her it was Saturday and that she could relax all day.
Saturday looked like being a fine day so I decided to only do the washing and spent the rest of the morning mowing the lawns and tidying up the garden. Margaret got quite upset with the noise of my little push mower which is really quite quiet and slammed her bedroom window shut. I split the mowing into two periods and had morning tea in the middle. Margaret wouldn't talk to me nor have a cup of tea.
After finishing the mowing and a couple of loads of washing I asked Margaret what she wanted for lunch and she said that she didn't want anything. Apparently she had had an "accident" which she had cleaned up but she still had pains in her tummy. I asked if she had diarrhea which has been getting recently. She confirmed this and I gave her some Lomotil to settle he tummy down. These are prescribed for this sort of event but have to be used sparingly after diarrhea. I managed to get her to eat a sandwich with Liverwurst and tomato and she rested for the rest of the afternoon.
Margaret had said that she wanted a portion of cold roast chicken for dinner with salad and fruit so I had bought half a roast chicken from the local supermarket. Margaret chose the breast and then after eating the wing left the rest! Louis had the rest the following day for dinner - have I said that he is getting fat?
After dinner Margaret again went to bed early has she still wasn't really talking to me. I managed to delay her taking her tablets until about 10.30 pm which as they include a sleeping tablet meant that she slept most of the night.
Sunday morning she woke in a foul mood and why shouldn't she. I can't see any reason for Margaret to be happy. She is is in constant discomfort in spite of the morphine patch. She has continuous diarrhea causing incontinence and has little or no energy due to her failed adrenal glands and failing kidneys. The problem is that she has only me to take it out on.
Sunday morning I changed my bed linen and put them into wash while I did the house work. I dusted throughout, vacuumed the floors and washed the tiled floor areas. I also cleaned both the bathrooms so by lunch time I was knackered and just wanted to relax in front of the TV. In the middle of the housework I had to help Margaret following two messy "accidents" but Margaret had other ideas, she wheeled herself into the lounge and demanded that I change her bed linen as well. I managed to defer it until after I had walked Louis later in the afternoon. She actually watch the complete first series of "To the Manor Born" during the day but i don't know if she took it all in.
I asked her what she wanted for dinner and she said nothing then changed it to bread and butter and a peach so I gave her that. I had an egg and bacon sandwich which made Margaret very angry. I asked her what she really wanted and she just said that she didn't want eggs or bacon and I told that's what she had - an egg and bacon sandwich less eggs and bacon. She was not amused -once she would have been.
She had another early night.
Monday was more of the same - angry and "accidents". I manged to get her to eat a full roast dinner but by 7.30pm she was angry with me and I don't know why so she took herself of to bed again. I haven't seen much of her for the last few days and when I have she has been angry with me.
Today Margaret went to see her GP to get last Friday's blood test results. They are much the same which is good.
Friday, February 19, 2010
A Change Of Routine
On Tuesday Margaret had a visit to the Podiatrist. I had told her that we must leave by 12.15 pm to enable me to park and locate his office in Noosa Junction. I checked at 11.00 am and Margaret was up and showered so all looked OK. I gave he a light lunch at 11.30 am but at 12.00 noon when I looked in and she was fast asleep in bed. She was very annoyed at being woken up and had obviously forgotten about the appointment. She took some time putting her makeup on as she has developed some unsightly spots on her nose and she couldn't cover them up properly. She blamed the spots on the package we received the other day which were actually dressings for skin tears arranged by Blue Care. Her nose unfortunately reflects the state of her blood and the spots are little burst blood vessels which will disappear with time but others will soon replace then. Anyway it was a very bad tempered Margaret who got into the car at 12.30 pm.
We had a 20 minute drive to the Junction where I managed to get a disabled car park which has no time limit on parking. I pushed her in her wheelchair down the road to find the office. It was 32C/90F and 85% humidity and I was very uncomfortable. The office had a tiny vestibule and we had to move furniture to get Margaret's wheelchair inside. Here I found that I had left Margaret's Doctor's letter in the car so I left her filling most of the space while I hurried back to the car to get the letter. I got back just after 1.00 pm and Margaret had been wheeled into another small room where the podiatrist worked. We had previously visited him at his Tewantin Rooms which are quite spacious. He spent about 30 minutes tidying up Margaret's feet which luckily weren't in too bad a condition. He explained that the poor circulation and fluid retention around her ankles made it important that her feet were kept a sterile as possible to prevent infection. He recommended spraying the with methylated spirits every day. For our English readers metho, as we call it here, is unadulterated alcohol and perfectly clear.
