Alzheimer – Vic's Final Journey

16 months of Hospice and two special angels in Heaven

In the early hours of my Dad’s 3^rd anniversary I feel compelled to give some feedback on Stepping Stone Hospice.

Sixteen months ago, with unbelievable arrogance we started Stepping Stone Hospice. What a journey it has been. We started working from my home with a registered palliative care sister, a wheelchair and very little else.

Sixteen months later we have not only moved into a lovely building but we have increased our In-Patient-Unit for 4 beds, we employ 2 nurses, a staff nurse and a team of 13 palliative trained caseworkers. We have plans to extend the building so we can increase the In-Patient-Unit to 10 beds. Every piece of furniture and equipment was donated by the community and to date we have not asked anyone for a single cent. There have been months where we had to pay the nursing staff from our own pockets, but we have never turned away a patient.

We have received beautiful letters of gratitude, established a memorial rose garden and a reputation as a great Hospice.

I am in total awe of the phenomenal nursing staff who go beyond the call of duty. They will go and sit with a family and their dying loved one at 3am in the morning… On Saturdays and Sundays they interrupt their lives to care for the destitute dying in our community.

We have an amazing group of volunteer caregivers who sacrifice their time to guide the families through the final stages of their loved ones journeys. We cry with the families, hold their hands and sing for the dying.

I am so grateful for this amazing organisation and everyone who is involved with it. I am grateful that Vic’s legacy has made a difference to other end-stage Alzheimer patients. I remember my precious father who fought with every fibre of his body to hold onto his memories, his mind, his family….

What do Alzheimer Patients Die from?

After my post https://tersiaburger.com/2013/06/16/what-is-the-difference-between-alzheimers-and-dementia/
I received a couple of emails and comments that I kept private and did not approve for publication. I decided to do this post at the time. Alzheimers is a terminal disease. Alzheimers has no survivors. The harsh truth is that there is no cure. There is no treatment.

Alzheimer’s disease is not just memory loss – Alzheimer’s kills.

• In 2010, 83,494 Americans died of Alzheimer’s disease – the 6th leading cause of death in the United States overall and the 5th leading cause of death for those aged 65 and older.

• Among 70-year-olds with Alzheimer’s, 61 percent are expected to die within a decade. Among 70-year-olds without Alzheimer’s, only 30 percent will die within a decade.

• Deaths from Alzheimer’s increased 68 percent between 2000 and 2010, while deaths from other major diseases, including the number one cause of death (heart disease), decreased.

Change in Number of Deaths
between 2000 and 2010

• Alzheimer’s is the only cause of death among the top 10 in America without a way to prevent it, cure it or even slow its progression.

• Dementia is the second largest contributor to death among older Americans, second only to heart failure.

Alzheimer’s disease is the 6th

Today, there are no survivors of Alzheimer’s. If you do not die from it, you die with it.

• One in every three seniors dies with Alzheimer’s or another dementia.

• In 2013, an estimated 450,000 people in the United States will die with Alzheimer’s, meaning they will die after developing the disease.

• Today, over 5 million Americans are living with Alzheimer’s disease, including an estimated 200,000 under the age of 65. By 2050, up to 16 million will have the disease.

• Of Americans aged 65 and over, 1 in 9 has Alzheimer’s, and 1 in 3 people aged 85 and older has the disease.

• Another American develops Alzheimer’s disease every 68 seconds. In 2050, an American will develop the disease every 33 seconds.

Alzheimer’s takes a devastating toll not just on those with the disease – but also on their caregivers. http://www.alz.org/documents_custom/2013_facts_figures_fact_sheet.pdf

Statistics can be extremely misleading. Alzheimer’s disease cannot be definitely diagnosed until after death, when the brain can be closely examined for certain microscopic changes caused by the disease. However, through thorough testing and a “process of elimination,” doctors today can diagnose what they refer to as probable Alzheimer’s disease with almost 90% accuracy.

My father’s death certificate stated “Natural Causes“… In South Africa and most countries, the law requires that a death investigation, or autopsy, be performed when someone dies under mysterious circumstances. Autopsies are usually done if the death was caused by injury, poisoning, infectious complications, foul play (homicide), or when someone dies without an attending physician. If any one of these criteria is present, the local coroner or medical examiner will perform an autopsy to determine the cause of death.

So what do Alzheimers Patients die from?

Stroke is a major cause of death in Alzheimer’s patients

Falling. Slower reaction time, difficulty recognizing changes in the height or depth of a step, can lead to tripping and falling. Changes in balance and coordination combined with poor memory can make it difficult for a person with Alzheimer’s to get from one place to another and avoid hazardous objects at the same time. He may miss a step while looking for a door or trying to listen to someone’s conversation.

