The focus today was Hospice.
The physician came in today and suggested that once Vic is well enough to be discharged we should have her admitted to a Step-Down facility. A Step-Down facility is an in-between Hospital and Home facility…How wonderful would that be!
Well, the meeting with Prof Froehlich went quite well, if she keeps to her commitment! She will engage in a discussion with the Pain Clinic’s Social Worker and Home Nursing Representative who deals with Hospice. I also got a letter from the Physician and Orthopod treating Vic at the Union. I will submit these letters to Hospice and if they refuse to treat Vic I will take them to the Constitutional Court. So help me God I will not give up!
Jon-Daniel posted on his BBM status that “No child should ever hear their mother cry from pain”. No child should have to. I know that Sunday evening’s fall (Hero to Zero) will haunt the boys and me forever!
Vic is just a bundle of pain today. Danie sat with her whilst I was at the Pain Clinic. We insisted that the boys go to Gold Reef City as planned. Jared needs to get his mind off his operation and Jon-Daniel needs to be with his big brother. They were traumatized by Vic’s fall. I hope they have a wonderful day!!
Tonight we planned on taking them to dinner as it would the last good meal that Jared will have in many months! Maybe I can find someone to sit with Vic. Jared’s surgery is major. It is to repair an underdeveloped reflux valve, hiatus hernia and creating a junction to tummy due to scar tissue formed from burning. I have a lot of confidence in the specialist surgeon. My biggest concern is how I am going to keep Vic in bed…Fortunately they will both be in the same hospital!
I am so tired. I have slept in a chair at the hospital and have no intention of leaving until Vic can cope without me. Hospitals are noisy and Vic is in so much pain when she moves!!
Sunday was an amazing day. Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.
Lorraine moved a chair into the sun for Vic. Vic sat basking in the winter sun sipping lots of coffee. In true form, Vic on her occasional good day, pulled the dam from under the duck. She was like a little jack-in-the-box. Needless to say, I was a spoilsport as I kept begging her to slow down…She did at 15:00 when she literally crashed.
Vic sobbed from pain and my poor sister was reduced to tears. She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!
Vic dozed on and off but kept waking from the pain. Maybe she took some additional pain meds because she seemed disoriented? Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…
Sunday afternoon the boys came home after spending the weekend with their Dad. Danie took Jared and Kirsten, (Jared’s girlfriend), to church. Vic kept trying to get out of bed. She is so darn stubborn. She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication. She kept getting out of bed. She would just not stay in bed.
I got so angry with her that I said I would fetch Jared from church. I needed to remove myself from the situation. Lorraine said “let me stay with Vic” and I said “No! Come with me”
Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…
At home she was lying in a crumpled little heap full of blood and screaming from pain. Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her. Vic went hysterical when I said I was phoning an ambulance.
“No Mommy, No!!! No ambulance! No ambulance”
We agreed that we would try to get her to hospital in my car. Jared half carried her out to the car and then the drama began. We could not swing her legs into the car! She was screaming with agony.
I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed. Eventually we repositioned Vic in the car. Jared sat behind her and cradled her in his arms. The ambulance escorted us to the hospital.
At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept. Vic screamed and screamed with pain! From 21.30 to 03:00 they x-rayed and scanned Vic. Most of the x-rays were done in the Trauma section. Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.
If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!! Mommy!! Mommy help me!!!”
The diagnosis – “impacted fracture of proximal metaphysis of right humerus”. Vic was admitted to the orthopedic ward and scheduled for surgery today. The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm, too great, for him to “pin” the arm. So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own. She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do? Pain control, bed rest… Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports??? I only picked it up when I read the reports this afternoon!!!! I had to report it to the nursing staff!
I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?
I am so angry with myself. This happened because I got angry with Vic. I should have stayed with her and not renaged my Caregiving duty. I should have had been there to bulldoze my stubborn child into remaining in bed. My temper has caused Vic endless, unbearable pain. Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this! I will never forgive myself for this!
Well with the bad comes the good as well. We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day. Actually, the whole week! Problem solved. She is too sore to move… And will more than likely still be in hospital on Wednesday.
The nurses just changed her bed linen and she screamed with pain! How are we going to take care of Vic at home? My sister offered to come through but two qualified nursing personnel could not move her without causing major distress. She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc
For the first time ever I am at a loss. I am so tired. I don’t know what to do anymore.
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!
I started this blog because I don’t trust myself to talk. If I start crying I may not stop. Actually I don’t have too many people to talk to. For the past 10 years we have been waiting for Vic to die. Initially, I think, people believe, that holding a dying person’s hand in the final hours is “romantic” but then the person doesn’t die…and the world moves along. People carry on with their own lives. That is just the way it is. People battle to handle the emotion, the waiting, the suffering. And it is okay for them to move on.
It is not only other peoples fault’s. I don’t have time to visit, go for coffee, phone… It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family. Many of my old friends must think I deserted them. Maybe I have but time in every which way has deserted me.
I have been moved by old friends and acquaintances sending me messages of support. Thank you all. I had no idea that people would actually read my blog.
Earlier today I read an blog written by Michael Wolff, a writer, where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true. I cried. http://www.caring.com/blogs/fyi-daily/the-long-long-too-long-goodbye
Good news! Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her. She will do an experimental “procedure” on Vic next week. Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion. Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance. That will be so merciful!! Vic takes 400mg of morphine, in tablet form, twice a day. She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain. The meds is not what is causing her sleeping.
Vic sleeps 95% of the time. When she is awake it is to whimper or vomit.
Jared has started to display symptoms of severe stress. His school marks are dropping and he doesn’t sleep. Like me, he is awake every couple of hours to check on his Mom. Jon-Daniel doesn’t talk. He just carries on. I worry about him – how will he handle The Day, when it comes?
In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls. Especially on Vic and the Boys souls…