Diary of an Illness

Monday October 9th

Peter very ill. Children came. Doctor came. Eleanor Nurse came, said I could contact her day or night. Nurse came and gave Peter an injection for the sickness and dizziness. It definitely helped.

Tuesday October 10th

Peter had a very restful and reasonable sleep. I managed a few hours, too. Sheila and Bill came. Peter still comatose from the injection. Nicky, Louise, Emma, Michael and Roshini also came. Peter passed a lot of urine (dark orange in colour).

Wednesday October 11th

Peter very out of sorts and contrary, but appears to be more with it today. Passed a great quantity of urine last night and again this morning. Eleanor nurses came and assessed Peter and, after a lot of energy had been used to try to get Peter going, in the end decided he is much too weak to undergo further treatment at Guy’s Hospital tomorrow. The journey itself would have been far too much for him to undertake. A commode chair, bottle and bedpan were delivered.

Thursday October 12th

A very stressful day. Nurses came again to assess Peter (Twilight Nurses) for further treatment. The Eleanor Doctor came (Dr Nicky). She diagnosed ADDISON’S disease. It is quite a rare occurrence these days. She tried to get him into a hospital, but that proved a no-no, so I must manage as best I can. Two care nurses are coming in tonight to settle Peter for the night. Two more will be coming in the morning. It is wonderful: four will be coming every day, even weekends. I am a bit puzzled and bewildered by his medication. I will have to make further enquiries for clarification.

Friday October 13th

The new pills are wonderful. Peter stood for the first time for two weeks. He appears much improved. Anyway, his appetite has improved: he has eaten breakfast, dinner and tea, and said he had enjoyed his food.

Care Nurses came this morning. Also Nicola came. The nurses practiced with the hoist, using Nicola as a guinea pig. The Eleanor Nurse and Dr Nicky came. Without her knowledge the Addison’s would never have been discovered, then Peter would have died in sheer agony from the continual vomiting. He was getting really exhausted. He couldn’t even keep the Complan down.

The Physio also came. She encouraged Peter to do exercises. She was very pleased that he could stand with the aid of a walking frame. She did not realise how much effort it took, and knocked him for at least the next day. He is very worried that he has not had a bowel movement for four days.

Susan, Ryan and Neil came. I feel I have been on my feet for hours (it is certainly all go), but I did take fifteen minutes off, I went out and sat in the garden. The rest and relaxation was wonderful (even though it was cold). Roshini called in on her way home from work. They (Michael and Roshini) have at last sold their house.

Saturday October 14th

First job today was to wash Peter all over. After he was settled I gave him his breaky. Michael and Roshini came and took my shopping list. Sarah came to see us: she came to see her Dad and to help me any way she could. Peter had a Complan for lunch, a little bit of fish and chips for tea. He had lots to drink: tea, orange, water. Christine and Irene came (from pottery) this afternoon. David came all the way from Somerset. Martin and Philip also came. Quite a houseful, but it is wonderful of them all to come.

Sunday October 15th

David stayed the night. He got very upset over an earring Annie had lost. I think his emotions were all upset, and to get angry took some of the pressure off. They went home before lunch. Maureen Smith came, also Chris and Alan – they came all the way from Oxford. Michael, Roshini and Katie came. Unfortunately they forgot to bring their door key with them and they had locked the house up. They had to stay until Nathan got home. I fed them sandwiches and chips. I couldn’t cook because the smell of food cooking made Peter violently sick. I saw them off about 2:30.

I had just put the kettle on to make myself a cup of tea when Father Peter arrived. He had only just returned from his hols in Canada the day before. He was tired, so it was extremely good of him to come to see Peter. Michael and Roshini brought us down a lovely roast dinner about 5 o’clock. I enjoyed it very much, Peter ate a little bit.

Monday October 16th

Two care nurses came this morning, 8:30 on the dot. Very pleasant young women. Peter passed a small motion. Chap from Church (Brian) came and gave Peter Communion. Peter much brighter, he had a good night. Barbara came. I went to the hairdressers. Emma ferried me to and from the hairdressers. She later went to the Doctor’s surgery and collected a form. Michael came, also Sarah. She said she would take me to Pottery Class on Wednesday.

