National Stroke Foundation - Australia

Helen

That dreaded phone call occurred on a Friday morning, Bob, my husband’s 57th birthday.
I received the message at work that my husband had collapsed at his office and was rushed to The Alfred.
"Keep calm, it's probably only a recurrence of a heart problem and he will be home tomorrow."
But I felt this was serious.

Waiting in Emergency as our three beautiful daughters, their partners and our new grand daughter gathered was a most distressing time especially when it was passed on that one of the nurses had noticed a significant left droop to Bob's face and therefore that dreaded word stroke became our main focus. We didn't know it then but we would make it through the worst. "Come on, be strong for the girls!!!"
After an eternity we were able to see him, yes a massive stroke had occurred and the effects were beginning to be obvious - speech problems, cognitive problems, physical inactivity, impulsive behaviour.

Okay, let all the family and close friends know as the outcome isn't yet known and the survival prediction poor. Someone suggested that we delegate a particular person from each part of Bob's life eg. family, friends, clubs, work etc. to be the receiver of information from one of us and to be spokesperson on our behalf to others. This idea works well and saves repeating yourself over and over when all you want is for the whole thing to stop and go away.

ut we made it through the worst.
After the initial shock, the devastation of seeing this strong man unable even to sit up unaided or to support himself unaided, or talk intelligibly or swallow safely was almost as tragic as working our way through the operations that were necessary to allow the brain to swell, through the pneumonia, through the DVT, the heart problems, the incontinence....

We needed to set some tasks or we might all fall in a heap. Our girls and myself set out to discover all we could about stroke, it's causes, it's outcomes, the support available out there because we were certainly going to need it.

Ask questions of everyone! The social workers at the hospital were a great help, associations such as Stroke Association of Victoria, National Stroke Foundation, Headway, Human Services of Victoria, Brain Foundation all sent information that educated and gave us ideas of programs that may be available for Bob at a much later stage.

The effort of daily hours spent at the Alfred, the constant worry, the decisions that had to be made and the ever changing challenges eventually took it's toll of all of us at different times. But we made it through the worst. Thank you God for a supportive, loving family and wonderful friends.

I learnt some important lessons along the way:
1. "Never, ever give up" continues to be my motto and that of other stroke survivors.
2. No matter how silly your query may sound, ask anyway. You are certain to learn something new.
3. Speak up for what you believe is right.
4. Family and friends are absolute rocks at a time like this and want to be relied upon.
5. Utilise your contacts. In our case we knew a masseuse, a physiotherapist, a builder, a music therapist, a technological genius or two, all of whom were only too pleased to offer their talents to help Bob's recovery and comfort when he came home.
6. Don't be too proud to accept help even if it is financial. In our case expenses were rising, bills were mounting and there was little coming in.

There are enough things to worry about so swallow your pride and allow good friends to assist in any way they can.
After 17 long months away from home which included 3 months in hospital and 14 in a nursing home which included two week stints in rehabilitation, Bob came home. Sure it was a new home as I had to sell our original house which was not able to meet Bob's needs, but it was still home and he was thrilled.

On discharge we were connected with ongoing services such as council assistance for showers, regular weekly respite, out patient physiotherapy, speech therapy.
Gradually these services change or modify according to need but ALL have been and still are, invaluable. Don't hesitate to take advantage of everything that is offered especially when you first get home.

Physically now after another 2 1/2 years there has not been much change, he can still take a few steps when in a full leg brace. Cognitively though the subtle improvements continue so we are pleased to still take advantage of refresher physiotherapy sessions on offer.

Once home the relationship with all medical specialists and in particular with your G.P. is still vital. From these professionals come the means to combat the ongoing pain issues, the seizures, the mini strokes, the mood swings, the depression etc. etc. But remember we made it through the worst and are strong enough to keep going forward.

Our greatest source of information has been our local Stroke Survivors Support Group which we both attend twice each month. New treatments, different therapies, different aids, alternate coping strategies, are all discussed and shared by survivors and carers. Not only is this a place to share each others achievements but also a place to seek help from others in like situations about many aspects of stroke surviving and depression which rears it's ugly head regularly.

We are also beginning to 'give back'. Recently we both were trained as mentors for stroke survivors and carers. We met some amazing people along the way. Bob occasionally participates in studies about neurological disorders or depression in the hope that the outcome of the study may help others.

He volunteers to deliver a community newsletter once a month, another way to feel good about himself. We have recently helped design a brochure for our Stroke Group to advertise the benefits of joining such a group.
Bob attends a movement group weekly and also a communication group. He loves Fridays when he attends his 'boys club', a men's group where there is chatter, challenges and mischief. We have shower assistance twice weekly and respite once a week. Visits from these carers, who have become friends, are a highlight of his week. Twice a year Bob goes into respite care in a lovely facility for two weeks. This gives him a rest from me and also gives me time to catch up and to recharge my batteries.

Both retired now, Bob forcibly and myself due to Bob's care needs, we are realising the extra time allows us to see our family and grand children more and we love that. We have become movie buffs and know where the best coffee is in most local shopping centres. Bob has a motorised scooter which he uses under supervision to travel the neighbourhood or one of our zoos or parkland.

We recently flew to Broome and onto Perth. With some modification and very careful planning, it is amazing what can be achieved. Remember, never ever give up, we won't!

Last Updated ( Wednesday, 19 November 2008 )

[ Back ]