After the treatment I wheeled Margaret up and down the Junction so that she could look at the shops which are mostly touristy in this area. We got home at about 2.30 pm.
Wednesday was my big day. I had arranged for Blue Care to come and look after Margaret for four hours while I spent an afternoon at my Computer Club. It is three months since I last had a respite break. Margaret didn't want a carer to come and told me to go and she would be OK on her own. Note that during the morning she had had two "accidents" on the way to the loo so I ignored her and at 12.30 pm a carer,T, arrived. I told her that Margaret was really grumpy and was hiding in her be room. I showed T around and than took her into Margaret. I had Louis on his lead as he gets excited with new visitors. Margaret said hello but didn't get up so I hooked Louis to Margaret's bed and went out.
I had a good time at the club catching up with old friends and listening to the talks. Before August last year I normally gave a talk but I think I will just listen until things sort themselves out at home. I got home just before 4.30 pm to find T watching TV in the lounge with Louis at her feet. Margaret came out from her bedroom in a very nice mood. Apparently she had got up just after I left and had a cup of tea with T who had brought her lunch with her. Louis had been let of his lead as T had four dogs of her own. Margaret had got tired and gone back to bed about 3.00 pm and Louis has wandered from her bedroom to the lounge as he felt fit. T said that Margaret had been a bit confused but very nice and would be happy to come again next month.
Thursday was a normal day with Margaret having little "accidents" and being quite confused at times. After dinner, bangers and mash which she ate, she felt unwell and went to bed early. This morning at 4.00am the intercom between our rooms woke me up so I hurried in to see what the problem was. Margaret had had to get up and couldn't find her light switch which is three inches square and right next to her on her bedside table. She had pressed the intercom button on her phone by mistake. I showed her the light switch, helped her to the bathroom and saw her back to bed. She was very confused and said she didn't know where she was. At 4.45 am I noticed her light was still on and found her still awake. She complained of cold feet and I had to re-arrange her bed clothes to enable her to snuggle down. When she went bed it was quite warm and she laid on top with the ceiling fan on. During the night the temperature had dropped and her feet which have very poor circulation got cold and hurt.
She is now quite worried about what she has to wear to go out for a blood test followed by lunch at the Bowls Club. Really she only wears a light blouse or top with trousers over her undies and wears sheepskin slippers/scuffs on her feet. I have told her that I will sort something out at about 10.30 am in good time for us to go out.
We had a 20 minute drive to the Junction where I managed to get a disabled car park which has no time limit on parking. I pushed her in her wheelchair down the road to find the office. It was 32C/90F and 85% humidity and I was very uncomfortable. The office had a tiny vestibule and we had to move furniture to get Margaret's wheelchair inside. Here I found that I had left Margaret's Doctor's letter in the car so I left her filling most of the space while I hurried back to the car to get the letter. I got back just after 1.00 pm and Margaret had been wheeled into another small room where the podiatrist worked. We had previously visited him at his Tewantin Rooms which are quite spacious. He spent about 30 minutes tidying up Margaret's feet which luckily weren't in too bad a condition. He explained that the poor circulation and fluid retention around her ankles made it important that her feet were kept a sterile as possible to prevent infection. He recommended spraying the with methylated spirits every day. For our English readers metho, as we call it here, is unadulterated alcohol and perfectly clear.
After the treatment I wheeled Margaret up and down the Junction so that she could look at the shops which are mostly touristy in this area. We got home at about 2.30 pm.
Wednesday was my big day. I had arranged for Blue Care to come and look after Margaret for four hours while I spent an afternoon at my Computer Club. It is three months since I last had a respite break. Margaret didn't want a carer to come and told me to go and she would be OK on her own. Note that during the morning she had had two "accidents" on the way to the loo so I ignored her and at 12.30 pm a carer,T, arrived. I told her that Margaret was really grumpy and was hiding in her be room. I showed T around and than took her into Margaret. I had Louis on his lead as he gets excited with new visitors. Margaret said hello but didn't get up so I hooked Louis to Margaret's bed and went out.
I had a good time at the club catching up with old friends and listening to the talks. Before August last year I normally gave a talk but I think I will just listen until things sort themselves out at home. I got home just before 4.30 pm to find T watching TV in the lounge with Louis at her feet. Margaret came out from her bedroom in a very nice mood. Apparently she had got up just after I left and had a cup of tea with T who had brought her lunch with her. Louis had been let of his lead as T had four dogs of her own. Margaret had got tired and gone back to bed about 3.00 pm and Louis has wandered from her bedroom to the lounge as he felt fit. T said that Margaret had been a bit confused but very nice and would be happy to come again next month.