Tuesday October 17th

I felt terrible this morning, but forced myself to get moving. I gave Peter his nine o’clock pills. He had tried to pass a motion and was convinced it was stuck. He made the next hour really hellish for me. The nurses came about nine o’clock (he was still on the commode). They saw to him and said "now you must realise what a woman goes through in childbirth". Anyway, he finally performed and I was very thankful that the care nurses were there to attend to him. They washed him, shaved him, and changed all his clothes, so he felt very fresh. I had just sat down for a few minutes when I was startled out of my skin by a very loud voice calling "Jean, Jean, Jean". He was convinced I hadn’t given him his pills. But in the late afternoon he felt peckish, so I made him a meal of braised steak and skinned tomatoes. He said he enjoyed it.

Wednesday October 18th

Another day. It dawned very miserable and wet. Peter very up-tight, I am not feeling at my brightest. Peter had an Ensure Plus and a drink of water, also his pills. Care nurses came and washed Peter’s hair. They had only been gone a half-hour when Peter needed the commode. I had great difficulty getting him out of his chair and supporting him to remove his pants. Eventually I managed to get him to the commode, but not before he had begun. Consequently I was literally sprinkled, also the floor, but at last I got him to the commode. He really filled it. I didn’t know what to do next. In the end I cleared up the floor; took off my blouse and skirt; washed Peter and got him settled again in his chair; washed the additional mess off the floor; emptied the commode (was very sick); came back downstairs and washed the chair; put the commode back together again (used half a bottle of Dettol in the process). Later, when everything was normal again, I went and had a quick shower and changed all my clothes, then collapsed in the chair. After about ten minutes I had a drink of water and gave myself a talking-to: "Get on with it Jean, at least you are alive".

The day got worse, more stressful. Jane and John came. John insisted I went to pottery for the afternoon. He took me at 1:15 and picked me up at 2:30. I had a very peaceful hour. Peter just had another Ensure Plus and a trifle to eat. I realise I hadn’t eaten all day so I made myself a bacon sarnie. Peter complained bitterly about the smell, but I felt justified and really enjoyed it. I also had a cup of tea, heaven.

Thursday October 19th

Peter felt a little better today. Carers came, gave him a strip wash. Ate quite well. Greengrocer came in to see Peter (got his ear bent). Maureen came, Sarah came, also District Nurse came and took blood. She said Peter had a further complication (Peter is certainly doing the job well).

Sheila arrived about 4:30, the three of them (Sheila, Bill and the dog) left at 7 o’clock. Peter had an Ensure Plus, I had a sarnie. Finding time to eat is quite a problem.

Friday October 20th

Another day of great agitation. Started off about his bowels. When I said it was only the day before yesterday he went with a vengeance, he insisted it was Tuesday (thank God I write everything down). I was able to prove to him that it was indeed Wednesday he last went. After a lot of mumbling finally went to sleep.

Care nurses came. I had the first bill for agreement to pay for the services received. District Nurse phoned to say they had lost his blood sample. Peter was very irate. He threatened they find it or else he would contact the Press. Another case of Health Authority balls-up.

He has eaten quite well today. He had lunch, and dinner this evening. Needless to say they found the sample of blood.

Rosemary phoned, we chatted for ¾ of an hour. She was absolutely full of her new boyfriend (quite Mills & Boon). She sounded happy (good on her).

Saturday October 21st

Peter feeling quite perky today. I had a very busy day, everyone seemed to be here: Michael and family, Nicola, Billy, Sarah, Matthew. Nicola very kindly brought lunch in with her, so everyone had a really good meal.

Sunday October 22nd

Peter very tired today, he got really worn out yesterday. He has slept a good deal today. I even fell asleep for about 20 minutes, I felt very disoriented when I woke up. Went to Mass this evening. Michael and Roshini cooked us a very nice dinner. I ate mine, Peter couldn’t eat his so I saved it till Monday (I had it then). I must come to terms with them going away, but at the moment I can’t bear to think of it at all.

