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Wolf and Daisy's Story

The Early Days
In a beat of Wolf’s heart, our lives were changed forever.

Yes Wolf’s life, but also the lives of our 5 children… and my life.

It’s easy to discount the beat that occurred in our own hearts…that very beat that coincided with Wolf’s…That specific split second in our lives, where change and loss occurred for us all.

Wolf’s stroke impacted immensely on his dear self, something that has been undeniably huge for him… but it can be overlooked that we, his family, have also suffered. We have feared and grieved the losses and change for our husband/ father, and also the losses and change for ourselves. Wolf has had so much adjusting to do, so much to come to terms with and so much to work on…..but it is important to recognise and grieve the losses of the carers too, and although the carer’s life may now revolve around caring for our loved one, we also need to care for ourselves.

When Wolf first had his stroke, we were inundated with help and support from friends and family. Without that support, I am not sure how things would have been for us during that fragile time.  I was spending every entire day with my man; holding his hand, trying to bring him back into our world, ensuring that the hospital was acting responsibly around his critical care, pushing for his rights, waiting for daily scan and test results, tending to his personal care, pressing staff and doctors for answers. There were also many a night spent  dozing in a chair by his bed, checking for the rise and fall of his chest, and remaining tuned in to every breath.

Additional to my hospital vigil, there were also great needs to fulfil at home. Our 5 children needed emotional support and comfort from me.  Each afternoon after school, the kids would hover around to hear the latest daily reports of their dad. Giving these reports was one of the hardest things I have ever had to do. Some of the questions that had to be answered for the kids tore me apart. “Will daddy die?” How do you answer that when it is expected that he will. “Will dad be able to still play soccer with me?" How do you tell them that the doctors don’t expect him to even know who we are if he survives!  I spent many nights rotating from bed to bed, wrapping myself around our grieving frightened children who would each cry themselves to sleep.

Their physical needs, too, had to be attended to such as to and from school transport, taxiing to their various appointments and activities, meals on the table and shopping and washing done.  And most importantly, brought to their dad’s bedside as often as we could manage. 

So as you can imagine, support from family and friends in these early days was a blessing to us all. But as Wolf progressed from his critical state in the clinical setting, to rehab, the outside support network began to diminish and it was time to face the real world.

Wolf was discharged from the clinical hospital after a 2 month stay, and was admitted to a rehabilitation hospital where he spent his next 6 months.  By this time we were all coming to terms with, and beginning to accept, that things were not going to go back to normal.  At this time Wolf had no use of his right side and was in a wheel chair. All his words were stolen from him like a thief in the night and he was left with no way of communication. He found gesturing difficult, was unable to write words and the picture systems were just too limiting.

During this time in rehab, Wolf spent many days in intensive care after developing several clots in his lungs.  He also developed epilepsy with fits that snowballed with only minutes between each seizure … another visit to intensive care. He had a rare reaction to one of the anti seizure medications and we almost lost him then too.

So although he had survived his stroke, his life continued to be threatened by all manner of complications which were each related to the stroke in some way. We thought we had cried all our tears and were just beginning to rejoice in our sense of relief that Wolf had survived his stoke, but there were more worrying times that followed.

Our lives were not only emotionally challenged, but physically also.  I tried to hang on to my job as I knew that once Wolf was discharged I would be a full time carer, and our family would live off a pension. So I would work the mornings and go directly to the hospital to be with Wolf for the afternoons.  I would leave the hospital at 3pm to collect the kids from school and prepare their meal and taxi them to after school activities, do the washing and a few odd jobs then back to the hospital in the evenings.

It was a strain on the kids also. Our situation meant that they did not have parents doing what parents are supposed to do. The kids spent many days and nights staying with other people when I could not leave Wolf. They often went to school without lunch, in un-ironed or dirty clothes.  They were suddenly expected to take on an increased domesticated role in the home. They were doing so much more than any other kid of their ages, but without their help I couldn’t survive.  I became a very stressed parent and my tolerance became thin….this is where I decided that it was not fair to the kids and went on antidepressants. During this time in my life I felt like I was letting my children down because there was not enough of me to go around…but it was a situation I could not control or change.

When Wolf finally came home it was wonderful. It was one of the happiest days of my life. We were a family again. But not the same family that we once were.  My biggest fear was that the children would lose their bond with their dad. Without the ability to communicate with the children, I was scared that what once was, could possibly be lost. I made a book for meal times and we started eating together as a complete family.  Wolf used the book to help him ask relevant questions about the children’s day.  There were communication charts all over our house as well as all the aids required for Wolf’s physical needs.  Rehab continued on a daily basis with trips in and out of the house to speech therapy, physiotherapy, occupational therapy, recreational therapy, learning to access the community etc. Life was full!

We learned to live on a very small income from Centre Link, and making the dollar spin has become a daily challenge that I actually enjoy. We have all grown into better people and become appreciative of those things that might once have been insignificant in our lives. Each one of the children would not be who they are today had their dad not had a stroke. They are each caring compassionate young kids with an appreciation for the small things in their lives.  We could not be a closer family. Wolf and I are truly in love, with much respect for one another. Our relationship is stronger than it ever was. When I ask Wolf whether he ever yearns for what he once had he says no…  Life is better now!  The gains have far outweighed the losses for us.

We are now 5 years down the track. Wolf is still in rehab 15 hours a week. There is a lot of running around but he is able to use public buses (when they have a ramp) and a taxi for a couple of his sessions.  I have not been able to resume my work as manager and therapist for children with Autism… I miss that. Caring for my husband has become a full time job. Wolf is still in his wheel chair and did not regain any movement down his right side but his speech has made huge leaps. The kids are carers along with me, and life is full on. Being a carer is not a piece of cake, and in addition to that I have my role as a mother and house keeper, work here and there to supplement our pension, and the role Wolf once played before his stroke. But we are oh so happy!

 
     
     
     
 
  Telephoning: 08 8443 5555 The Talkback Association for Aphasia Inc.
302 South Road, Hilton.
South Australia, 5033
talkback@aphasia.asn.au