Thursday was a normal day with Margaret having little "accidents" and being quite confused at times. After dinner, bangers and mash which she ate, she felt unwell and went to bed early. This morning at 4.00am the intercom between our rooms woke me up so I hurried in to see what the problem was. Margaret had had to get up and couldn't find her light switch which is three inches square and right next to her on her bedside table. She had pressed the intercom button on her phone by mistake. I showed her the light switch, helped her to the bathroom and saw her back to bed. She was very confused and said she didn't know where she was. At 4.45 am I noticed her light was still on and found her still awake. She complained of cold feet and I had to re-arrange her bed clothes to enable her to snuggle down. When she went bed it was quite warm and she laid on top with the ceiling fan on. During the night the temperature had dropped and her feet which have very poor circulation got cold and hurt.
She is now quite worried about what she has to wear to go out for a blood test followed by lunch at the Bowls Club. Really she only wears a light blouse or top with trousers over her undies and wears sheepskin slippers/scuffs on her feet. I have told her that I will sort something out at about 10.30 am in good time for us to go out.
Tuesday, February 16, 2010
It Looked Like Being a Nice Weekend
On Friday I tok Margaret somewhere different for lunch. Normally we frequent the local clubs for their wholesome and reasonably cheap lunches but this week we went to the Noosa Springs Resort to have lunch in their Relish Restaurant. We had the option of sitting on the balcony overlooking the Golf Course or sitting inside. Margaret wanted to sit inside. The lunch was very nice and surprisingly inexpensive. Margaret had difficulty choosing what to have so in the end I decided that she would like chicken breasts on Turkish bread with a nice dressing and salad accompanied by French fries. I had battered snapper and chips akna French fries.
I thought that Margaret was not going to eat her lunch but realized that she couldn't cut it up so I did it for her. While she was a little slow she ate the lot and had a couple of glasses of sparkling white wine, formerly known as Champagne before the French objected. The surroundings are very nice with lush sub-tropical trees and shrubs. Ten years ago this was the local sewage farm!!
Friday passed without any major dramas but Margaret was obviously getting more confused and went to bed early
Saturday was a good day. Margaret let me give her room and en-suite a good clean and I did all our washing and cleaned the rest of the house. In the afternoon I relaxed in the lounge reading a book on J.M.Barrie the author of Peter Pan. Margaret spent most of the day reading and watching TV.
Sunday was going to be a free day which I intended to use updating my computers and trying out a couple of Linux Operating Systems which I had downloaded. About 10.00 am I asked Margaret if she wanted a cup of tea which she declined and said she wasn't feeling well. Soon after she called out from her bathroom for help and I found that she had had an "accident". She was in a terrible mess and I had to clean her and the bathroom up and change her nightie. After putting her towels and nightie into the washing machine I finally got my tea and settled down to play on my computer at about 11.00 am. At about noon Margaret had another "accident" and I had to clean up and change her once again.
I spent the afternoon popping in and out to see Margaret and watching cricket on the TV. Margaret was very unhappy and said that I should put her in a home and that she didn't want me to visit her etc. By dinner time she had settled and had a light meal before watching TV for a little while.
Monday started well and I got my shopping done early. Margaret was confused and thought that she had to get up to either see the Doctor, be ready for the Blue Care RN visit or go and have her feet done. I told he that she had no need to worry about any of these. She looked at the calender and saw the doctor's appointment for next week and told me I was wrong. Finally she settled but mid morning she had another major "accident" - more cleaning up and washing. Later just before lunch she had another minor one. I suggested that she should take Lomotil to prevent diarrhea but she wouldn't. The rest of the day she just laid in bed until dinner time.
I had prepared a full roast lamb dinner. The leg of lamb had been cooked slowly in our Weber Kettle outside as it was a hot humid day. I prepared roast potatoes and greens with a nice thick brown gravy plus mint sauce. Margaret said it was too tough and only ate the potatoes and gravy followed by a fresh peach. I ate the lot and the lamb certainly wasn't tough. Louis looks like having lamb for lunch today and I am having lamb sandwich with pickles. Margaret can have what she wants.
Later in the evening our daughter H phoned to talk to Margaret and the one side of the conversation I heard was hilarious. After Margaret had finish I had a brief word with H who said that it was the most confusing conversation that she had ever had with Margaret and I translated a few things for her.
Later today, Tuesday, Margaret has her feet done. She is very confused about the whole thing and I asked me how she would get on the bus to get there! It took some patience to explain that we would go in the car and use her wheelchair. I have told her that she should shower at about 11.00am and we will have an early lunch about 11.45 am before leaving at about 12.15 pm to go to the podiatrist. It will be interesting to see how much she remembers
I thought that Margaret was not going to eat her lunch but realized that she couldn't cut it up so I did it for her. While she was a little slow she ate the lot and had a couple of glasses of sparkling white wine, formerly known as Champagne before the French objected. The surroundings are very nice with lush sub-tropical trees and shrubs. Ten years ago this was the local sewage farm!!
