Helen and I visit Margaret for up to six hours a day. On Tuesday night she removed her catheter and cannula which means that she is no longer on a drip and they can't do a proper fluid balance. It has been decided not to replace them.
She is not eating anything very much and is very weak. She cannot stand without assistance which, with her broken arm, means that it takes two people to get her to and from the bath room. Her pain control appears to be working and she is quite feisty as I found out when I tried to feed her on Wednesday. She grabbed the fork, threw the food at me and if I hadn't been quick would have skewered me.
Helen tends to fuss over her Mum and she was told, "Shut up and go away you silly cow!". Margaret did apologise later but as Helen said it made up for all the times when she had been a silly cow and Margaret still supported her.
In spite of all her problems Margaret's kidney function is improving. On Monday her Creatinine Level was 436 micromol/litre and eGFR 9 ml/min which is for all intents and purposes is complete kidney failure. By Wednesday they had improved to 200 and 22 respectively. If we can keep getting fluid into her she will survive a little while longer. This has been achieved by stopping all her diuretics which now means that she is at risk of pulmonary oedema and heart failure. I have been asked by her specialist if Margaret has and wishes concerning resuscitation. Fortunately she has an Advanced Health Directive and has given me her Enduring Power of Attorney for Health Matters. She does not want to be resuscitated and the Specialist was relieved as this is probably the best and kindest thing for Margaret.
Because Margaret is not actually receiving any medical treatment and her arm is beyond repair she will be sent back to her room in the nursing home early next week where she will receive palliative care. Here we will be able to visit her at any time and take Louis into visit her. We hope to be able to have a birthday party for her on the 26 September when she will be 74. We celebrate our 52nd Wedding Anniversary on the 20 September.
Friday, August 27, 2010
Tuesday, August 24, 2010
A Traumatic Day
Yesterday, Monday, was a traumatic day. Helen and i went shopping before dropping in to see Margaret at 9.15 am. As we walked in we were met by the RN who had been trying to contact me by phone. Margaret had had a serious fall. She had hit her head quite hard and had a gash on her forehead which would require stitches. An ambulance had been called and she was going to hospital.
The ambulance arrived promptly and she was in the Noosa Emergency Department by just after 10.00 am. The senior nurse on charge was D who had fixed up a serious skin-tear for Margaret back in April. He was superb and soon had Margaret calmed down and on a drip and blood taken for testing. She was in total shock and very confused. X-rays were taken of her head and arm. This took some time so Helen and I had a coffee to keep us going.
The Trauma Doctor came and showed us the X-ray results. Her head is fine and would be stitched up but her arm was seriously damaged. The original break had re-broken and the humerus shaft was displaced from the ball joint at the shoulder by about 30 mm. This would normally result in a complete shoulder replacement as the socket was also damaged but in Margaret's case this wont be done as she wont survive the surgery.
Worse still her kidneys had shut down and the Doctor wanted to put her on Dialysis ASAP. I asked her to consult her specialist who was on call. When he arrived he said the arm was irreparable and in time the ball would become necrotic as it had no blood supply. She will never gain the use of this arm. Her kidneys were in the End Stage Failure state and she would not be suitable for Dialysis. I had two options to consider:
She was admitted to the ward about 3.30 pm.
We went back to the Nursing Home to get some things and she will keep her room providing she is back in nine weeks. Home to feed and exercise Louis who had been on his own since 8.00 am and then back to the hospital just before 6.00 pm.
Her specialist called in to see her and had a quiet chat with me. He is stopping most of her medications in order to give the Kidneys some chance to recover but she is critically ill at present.
Helen and I went home for dinner and are off to visit her this morning at about 9.30 am. Visiting is not until 11.00am but they make exceptions when the patient is so ill. Actually, as she has no usable arms (one broken and the other immobilised by a drip), we are useful to give her drinks and feed her. We will leave after her lunch to have our own, feed Louis and walk him then rest up before we go back for her evening meal at 5.00 pm. We will come home about 6.30 pm for our dinner.
Helen is staying until things resolve themselves.
The ambulance arrived promptly and she was in the Noosa Emergency Department by just after 10.00 am. The senior nurse on charge was D who had fixed up a serious skin-tear for Margaret back in April. He was superb and soon had Margaret calmed down and on a drip and blood taken for testing. She was in total shock and very confused. X-rays were taken of her head and arm. This took some time so Helen and I had a coffee to keep us going.
The Trauma Doctor came and showed us the X-ray results. Her head is fine and would be stitched up but her arm was seriously damaged. The original break had re-broken and the humerus shaft was displaced from the ball joint at the shoulder by about 30 mm. This would normally result in a complete shoulder replacement as the socket was also damaged but in Margaret's case this wont be done as she wont survive the surgery.
Worse still her kidneys had shut down and the Doctor wanted to put her on Dialysis ASAP. I asked her to consult her specialist who was on call. When he arrived he said the arm was irreparable and in time the ball would become necrotic as it had no blood supply. She will never gain the use of this arm. Her kidneys were in the End Stage Failure state and she would not be suitable for Dialysis. I had two options to consider:
- Return her to the Nursing Home and start Palliative Care immediately and she would die within a couple of weeks.
- Leave her in hospital where he would try and get her kidneys working again as they had done at Nambour in June . She has seven days before the Kidney Failure became irreversible.
She was admitted to the ward about 3.30 pm.
We went back to the Nursing Home to get some things and she will keep her room providing she is back in nine weeks. Home to feed and exercise Louis who had been on his own since 8.00 am and then back to the hospital just before 6.00 pm.
