Joans jottings

After a meeting with the ICU doctors, with much deliberation , love and in view/consideration  of the lack of improvement in Chris’s  condition it is now time to remove the ventilator support and current treatment. Robyn was with me thankfully and a time was arranged to remove the ET tube. This gave us time to contact family members and important friends to allow them the opportunity if they wished to see Chris.

Today was Tuesday, lunch day, it had come around again. Chris and I had been invited over to John and Therese’s for a gathering of old friends we don’t  see very often and we were both looking forward to catching up with  them. I rang to tell them about Chris and excuse myself as I was too upset to join them. They of course wanted to be kept  up to date on Chris’s  condition.

We had left the hospital to come home for some lunch and to collect our thoughts. My good huggy friend Denise found out what was happening from Therese and was promptly on the doorstep to be with us. Sharon had gone back to work yesterday and arranged to have leave. She travelled the 80Ks to be here at Chris’s bedside. Ian and Paul were unable to leave work but came as soon as they finished.

Knowing that immediately following the removal of the tube and ventilator  support it was probable that Chris may not be able to breathe for long unassisted or he may continue to breathe on his own and  linger for days. Neither were prospects we liked.

I arrived  back at the hospital and we were given some time with Chris before the tube was removed.

Our good friend and retired priest Clem H was at the dinner we were supposed  to attend so I was comforted by the fact that he was more than happy to come to Chris to annoint him. (He has an uncanny knack of being in the right place at the right time).

Nothing happened post removal of the tube. Chris managed to breath on his own. He had his eyes open but it was difficult  to know what/if there was recognition there. I’d like to think so. He was resting peacefully, we knew that the staff would make sure that he was not in any pain or distress.

The boys arrived and soon after Sharon. Good mate David O’B  plus John and Therese were present.

We were able leave the hospital some time later knowing that Chris was comfortable, settled and at peace.

 

The result of the long awaited family meeting was what we had anticipated. Chris remains in a deep coma. He is being given more time in view of how long it took last time for him to wake. This time, with the additional affect of new impairment things are not looking favourable.

These photos were taken 2 days before Chris had the stroke.

This waiting is so hard. Monday has come and gone. The family meeting didn’t  happen but is rescheduled for today at 3pm. Reason being that EEG results aren’t  back and an MRI is yet to be done. Another 24hrs will be telling as he remains unconscious and unresponsive. I have been able to speak with the staff/specialists and Chris is receiving wonderful  care but this waiting, not knowing is crippling and heartbreaking for us all.

My sister and daughter are staying with me another day. They will both have to return to their respective homes soon. They want /need to know what is happening with Chris before they go.

Team Maher is handling the communications, we had it down pat from last year. Still doesn’t  make it any easier. I can manage the start of a call in a normal fashion but then either I or the person on the other end breaks down. Everyone is concerned and it’s very touching. I really would like to have something to tell them but we are in limbo, waiting and clinging to hope ourselves.

I am catching up with  my friends for Tuesday lunch today, we are trying a new place near the hospital. It will be with mixed feelings  as we are concerned for Chris yet also thrilled and relieved for Toni who has become a grandmother again. She had been worried as it was a high risk pregnancy. The birth was premature but mum and grandson are doing well.

Life is strange.

Addit: I rang ICU this morning and spoke with the doctor. He told me that the MRI was booked for 1pm and in view of that it would be better to postpone our meeting until tomorrow 3pm!

 

6 days ago Chris was doing well, we were in a good place. Today Chris lies in ICU on life support after having had an intracranial bleed. We are scheduled to have the dreaded “family meeting” on Monday, today being Saturday. I just feel numb/sad and totally overwhelmed with the situation I/we as family are confronted with now. Its the uncertainty and helplessness that engulfs you at a time like this.

Again I am amazed by the kindness and support of our friends, I feel truly humbled and blessed to have each one in our lives. I know that they are genuinely touched and saddened by events as well.

My sister is with me, as are my daughters. The boys are not far away.

I spoke to my next door neighbour yesterday to let him know about Chris, he was visibly upset and would have given me a cuddle if the colourbond fence hadn’t been in the way. He knocked on the front door last night after I’d got home from the hospital to see how Chris was. He said that he had been thinking of him all day so much so that it affected his bowls, he was totally off his game. He offered his help in any way.

It’s dawn and I doubt I’ll go back to sleep. The house is quiet, it’s comforting to know I’m not alone. The tears are never far away.

Our focus now is on looking forward, not dwelling on the past but it’s good to see just how much improvement Chris has achieved over this time and applaud his efforts. Also we acknowledge that without the medical professionals, friends, family and the many prayers, it may have been a very different story.

