Happy Australia Day

I can't believe it's nearly Friday again already and I haven't put up a progress report since our exciting picnic on Sunday!

On Monday Nelson was pretty tired still, but woke up when his dinner arrived just after Darius and I did. He perked up and actually fed Darius some dinner sitting on his lap. As I was leaving I saw Nelson's room mate outside who told me they'd had a little chat earlier in the day and Nelson said he was going into a nursing home. It was good to know he'd retained that.

I managed to have a nice visit on my own on Tuesday, leaving Darius at home watching the cricket with James! Happy Australia Day! Nelson was very sleepy but we had a lovely quiet time together. I talked to him about the nursing home hopefully being temporary - until he gets a bit better.

Yesterday we saw him at dinner time again, but today we managed a morning visit. I managed to coax him out of bed and he decided the balcony was the place. Darius held his hand and pulled him up and down at least 3 laps of the balcony!

I have had a grueling nursing home visit schedule most of this week and I so appreciate the help I've had from John who has worked as a nurse's aid and a diversional therapist in a nursing home before, so was just the right person to ask the right questions and notice any shortcuts and potential issues. He also kept my spirits up and it is so helpful to have someone to discuss each visit with too. I think we found the right place today which is a huge relief. I am still waiting for other inside information to cross-check things, so watch this space!

Picnic in the park

I was very excited to be taking Nelson for a picnic in the park today with Rion. I left the house in such a hurry that I accidentally turned up at the hospital with the dirty nappy originally destined for the bin in the garage still in my bag - oops. Nelson thought that was hilarious!

Rion bundled Nelson into a hospital wheelchair and when we'd signed the paperwork and got last minute doctor's approval we finally made it across the road and into the park. Rion's threats of wheelchair stunts down the stairs had Nelson a bit worried initially, but in the end she was perfectly behaved.

We shared a lovely feast and amusing conversation. Nelson ate lots of lovely tasty things and spent the whole time with an enormous smile on his face. At one point he looked a bit odd and when I asked whether he was ok, he replied, "Yes - I've eaten," and made an "I'm full to bursting" face.

For me it was fabulous to spend time with Nelson outside the hospital. It felt almost normal for a little while there.

Rion said that during their chat after the picnic he'd told her, "It's like being a baby again".

When he got back to his bed Nelson was ready for a big sleep.

Visit from the boys

Lyndon & Marlon went with Isobelle to see Nelson this morning. When I asked about it later, Nelson smiled and said they were "funny" and that they'd "played funny games".

Jacqui also visited at lunchtime so I'm sure she made sure Nelson ate well.

What next?

Nelson's care team collated their assessments of Nelson over the past week or so and sat down together in a meeting with me to discuss Nelson's condition and his future treatment. The main reports were from the Speech Pathologist, the Occupational Therapist and Nelson's doctor. Nelson has been engaging in the therapies much more than previously but still needed quite a bit of motivating to get out of bed. Unfortunately, because there is still quite significant damage and/or swelling of his brain, he is unable to concentrate well, retain what has been taught to him or notice he has made errors in his speech sufficient to self-correct. This means he hasn't been able to make much progress in his speech therapy or the occupational therapy. For example, although he is physically capable of doing it, he doesn't have a mental checklist of what to do when he's in the shower so still needs verbal prompts from someone of what to do next much of the time. If left alone he may turn on only one of the taps, leave out cleaning parts of himself, etc. Lack of retention means that this is still the case after a week of shower practice. Based on this, the team decided that Nelson can be discharged from the hospital any time after the end of next week.

Since Nelson requires a high level of care at this point, I am looking for a place in a nursing home for him. The hope is that the damage and/or swelling in his brain will heal in a matter of a few months and he will then start to improve overall. The Speech Pathologist recommended he be reassessed after 3 months but that speech therapy in the meantime was more likely to be a negative and frustrating experience for Nelson, so he's better off just talking with his visitors for that time. Once he improves then he can once again undergo rehabilitation therapy and presumably will no longer need to stay in the nursing home. Of course all that is still unknown.

Naturally Nelson wasn't very positive about not coming home when I explained this to him, but he did like the idea of no more speech therapy!

He is still on the waiting list for an MRI scan to show more details of the damage picked up by the EEG done 3 weeks ago. He will still have the scan whether he is still in hospital or not by the time it gets scheduled. The scan result won't alter the discharge decision but may help the doctor to know if there is anything that can be done on a clinical level to help the healing.