Her specialist called in to see her and had a quiet chat with me. He is stopping most of her medications in order to give the Kidneys some chance to recover but she is critically ill at present.
Helen and I went home for dinner and are off to visit her this morning at about 9.30 am. Visiting is not until 11.00am but they make exceptions when the patient is so ill. Actually, as she has no usable arms (one broken and the other immobilised by a drip), we are useful to give her drinks and feed her. We will leave after her lunch to have our own, feed Louis and walk him then rest up before we go back for her evening meal at 5.00 pm. We will come home about 6.30 pm for our dinner.
Helen is staying until things resolve themselves.
Sunday, August 22, 2010
Update
On Saturday morning Helen and I visited Margaret at 9.30 am to find her sitting hunched up on the edge of her bed. We couldn't get her to talk to us and she was nearly falling over. Her carer sat next to her and held her up while she called for a hoist to lift her up and back safely on the bed. We are not sure what happened but we think that she had tried to get out of bed for some reason and could not stand up and just froze. She had been catheterised the night before to check her urine flow and she may hve been confused by the tube and collection bag.
We hadn't taken Louis in and she really wasn't up to a walk so she stayed in bed. She was really confused and her both her legs are now massively swollen. She hadn't taken her breakfast medications so I gave them to her. I left at 12.00 noon to feed Louis and get some rest leaving Helen to hold the fort. Margaret was dressed for lunch, which she didn't eat, and was transferred by hoist to the dining room to watch a video on the Large screen TV about ballet which Helen thinks she enjoyed. She was taken back to her room and hoisted back into bed and Helen was left to look after her. This proved very traumatic as during the afternoon she began to fall out of bed and Helen had to support her while trying to get hold of a carer to help. Margaret became very aggressive and actually bit Helens arm leaving a great imprint of her teeth on Helen's forearm. She also ripped poor Helen's necklaces off and threw them away. The carers helped get her back in bed and she was given a sedative.
By the time I got back to pick up Helen and take out for dinner as she had been there for eight hours without a break Margaret was calm but in some pain and I asked the RN is she could have some morphine. We went out to a Local Surf Club to have a meal with Margaret's cousin and daughter but arranged to come back at 8.30 pm to help settle Margaret down for bed. Unfortunately this message wasn't passed on to the carers so when Margaret started to ask where we were she was told that we weren't coming back. Margaret freaked out and would not remain in her room so was taken to the dining room to sit in solitary state and unattended in the dining room. When we arrived she had thrown a cup of tea and some biscuits on the floor and was very upset. I managed to get her to stand up and transfer from her armchair to her wheel chair so we could take her back to bed where with some difficulty we managed to settle her down. The RN brought in some sedatives and a sleeping tablet which she had refused to take. She took them for me and we stayed until they took effect and left her sleeping quietly. At home we both had a stiff gin and tonic as our sedatives and watched the Australian Election results.
This morning we were back at 9.00 an to find Margaret sitting on her wheely walker in her bathroom refusing to come. She was showed and dressed but was holding her partially healed arm in an awkward manner. She got out of bed and fallen in the bathroom during the night at 11.00 pm and had another fall at 6.00 am. Paradoxically she had been very quiet and well behaved and taken all her tablets. We got assistance from two carers to get her into her wheel chair and took her for a walk around the block to give her some fresh air as it is a beautiful sunny day. When we returned her GP called in. He is still concerned with the swollen legs but the infection appears to be lessening. He was worried that she may have re-broken her left arm and she will have X-rays tomorrow. He also reviewed her medications and she will be given more drugs to lessen her anxiety and aggression. He is now on call to visit any time. It is likely that Margaret will be placed on the Queensland's Health Palliative Care Program in the near future. A specialist will examine her and set up a care plan which will be administered by the RNs and monitored by the GP.
I went home just before 12.00 noon to feed Louis but shall return about 2.00 pm with Louis to try and cheer Margaret up. By then she should be a lot calmer. We should be able to leave her in the RN's care overnight and she will be on regular surveillance in case she fall again.
We hadn't taken Louis in and she really wasn't up to a walk so she stayed in bed. She was really confused and her both her legs are now massively swollen. She hadn't taken her breakfast medications so I gave them to her. I left at 12.00 noon to feed Louis and get some rest leaving Helen to hold the fort. Margaret was dressed for lunch, which she didn't eat, and was transferred by hoist to the dining room to watch a video on the Large screen TV about ballet which Helen thinks she enjoyed. She was taken back to her room and hoisted back into bed and Helen was left to look after her. This proved very traumatic as during the afternoon she began to fall out of bed and Helen had to support her while trying to get hold of a carer to help. Margaret became very aggressive and actually bit Helens arm leaving a great imprint of her teeth on Helen's forearm. She also ripped poor Helen's necklaces off and threw them away. The carers helped get her back in bed and she was given a sedative.
By the time I got back to pick up Helen and take out for dinner as she had been there for eight hours without a break Margaret was calm but in some pain and I asked the RN is she could have some morphine. We went out to a Local Surf Club to have a meal with Margaret's cousin and daughter but arranged to come back at 8.30 pm to help settle Margaret down for bed. Unfortunately this message wasn't passed on to the carers so when Margaret started to ask where we were she was told that we weren't coming back. Margaret freaked out and would not remain in her room so was taken to the dining room to sit in solitary state and unattended in the dining room. When we arrived she had thrown a cup of tea and some biscuits on the floor and was very upset. I managed to get her to stand up and transfer from her armchair to her wheel chair so we could take her back to bed where with some difficulty we managed to settle her down. The RN brought in some sedatives and a sleeping tablet which she had refused to take. She took them for me and we stayed until they took effect and left her sleeping quietly. At home we both had a stiff gin and tonic as our sedatives and watched the Australian Election results.