Friday passed without any major dramas but Margaret was obviously getting more confused and went to bed early
Saturday was a good day. Margaret let me give her room and en-suite a good clean and I did all our washing and cleaned the rest of the house. In the afternoon I relaxed in the lounge reading a book on J.M.Barrie the author of Peter Pan. Margaret spent most of the day reading and watching TV.
Sunday was going to be a free day which I intended to use updating my computers and trying out a couple of Linux Operating Systems which I had downloaded. About 10.00 am I asked Margaret if she wanted a cup of tea which she declined and said she wasn't feeling well. Soon after she called out from her bathroom for help and I found that she had had an "accident". She was in a terrible mess and I had to clean her and the bathroom up and change her nightie. After putting her towels and nightie into the washing machine I finally got my tea and settled down to play on my computer at about 11.00 am. At about noon Margaret had another "accident" and I had to clean up and change her once again.
I spent the afternoon popping in and out to see Margaret and watching cricket on the TV. Margaret was very unhappy and said that I should put her in a home and that she didn't want me to visit her etc. By dinner time she had settled and had a light meal before watching TV for a little while.
Monday started well and I got my shopping done early. Margaret was confused and thought that she had to get up to either see the Doctor, be ready for the Blue Care RN visit or go and have her feet done. I told he that she had no need to worry about any of these. She looked at the calender and saw the doctor's appointment for next week and told me I was wrong. Finally she settled but mid morning she had another major "accident" - more cleaning up and washing. Later just before lunch she had another minor one. I suggested that she should take Lomotil to prevent diarrhea but she wouldn't. The rest of the day she just laid in bed until dinner time.
I had prepared a full roast lamb dinner. The leg of lamb had been cooked slowly in our Weber Kettle outside as it was a hot humid day. I prepared roast potatoes and greens with a nice thick brown gravy plus mint sauce. Margaret said it was too tough and only ate the potatoes and gravy followed by a fresh peach. I ate the lot and the lamb certainly wasn't tough. Louis looks like having lamb for lunch today and I am having lamb sandwich with pickles. Margaret can have what she wants.
Later in the evening our daughter H phoned to talk to Margaret and the one side of the conversation I heard was hilarious. After Margaret had finish I had a brief word with H who said that it was the most confusing conversation that she had ever had with Margaret and I translated a few things for her.
Later today, Tuesday, Margaret has her feet done. She is very confused about the whole thing and I asked me how she would get on the bus to get there! It took some patience to explain that we would go in the car and use her wheelchair. I have told her that she should shower at about 11.00am and we will have an early lunch about 11.45 am before leaving at about 12.15 pm to go to the podiatrist. It will be interesting to see how much she remembers
Friday, February 12, 2010
A Quiet Couple 0f Days
When I left off on Wednesday I said that I was going to do some gardening and I did! Our lawns are now all nice and tidy and all that's left to do later today is to poison off the weeds. At this time of year it is hot and humid which is ideal for growing grass and weeds. The only way for a gardening hater to keep up is to give the weeds a shot of weed killer every couple of weeks.
Margaret has been very quite for the last couple of days and is still very confused about dates and appointments. Each night she asks what time she should get up and for the last three night I have told her that as we have no appointments for the next few days she can get up when she wants. Each morning when I take her breakfast in she asks when she has to get up and I repeat my reply. About 10.00 am she begins to worry about not being up and missing an appointment so I tell her again.
At present she is complaining of having a pain in her neck. This could be due to the fact that for the last couple of nights she has thrown her pillows out of bed or she may just have put her neck out. She is having paracetamol to help with the pain and if it persists over the weekend I'll make a Doctor's appointment to check it out.
On a more sombre note I have been doing some reading on End Stage Renal Failure and came upon the following link:
http://www.growthhouse.org/mortals/mort2513.html
I think it sums up Margaret's condition and prognosis. We will continue to fight to keep her kidneys from completely failing but now know what to expect if and when they do fail. One thing I know kidneys don't get better after five months of chronic failure.
Margaret has been very quite for the last couple of days and is still very confused about dates and appointments. Each night she asks what time she should get up and for the last three night I have told her that as we have no appointments for the next few days she can get up when she wants. Each morning when I take her breakfast in she asks when she has to get up and I repeat my reply. About 10.00 am she begins to worry about not being up and missing an appointment so I tell her again.