I think of the many hours I/we spent by Chris’s bedside and/or waiting in the visitors waiting room.

The emotional rollercoaster ride that we and many other family members were experiencing day after day was mercurial. I couldn’t help but feel for them as they faced difficult decisions and lived/dealt with the outcomes, not a lot of them happy. Many of them were away from their homes and support base, finding their way around a strange city. I saw a mix of cultures, family dynamics and different ways of coping.

I don’t miss the hour drive there and back. Or when the fuel light came on with the stress of not being sure if I had enough fuel to get me to the next petrol station. This happened one dark night in the middle of winter, travelling on the expressway on my own through the bush.

Now I don’t have to fill my car weekly, its more often monthly.

I found that shopping was an excellent way to fill in the 3 hours between visiting times. We exhausted nearly all the lunch options after having tried many of the cafes around the hospital precinct. Many were recommendations from the nursing staff.

Chris and I had planned to spend money on the house anyway. It was uncertain initially if Chris would come home but there was always the possibility that with a lot of rehabilitation he very well might. If he didn’t, would I need to sell? In any case we needed to replace the lounge. The girls helped me choose our new lounge. That then meant we needed to paint the lounge room. One of our sons was living with us but was working long hours, the other had come over from Perth for a few weeks. He couldn’t spend the time that I was spending at the hospital so offered to paint. With a painter on hand, he and I included the dining room, hall and kitchen giving the place a much needed lift. I had already made curtains for the lounge room and dining room and could now put them up. We got rid of some furniture which was no longer needed.

Next I bought a new bed, bed tables and chest of drawers for our room. The configuration of the bed was changed to enable Chris easy access to his side of the bed. I had to retrain myself to be on the other side.

Other new purchases included bed linen, doona, pillows, throws, bed lights. More cushions for the lounge and covers for the seats.

For the kitchen I bought a slow cooker that also seared the meat and had a timer to pre set. Also I bought an updated version of my rice cooker which was multi purpose and also had a timer. Both could be pre- set before I left and a meal ready on my return. It worked well.

When we knew Chris was coming home the OT came to do a home inspection. She suggested rails up our front steps which would continue up the side of the house and around the back to the back door. A grab rail at the door and in the bathroom next to the toilet plus in the shower. Other aids were recommended. The house plan gave adaquate and safe space for Chris to manage. A chair lift was needed for the front 13 steps. As it was getting close to Christmas I was concerned that the modifications may not be done in time. Fortunately the work was not delayed.

Once things were in place Chris was allowed to come home for a night to see how we managed.

It wasn’t long after this that with the necessary arrangements in place Chris was discharged, 3 days before Christmas.

We became empty nesters in January when our 2 sons moved out to a house a few suburbs away.

Chris had picked out a new sterio/sound system prior to this happening so an order was placed and soon he had the new equipment set up in the lounge room. Now he could rest back in his recliner and enjoy his music.

I took up the foxtel offer as well so that Chris could enjoy more televised sports.

Then it was time to set up one of our 3 bedrooms as a guest room and the middle room as a sitting room come sewing room. My daughter and I went shopping for a divan to put in this room. Then we would be able to accommodate additional visitors if necessary.

I have always wanted a sewing cabinet so that is now set up and in use.

The last purchase was a camera for me, that was my indulgence.

I had no other items on my shopping list.

Yesterday our daughter Robyn, who had stayed overnignt to see my sister before she went back home, decided to take Chris on an outing. They had been planning for a while and agreed that a trip to the highlands, specifically the pie shop, was where they would go.

After waving them off I finished my domestic chores, picked up my new camera and drove to our beautiful Botanic gardens. I had wanted to do this for so long and this was the perfect opportunity.

The weather couldn’t have been any better. Mid winter in the gardens gave a subdued showing of hardy flowers. The gardeners were congregated in the walled rose garden preparing to prune the dormant bushes. A reminder to me to do ours, maybe Chris will be up to it? This was his job last year.

I was heading for the cactus garden knowing that this would be where the true winter display of colour was guaranteed. With camera at the ready I spent as long as I could, taking pics of the plants, birds, bees and unusual delicate flowers amoungst the prickley spikes.

On the way back to the car, I paused to sit under a huge pine tree to take in the garden vista before me. On a branch above my head, a Magpie was preening himself. He stayed for a while, breaking out in a beautiful rendition of his best warbling. It flew down to the ground and walked off into the leaf litter, it was lunch time.

I passed the duck pond and rotunda. Many ducks , a sleeping goose and water hens were swimming and enjoying the sunshine.

Time to head home calling in to the shops on the way.

Robyn rang to say they were home and Chris was resting. I wasn’t far behind.