This morning we were back at 9.00 an to find Margaret sitting on her wheely walker in her bathroom refusing to come. She was showed and dressed but was holding her partially healed arm in an awkward manner. She got out of bed and fallen in the bathroom during the night at 11.00 pm and had another fall at 6.00 am. Paradoxically she had been very quiet and well behaved and taken all her tablets. We got assistance from two carers to get her into her wheel chair and took her for a walk around the block to give her some fresh air as it is a beautiful sunny day. When we returned her GP called in. He is still concerned with the swollen legs but the infection appears to be lessening. He was worried that she may have re-broken her left arm and she will have X-rays tomorrow. He also reviewed her medications and she will be given more drugs to lessen her anxiety and aggression. He is now on call to visit any time. It is likely that Margaret will be placed on the Queensland's Health Palliative Care Program in the near future. A specialist will examine her and set up a care plan which will be administered by the RNs and monitored by the GP.
I went home just before 12.00 noon to feed Louis but shall return about 2.00 pm with Louis to try and cheer Margaret up. By then she should be a lot calmer. We should be able to leave her in the RN's care overnight and she will be on regular surveillance in case she fall again.
Friday, August 20, 2010
A Stressfull Week
On Saturday Margaret was strangely docile. She was very confused but not aggressive nor did she ask me to take her home. We spent the visit talking and going for a walk with Louis. Margaret's legs were still very swollen and the left leg was worse that the right and also very inflamed. I though that her GP was visiting over the weekend but he didn't show up on Saturday or Sunday.
On Sunday Margaret was almost non-coherent but still very quiet. She said that she hadn't eaten since Friday. We had a brief walk with Louis.
On Monday I thought that she was too ill to go out to have her hair done but she insisted. She had a nice cut and style which I thought looked very nice and i know she enjoyed her hairdressers cheerful chatter. The only problem that her legs were worse and still no GP visit.
On Tuesday I dropped into the GP's surgery and left a message that Margaret was very ill an her left leg was now seriously inflamed and painful. I needn't have bothered. When I got to the Nursing Centre Margaret was the centre of attention. She had refused her medication, struggled with her carers during her shower and was now in the dining room telling everybody that she was being poisoned and had been assaulted. The staff could not calm her and had given her an injection to settle her down. She listened to me and let me get her back to her room where I managed to get her to take most of her tablets which she had spat at the RN. The RN had phoned the GP and they tested her for a urinary infection which showed positive so they put her on antibiotics. The GP would check her that evening.
She was still delusional when left and about 6.00 pm got a call from Helen who had tried to talk to her. The RN said that Margaret had somehow escaped from a locked ward and walked 50 metres to an adjacent building and had a fall. As soon as Helen hung up the RN called me. She thought that somebody, a visitor, had let her follow them out as she did not know the code to the doors. She had multiple bruising and skin tears on her left (broken) arm. Her GP had arrived as they were dressing her arm and was appalled by her condition. He phoned me later to say that her leg was seriously affected and agreed to meet me next day when he would check up on Margaret.
On Wednesday she was still both aggressive and scared. She had refused her tablets again as the carers and RN where trying to poison her. She was also in pain. I got her to take her medication and sat with her until the GP came at about 2.00pm. All the time Margaret was trying to escape using her wheely walker or her wheelchair. I let her wheel herself down the corridor until she had to stop with exhaustion then put her back to bed. She would not eat lunch and had had no breakfast. i don't think that she had eaten anything significant since the Previous Saturday and now she was too scared to eat even for me. When the GP came he said that her infected leg was causing the delusions and confusion and that he had increased her antibiotics. By now I had booked Helen a flight from Adelaide to make sure she could see Margaret before things got too bad. The GP said that it was time.
On Thursday I picked Helen up from Brisbane Airport and drove her straight to the Nursing Home to find Margaret sitting in the dining room listening to music. She didn't want to go back to her room because she would be assaulted and even accused me of thumping her. Helen and I calmed her down and gave her her medication which she had previously refused. Her legs were terrible. We got her back on the bed and made her comfortable and she drifted in and out of sleep until lunch time. She had one bite of a sandwich and a morsel of chicken and then started howling in pain. It was pitiful to hear and watch. The RN and carer helped settle her down and get her back to bed again. Her GP dropped in and was dismayed to see her condition. She is now on heavy antibiotics and increased diuretics but the swelling remains and the infection is worse. Before he left I asked him what was the likely outcome and did she have weeks or months left. He said that if the infection gets any worse it would be days, if not possibly weeks but not months.
Today Margaret is much the same and the infection and swelling persists. She also appears to have stopped passing urine which is a sign of complete kidney failure. Margaret's GP has gone away for the weekend and my GP is taking over. By chance I had to see him for a regular checkout this afternoon and he told me that the two GPs have decided to cease all medication which had only long term affects and the milder painkillers. From now on she will be on morphine injections. He is visiting her this evening and Helen has stayed to talk to him.