At present she is complaining of having a pain in her neck. This could be due to the fact that for the last couple of nights she has thrown her pillows out of bed or she may just have put her neck out. She is having paracetamol to help with the pain and if it persists over the weekend I'll make a Doctor's appointment to check it out.
On a more sombre note I have been doing some reading on End Stage Renal Failure and came upon the following link:
http://www.growthhouse.org/mortals/mort2513.html
I think it sums up Margaret's condition and prognosis. We will continue to fight to keep her kidneys from completely failing but now know what to expect if and when they do fail. One thing I know kidneys don't get better after five months of chronic failure.
Wednesday, February 10, 2010
Blood Test Results and GP Visit
Sunday passed with Margaret resting up and going to bed early. I watched the one day cricket match between Australia and the West Indies which Australia won easily.
Monday morning I went shopping early but on my return Margaret told me that she had had another "accident" and had cleaned up herself. She was still in a grumpy mood especially when I told her that the Blue Care RN was visiting to check how we are going. Margaret says that she hates her but when she is there gets on OK with her especially as she has allowed Louis to stay in the room provided he is restrained. I find the visits helpful as the RN checks on how we are managing. One of the big problems with elderly carers is that they can let their own personal standards drop. While I don't think this has happened to me yet D the RN would let me know and suggest additional support as required. She is re-instating a respite period for me when I can go out for four hours to my computer club once a month. This starts next Wednesday. I had to opt out for a couple of months because of Margaret's hospital stay and subsequent specialist visits.
Tuesday was Margaret's day to visit her GP to get her blood test results. I had the usual problems getting Margaret ready but we were there on time and as usual he ran half hour late. The test results were pretty bad. Her renal function is still poor and when I ask for his opinion on the future the GP said that the only treatment was to maintain a low fluid intake coupled with a a high protein low volume diet to try and delay the rate of the kidney failure. He confirmed that Margaret would not stand dialysis or be a candidate for transplant. Normally about this time in chronic kidney failure she would be transferred to a Renal Specialist who would monitor her condition in anticipation of dialysis but in Margaret's case it has been determined that this would be a waste of time.
Margaret has had difficulty sleeping which could be the cause of her grumpy behavior so A prescribed a sedative to help her sleep but not to powerful that she became incontinent while asleep. She has also been having trouble with her feet. She has a couple of deformed toenails and they need tidying up. A referred Margaret to a Podiatrist and I shall take her for treatment ASAP.
This morning, after the first night on her sedative, Margaret appears to be a little more relaxed and said that she had a good night's rest but woke up to go to the bathroom.
Today it is not raining and I have no excuse to put off the gardening.
Monday morning I went shopping early but on my return Margaret told me that she had had another "accident" and had cleaned up herself. She was still in a grumpy mood especially when I told her that the Blue Care RN was visiting to check how we are going. Margaret says that she hates her but when she is there gets on OK with her especially as she has allowed Louis to stay in the room provided he is restrained. I find the visits helpful as the RN checks on how we are managing. One of the big problems with elderly carers is that they can let their own personal standards drop. While I don't think this has happened to me yet D the RN would let me know and suggest additional support as required. She is re-instating a respite period for me when I can go out for four hours to my computer club once a month. This starts next Wednesday. I had to opt out for a couple of months because of Margaret's hospital stay and subsequent specialist visits.
Tuesday was Margaret's day to visit her GP to get her blood test results. I had the usual problems getting Margaret ready but we were there on time and as usual he ran half hour late. The test results were pretty bad. Her renal function is still poor and when I ask for his opinion on the future the GP said that the only treatment was to maintain a low fluid intake coupled with a a high protein low volume diet to try and delay the rate of the kidney failure. He confirmed that Margaret would not stand dialysis or be a candidate for transplant. Normally about this time in chronic kidney failure she would be transferred to a Renal Specialist who would monitor her condition in anticipation of dialysis but in Margaret's case it has been determined that this would be a waste of time.
Margaret has had difficulty sleeping which could be the cause of her grumpy behavior so A prescribed a sedative to help her sleep but not to powerful that she became incontinent while asleep. She has also been having trouble with her feet. She has a couple of deformed toenails and they need tidying up. A referred Margaret to a Podiatrist and I shall take her for treatment ASAP.
This morning, after the first night on her sedative, Margaret appears to be a little more relaxed and said that she had a good night's rest but woke up to go to the bathroom.
Today it is not raining and I have no excuse to put off the gardening.