Despite my asking, neither the doctor nor the therapists can give any idea of the longer term prognosis for Nelson. We all just have to have faith that he will recover eventually. Many alternative therapists working on Nelson assure me that he will eventually recover. I am also reading a fascinating book that Brenda gave me: "The Brain that Changes Itself", which gives me a great deal of hope and provides some insight into what Nelson may be going through.

Nelson and I both very much appreciate the support and help from all of you through this! So many of you have been amazing - thank you!!

Wave from the balcony

Darius and I were walking along the pavement in front of the hospital when Nelson leant over the balcony rail and called out and waved. He looked very happy to see us.


We had quite a chat with him on the balcony and he played some games with Darius. He seemed alert and lucid, but had great difficulty expressing himself when I asked him some questions.

We had a fairly short but very good visit with him. He ate some food from the fridge that Rhonda brought in the other day and hopefully he also ate some of his hospital lunch after we left as well.

Surprising Sunday

This afternoon Nelson was surprisingly awake and active. Paul in the next bed reported that he'd been out on the balcony on his own and walking around a fair bit during the day. Allan brought "green juice" (made from green vegetables only) which Nelson did drink as he knows it's good for him. When Nelson put the covers over his head to avoid me, Allan immediately transformed it into a "peek-a-boo" game with Darius.

Once Darius had run off with Allan in hot pursuit, Nelson decided that we should walk up to find where they were (this is new and fabulous!). We found them, and then proceeded on to the Day Room together - all initiated by Nelson. We had a good chat and a bit of a look at the newspapers there. Darius played on various bits of equipment which amused Nelson, and he could see how much Darius has progressed over the past 3 months.

Nelson surprised me completely by suddenly just lifting Darius up into his arms. It's the first time he's been able or willing to do that since he's been in hospital. This is actually no mean feat since Darius now weighs 13 kg! Obviously the physio that Nelson is doing is working!

I showed Nelson the photographs of Kuen's wedding which he thought were lovely, but he did get upset because he hadn't been there.

Goodbye to Paul in the next bed who's off in the morning.

Naming names

This afternoon Nelson was very sleepy and had his eyes closed for most of my visit. He was upset to find out that he'd missed Kuen's wedding today, but wouldn't open his eyes for long enough to look at any photographs of it.

Yesterday I sat in on a speech therapy session with Nelson and he got 100% accuracy on his yes/no answers which is great! I then saw the difficulty he has with overriding the word or phrase that gets stuck in his brain and pops out all by itself when he means something completely different. He was asked to name several household objects which didn't come out without coaching. The therapist is firm but encouraging and writes the name down in front of him and then says the word with him watching her mouth. He can repeat it, but then often reverts back to the "recurring word" that pops out instead of the name of the object when he's asked to name it again straight away. The same problem happened when he was naming family members from photographs. The only person's name he got right first glance was Brenda, and Lyndon came out pretty easily too. Saying my name seemed very problematic and I was Avalon, then Angela. Darius was Avalon too, but Avalon was Angela. It was incredibly frustrating for Nelson who after havng what he had said reflected back knew it was wrong, but found it almost impossible to override the wrong word that popped out almost by itself.

He got most of the one stage instructions to do things with the objects right. In typical Nelson style, when the therapist said, "put the teaspoon in the cup", he took the teaspoon, stirred an imaginary cup of tea and then took it out again. When she asked him just to leave the spoon in the cup he replied, "but you'd never do that" - touche! Despite Nelson having a bit of a tummy ache, at the end of the session the therapist said he'd been more alert than in the session they'd had on Wednesday.

Isabella drew one last picture in Nelson's book and she and John said a very quick goodbye to Nelson. Their visit was interrupted by the speech therapy session and they were off to the airport to go home.

Artistic niece

The reports back from the speech and occupational therapists yesterday were that Nelson has been participating in therapy sessions which is definitely a turn-around. The goals that the speech pathologist is working on are increasing the reliability of Nelson's yes/no answers to 100% from 90% and getting him able to deal with 2 stage instructions. At the moment he can follow an instruction about 1 thing: "drink some water". She is aiming to have him able to follow: "drink some water and then put on your glasses".

The occupational therapist is aiming to have him get out of bed each morning and be relatively independent in the shower, shaving and cleaning his teeth and to make sure he gets some exercise to build up his condition as well as some cognition exercises. They will both continue to assess Nelson over the next week. An MRI scan is being scheduled to help assess whether there is still swelling in Nelson's brain which is another possible reason for him not making very rapid progress with his therapy.

A psychiatrist also saw Nelson last night to see whether depression could be a reason for him not engaging in his therapy sessions. He said he felt there were many frustrations that could cause Nelson to be disheartened - including his improving to the point of greater awareness of his condition - but that he could not diagnose him as being clinically depressed. He will continue to monitor his mood over the next couple of weeks.