During the day Margaret's cousin and her daughter dropped in to visit her. They stayed for several hours and while Margaret was drifting in and out of consciousness she appeared to enjoy their company. We all went for a walk with Louis. Margaret is still scared about being assaulted and has now added rape but there is no physical evidence to support her assertions any more than me thumping her or the carers poisoning her. I did report this to the nursing home in case Margaret is overheard by other visitors.
I shall give Helen a phone call to let her know that i will come and pick her up at 6.00 pm as it is raining.
On Sunday Margaret was almost non-coherent but still very quiet. She said that she hadn't eaten since Friday. We had a brief walk with Louis.
On Monday I thought that she was too ill to go out to have her hair done but she insisted. She had a nice cut and style which I thought looked very nice and i know she enjoyed her hairdressers cheerful chatter. The only problem that her legs were worse and still no GP visit.
On Tuesday I dropped into the GP's surgery and left a message that Margaret was very ill an her left leg was now seriously inflamed and painful. I needn't have bothered. When I got to the Nursing Centre Margaret was the centre of attention. She had refused her medication, struggled with her carers during her shower and was now in the dining room telling everybody that she was being poisoned and had been assaulted. The staff could not calm her and had given her an injection to settle her down. She listened to me and let me get her back to her room where I managed to get her to take most of her tablets which she had spat at the RN. The RN had phoned the GP and they tested her for a urinary infection which showed positive so they put her on antibiotics. The GP would check her that evening.
She was still delusional when left and about 6.00 pm got a call from Helen who had tried to talk to her. The RN said that Margaret had somehow escaped from a locked ward and walked 50 metres to an adjacent building and had a fall. As soon as Helen hung up the RN called me. She thought that somebody, a visitor, had let her follow them out as she did not know the code to the doors. She had multiple bruising and skin tears on her left (broken) arm. Her GP had arrived as they were dressing her arm and was appalled by her condition. He phoned me later to say that her leg was seriously affected and agreed to meet me next day when he would check up on Margaret.
On Wednesday she was still both aggressive and scared. She had refused her tablets again as the carers and RN where trying to poison her. She was also in pain. I got her to take her medication and sat with her until the GP came at about 2.00pm. All the time Margaret was trying to escape using her wheely walker or her wheelchair. I let her wheel herself down the corridor until she had to stop with exhaustion then put her back to bed. She would not eat lunch and had had no breakfast. i don't think that she had eaten anything significant since the Previous Saturday and now she was too scared to eat even for me. When the GP came he said that her infected leg was causing the delusions and confusion and that he had increased her antibiotics. By now I had booked Helen a flight from Adelaide to make sure she could see Margaret before things got too bad. The GP said that it was time.
On Thursday I picked Helen up from Brisbane Airport and drove her straight to the Nursing Home to find Margaret sitting in the dining room listening to music. She didn't want to go back to her room because she would be assaulted and even accused me of thumping her. Helen and I calmed her down and gave her her medication which she had previously refused. Her legs were terrible. We got her back on the bed and made her comfortable and she drifted in and out of sleep until lunch time. She had one bite of a sandwich and a morsel of chicken and then started howling in pain. It was pitiful to hear and watch. The RN and carer helped settle her down and get her back to bed again. Her GP dropped in and was dismayed to see her condition. She is now on heavy antibiotics and increased diuretics but the swelling remains and the infection is worse. Before he left I asked him what was the likely outcome and did she have weeks or months left. He said that if the infection gets any worse it would be days, if not possibly weeks but not months.
Today Margaret is much the same and the infection and swelling persists. She also appears to have stopped passing urine which is a sign of complete kidney failure. Margaret's GP has gone away for the weekend and my GP is taking over. By chance I had to see him for a regular checkout this afternoon and he told me that the two GPs have decided to cease all medication which had only long term affects and the milder painkillers. From now on she will be on morphine injections. He is visiting her this evening and Helen has stayed to talk to him.
During the day Margaret's cousin and her daughter dropped in to visit her. They stayed for several hours and while Margaret was drifting in and out of consciousness she appeared to enjoy their company. We all went for a walk with Louis. Margaret is still scared about being assaulted and has now added rape but there is no physical evidence to support her assertions any more than me thumping her or the carers poisoning her. I did report this to the nursing home in case Margaret is overheard by other visitors.
I shall give Helen a phone call to let her know that i will come and pick her up at 6.00 pm as it is raining.
Friday, August 13, 2010
Problems with the New Room - Good News About the Arm
I visited Margaret on Sunday and Monday and on both Saturday and Sunday nights Margaret had had a lot of pain and also had to get up to go to the toilet on several occasions. The visits were much the same. I took in Louis and we sat on the balcony having morning tea then I took Margaret and Louis for a long walk. I stayed about two and a half hours.
On Monday Margaret's companion complained that she had had no sleep becuase of Margaret and Margaret countered by saying that Maureen's snoring and loud TV had kept her awake but I suspect that Maureen had the better case. They decided to move Margaret to another share room where the other occupant was away in hospital having surgery for a broken hip and would not be in residence for several weeks.
Margaret was moved on Tuesday to her new room which is a lot nicer and she has the window bed overlooking the courtyard. She has a TV over her bed but doesn't really know how to use it so I set it on her favourite channel for her so she just has to switch it on. Unfortunately she also pushes buttons willy nilly and ends up lost.
The new room is near the dining room where they have diversional therapy which is usually local performers dancing or playing music. I have sat through three performances and they are quite good and I think Margaret enjoys them.