Pulmonary aspiration. Aspiration is the entry of secretions or foreign material into the trachea and lungs. Alzheimer’s patients forget how to eat and/or swallow and might start choking on their food. The food basically goes down the wrong pipe. A tell-tale sign is when they start coughing whilst eating. This can lead to infection and pneumonia.

Pneumonia is a major cause of death in Alzheimer’s and dementia patients. Decreased mobility and pulmonary aspiration are major causes of pneumonia…

Urinary Tract Infection (UTI). An unidentified UTI can lead to sepsis which can in turn result in organ failure…

Dad in the ambulance en-route to hospital 1

On the 9^th of May 2011 my dad had a bad fall. He was taken to hospital by ambulance and admitted to ICU as he required 24/7 care. On the 10^th I met with the medical team. My Dad appeared to be in a coma. The Physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist Surgeon wanted to operate on my Dad’s aneurysm….

I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.

On the 14^th of May I took my Dad home. Hospice evaluated Dad and accepted him as a case. Hospice started administering Morphine, Dormicum and Serenace subcutaneously and my beautiful dad was comfortable. My Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17^th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …

Twenty three days after his first fall my Dad lost his battle against Alzheimers when he forgot how to breathe.

Did he die from Alzheimers or pneumonia? Maybe it was the fall or even the aneurysm? His death certificate read “Natural Causes” – my Dad is not an Alzheimer statistic…

What is the difference between Alzheimers and Dementia?

What is the difference between Alzheimers and Dementia?In a nutshell, dementia is a symptom, and AD is the cause of the symptom. When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living…..

Too often, patients and their family members are told by their doctors that the patient has been diagnosed with “a little bit of dementia.” They leave the doctor’s visit with a feeling of relief that at least they don’t have Alzheimer’s disease (AD).

There is great confusion about the difference between “dementia” and “Alzheimer’s disease.” The confusion is felt on the part of patients, family members, the media, and even healthcare providers. This article provides information to reduce the confusion by defining and describing these two common and often poorly understood terms.

What is the difference between Alzheimer’s disease and dementia?

“Dementia” is a term that has replaced a more out-of-date word, “senility,” to refer to cognitive changes with advanced age.

Dementia includes a group of symptoms, the most prominent of which is memory difficulty with additional problems in at least one other area of cognitive functioning, including language, attention, problem solving, spatial skills, judgment, planning, or organization. These cognitive problems are a noticeable change compared to the person’s cognitive functioning earlier in life and are severe enough to get in the way of normal daily living, such as social and occupational activities.

A good analogy to the term dementia is “fever.” Fever refers to an elevated temperature, indicating that a person is sick. But it does not give any information about what is causing the sickness. In the same way, dementia means that there is something wrong with a person’s brain, but it does not provide any information about what is causing the memory or cognitive difficulties. Dementia is not a disease; it is the clinical presentation or symptoms of a disease.

There are many possible causes of dementia. Some causes are reversible, such ascertain thyroid conditions or vitamin deficiencies. If these underlying problems are identified and treated, then the dementia reverses and the person can return to normal functioning.

However, most causes of dementia are not reversible. Rather, they are degenerative diseases of the brain that get worse over time. The most common cause of dementia is AD, accounting for as many as 70-80% of all cases of dementia.

Approximately 5.3 million Americans currently live with AD. As people get older, the prevalence of AD increases, with approximately 50% of people age 85 and older having the disease.

It is important to note, however, that although AD is extremely common in later years of life, it is not part of normal aging. For that matter, dementia is not part of normal aging. If someone has dementia (due to whatever underlying cause), it represents an important problem in need of appropriate diagnosis and treatment by a well-trained healthcare provider who specializes in degenerative diseases.

In a nutshell, dementia is a symptom, and AD is the cause of the symptom.

When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living.

Most of the time, dementia is caused by the specific brain disease, AD. However, some uncommon degenerative causes of dementia include vascular dementia (also referred to as multi-infarct dementia), frontotemporal dementia, Lewy Body disease, and chronic traumatic encephalopathy.

Contrary to what some people may think, dementia is not a less severe problem, with AD being a more severe problem. There is not a continuum with dementia on one side and AD at the extreme. Rather, there can be early or mild stages of AD, which then progress to moderate and severe stages of the disease.

One reason for the confusion about dementia and AD is that it is not possible to diagnose AD with 100% accuracy while someone is alive. Rather, AD can only truly be diagnosed after death, upon autopsy when the brain tissue is carefully examined by a specialized doctor referred to as a neuropathologist.

