Today I researched a guide how to handle a terminally ill patient. The advise is as follows:
- Listen, to the patient.
- Respect their position in the family.
- Share responsibility.
- Encourage them to talk.
1. Listen, to the patient.
Tick. I like to believe that we do this. We listen to Vic’s fears, concerns and wishes. Vic does not talk a lot anymore. Her basic conversation is about how she is feeling, her pain levels and tiredness…she has discussed her last wishes, her wishes for the boys. There is nothing unsaid. All her paperwork is in place.
2. Respect their position in the family.
“If the dying loved one is a parent, then it is important to allow them to continue to live with dignity in their final days. Care for them, but don’t treat them like a child. They will be much more content knowing that they maintained the role of the parent until the very end.”
When she first moved home we really did respect her role but we are now at the stage that Vic is no longer capable of being the parent. We try and consult her on everything but it is difficult because she is either sleeping or out of it with pain. Quite frankly I think Vic is relieved that the boys are settled in and that we have assumed responsibility for them. It has also provided security for the boys. I actually disagree with this point of the “Industry Guide on Dying”
3. Share responsibility.
“A better strategy is to share and delegate care responsibilities with siblings or other family members. Sometimes only one family member takes the entire responsibility and it adds to stress or depression. Sharing the responsibility will help to reduce the burden on one person and patient also get the opportunity to talk with other members as well.”
Oops GUILTY!! “EPIC FAIL” as the boys would say. Vic is my baby girl. I do not want to delegate the responsibility of caring for Vic to anyone. Danie is amazing! He fetches and carries the boys. He has even driven to the Pain Clinic and sat there for hours waiting to get a morphine script. The boys help with small things but I try and shield them as much as possible.
It is not that Esther and Lani do not offer to help. They ask if they can help all the time. Rob and Tracy also offer help all the time. Reuben and Nonthanthle said they would come and stay at home to look after Vic if we wanted to go away for a weekend…Will I ever do it? No, No, No!!! And it is not because I don’t trust them…I am selfish! I want to spend every second I can with Vic…
My sister will come stay with Vic while Jared is in hospital.
4. Encourage them to talk.
“Giving a terminally ill individual a chance to talk about their life provides two benefits: it takes their mind off of the pain associated with their illness, and helps them find peace and satisfaction with everything they have enjoyed and accomplished throughout their lives.”
We are past this stage.
5. Seek professional help.
“The individual who is caring for a terminally ill relative will likely to be burdened with a great deal of mental stress. They may also show symptoms of anxiety or depression. Family therapy or support group or psychological counselling can help the caretaker to cope up.”
We have sought professional help for the boys. They are seeing a wonderful lady, Renee, on an informal basis. There is no way I am going now. Later maybe. I have managed to keep my emotions well packaged, together and organized.
The one thing that is missing from the Guide is that no where does it say “Seek Professional Help for the Terminally Ill person” I think this is due to the fact that is assumed that at this stage of the journey Hospice is already in place. Well, maybe in the rest of the world but not in South Africa. Hospice care is only available for AIDS and Cancer patients and then also for patients with an Advanced Neurologic Disease or Organ Failure. Osteogenesis Imperfecta does not fall into any of the categories.
A country is judged on how it cares for it’s citizens. As much as I love South Africa, our government fails it’s citizens basic constitutional rights as far as medical care goes. Is there anything I can do to change it? Well I don’t vote for the ruling party, I endeavor to alleviate poverty and to make the country a better place. I will have to find a way to improve palliative care for the dying in this country.
“Death should simply become a discreet but dignified exit of a peaceful person from a helpful society …..without pain or suffering and ultimately fear (Phillipe Aries 1981)”
Well, I am seeing Prof Froehlich on Tuesday and I will NOT leave her office until she has spoken to Hospice. For years I fought to keep Vic alive. Now I will fight for her to die with dignity! Doctors have made U-Turns in the passages when they see me – this will happen again!