On Wednesday I took Margaret to have her arm X-rayed and while we were out made an appointment for her to have her hair done next Monday afternoon. She could have it done by a visiting hairdresser but prefers to go to her old one in Tewantin. Afterwards I took her to the Local RSL Club for a light lunch. She ate half a sandwich. It is becoming a bit worrying as she is eating less and less in spite of the Nursing Home meals looking very good.
On Thursday I took her to see her surgeon who said that her arm had healed very well and she should now have regular physio to regain mobility in the shoulder. This will be provided by the home.
During the week Margaret has been in pain and not sleeping too well and her GP has prescribed additional painkillers for overnight. She is also very cold which as the Nursing Home is kept warm for its elderly residents is a problem. She has so many blankets that they are worried about her being suffocated. I am going to take in a Doona tomorrow. This is about four blankets in warmth and is also very light .
Margaret is still very upset and wants to come home.
Her GP phoned me Monday evening, after visiting Margaret earlier. He said that Margaret is "failing" and all he is trying to do is provide some "quality of life" which because of the increased painkillers and diuretic will eventually shut her kidneys down. I spoke briefly with him a couple of hours ago and he is going to see her later.
During the week Margaret received her official confirmation that she is a high care permanent resident and I have submitted all the forms to the home and Centrelink as required. She will probably remain there for the rest of her life.
On Monday Margaret's companion complained that she had had no sleep becuase of Margaret and Margaret countered by saying that Maureen's snoring and loud TV had kept her awake but I suspect that Maureen had the better case. They decided to move Margaret to another share room where the other occupant was away in hospital having surgery for a broken hip and would not be in residence for several weeks.
Margaret was moved on Tuesday to her new room which is a lot nicer and she has the window bed overlooking the courtyard. She has a TV over her bed but doesn't really know how to use it so I set it on her favourite channel for her so she just has to switch it on. Unfortunately she also pushes buttons willy nilly and ends up lost.
The new room is near the dining room where they have diversional therapy which is usually local performers dancing or playing music. I have sat through three performances and they are quite good and I think Margaret enjoys them.
On Wednesday I took Margaret to have her arm X-rayed and while we were out made an appointment for her to have her hair done next Monday afternoon. She could have it done by a visiting hairdresser but prefers to go to her old one in Tewantin. Afterwards I took her to the Local RSL Club for a light lunch. She ate half a sandwich. It is becoming a bit worrying as she is eating less and less in spite of the Nursing Home meals looking very good.
On Thursday I took her to see her surgeon who said that her arm had healed very well and she should now have regular physio to regain mobility in the shoulder. This will be provided by the home.
During the week Margaret has been in pain and not sleeping too well and her GP has prescribed additional painkillers for overnight. She is also very cold which as the Nursing Home is kept warm for its elderly residents is a problem. She has so many blankets that they are worried about her being suffocated. I am going to take in a Doona tomorrow. This is about four blankets in warmth and is also very light .
Margaret is still very upset and wants to come home.
Her GP phoned me Monday evening, after visiting Margaret earlier. He said that Margaret is "failing" and all he is trying to do is provide some "quality of life" which because of the increased painkillers and diuretic will eventually shut her kidneys down. I spoke briefly with him a couple of hours ago and he is going to see her later.
During the week Margaret received her official confirmation that she is a high care permanent resident and I have submitted all the forms to the home and Centrelink as required. She will probably remain there for the rest of her life.
Sunday, August 8, 2010
Margaret is in The Noosa Nursing Centre High Care Unit
On Monday I sorted out a few things for Margaret to take with her into the nursing home and picked up her pre-packed medications for the next three weeks from the pharmacist. It was a fairly quiet day as I think Margaret understood that this was probably her last day living in this house. At one stage she asked me what I was going to do with the house and was relieved when I said I would stay there as long a Louis was alive.
The Blue Care RN made her visit to dress Margaret's arm and shower her. She was relieved to hear that Margaret was going into a Nursing Home as Blue Care would only provide 2 hours support a day leaving me to look after Margaret for the other 22. She also said that in her experience that people like Margaret got weaker and weaker and in a few weeks she would have to lifted in and out of bed. This would mean that she would have to go into a nursing home as lifting facilities would not fit in our little home without removing walls, She gave Margaret a cuddle and wished her the best. In turn Margaret thanked her for her care over the last few months.
On leaving the RN said that she thought that, unless the fluid could be dispersed soon, Margaret's life expectancy was very short even as little as six weeks.
After another disturbed night I took Margaret to the Nursing home at 10.00 am. The room they had for her was a share room but she would be on her own for the time being. This room was in the High Care Unit Dementia Section and the other residents we mostly severely affect by dementia so it was a bit grim. The carers and nurses introduced themselves and after a couple of hours I left her to have lunch. I told her I would return at 9.00 am next day to meet the Age Care Assessor.
On Wednesday I took in Margaret's TV and some photos at 9.00 am and we sat and waited for the assessor. At 11.30 am I phoned her office and was told that she would be there at 1.30 pm. I went home to feed Louis and get myself some lunch and checked the assessor's appointment in my diary and there it was 1.30 pm!
Margaret had had quite a good night but had had to get up several time to go to the toilet using her wheely walker. She was quite calm but very quiet.
I returned at 1.30 pm and the assessor arrived soon after. We went into a little lounge provided for the residents and had the assessment. It took about and hour and we were told, informally, that the result was that Margaret was low care based on her level of dementia but high care based on her state of health. This meant that she could be transferred out of the dementia unit and placed in a normal high care room. It would be several days before the official assessment result would be posted to us but I could get on with the paper work to get Margaret admitted permanently - at present she is on a two week respite care placement totally funded by the government.