During life, a patient can be diagnosed with “probable AD.” This term is used by doctors and researchers to indicate that, based on the person’s symptoms, the course of the symptoms, and the results of various tests, it is very likely that the person will show pathological features of AD when the brain tissue is examined following death.

In specialty memory clinics and research programs, such as the BU ADC, the accuracy of a probable AD diagnosis can be excellent. And with the results of exciting new research, such as that being conducted at the BU ADC, the accuracy of AD diagnosis during life is getting better and better.

This contribution was made by Dr. Robert Stern, Director of the BU ADC Clinical Core.

Source BU ADC Bulletin

http://www.alzheimersreadingroom.com/2010/06/whats-difference-between-alzheimers-and.html

ALZHEIMER’S – A SPECIAL POEM

My beautiful dad died of Alzheimer’s.

This poem is for you Daddy. You are my hero; the best father in the world. You loved unconditionally. you held onto your dignity with superhuman effort….

I was so proud of you. You clung to your old-fashioned manners and values until death.

I am glad you died with your dignity intact. I loved you every day of your life and will continue to love you every day of my life.

A special Poem

Do not ask me to remember.

Don’t try to make me understand.

Let me rest and know you’re with me.

Kiss my cheek and hold my hand.

I’m confused beyond your concept.

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me.

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different ‘though I try.

Just remember that I need you,

That the best of me is gone.

Please don’t fail to stand beside me,

Love me ’till my life is done.

– Unknown

My Dad a month before his death….it was such a wonderful day!

My dad and I on my wedding day

Simply the best

Vic adored her Gramps and he adored her!

My hero!

Caregiver Isolation

It happened without warning…

In 2002 I was on top of the world. My career was at an all-time high, financially we were secure and I LOVED my job. I was able to work long hours and spend time with my friends. I was on 9 Church Committee’s and very involved with community work in the poor areas.

Then it happened…Vic had her blotched back surgery and our lives changed forever. I spent 22 days in the waiting room outside the Intensive Care Unit. My life ground to a halt.

We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings. I felt over-whelmed and out of control. Doctors and nurses prodding and touching my child. To them she was a commodity. But, to me, she was my life.

Slowly but surely my life changed… I became fixated with finding a “solution” to my child’s devastating health problems. After all, I am a Baby Boomer. We don’t accept bad situations. We find solutions. We sort out problems. I refused to accept the doctors’ prognosis as I did when she was a little girl. I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler… I refused to accept it. Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys. The ventilators were turned off and Vic continued to breathe, live….

We went from one doctor to the next. I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism. I worked longer hours in-between surgeries. Quite frankly, work became a crutch. I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…

My fear, despair and pain became my constant companion. My computer and the internet my trusted friend…

One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”

“Of course I love my family! Why are you asking such a question?” I replied

“Because you are never home….”

I had to sit down and reassess my life. Quite honestly the financial implications of keeping Vic alive and care for her was daunting. I feared going home because I could not handle Vic’s pain…. I knew in my heart there was no cure. The mere thought of Vic suffering for endless years were terrifying! I could not bear to see the fear and helpless desperation in the boys’ eyes.

So contrary to what I have written before, and comments that have been left, I have not been the best mother. There was a time that I ran away. I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!” I felt lost in the in-balance of my life. No matter where I turned it was work and responsibility!

In 2009 my Dad came to live with us. He suffered from Alzheimer’s.

Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.

I started sleeping downstairs many years ago when Vic was so ill. I was scared I would not hear her if I slept upstairs. I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa. This continued when my Dad lived with us. I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching! The intercom was the 911 call.

I slowly and inextricably slipped into depression. My entire life was dominated by my fears for my child. The caregiving demands steadily increased as the years passed and the situation deteriorated. It became a dark and difficult period for the entire family. We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday. Every activity demanded a great deal of planning. We became more and more isolated as a family.

It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home. Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.

My salvation was cyberspace. I joined an Alzheimer support group, https://www.caring.com. Without the support group I would never had coped with my dad’s descend into Alzheimer’s. A year ago I started blogging on Vic’s final journey. I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words. I receive advice, support and information from a loving cyber-community.

I however realize that I need re-join life. There are days that I just want to stay on my sofa with a blanket pulled over my head. I fear that if I sleep in a bed I will never get out of it. In the TV lounge there is always people. Whether it be the boys, Danie or the housemaids.