Sunday, February 7, 2010
Margaret is Angry
Friday lunch at a local hotel was not a success. The hotel is one of a big chain with a glitzy dining room where they serve enormous, fairly expensive but not well cooked meals. Margaret decided that she wanted their "Home Style" beef pie with mashed potatoes , gravy and mushy peas. When it arrived it was enormous and the pie lid had been prized off and the pie filled with the mushy peas. The pie sat in a bed of mashed potatoes and gravy. I think Margaret had about three mouthfuls of the pie having scraped the peas, which she hates, out. She ate some potato and gravy but left most of the meal. I had a steak sandwich which was accompanied by a pile of chips. I ate the steak and salad but left most of the chips and bread roll which made up the sandwich. I expect we will be back to the cheaper Bowls Club next week.
Before lunch Margaret went to the collection centre to have blood taken for her next tests. They always have difficulty finding a suitable vein and this time it hurt Margaret a lot and made her cry. The collector was very kind and Margaret soon settled down. We will get the results on Tuesday.
The rest of Friday Margaret rested and she went to bed early after a light supper.
On Saturday she was in a really angry mood. Didn't want a cup of tea before I walked Louis. She was upset when I took in her breakfast and yelled at poor Louis who shares it with her. Later when I was trying to clean her room she accused me of deliberately keeping her awake as she hadn't slept all night. She had been asleep on the two occasions that I looked in on her at midnight and 3.00 am. I finally gave up and went out for a break. I went into Tewantin to get some prescriptions filled for Margaret and had a coffee and cake break while waiting. When I got home she was still upset.
She gradually calmed down but did not eat much of her dinner which being battered dory and chips, previously a favourite, was a surprise. She stayed up quite late as I watched The bill and Taggert to get my UK TV crime hit for the week. This morning she is - rather was - quieter. I have just returned from answering her yells as she has just had another accident. She barely made the en-suite and I have just helped to shower and change her before washing the floor. I joked that at least I didn't waste my time cleaning the en-suite yesterday but she has forgotten kicking me out.
I was going to garden today but we have just had a heavy shower so I'll probably read and snooze in front ot the TV instead. Did I say previously that I hate gardening?
Before lunch Margaret went to the collection centre to have blood taken for her next tests. They always have difficulty finding a suitable vein and this time it hurt Margaret a lot and made her cry. The collector was very kind and Margaret soon settled down. We will get the results on Tuesday.
The rest of Friday Margaret rested and she went to bed early after a light supper.
On Saturday she was in a really angry mood. Didn't want a cup of tea before I walked Louis. She was upset when I took in her breakfast and yelled at poor Louis who shares it with her. Later when I was trying to clean her room she accused me of deliberately keeping her awake as she hadn't slept all night. She had been asleep on the two occasions that I looked in on her at midnight and 3.00 am. I finally gave up and went out for a break. I went into Tewantin to get some prescriptions filled for Margaret and had a coffee and cake break while waiting. When I got home she was still upset.
She gradually calmed down but did not eat much of her dinner which being battered dory and chips, previously a favourite, was a surprise. She stayed up quite late as I watched The bill and Taggert to get my UK TV crime hit for the week. This morning she is - rather was - quieter. I have just returned from answering her yells as she has just had another accident. She barely made the en-suite and I have just helped to shower and change her before washing the floor. I joked that at least I didn't waste my time cleaning the en-suite yesterday but she has forgotten kicking me out.
I was going to garden today but we have just had a heavy shower so I'll probably read and snooze in front ot the TV instead. Did I say previously that I hate gardening?
Friday, February 5, 2010
Margaret is not feeling good.
Just after I finished blogging on Wednesday Margaret had another "accident" which required a change of clothes and shower. I cleaned up the floor in the en-suite. On Thursday while I was out shopping she had another "accident", She managed to clean herself up but I had some floor cleaning and another nightie to wash. This is now seven"accidents" in just under two weeks. I think I should now accept that Margaret is chronically incontinent. If this is so, and it is accepted by the Australian Government's Age Care Assessment Team (ACAT) as so, it has important ramifications. Chronic Incontinence is one of the triggers for assessment as requiring continuous high care. At present Margaret is assessed as requiring continuous low care with some special needs. There are very few places in local Age Care Facilities for low care patients as they get much more money for high care patients.
There are three triggers for High Care, chronic incontinence, complete dementia and full incapacitation. Margaret has for some years had part of each but it has to be all of at least one of the triggers. While, as I stated on the first page of this blog, I do not want to place Margaret in an Aged Care Facility it is very worrying as to what would happen to Margaret in the case of me being unable to care for her. There is emergency care but do to her assessment as low care it could be anywhere with South East Queensland and up to 200 km away. Last year when I had surgery for a double hernia a place was found in a new facility 40 km away which still had low car emergency respite beds available. These beds are often booked up months in advance. While she was in the facility Margaret had a flare up of vasculitis and she was taken to the emergency department or a nearby public hospital. They had no history of Margaret's previous health so she was sent back to the home without treatment. If I can get her assessed as high care she will be able to get emergency accommodation in the local area and her GP will be on call.