Afterwards she had a private word with Margaret to explain what was going on. Margaret was upset as she thought she would be told that she could come home and life would return to normal. I don't know what the assessor said but Margaret, while still naturally very unhappy, agreed to stay.
I had taken Louis in to see her and he gave her great comfort. I left at 3.30 pm and said that I would return at about 10.00 am next day.
In the home they shower and dress Margaret each day and she can sit up or lie on her bed as she wants. They will also take her to the common room area to meet other residents if she wants. I can also take her out when ever I like for walks or shopping trips etc. I can take Louis in any time and there are genrally two or three other dogs about the place.
On Thursday I visited with Louis and we explored the home. It is quite large and even has a swimming pool for the residents with a walk walk down ramp. I assume it is used for physio. Margaret was reasonably happy but a bit lonely as the other residents were out of this world with dementia. We were told that she would probably be moved on Friday to a normal area upstairs. We were shown her new room which she was to share with a permanent resident called Maureen. Maureen has spread out taking up most of the space up to Margaret's bed and had a TV in the corner. This was obiviously HER room and Margaret was going to be a visitor.
Margaret was given the choice of staying where she was or moving in with Maureen and much to my surprise she opted to move in with Maureen.
On Friday I visited with out Louis because of the move. I noticed that Margaret's legs were worse and the fluid was up to her thighs. I pointed this out to the RN and he phoned her GP and her asked me to take Margaret into his surgery at 3.30 pm.
During the morning I signed Margaret's admission forms and was given the forms required to be completed then approved by the government to give Margaret permanent high care residence. I went home and took Margaret's TV with me as there was no space for it in her new room and anyway Maureen usually had hers turned up loud.
Before returning to take Margaret to the GP I phoned Centrelink, our central government agency responsible among other things for Age Pensions, Carers and Age Care, to set the ball rolling. First they cancelled my carer's allowance. Next they updated our financial status as this affects what Margaret has to pay for care in the Nursing Home and finally advised me to complete her form and take it to our local Centrelink Office. After Margaret is finally admitted our joint age pension would be cancelled and replaced with individual age pensions giving us several hundred dollars a month more income. It may take a week or so to sort things out but Margaret will remain in the nursing home anyway. In time she will get a single room.
When I returned at 3.00 pm Margaret had been moved. They had moved Maureen back into her own half of the room and Margaret had space for her bed, armchair, her wheely walker a bedside table/cupboard and a wardrobe. There was an en suite bathroom for Maureen and Margaret to share. She had access to the common room area of the unit and there is a nice outside balcony area where she can sit in the sun or share as she likes.
I took Margaret to see her GP at 3.00 pm and A was alarmed at the state of Margaret's legs. She was on the highest dose of Frusimide he was willing to give her, 200 mg. He decided to supplement it with another diuretic, Aldactone 25 mg and said he would see her in the home on Monday. He said that Margaret's legs had gone ballistic.
I took Margaret back to the home before getting the new prescription filled as she was very weak and getting her in and out of the car was becoming more difficult. Luckily our Honda Jazz has very upright high seats so I can just get her in and out OK. After getting her back to the home she had a lovely surprise. One of her carers is a Filipino lady who we used to sit with at our local club for many years. We lost touch after Margaret became ill in 2004. T didn't recognise Margaret at first but recognised me. She gave Margaret a kiss and said that she would see he most days when she was working.
I filled the prescription and after some minor problems got the RN to give Margaret her first dose. By law they must have either a signed authorisation from a GP or two RNs must hear a verbal authorisation from the GP. This meant that the RN in Margaret's are had to find another RN and then phone the GP so both received the verbal authorisation and witnessed the dispensing authority.
I left Margaret talking to Maureen and said I would return next ay.
At 10.00 am on Saturday I took Louis to visit Margaret in her new room and to meet Maureen. Margaret had had a bad night and had been up several times. Poor Maureen must have also been disturbed and remember she is also a high care resident and not too well.
We took Louis to sit outside on the balcony while we had morning tea then I took them both for a long walk around the streets surrounding the home. The home is in a quiet residential area of "Old Tewantin" and there are some very old houses. It is a nice walk and Louis found lots of new smells and trees to water.
Margaret is still not very happy but appears to fit in OK. I was told that she is normally bright and cheerful with the carers and RNs and only gets upset with me.
I am going into see this morning.
The Blue Care RN made her visit to dress Margaret's arm and shower her. She was relieved to hear that Margaret was going into a Nursing Home as Blue Care would only provide 2 hours support a day leaving me to look after Margaret for the other 22. She also said that in her experience that people like Margaret got weaker and weaker and in a few weeks she would have to lifted in and out of bed. This would mean that she would have to go into a nursing home as lifting facilities would not fit in our little home without removing walls, She gave Margaret a cuddle and wished her the best. In turn Margaret thanked her for her care over the last few months.
On leaving the RN said that she thought that, unless the fluid could be dispersed soon, Margaret's life expectancy was very short even as little as six weeks.
After another disturbed night I took Margaret to the Nursing home at 10.00 am. The room they had for her was a share room but she would be on her own for the time being. This room was in the High Care Unit Dementia Section and the other residents we mostly severely affect by dementia so it was a bit grim. The carers and nurses introduced themselves and after a couple of hours I left her to have lunch. I told her I would return at 9.00 am next day to meet the Age Care Assessor.