They had an enjoyable time together, I got to the gardens and gave my new camera a workout, so a good way to spend 2 1/2hrs.

To see some of my pics go to the menu.

Always good to see distant family. We had an enjoyable afternoon/evening with Chris’s nephew, wife and 3 boys. Our own 4 children also managed to gather which made a good reason to bring out the extra chairs and extend the dining table. This act alone involved several males studying the situation and brain storming to come up with a positive solution/result. Once seated that was where you stayed as all the space in tbe room was accommodated.

I had been busy preparing the food and with careful planning and pacing myself we had a feast.

Chris rose to the occasion and I’m sure they were all suitably impressed by his progress.

The next day was a “quiet day” while Chris re- charged his spent batteries.

My sister with whom I am very close, also spent a few days with us, she left today to drive 600ks home. Our elderly Uncle had passed away and she was down for the funeral. It was also a catch up time with all the relatives we seemed to only catch up with at times like this. Chris managed to come which suprised many of them, and they were pleased to see him.

So now we will settled back into our workable routine all the better for seeing our visitors.

When Chris arrived he was bedbound and totally dependant for ADLs. He required 3 staff to transfer and reposition him. He was in a room by himself.

Fatigue was a big issue as minimal exertion left him exhausted.

I appreciated him being so close. I could be there at meal times to help. Chris was on a soft diet now and with a chef on site the food was good , they made a big effort to provide meals he enjoyed. It helped that Robyn , our daughter, was a friend of the main chef.

Close friends could now visit and finally see/ spend some time with him. Chris had been an active member of the local church and many of the parish community were following his progress and praying for him. Also many of his golfing mates came.He enjoyed these visits.

Chris graduated from a wheel chair to a vertical trolley type mover. The physio, OT and Rehab Specialist started working on a program for Chris. As he got stronger he progressed to short walks and sessions in the gym. Soon he only required 2 staff for transfers and repositioning. They were amazed at his progress considering that the optimal time to begin rehab post stroke is 48hrs and Chris began at 10 weeks. The aim was for Chris to not use any walking aids, this way he wouldn’t develop a dependancy thus developing his balance enough so he could walk unaided. Not so easy as his co ordination and balance were not good.

The speech therapist also worked with Chris. His voice improved over time but was soft and hoarse. He was able to speak on the phone and suprised a few friends.

With a lot of hard work, Chris was improving and reaching his goals. He was determined to make up for lost time.

It was evident that with modifications in place Chris would be able to come home. So after 9 weeks the team suggested an overnight stay to see how we managed.

The overnight stay was a success and Chris was happy to reunite with Van, our pet dog and vice versa, it had been a long time (5 months), I think the staff were more concerned than we were.They were keen to see how it went.

Plans were made for discharge home. The social worker and discharge planner helped me navigate through all the paperwork required e.g. Centrelink registration, carers allowance application, medicare allowances for incontinence needs, disability parking forms and ACAT assessment.

Community services needed to be accessed before discharge.

Finally the discharge day arrived. Chris did well, better than many thought possible. The staff were exceptional and we will be forever grateful for their encouragement and care. Chris was ready for home and true to his word, he walked out.

Chris made it home for Christmas and for that we are forever grateful.

Lots of adjustments needed to be made for/by both of us before we settled into a new/next stage of our lives.

Rehab continued as an outpatient program, 2 days a week for 8 weeks. This consisted of 3 hrs doing physio, OT, hydrotherapy and 2 sessions of psychological assessments.

After a Rehab Specialist review, the doctor suggested the next step would be hydrotherapy sessions 2 times a week to help improve strength and balance.

 

Chris was encouraged to walk for exercise. He found the local cricket/football oval with a metre high fence around it, ideal for support when needed. It also meant that he was safe to take the dog for a walk.

Fatigue persisted and outings were kept short initially. As Chris improved we were able to do more.

Tuesdays are our lunch days. I had an existing arrangement with some close friends and they made sure I was able to continue to keep our lunch day throughout Chris’s illness. Since he came home the husband’s have banded together to take Chris out for lunch. They either go to the local pub or take turns to meet at one of their houses for a cook up. They enjoy their time together and Chris really appreciates their company.

The specialist told us that recovery could take up to 2 years and here we are on the verge of 1 year, who would have thought, life could have been so different for us. We have a lot to be thankful for and have learnt many lessons along the way and will  no doubt continue to do so. Life is good and full of good people/friends who have helped us more than they will ever know and for that we say thanks.

• Reading
• Sewing, spinning and knitting
• Photography, making photobooks
• Cooking
• Travel
• Gardening
• Maintaining friendships