Monday October 23rd

Peter had a good sleep last night. He had his bowels opened (thank God). Care nurses came. Peter was disturbed by constant phone calls. I managed to get to the hairdressers. Emma took me, Katie stayed with Dad, I was only gone an hour. David phoned and said he was coming to see us next day, Tuesday. Helen came in the morning, also Brian came to give Peter Communion. Eleanor Nurse phoned and said we could have a wheelchair. Also, she intended to phone the Hospital about Peter’s treatment.

Tuesday October 24th

Another stressful day. Peter had a bowel motion. It takes me all my strength to move him from his chair to his commode. I got up about 6:30 to give him his pills. Care nurses came about 9 o’clock, washed, shaved him and changed all his clothes. He always feels better after their administration. David is coming today.

Wednesday October 25th

Care nurses came about 9:30. Peter always perks up when they come. David stayed the night. Katherine stayed with her other Grandparents. David did so much in a short while. He mended the bathroom sink, also the chair. He phoned lots of different Doctors to see if they would accept Peter. He (David) will phone tomorrow morning as to whether the Doctor will accept Peter. (David was feeling very poorly himself, so I was extra thankful that he helped us so very much.) He went to Sidcup and hired a wheelchair from the Red Cross. We had to pay a £30 deposit (which I donated when we returned the wheelchair). He mended the wheelchair – the footrest was broken. He also helped me do some sorting with different things.

Peter heard on the phone that he has an appointment Monday morning to go to Guy’s Hospital in London to start his treatment. Rosemary came with her new "friend", male of course. He seemed to be a pleasant person. It was very nice of them to come. May did some shopping for me. Michael and Roshini called in, it is their 20^th wedding anniversary today.

Thursday October 26th

Quiet day so far, care nurses came . They said they would be here at 7:30 on Monday to get Peter ready for his marathon trip to hospital, his appointment is at 10:45. Transport is coming at 8:30. Sarah came and took his prescription to Dr Gupta’s surgery, still his Doctor until we hear otherwise. Peter feeling very sick today, not eating at all, and even water makes him heave and reach.

Friday October 27th

Peter slept most of the night, exhaustion I expect. I observed every hour and wetted his lips and inside his mouth. Care nurses came and gave him a strip wash and shave. Dr Elliot has accepted Peter onto his books. I am so glad as I couldn’t have faced a further upheaval regarding the appliances. We have received the appliances from the Bexley Council, but if no other Doctor would accept Peter we would have had to go through the Woolwich area, as our old Doctor’s main surgery is in Woolwich. So I would have had to go through returning the appliances and obtaining them from Woolwich council. What a load of rubbish, it didn’t seem to matter that a person was dying, red tape must be adhered to. Still, thank God, things have worked out all right.

The hospital, Guy’s, phoned today to clarify the arrangements for Monday. Peter should be well enough to go, but I know that secretly he is dreading it. Father Peter came today. He chatted to Peter for at least a half-hour.

Saturday October 28th

Care nurses were late this morning, but the weather is absolutely atrocious. The conservatory roof nearly blew off. Sam our next-door-neighbour came to our aid and helped me reduce the rain coming in, and put weights on the roof to hold it down. He is such a kind man.

Jane and John came. She had a win on the bingo so she gave me some money she and John had borrowed. It was very good of them to return the money so quickly, especially with Xmas so near. Michael and Roshini called in, Michael helped Sam do the roof. Peter has actually eaten some food today. Unfortunately, he felt very sick and couldn’t stop reaching and coughing.

Sunday October 29th

Care nurses came. Michael cooked a dinner and brought it down. Sheila and Bill came late afternoon, weather awful. Peter very tired. Went to Mass, Roshini sat with Dad.

Monday October 30th

Nurses came, as promised, at 7:30; got Peter ready to go to hospital. Unfortunately, the storms had caused havoc and travelling was very difficult. The ambulance didn’t arrive to pick Peter up till 10:30, Peter eventually got to hospital about 12:30. The ambulance driver was able to contact the hospital to tell them about the delay. Michael went with his Dad. He said I could never have managed it on my own. He apparently had to walk a very long way, pushing the wheelchair; and, as I have a stick and cannot walk unaided more than 100 yards, it would have been impossible for me.