As well as her "accidents" Margaret has been feeling quite ill. She has a constant headache and cramps in her legs and is also very depressed. She has gone to bed at 8.00 pm for the last two nights and has stopped reading. She was reading a lot for a couple of days with her new bright light and new glasses. Today I take her for another blood test and if she feels up to it out to lunch. We are going somewhere different this week - a local hotel. Of course we have to make sure that she goes to the loo before we go out and we also have spare incontinence pants and cleaning aids with us.
On a brighter note the swelling of her ankles has decreased significantly and I hope we can begin to reduce her diuretics in the near future.
There are three triggers for High Care, chronic incontinence, complete dementia and full incapacitation. Margaret has for some years had part of each but it has to be all of at least one of the triggers. While, as I stated on the first page of this blog, I do not want to place Margaret in an Aged Care Facility it is very worrying as to what would happen to Margaret in the case of me being unable to care for her. There is emergency care but do to her assessment as low care it could be anywhere with South East Queensland and up to 200 km away. Last year when I had surgery for a double hernia a place was found in a new facility 40 km away which still had low car emergency respite beds available. These beds are often booked up months in advance. While she was in the facility Margaret had a flare up of vasculitis and she was taken to the emergency department or a nearby public hospital. They had no history of Margaret's previous health so she was sent back to the home without treatment. If I can get her assessed as high care she will be able to get emergency accommodation in the local area and her GP will be on call.
As well as her "accidents" Margaret has been feeling quite ill. She has a constant headache and cramps in her legs and is also very depressed. She has gone to bed at 8.00 pm for the last two nights and has stopped reading. She was reading a lot for a couple of days with her new bright light and new glasses. Today I take her for another blood test and if she feels up to it out to lunch. We are going somewhere different this week - a local hotel. Of course we have to make sure that she goes to the loo before we go out and we also have spare incontinence pants and cleaning aids with us.
On a brighter note the swelling of her ankles has decreased significantly and I hope we can begin to reduce her diuretics in the near future.
Wednesday, February 3, 2010
Blood Test Results and GP Visit
When I last wrote on Saturday I was rather pessimistic but we actually had a reasonably normal weekend. Margaret remained in a grumpy mood and was still very confused about dates and appointments but I managed to sort her out. Fortunately she had no more "accidents ". The weekend was quite wet as we had some much needed rain. I spent most of the time reading while Margaret stayed in bed.
On the flip side Margaret's weight loss program appears to have stalled and her swollen legs and ankles have become quite bad once again in spite of taking 80 mg of Frusimide a day. I think that she builds up a resistance to the diuretics after a day or so. Margaret also managed to remove her Norspan patch some time over the weekend. I had applied the last one on Friday and couldn't get any more without a special prescription as they are a controlled substance. Their effect lasts for up to 48 hours after their removal so I just hoped that Margaret would be comfortable until I could get a new prescription.
Monday was the day her specialist was going to phone her blood test results through to us and to recommend ongoing treatment. I did my shopping very early and hung around most of the day but he never phoned much to my disgust. Fortunately we were going to see Margaret's GP on Tuesday to get her Norspan prescription and he would have the results.
On Tuesday Margaret was very confused and she told me her appointment was on the 27th and that I had changed the calender. She had also removed her appointment card from under its fridge magnet and lost it so it took me some time to convince here that she had to get ready to visit the Doctor. Well we made it and after some hassles getting close by parking we entered the new offices set up by Margaret's and my GPs. They were senior partners in a long established practice of 5 or 6 doctors but have now branched on their own with a long term aim to develop a nearby site as a complete Medical Facility. Their new offices are quite swish. The receptionist have new uniforms with the new practice name, Doctors Of Tewantin (DOT) on them. Margaret's first and loud reaction was that it was too cold and she didn't like the new offices.
My GP saw me first to give me the results of my six monthly blood and urine tests to check my general health and Type 2 Diabetes status. They were excellent and I had the lowest cholesterol reading for many years. C, my GP, wryly commented that six months of stress must be good for me. He also said that he and Margaret's GP were concerned with Margaret's future especially her failing kidneys.