On Wednesday I took in Margaret's TV and some photos at 9.00 am and we sat and waited for the assessor. At 11.30 am I phoned her office and was told that she would be there at 1.30 pm. I went home to feed Louis and get myself some lunch and checked the assessor's appointment in my diary and there it was 1.30 pm!
Margaret had had quite a good night but had had to get up several time to go to the toilet using her wheely walker. She was quite calm but very quiet.
I returned at 1.30 pm and the assessor arrived soon after. We went into a little lounge provided for the residents and had the assessment. It took about and hour and we were told, informally, that the result was that Margaret was low care based on her level of dementia but high care based on her state of health. This meant that she could be transferred out of the dementia unit and placed in a normal high care room. It would be several days before the official assessment result would be posted to us but I could get on with the paper work to get Margaret admitted permanently - at present she is on a two week respite care placement totally funded by the government.
Afterwards she had a private word with Margaret to explain what was going on. Margaret was upset as she thought she would be told that she could come home and life would return to normal. I don't know what the assessor said but Margaret, while still naturally very unhappy, agreed to stay.
I had taken Louis in to see her and he gave her great comfort. I left at 3.30 pm and said that I would return at about 10.00 am next day.
In the home they shower and dress Margaret each day and she can sit up or lie on her bed as she wants. They will also take her to the common room area to meet other residents if she wants. I can also take her out when ever I like for walks or shopping trips etc. I can take Louis in any time and there are genrally two or three other dogs about the place.
On Thursday I visited with Louis and we explored the home. It is quite large and even has a swimming pool for the residents with a walk walk down ramp. I assume it is used for physio. Margaret was reasonably happy but a bit lonely as the other residents were out of this world with dementia. We were told that she would probably be moved on Friday to a normal area upstairs. We were shown her new room which she was to share with a permanent resident called Maureen. Maureen has spread out taking up most of the space up to Margaret's bed and had a TV in the corner. This was obiviously HER room and Margaret was going to be a visitor.
Margaret was given the choice of staying where she was or moving in with Maureen and much to my surprise she opted to move in with Maureen.
On Friday I visited with out Louis because of the move. I noticed that Margaret's legs were worse and the fluid was up to her thighs. I pointed this out to the RN and he phoned her GP and her asked me to take Margaret into his surgery at 3.30 pm.
During the morning I signed Margaret's admission forms and was given the forms required to be completed then approved by the government to give Margaret permanent high care residence. I went home and took Margaret's TV with me as there was no space for it in her new room and anyway Maureen usually had hers turned up loud.
Before returning to take Margaret to the GP I phoned Centrelink, our central government agency responsible among other things for Age Pensions, Carers and Age Care, to set the ball rolling. First they cancelled my carer's allowance. Next they updated our financial status as this affects what Margaret has to pay for care in the Nursing Home and finally advised me to complete her form and take it to our local Centrelink Office. After Margaret is finally admitted our joint age pension would be cancelled and replaced with individual age pensions giving us several hundred dollars a month more income. It may take a week or so to sort things out but Margaret will remain in the nursing home anyway. In time she will get a single room.
When I returned at 3.00 pm Margaret had been moved. They had moved Maureen back into her own half of the room and Margaret had space for her bed, armchair, her wheely walker a bedside table/cupboard and a wardrobe. There was an en suite bathroom for Maureen and Margaret to share. She had access to the common room area of the unit and there is a nice outside balcony area where she can sit in the sun or share as she likes.
I took Margaret to see her GP at 3.00 pm and A was alarmed at the state of Margaret's legs. She was on the highest dose of Frusimide he was willing to give her, 200 mg. He decided to supplement it with another diuretic, Aldactone 25 mg and said he would see her in the home on Monday. He said that Margaret's legs had gone ballistic.
I took Margaret back to the home before getting the new prescription filled as she was very weak and getting her in and out of the car was becoming more difficult. Luckily our Honda Jazz has very upright high seats so I can just get her in and out OK. After getting her back to the home she had a lovely surprise. One of her carers is a Filipino lady who we used to sit with at our local club for many years. We lost touch after Margaret became ill in 2004. T didn't recognise Margaret at first but recognised me. She gave Margaret a kiss and said that she would see he most days when she was working.
I filled the prescription and after some minor problems got the RN to give Margaret her first dose. By law they must have either a signed authorisation from a GP or two RNs must hear a verbal authorisation from the GP. This meant that the RN in Margaret's are had to find another RN and then phone the GP so both received the verbal authorisation and witnessed the dispensing authority.
I left Margaret talking to Maureen and said I would return next ay.
At 10.00 am on Saturday I took Louis to visit Margaret in her new room and to meet Maureen. Margaret had had a bad night and had been up several times. Poor Maureen must have also been disturbed and remember she is also a high care resident and not too well.
We took Louis to sit outside on the balcony while we had morning tea then I took them both for a long walk around the streets surrounding the home. The home is in a quiet residential area of "Old Tewantin" and there are some very old houses. It is a nice walk and Louis found lots of new smells and trees to water.
Margaret is still not very happy but appears to fit in OK. I was told that she is normally bright and cheerful with the carers and RNs and only gets upset with me.
I am going into see this morning.
Sunday, August 1, 2010
More Turmoil As A Chapter in Our Lives Comes to An End
The visit to Margaret's GP on Friday ended with a totally different result to what I expected. He gave us Margaret's new prescriptions and listened to the Blue Care RN's plan for Margaret's at home care. He than very quietly and kindly told Margaret that it wouldn't work for two reasons.