Today I had tea with an old friend. For almost 4 years I have not been able to see her. She has a young son that I have never seen. Our friendship was reduced to the odd phone call or text message. Often she would phone and there would be a crisis with Vic. I would say “I will phone you back” and never get around to it. I isolated myself from friends. I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.

My life centred round my sick child and family.

Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed. I have had tea with my new Magnolia friends and Christelle. We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister! I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house. I have seen a psychiatrist and take antidepressants. We have started Stepping Stone Hospice.

How amazing is this?

If the truth be known it is not amazing at all. I am dying on the inside. I cry uncontrollably – mostly when everyone has gone to bed. If the boys were not living with us it would have been so different. I KNOW I would still have been in bed. I am consumed with longing for my child. Last night I replayed 100’s of voicemail messages that Vic had left me….

“Love you Mommy…”

“Love you Baby Girl”

The Thank You Award

Thank you to my dear friend Shaun (and his beloved Dawn) at http://prayingforoneday.wordpress.com/2013/04/07/the-thank-you-award-3/ for this beautiful award.

During Vic’s brave journey I have had phenomenal support from Cyber Space. I want to use this opportunity to thank each and every one of my 209 followers for caring, leaving hugs and encouraging comments. I know that Vic’s journey had an effect on many people’s lives. Some found it difficult to follow our journey and others persevered.

Some people wrote me emails, many left encouraging comments, others prayed for us, some wrote beautiful poetry tributes to Vic, some dedicated songs to her…..Many just left “hugs” …. Some of you lit candles for my child, cried with me…

I need you to know how much I appreciated your support, advice and love.

So, contrary to the rules of the award I am not awarding the award to six bloggers. I am awarding it to all my blogger friends. Thank you for your love, compassion, advice, kindness, love and support. I could never have gotten through this terrible time without your love and support. From the bottom of my heart “THANK YOU!”

I would be remiss in thanking my beautiful Vic for the honour and privilege of being your Mom. I love you with all my heart and always will.

RULES :

1. As usual a big thank you and a link back to the person who nominated you.

2. Mention 5 things you would like to do with your life, no matter how mad or tame.

3. Nominate six bloggers and say why they have left their mark on you. Hence the name “The Thank You Award”

4. Let them know.

5. Say a big THANK YOU TO EVERYONE ON WORDPRESS!!

5 Things about me that are Mad or Tame

1. I got a motorbike for my 50^th birthday

2. I would rather travel to a war-torn country like Afghanistan than any European country

3. I want to be the oldest person ever to parachute

4. I love travelling and exploring on my own

5. I will eat oleander leaves if I am I ever diagnosed with Alzheimer’s.

I thank each and every one of you. If you are reading this PLEASE accept the award and pass it forward.

I now nominate all my Blogger Friends for the THANK YOU AWARD… I thank you all!

With love from my blog to yours…..

For some dying is hard work. 18.7.2012

Jon-Daniel, Jared, Tersia, Vic, Dad — Less than one month before my Dad died.

“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”

The journey of dying has many stages – I have heard it called check-in stations. I know that some people bypass some of the stages/stations. Some people take their time and linger. Some people die quickly and easily, like my beloved Dad and best friend Marlene.

My dad suffered with a terminal illness called Alzheimer’s. It was dreadful seeing that proud, dignified man’s brain slowly degenerate. He lived with us for the last 18 months of his life.

After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc. On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt. Dad played with the little ones and at the end of the afternoon abruptly got up and walked off. We let him be – he got tired of people and confused after a while.

An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat. He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge. Obviously my Dad’s balance was deteriorating. I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…

On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day. He recognized no-one and his legs no longer received the walk commands… Every time he got out of bed he would fall. I was sleeping on the second bed in his room so I could hear him get up. I would put my arm across his chest so I would wake up when he moved.

On the 4^th of May 2011 Vic was admitted to hospital for operation number 80. On the 6^th of May Vic spent 6.5 hours in theatre with her colostomy reversal. The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic” However in true Vic form Vic went back into theatre on the 7^th of May for another 3 .5 hour procedure. Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted. Even the pain of the Elastoplast in her neck is too much post-op. Apparently it is not a common error but it happens. With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…

By the 9^th of May I was absolutely exhausted. I had been unable to spend any time with the boys. And they really needed me. Between Vic/hospital/work/ Dad and the boys I was absolutely torn.

That night I did not hear my Dad get up during the night. He fell again. We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly. Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU. Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead. Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.

My dearest friend was dead. She had simply had a heart attack and died! I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!

The next day I met with the medical team. Dad appeared to be in a coma. The physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist surgeon wanted to operate on my Dad’s aneurysm.

I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.