Peter didn’t arrive home till 7 o’clock. He looked very ill and said he had had a most horrendous day. He collapsed in his chair and just slept and slept. To say he was exhausted was putting it mildly.

Tuesday October 31st

Care nurses came. Peter had a restless night. He is feeling very ill and sick. It is very worrying, I do not know what to do to give him some relief. District Nurse came. She said she would come again next week. No one can understand the constant strain of being in a permanent situation of stress.

Wednesday November 1st

Peter is in very great pain in his stomach, so I phoned the District Nurse again. She said she would come and give him and enema. Sarah came, insisted I went to pottery for an hour. Jane and John stayed with Peter while I was out. Nurse came and gave Peter an enema; he went to the toilet and said it had relieved his pain a bit. It is a bright day today, but very cold.

Thursday November 2nd

Peter feeling ill again today. District Nurse called again. Eleanor Nurse came and made me feel like a person again. She prescribed some different pills for Peter to help his sickness. She phoned the surgery and put in an order and Sarah went and picked up the prescription.

Friday November 3rd

Peter tried out the bed today. Couldn’t settle, extremely uncomfortable. Managed to get him back into his chair. He had a little sleep, then he was violently sick. He was very distressed all day. Phoned Doctor, he said perhaps the new pills would help. Drank mostly water, had one Ensure Plus.

Saturday November 4th

Carers came, Peter had his bowels opened. Comatose all day.

Sunday November 5th

Peter very ill again today. Sickness and retching back again.

Monday November 6th

Peter feeling very confused, didn’t know who care nurses were. Bed sore on bottom has broken the skin.

Tuesday November 7th

Bowels open again, very loose. Extremely demanding, then collapses completely. One Ensure, lots of water. One piece of bread soaked in soup. Eleanor Nurse came and helped me sort out his pills. I was very unsure and worried about them. It is very difficult to keep up with all the changes, it can be quite confusing. Nicola and Mick treated me to a Chinese. To say I enjoyed it puts it mildly. Peter had two prawns and a little rice, and kept it down.

Wednesday November 8th

Peter couldn’t settle for a while, then he went to sleep about 12:30pm. I just went into a very deep sleep, the first sleep for a week. Peter woke up about 2 o’clock, very concerned that he had not had his pills. He couldn’t make me hear him so he phoned Michael. Michael came straight down and had to break the window in the door. He finally got in and came to wake me up. I gave him a fright, I was so deeply asleep that it took him quite a while to wake me. I was able to convince Peter that he had had his pills. Confusion can cause a lot of stress for all parties concerned.

Thursday November 9th

Carers came, also the Eleanor Nurse (Margaret) and the Doctor came to see Peter. A fresh prescription, different pills again! Jane and John came, Jane took the prescription in to the chemist. John mended the window temporarily. I ate some more of the Chinese that Nicola had bought for me. Peter had a mouthful as well, it was still yummy. Peter complained of feeling very thirsty. Sarah reminded him that they had told him that the new pills might have that effect. Bowels not open since Tuesday, but the new pills do seem to be helping the sickness.

Friday November 10th

Michael’s birthday. The District Nurse came and took some blood. She said that the outcome would tell us whether or not the pills were working. If not, they would have to be changed again. Michael stayed the night so I could get some sleep. Sarah took the new prescription for Dad’s Ensures to the Chemist (they delivered them).

Saturday November 11th

Peter felt better today, he ate a full meal.

Sunday November 12th

Peter had a really bad day today. Peter crying with pain (eating yesterday doesn’t seem to have helped him at all). He tried and tried to pass a motion but couldn’t, finally after about an hour he finally succeeded. Very hard. District Nurse came and gave him an internal, said his bowel was quite clear. Peter insisted on sitting on the commode again for a further half-hour.

Martin came. Michael brought me down a dinner. I gave church a miss today: Roshini or Emma could not possibly have managed Peter if he needed to be moved. The cares came and Peter was quite bad-tempered, but they handled him well.

Monday November 13th

Mick’s birthday. Peter used the commode again. Nurse came and changed Peter’s pills again. I no sooner get used to one lot than they are changed again. Peter ate well today. Martin came to allow me to go to the hairdresser (complete rest for an hour). Selfish me, but I really enjoyed it.