One she was much to ill and weak to be cared for at home in the short term and in his opinion she required full time nursing care. In the long term, however long she has got, she will require manual assistance just to exist. This will include assistance in getting in and out of chairs and bed and also supervision while walking. showering, toileting and even dressing.
Two she would require so much support that, unless I could afford full time nursing care, at my age my health would soon give out and we would both be in nursing homes.
Margaret was very upset and accused me of plotting " to put her away" fortunately A, told her that it had been my stated intention of caring for her until it was no longer safe to do so. It was no longer safe for either of us to continue with me as the sole carer even with boosted Blue Care support.
He phoned the Noosa Nursing Centre and ascertained that they could provide a temporary respite care bed for two weeks form next Tuesday, August 3 and following an assessment of her future needs a High Care Permanent Placing was available. I phoned the Nursing Centre after lunch and we had a look around. The respite care room is a little grim, just a bare hospital room but the permanent rooms are better and she will be able to have her own chair and TV plus all her photos and mementos. By it's very description, the other High Care residents vary in their disabilities but most are bright individuals and appeared happy in their surroundings.
I have arranged for Margaret to be visited by the Aged Care Assessment Team next Wednesday and the assessor has already received A's medical assessment of Margaret. She said it is most likely that Margaret would be assessed as High Care and I should be able to commence the permanent admission paper work in time for Margaret to move in permanently after her respite stage ends. She is not likely to live at home again.
This end the longest chapter in our lives as we have lived together for nearly 52 years.
The last three days have been very difficult, not just because of my feeling of failure in caring for Margaret but in the actual care itself. It has been very hard as almost everything Margaret does has to be supervised unless she is in bed. She can't get up out of our quite high recliner chairs without assistance. She can't dress. She can't use her normal toilet without assistance. Several times she has forgotten that she has a commode chair beside he bed and struggled into her en-suite and used the normal one. I then have to struggle to get her off it again. She doesn't find it funny if I call her Mrs Pompfrey from the classic ditty "Three Old Ladies" .
She is also in considerable pain which has begun to affect her sleep and I have had to get up several times during the night to settle her down. I was with her at 1.00, 2.00, 4.00 and 5.30 this morning before I finally cave her an additional painkiller above her normally prescribed amount.
On top of this her weepy legs soil her bed linen which I have to change and wash daily and I still have the normal housework, shopping, gardening and dog walking to do. The latter I enjoy as for a few minutes each day I can meet our other dog walking friends. I stay a few minutes in the park near home and let Louis run free to get his exercise.
Tomorrow I must pack a few things for Margaret and get all her medications put into blister packs by our local pharmacist before cooking our final dinner at home for her. I think it will one of her favourites Shepherd's Pie.
I shall next update this blog after Margaret's assessment when I know what her future holds.
One she was much to ill and weak to be cared for at home in the short term and in his opinion she required full time nursing care. In the long term, however long she has got, she will require manual assistance just to exist. This will include assistance in getting in and out of chairs and bed and also supervision while walking. showering, toileting and even dressing.
Two she would require so much support that, unless I could afford full time nursing care, at my age my health would soon give out and we would both be in nursing homes.
Margaret was very upset and accused me of plotting " to put her away" fortunately A, told her that it had been my stated intention of caring for her until it was no longer safe to do so. It was no longer safe for either of us to continue with me as the sole carer even with boosted Blue Care support.
He phoned the Noosa Nursing Centre and ascertained that they could provide a temporary respite care bed for two weeks form next Tuesday, August 3 and following an assessment of her future needs a High Care Permanent Placing was available. I phoned the Nursing Centre after lunch and we had a look around. The respite care room is a little grim, just a bare hospital room but the permanent rooms are better and she will be able to have her own chair and TV plus all her photos and mementos. By it's very description, the other High Care residents vary in their disabilities but most are bright individuals and appeared happy in their surroundings.
I have arranged for Margaret to be visited by the Aged Care Assessment Team next Wednesday and the assessor has already received A's medical assessment of Margaret. She said it is most likely that Margaret would be assessed as High Care and I should be able to commence the permanent admission paper work in time for Margaret to move in permanently after her respite stage ends. She is not likely to live at home again.
This end the longest chapter in our lives as we have lived together for nearly 52 years.
The last three days have been very difficult, not just because of my feeling of failure in caring for Margaret but in the actual care itself. It has been very hard as almost everything Margaret does has to be supervised unless she is in bed. She can't get up out of our quite high recliner chairs without assistance. She can't dress. She can't use her normal toilet without assistance. Several times she has forgotten that she has a commode chair beside he bed and struggled into her en-suite and used the normal one. I then have to struggle to get her off it again. She doesn't find it funny if I call her Mrs Pompfrey from the classic ditty "Three Old Ladies" .
She is also in considerable pain which has begun to affect her sleep and I have had to get up several times during the night to settle her down. I was with her at 1.00, 2.00, 4.00 and 5.30 this morning before I finally cave her an additional painkiller above her normally prescribed amount.
On top of this her weepy legs soil her bed linen which I have to change and wash daily and I still have the normal housework, shopping, gardening and dog walking to do. The latter I enjoy as for a few minutes each day I can meet our other dog walking friends. I stay a few minutes in the park near home and let Louis run free to get his exercise.
Tomorrow I must pack a few things for Margaret and get all her medications put into blister packs by our local pharmacist before cooking our final dinner at home for her. I think it will one of her favourites Shepherd's Pie.
I shall next update this blog after Margaret's assessment when I know what her future holds.
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