My niece Isabella and my brother John are on a short visit to Sydney which they do each year. Isabella is very artistic and she has always had  a special bond with Nelson so he was delighted to see her yesterday. She drew 2 lovely pictures in his visitor book and in typical Nelson form he encouraged and critiqued and suggested.

Avalon and 2 of her friends arrived and started giving Nelson some lovely potatoes they'd got him so we left them with Nelson.

Late this afternoon Nelson remembered seeing Robert this morning, and Avalon yesterday. However he did get quite a few names mixed up when he was discussing it.

Brother from afar

Yesterday Nelson was very pleased to see Paul, Mark and Mick but was completely tired out by it all. By the time I got there in the early afternoon he was hiding under the covers.  Nelson said that he really enjoyed seeing everyone but has asked for less visitors as he gets easily overwhelmed.

Today Nelson's brother Robert came all the way from Queensland to visit. I got Nelson up and showered and we all had quite a good chat on the balcony. Robert got Nelson doing his hand exercises with the physio equipment which Nelson said was really difficult. Robert asked him to do both hands at once, and Nelson suggested that it wasn't humanly possible to do that.

The doctor said that the therapists are all concerned that Nelson has been very difficult to motivate and has refused to engage in the therapy for a great deal of the time. The senior Speech Pathologist has just returned from a long break, so I introduced her to Nelson who was quite surprised to see a real therapy timetable that he is meant to do each day from now.

The therapists will make a concerted effort to engage Nelson over the next week. I explained this to him and he agreed to try. To achieve this he needs space and time.

A day with the boys

Lyndon and Marlon visited Nelson today and Nelson was very happy to see his boys! They got him dressed and walked him up the corridor to have his lunch in the lounge. He ate well and was talkative. A bit of firmness and encouragement helped get him motivated to leave his bed.

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The boys thought up a quick game for their Dadda - to draw very small gemoetric shapes for dot-to-dot which seemed a good exercise for Nelson and was the cause of much laughter for all. They were there for nearly 2 hours before Nelson got tired and they returned him to his room.

Shortly afterwards, Nelson's long time friend John arrived with huge amounts of lovely food. He had a 40 minute chat with Nelson then left him to rest. Here are the boys and John on the balcony outside Nelson's room. Thanks to Issy for these photos.

Darius and I arrived a couple of hours afterwards to find Nelson still dressed and sitting on his bed but not under the covers. He had a good joke with Darius and a little chat with me. Nelson started to tuck into the food that John had left him, and managed to get through quite a bit of it. Darius did help with one of the Vietnamese rolls as entree to his own dinner. When we left he walked as far as the bathrom with us. It was so good to see him walking around!

Healing and laughter

This morning Alison and Issy visited and said they'd had a good joke and a laugh with Nelson. He ate Alley's soup with gusto and asked for his boys to visit him.

This afternoon Jean-Marc gave Nelson a Reiki healing. He was obviousy exhausted and remained asleep or unresponsive for the whole time except for waving hello to Darius (who later spent most of the visit fascinated by the horse racing on TV in the common room). Hopefully Nelson was enjoy the healing while he rested. He showed his intolerance of any noise or movement around him - which seems much worse when he's tired - by putting his head under the covers when I very very quietly and carefully put his clean clothes in the cupboard next to his bed at the end of our visit.

Fatigue on Friday

Yesterday morning Terry and Heather visited and Nelson was fairly alert and conversational. He had some muscle spasms in his stomache but then recovered shortly afterwards. He had these spasms before he was ill in hospital as a symptom of inactivity after his cancer surgery. So, the answer is to get him walking to keep things moving! Unfortunately, a lot of the time he is tired and won't move or simply doesn't want to leave the security of his bed. The occupational therapist is trying very hard to try to get Nelson moving every single week day.

Today David and Mel visited and had a lovely conversation with Nelson. The staff said he was very tired so it was difficult to get him out of bed during the day.

Great day!

This morning I dropped of Nelson's fishing fly tying kit at the hospital and then left Martin the occupational therapist to help Nelson shower and shave. Nelson was up and in the bathroom!

When I returned late afternoon the staff all told me on my way into the ward what a great day Nelson had today. He had showered, shaved and then walked up to the gym with Martin and had 10 minutes on the bike and some time and lots of jokes on the Wii. He had been able to concentrate for 10 minutes on tying a fly before he got tired and distracted and passed the vice over the Martin. That's a huge morning for Nelson! He also had a 1 hour session with a new speech pathologist - very good after not being willing to participate at all for over a week!