Tuesday November 14th

Peter very grumpy today (another "don’t want" day). Constipated again (according to Peter). Maureen from Church came, Peter perked up. Sarah came, also Michael: he needed a torch to clean his loft.

Wednesday November 15^th

Peter very lethargic: no appetite at all. Two Ensures, two glasses of water all day. Went to Pottery for an hour: John took me, Jane stayed with Dad.

Thursday November 16th

Very busy day today. Peter still out of it. Care nurses came. Sheila and Bill came and stayed with Peter while Sarah took me to Crayford Craft Centre. We had a beefburger in Macdonalds. A very pleasant change and treat for me.

Friday November 17th

Chap came from Church and gave Peter Communion. Peter slept a lot but he was quite active when he was awake.

Saturday November 18th

Michael bought me new light bulbs: they had all blown in the front room. Peter still off his food. He had a bowel motion, very loose.

Sunday November 19th

A better day today. Cares came. Peter still has no appetite, but he is very subdued. Only two jugs of water today.

Monday November 20th

Peter had a bowel movement in the night, so I had a job seeing to him.

The weather is very bright and sunny. Brian came, gave us both Communion. Went to hairdressers, May came in, Emma took me and Sarah picked me up.

Tuesday November 21st

Humdrum day, still no appetite. I gave him some jelly and custard and water. Slept a lot, but when he was awake he complained of a very dry, sore mouth. I feel most inadequate, I can only moisten his lips and his mouth.

Wednesday November 22nd

Peter very loose today, quite a bit of washing and cleaning him up. (I forgot to mention that Helen came yesterday, also Barbara.) Peter very sick in the morning. Only drank water today.

Thursday November 23rd

Peter, by turn, one minute chirpy and the next minute very bad-tempered. He can no longer shout but he can still make himself felt. In the end he went to sleep very deeply. No solid food again.

Friday November 24th

Heard today, Peter’s new chair coming on Monday. Christine phoned today, very comforting talk. Peter had two bowel movements today. Carers came this morning, they are late tonight.

Saturday November 25th

Day of the "Bon Voyage" party. I feel it is going to be a very long goodbye. It was a wonderful party, a lot of people were there (not Dad). I found it all very emotional and came home early. If I had stayed I may have put a dampener on the proceedings. I had one surprise: a phone call from Matthew’s school. They told me I had won £50 on a ticket. May came home with me from the party. Peter very, very pale, and sleeping very deeply.

Sunday November 26th

Very tiring day. Peter used his commode first thing. Next, a miniature invasion: Michael, Roshini, Emma, Katy, David, Annie and Katherine arrived; tea all round. They stayed about 1½ hours. Then May came in and we found a home for the photos they gave me at the party. They are lovely photos. Expecting Martin, too. Must send cards today.

Monday November 27th

Bad day today. Peter didn’t eat a thing, he only had three Ensures. He had an unfortunate accident and messed everywhere. I had a very difficult time cleaning him up. In fact I couldn’t manage it by myself so I phoned Michael and he came down and helped me. Also my washing machine has gone wrong, and Roshini brought her washing down as her machine has gone away, too. I shall have to phone for the engineer.

STOP feeling sorry for yourself, Jean. You’ll live another day.

Peter feels very low. Ho only passed a little urine in a bottle. Care nurses came and administered to him. Phoned Doctor, he has spasms in his right shoulder: the growth is the size of a large egg.

Tuesday November 28th

Peter very poorly. Care nurses came and washed him and shaved him. Very limp and helpless. Only water and two Ensures again today.

Wednesday November 29th

Peter very tired and listless. District Nurse came and said they are trying to get Peter into a Hospice.

Thursday November 30th

Peter in considerable pain. Care nurses told me to call them if Peter became uncontrollable.

Friday December 1st to Thursday December 14th

Peter in a lot of pain. I rang care nurses and they came immediately. Peter couldn’t move at all; one arm was completely paralysed; extremely weak. They called for an ambulance (Peter was asking to go to hospital). I went in the ambulance with him. Brian arrived a few minutes before the ambulance and gave Peter Communion, he was very comforted.

