Veronika Dos Santos
Thank you to Stepping Stone Hospice ‘outpatient’ Veronika Dos Santos for this heartfelt piece about her experience with us, which she sent to her company to encourage support for our organisation...
“Thank you so much to everyone for all your prayers, your love, your care and the little angles who support us with our needs from time to time. You know how Mike likes to tell me to keep things short… you know me… no such thing! When I do stuff… I go big or go home!
Past seven months have been INTERESTING; maybe not the most appropriate description of my experience, however it serves its purpose without drawing you into a drama series of note!
Anyway, since December with all the heavy rains, for whatever reason the street pole that feeds our electricity got hit and we were without power. So I contacted Hospice to find out if they can take me in for the night as I don’t have electricity to run my Oxygen Compressor unit. (At that stage our Generator was out of commission.)
That was my first experience with Stepping Stones Hospice. “No problem, come!” I was put into bed, plugged into oxygen given calming meds and checked on every hour to see if I was okay. The following morning I met the ladies who head up this extraordinary place. That’s where my journey with hospice care began. God always puts people, places, things and experiences in our path for a reason.
In February this year, after experiencing another exacerbation, I decided, no ways am I going to hospital for something they can do nothing about. I am not sticking needles into my arms, being blood sucked like a vampire, only to come back with the same results: We don’t know! Taking more drugs and being kept awake all night. Urg, no thanks! I am going to hospice… so booked myself in again and spent the next 10 days in what I can only describe as absolute heaven. I have never felt so peaceful, loved, cared for and surrounded with so much light in my life. You all know me as a spiritual being and all I can tell you is that heaven literally fills every space and every heart of everyone there.
Some education is desperately needed to change the mind set of people about the sick and dying. Curative care is there to help people get well so we go to doctors and hospitals for their service and they serve us well. However, when there is nothing more curative care can do to help, people are sent home to die. That is a sad, sad, state of affairs people! Every few weeks I go for my check-ups and pick up my next stock of drugs. Have my lungs checked … but oops sorry we can’t do anymore. Best we can do is keep you comfortable now. WHAT? Comfortable… where in God’s green Earth is there comfort in being sick and dying? Any normal person will be scared to death and probably give in after hearing that! Life continues for that person and their families daily. We face challenges of time, sleepless nights and all sorts of other worries.
Palliative care on the other hand is care for the living! So that they are comfortable and find peace in the last days of their lives, however long or short that time may be. A holistic approach is taken, to include family members, because they do ask the family, “How are you doing?”
I am writing to you to let you know, through their council, their love and support I found a new strength within myself and will to live to make each day count. I may not have a particularly healthy body but I am ALIVE! So Veronika, what are you going to do with being ALIVE? I had to surrender to my experience and accept this IS my life right now. I am still alive and I can still be in service no matter what the challenge is. I am not limited by my disease, my disease is limited by me. Stole that from my son’s motto, “I am not limited by my wheelchair, my wheelchair is limited by me!” You ROCK my son! From this space I was able to find myself through my challenge and when I am happy, my family are happy! Hospice is a place where people find peace. While I was there, I didn’t feel any sense of despair even though people were coming and going each day. I just sat in my room when I knew someone was about to go, all I did was talk to them in my heart and reassure them it was okay. Surround the family with love. Doing that each day and talking to the family members passing by also gave me peace. Sharing is caring, right?
In recent weeks, Stepping Stone Hospice hosted a young pregnant mom with terminal throat cancer. She delivered her baby and was taken back to Hospice with her baby for further care until she could be taken home again. Another story I saw was of a young girl whose daddy was dying and the councillors found Joe and Buddy (a Golden retriever) to support this little lady through what will be the most difficult time of her young life. And the stories are many…!
Because of a serious lack of understanding between palliative (hospice) care and curative (hospital) care people suffer needlessly. I have experienced this for myself first hand. There comes a time when one does feel like you don’t want to see another doctor or needle or tablet again. But how do we survive otherwise right?
Family at home are placed under an enormous amount of pressure in caring for their sick loved ones. This is why palliative care services exist. Hospice provided me with a care that bridged home and curative in a loving, caring environment. Enough for me to find peace within myself, time for self-reflection, counselling and physical assistance where needed. Special care and every measure was taken to ensure my comfort from oxygen, medication, food and even space. Weekly visits from volunteer doctors. Who does this? Why do they do this?
Then I met Stepping Stones Hospice CEO, Tersia Burger, who shared her story about what motivated her to start Stepping Stones. Prepare yourself for how small this world really is. Vicky Bruce succeeded in life to start Stepping Stones Hospice on 1 January 2013 and died on 18th January 2013, the first patient and their first death. Vic is the daughter of Tersia Burger. And I recently discovered that Vic’s two son’s father, is Colin Sadie (died 31 May 2016) who once was an employee of the BED Family! Colin’s unfortunate passing has left a gaping hole in their family which Tersia works tirelessly to fill. I salute you Tersia for your love and your strength and passion to fulfil Vic’s dream. I hope we can honour her by our support at Stepping Stone Hospice.
For more about Tersia and Vic’s journey, please go to http://tersiaburger.com Stepping Stone Hospice is in need of expansion due to the demand for beds. Things get so tight sometimes that the office space is even used to move patients into! Tersia informs me that they have now started taking in adolescent patients and would like to begin paediatric palliative care. Now that project is particularly close to my heart because our dear Claudia loved children and was studying nursing to become a paediatric nurse before she passed. So to honour her, I want to support Stepping Stone Hospice’s cause in taking care of these littlies.
There is so much more that Tersia and their team are involved with even in social assistance to the underprivileged… no one is left out! Absolutely no one!
Stepping Stone Hospice is an independent organisation that relies on donations from the public. One of the ways they raise funds is through their second-hand shop. So if you have any clothing items or other goodies, good enough to make it to their shelves, please can you send them our way? There are a lot of elderly folk who cannot afford to buy clothing in the shops but are willing .
I hope that my sharing this with you puts to rest any fears or concerns that you have about hospice care. At some point in all our lives we will all be faced with assisting a loved one or even having the experience ourselves. Rest assured… LOVE IS ALL AROUND!”