Margaret's GP, A, was ready soon after. He had received a long letter from H, Margaret's specialist, who summarised her condition and had handed her back to A for continuing treatment. He also said that he would phone us which he hadn't. A looked up Margaret's blood test results which showed no major change for the better or worse. He examined Margaret's legs and said that the fluid has to come off and has increased her Frusimide to 120 mg per day. This level of diuretic will probably reduce her mineral levels so she has to have another blood test this Friday while she walks the tightrope between too much fluid causing heart failure and leeching of her minerals etc plus kidney failure due to the diuretics. I give it two to three weeks before she is back in hospital. I should bet on it as I have never won a bet in my life before. Margaret also got a four weeks supply of Norpan patches and I have applied one between her shoulder blades where she can not reach - it's still there this morning. A also commented to Margaret that she appeared to be in a very bad mood and asked where the lovely lady from December had gone to. Margaret also had problems recalling the day of the week and the date which indicates that she is drifting back to confusion. Margaret is also to try and reduce her fluid intake back to 1.2 litres, which as she just fills her glass up with water when she feels like it is going to be difficult to enforce.
Margaret's friend, K, from South Australia phoned her and, while I wasn't eavesdropping, could hear her telling him about the conspiracy to remove him from her computer and to block her accessing him. I think that he tried to to reassure her that this was not so and she has written down his e-mail address which we already had. I have asked her to let me know when she has typed in a new message for K and I will ensure that it gets sent.
This morning Margaret has lost quite a lot of fluid from her ankles as the increased Frusimide kicks in but she has very aching legs.
On the flip side Margaret's weight loss program appears to have stalled and her swollen legs and ankles have become quite bad once again in spite of taking 80 mg of Frusimide a day. I think that she builds up a resistance to the diuretics after a day or so. Margaret also managed to remove her Norspan patch some time over the weekend. I had applied the last one on Friday and couldn't get any more without a special prescription as they are a controlled substance. Their effect lasts for up to 48 hours after their removal so I just hoped that Margaret would be comfortable until I could get a new prescription.
Monday was the day her specialist was going to phone her blood test results through to us and to recommend ongoing treatment. I did my shopping very early and hung around most of the day but he never phoned much to my disgust. Fortunately we were going to see Margaret's GP on Tuesday to get her Norspan prescription and he would have the results.
On Tuesday Margaret was very confused and she told me her appointment was on the 27th and that I had changed the calender. She had also removed her appointment card from under its fridge magnet and lost it so it took me some time to convince here that she had to get ready to visit the Doctor. Well we made it and after some hassles getting close by parking we entered the new offices set up by Margaret's and my GPs. They were senior partners in a long established practice of 5 or 6 doctors but have now branched on their own with a long term aim to develop a nearby site as a complete Medical Facility. Their new offices are quite swish. The receptionist have new uniforms with the new practice name, Doctors Of Tewantin (DOT) on them. Margaret's first and loud reaction was that it was too cold and she didn't like the new offices.
My GP saw me first to give me the results of my six monthly blood and urine tests to check my general health and Type 2 Diabetes status. They were excellent and I had the lowest cholesterol reading for many years. C, my GP, wryly commented that six months of stress must be good for me. He also said that he and Margaret's GP were concerned with Margaret's future especially her failing kidneys.
Margaret's GP, A, was ready soon after. He had received a long letter from H, Margaret's specialist, who summarised her condition and had handed her back to A for continuing treatment. He also said that he would phone us which he hadn't. A looked up Margaret's blood test results which showed no major change for the better or worse. He examined Margaret's legs and said that the fluid has to come off and has increased her Frusimide to 120 mg per day. This level of diuretic will probably reduce her mineral levels so she has to have another blood test this Friday while she walks the tightrope between too much fluid causing heart failure and leeching of her minerals etc plus kidney failure due to the diuretics. I give it two to three weeks before she is back in hospital. I should bet on it as I have never won a bet in my life before. Margaret also got a four weeks supply of Norpan patches and I have applied one between her shoulder blades where she can not reach - it's still there this morning. A also commented to Margaret that she appeared to be in a very bad mood and asked where the lovely lady from December had gone to. Margaret also had problems recalling the day of the week and the date which indicates that she is drifting back to confusion. Margaret is also to try and reduce her fluid intake back to 1.2 litres, which as she just fills her glass up with water when she feels like it is going to be difficult to enforce.
Margaret's friend, K, from South Australia phoned her and, while I wasn't eavesdropping, could hear her telling him about the conspiracy to remove him from her computer and to block her accessing him. I think that he tried to to reassure her that this was not so and she has written down his e-mail address which we already had. I have asked her to let me know when she has typed in a new message for K and I will ensure that it gets sent.
This morning Margaret has lost quite a lot of fluid from her ankles as the increased Frusimide kicks in but she has very aching legs.
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