After that, things happened so fast, I found it very difficult to keep up. We arrived at the hospital and Peter was put in a cubicle. Sarah and Louise arrived and we were all allowed to stay with Peter. He was still in great pain (but, of course, denying it). They came and looked at him and told us we would have to wait at least two hours. In the meantime the Eleanor Nurses were working on his behalf, they sent me home to get his pyjamas and shaving gear. Louise took me, Sarah stayed with Dad.

While we were away the Eleanor Nurse (Margaret) phoned the hospital to say they had a bed for him at the Hospice, but it must be taken within the next hour. The hospital had, by now, taken a blood test and they said they would hurry up the results. Anyway, they organised an ambulance to take him to the Hospice. Sarah phoned us at home from the hospital, and we went straight to the Hospice from home.

When we arrived there, Peter was already in bed and very thankful to be there. They are very kind at the Hospice and told us we were very welcome anytime, day or night. I stayed there all day with Peter. Sarah came and took me home about 7:30. They treated Peter, loved him, nurtured him, and did their very best to keep him comfortable.

The first couple of days and nights he was very aggressive and made everyone’s life a misery. I think he had to come to terms with the fact that he had been taken to the Hospice to die. He was such a vital man, always helping people, and always had plenty to say on all subjects. It was very difficult for him to accept the fact of his own weakness and, of course, the fact that he was dying. Each day I saw him getting weaker. He gained great comfort when the Priest went to see him. I had several talks with the Counsellor and the Doctors and staff. I found great strength and acceptance through them. They are great people, very encouraging and understanding and helpful. No misplaced sympathy or coddling, one is helped to be able to face the future and be positive, at the same time advising that grief and self-recrimination are all part of the process.

Friday December 15th

Peter died today at 2:20 this morning, Louise’s birthday. Timothy, her brother, was born on my birthday, when I was in hospital recovering from a very-near-death experience (spooky, or what?).

I was with Peter when he died. We were together. Sarah was dozing in a recliner, but as he breathed his last breath she nearly came out of her seat (sixth sense). She went straight and fetched Nicola, who had only left the bedside ten minutes before. Thank you, St Peregrine, for coming to his aid.

Life is a long, bumpy road, but stillness and inner thought can be a great help. One realises we are given the insight to see everything is inside one’s self. We are what we make ourselves, as everyone has the power to control one’s emotions: to accept, to adapt, and to know that we are eventually responsible for ourselves. There are times when one needs the comfort of other people, and the support they can give. But it should always be remembered that decisions are ultimately made by oneself.

Monday December 25th

Peter has gone to his God, very happily and peacefully. I was with him to see him and pray with him. We will always be smiling at each other. His strength and presence will forever be in my heart. We have shared so much: love, anger, excitement, joy, tears, pain, hatred, anxiety, bad tempers, fights, enjoyment, good times, bad times, poverty (never riches, moneywise), but so much richness in the ways that really matter.

We have, in fact, had a very good life, blessed by God all the way. Sometimes it may feel that one’s being ignored by God, almost deserted. It makes one question the sense of believing, almost putting faith to the test. But Peter and I could support each other in our moments of doubt; which, as our children grew older became more insistent to both of us. But somehow we would see our way become clear, God was always there to help us. We were both "prayers", but we always did it individually. We were guided and comforted along the seemingly right path, but I’ve had the choice whether or not to take certain decisions. Needless to say, I’ve sometimes made the wrong one, sometimes with very grave outcomes (that’s when faith really comes into question!)

Today was my first Xmas without him. I felt very lonely. I really tried to find peace and acceptance; and my children were there with me all day, supporting me with love and understanding. My friend, May, was also with me. I coped quite well, until quite suddenly I felt overwhelmed with realisation that we would never have the pleasure of another Xmas together, hence flight into another room where I had a little weep.

Katherine and Joanne came round this morning. Joanne brought me some flowers, Katherine was very sweet. We spent the day at Nicola’s. Martin and Philip did their Xmas day visit (always very exciting).

The house is silent now, Peter used to have the television on all night. I think I will go to bed, soon. David and Annie are coming tomorrow, so I must change the sheets on the bed. Good night all.