Nelson walked into the room after Rion, Darius and I had arrived late afternoon and broke into a huge grin when he saw Rion. We had some jokes, some using Darius' much loved hat as a prop:

Nelson told Rion a story about his doctor having gone to art school with him before ditching that to go to med school and then it turns out she is his doctor.... Rion finally told him off for winding her up, and then managed to cajole him into eating most of his Mexican bean hotpot dinner!

When we all left we tucked Nelson up for a good night's sleep after such a big positive day!

Action!

I have been quite worried about Nelson's inactivity and not wanting to get out of bed lately, as well as him refusing to have therapy sessions, or even a shower some days. Staying in bed most of the time has really started to show in his deteriorating physical condition and starts to create a downwards cycle, especially with his whole digestive tract slowing down and his blood pressure low too.

So, today my mission was to get him out of bed! It took choosing which shirt, which trousers and which side of the bed to get out of before he was up and walking to the bathroom for a shower. I helped him shower and then shave his beard off again - a pretty tough ask with a disposable razor when the whiskers were about a centimeter long! Still, he perservered and managed it, so it's safe to visit again Avalon!

Clearly the activity and standing up for half an hour got things moving and he had some stomache cramps for a short while before things resolved and he was feeling much better. We walked together up to the lifts and back, taking a quick peek in the day room where the TV is on the way back... "Oh, I remember this" occurring to him then.

I re-introduced Martin, the Occupational Therapist to him and eventually we got around to the possibility of Nelson teaching Martin how to tie fishing flies. They looked through Nelson's box of tying equipment and Nelson's eyes started to light up and some of that characteristic enthusiasm shone through as he rediscovered the intriguing bits and pieces. They looked in the fly fishing magazine brought in by John the other day and found one that Nelson thought would be easy to tie, and then Nelson was off explaining the sizes of all the pictured flies in the magazine to Martin.

It was such a relief to see him let go of "I can't"!

I had discussed my concerns with the therapists, so Martin was very pleased to see Nelson coming out of his shell after being up and about. So, the new routine is that every week day Martin will come and see Nelson every morning between 10 and 12 to get him up, showered and walking to the gym to do some exercise.

I really feel it will help Nelson to have a routine of activity like that each day and that he will soon start to feel stronger and more positive and motivated. Unfortunately it does mean that visitors between 10 and 12 would interfere with this important therapy, so I ask that this be respected.

A little trip

Today Nelson was taken to RPA to have an EEG. I went with him in the "patient transport" ambulance and stayed with him through the test. Fortunately for him (but unfortunately for the rest of us), I didn't have my camera with me. He looked simply amazing with the red pencil markings all over his head for the positioning of the measuring cables! And with the cables on too, well.... We had a good laugh.

The test was to see whether there was any seizure activity which there wasn't during the time of the test. Nelson was very lucid and even remembered the month and the year (pretty damn good for anyone on 4 January!). Like the rest of us at this time of year, he had no clue of what day of the week it would be tomorrow.

By the time we got back to Balmain Nelson just crawled into bed and went into a deep sleep. Earlier this morning and also when he woke up this afternoon he was very troubled by the noise around him - especially people talking - but seemed much happier with the pair of earplugs I got for him in his ears.

Visitor from afar

On Saturday Sherise came to visit Nelson and was given some advice on her business interactions!

Yesterday Nelson had a bit of a busy day of visitors. Isobelle took him breakfast but he was asleep for most of her visit.

Karen came all the way from NZ to visit, making a special detour in her travel plans to see Nelson. Jean-Marc came as well and gave Nelson a reiki healing for most of the visit. Nelson seemed to really feel the healing and said he appreciated it.

The noise of the floor polishing machine seemed to really upset Nelson and Jean-Marc was able to explain that Nelson is hyper-sensitive since at the moment he does not have the ability to filter out background noises and prioritise sensory input so it's very confusing and disturbing for him. A bit like receiving multiple TV stations at once.

Once the machine had left the room Nelson had quite a good conversation with Karen, remembering that she'd sprained her ankle a little while ago.

Raymond and Bev took food which Nelson woofed down, and he had a laugh with them. He remembered that the last visit they'd had a joke with the gloves, referring to Bev as "that funny lady".

Happy new year!

John Hanlon was the first visitor for 2010. He brought Nelson some fabulous food which Nelson ate much more of at dinner time.

I found him sitting on the edge of the bed and relatively talkative. He was surprised and pleased to hear it is new year's day and we shared some sparkling grape juice to celebrate.