On the 13^th it was my dearest Marlene’s funeral. The next day I discharged my Dad from the hospital and brought him home. We had received the Hospice bed and Hospice had evaluated and accepted dad as a case. On the 16^th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously. Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17^th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …

I played his favorite classical music and tried to keep him comfortable. I treasured every moment that I sat and listened to his labored breathing but I was at peace. There was nothing unsaid between the two of us. Yet I was so sad…I did not expect it to happen that soon.

On the 20^th of May my Dad lost his battle against Alzheimers when he forgot how to breathe. Twenty three days after his first fall…

Why the detailed timeline in this post?

Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…

For a long time Marlene wanted to die. She did her best and yet only when it was her time did she go. Not on her timing, terms or conditions. But when her time came it was quick and hopefully not too painful. Marlene wasn’t ill. She was sick of life!

If I could ask my dad I think he would have been surprised at how quickly he died. Do I regret my decision to not allow aggressive treatment? No! I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!

Vic has lingered for 10 years… It is really hard work for her…

Who is taking care of the caregiver? 5.7.2012

When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups. I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20^th of May 2011. On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys. I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group. http://www.caring.com/home-care. The practical advice of caring for an AD patient was of immeasurable help. The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.

So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted. I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html

I just knew there would be solid, practical advice in the article.

Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”

Exercise!

Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”

Right on Carol. I don’t have time. My days are very long and I don’t get a lot of off-time. Last year Danie and I went for a walk every night. Sometimes the boys joined us. It was great and I miss it. But I have decided that I will start exercising today!

Volunteer for service to others.
Carol Blackwell wrote: “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”

Carol you are weird. I don’t have time to sit and do anything. I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of… For many years I was very involved in working with the less fortunate. I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.” Done and dusted. One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival. Selfish – maybe… For now that is the way it has to be.

Do things you enjoy—you deserve it.
Carol Blackburn wrote: “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “

Tick. I love my Children and grandchildren. I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck. I desperately miss my UK grandchildren. I am permanently miserable when I think of them. I miss them with every fiber of my body. Sometimes I am so weepy that I cannot even Skype with them.

I am so happy that Lanie and Tom have moved to Johannesburg. Now we see them and the girls on a regular basis. We spend a lot of quality time together.

Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…

Liza (the youngest daughter) and her husband have finished sailing around the world. I look forward to flying down to Cape Town to visit with them. As soon as Vic is able to cope without me we will fly off…

Vic finds the noise a little distressing. But the little ones know Aunty Vic is ill and are so good!

Carol is right. I enjoy having the grandchildren around and I deserve to have my grandchildren around me. Grandchildren are the joy of my life! And I love playing Cityville on Facebook.

Consider meditation/yoga.
Carol wrote: “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”

Maybe one day when I have time… and the energy.

Don’t be a martyr.
Carol wrote: “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it. Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “

“Is there someone who can come in for a few hours and let you take a break? Someone from church? A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”

My dearest friend, Gillian, wrote:”I would like to half your work and cares. Put you in a bed for sleep therapy. But I know you won’t trust a soul with your family”. Few people know me as well as Gillian does. I cannot leave Vic. There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”. Vic ain’t heavy she is my baby.

I am trying to get Hospice involved. Danie does help a lot and so do the boys. Esther bathed Vic on Tuesday whilst I was at a meeting. The church and I deserted one another some time back. I don’t have many friends.

People have their own lives. We live in a world where we don’t have time for other people’s problems.

Only a mother who has watched her child suffer will understand the despair of another mother. Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…

Smile or laugh each day.
Carol Blackwell wrote:

We do. Today I watched Rango with the boys. It was so funny.

Cut yourself some slack.
The wise Carol Blackwell wrote: “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”

This week I am truly wallowing in self-pity. I have been guilty of impatience, I have lacked understanding. I am petrified that Vic’s pain and suffering will continue for many more years. It is strange that Vic is having a better week than she has had in three months. As Esther said, her eyes are bright and she has mobilised pretty well. She is less tired… What if this vicious cycle of pain and suffering continues?

Don’t lose hope.
Carol Blackwell wrote: “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”

Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta. But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction. Today I found a website where a doctor who claims great success with the treatment of frozen abdomens. On the surface it seems very positive. http://www.prweb.com/releases/2012/5/prweb9432209.htm

Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life. If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering. I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”

So for today and maybe the rest of the week I will hold onto my new hope. “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.” Until I receive a reply to my enquiries…

To all my friends, cyber friends and family thank you for your support and love! Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.

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I thank each and every one of you. If you are reading this PLEASE accept the award and pass it forward.

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