Unconditional support…

Unconditional support…

leukaemia logo

I’m a single mum of 3 with a 10 year old diagnosed with leukaemia a month ago. I know the facts and figures; in 2012 leukemia developed in 352,000 people globally and caused 265,000 deaths. Alarming, I can do nothing other than have faith in the future. The chemotherapy is tough and I have to be strong for my little Benjamin.

When Ben started chemo he lost all his hair in a week and continuously throws up all the time. The steroids are also making him blow up like a balloon. He stays in bed most days and due to the heavy medication load. Also, we have to be so careful from any form of germs; he cannot be in contact with anyone who has not had a full antibacterial body wash. This makes his life very lonely.

This new hygienic home life is really constraining. My neighbor gave me the name of an organization where you can book anyone in the health care business online. From work, I am able to get nurses, caregivers, physiotherapists, nutritionists, masseuse…anyone who can help me alleviate the burden of this disease. Ben now gets so much extra care that it makes him feel loved and cared for. They also teach us the dos and don’t of the lifestyle we all have to religiously follow. Moreover, without them now I would be lost!

The father of my children moved to Africa years ago for an oil and gas project and has never returned home. We kept in contact for a while and then little by little less and less. He found a new life in Nigeria so we no longer exist and the children have lost their father figure for the moment (we hope). We do not even know if Ben’s dad even got the news of his diagnosis.

Presently we must say that in this terrible situation we have put all the cards in place for the best to happen. In this worst case scenario, Ben receives the best care possible; has a wonderful loving family supporting him, incredible care taker team following his every move and the flexibility of his school skyping him for classes every day he is up to it.

We are very lucky to be living on a continent where medical facilities are everywhere and the annex caregivers in abundance. We are also blessed to have generous neighbors who share our pain and find solutions to help us. Our community really is doing everything to give us the support that we need in an unconditional manner.

World Cancer Report 2014. World Health Organization. 2014. pp. Chapter 5.13.
ISBN 9283204298.
Visit http://www.nature.com/leu/index.html

Pancreatic cancer

Pancreatic cancer

cancer logo

It takes me hours to get to mums house by train, sometimes even a half a day with a number of changes and schedule disruptions. On weekends when I get there eventually, my whole time is spent organising the mess that has been accumulated throughout the week. Dad left us 6 months ago with pancreatic cancer. It took him by a storm so quickly that mum has plunged into a depression and has forgotten her own life.

People tell me that she has to go through these motions of the ocean, that the blues times are important to cross, then the sky can reappear after this period of mourning. Meanwhile, many times one just omits that life is worth living. I have tried to knock some sense into her but it is really tough. There is like a defence mechanism that keeps happiness on the doorstep. So I have accepted this predicament for now and have tried to help her in every way I can to go through this.

Last week I hired help to accompany her in the everyday chores and others who come to make certain she has taken her medication and at least gotten out of bed and washed. I have seen a considerable improvement in a short while. They have immediately taken an important place in her life; with the daily care her spirits have improved already. At the age of 80, it is hard to get back on your feet so fast but with the right team around helping you with authentic smiles; it makes all the difference in the world.

If any of you is in the same position as I was (I can now use the past tense), definitely hire caregivers for the task. It makes a big difference to those who are in need. It brightens up their world to have life again around the house if you live too far away to be there every day. In turn, your own life is much less stressful, as you know your loved ones are in good hands.

I asked mum if she would like to go away with me for Christmas and she replied no thank you. To my surprise, I asked her why? She said that she was making a Christmas tree for her caregivers and making a turkey for them to share and enjoy. She even invited the village pastor for a little bible reading. I thought to myself that happiness comes when you least expect it.

For more download this PDF http://publications.cancerresearchuk.org/downloads/product/CS_KF_PANCREAS.pdf

The sugar killer

The sugar killer

sugar

To date, over 387,000 live with it. Dad was diagnosed last year after we noticed he was loosing weight and urinating frequently. We took him in for a check up at the clinic and the doctor was quite alarmed at the results.

We completely changed the household diet to a healthier more nutritious one. On the caretaker website that we use to hire all our professional aid, we found a nutritionist come and help us understand food associations and a how to compose a proper meal. There are so many different diets for diabetes that it became fascinating to understand them, the importance of the right ingredients as well as master the cooking skills.

There was another radical change in the family routine; we all started to exercise more to entice dad to accompany us, as it is so important to have some sort of activity for diabetics. Some went to the YMCA pool; others went on walks or bike rides as transportation… whenever we all could, we would! Mom even joined a senior yoga class at the town hall that she actually even started to enjoy. All of a sudden dad found the whole family engaged in some sort of activity on a regular basis so he wanted to be a part of it too.

Thanks to the help we hired to accompany us in the understanding of what we needed to change in order to help dad, we learned so much about how important a balanced life is for our health. We can take our bodies for granted until we truly get it and live life according to the laws of health.

Dad now takes great pride in boasting his newfound lifestyle all over town and even beyond its boundaries. He created his own blog on the web to coach those in need a kick-start on the diabetes-blazing trail. He has to date a lot of followers and has gained so much knowledge in the domain from those who have experience on the subject matter. He takes great pride in helping those who just got diagnosed. He gives them profound hope for a better future and a newfound passion to live a new way of life that makes those in need even happier than they were before.

More on http://www.idf.org/worlddiabetesday/toolkit/gp/facts-figures

Despair reaches the point of abuse

Despair reaches the point of abuse

confused

I cannot take it any longer, completely drained from the mental toll taken from my sister Sonia. She has been with us for months. At first it was depression, then the apathy lead to a total abandonment of the self, which lead to serious neurosis. What was once a tolerable situation is now completely impossible and my days are eaten up by this ball and chain.

Life was once a joy to have her around and spending the weekend. Now, the self-absorbed sister of mine has engulfed the whole family into another state of her bipolarity. We have her medicated now but still, she demands all our attention and is sucking the whole positive energy around us. She never leaves the house but roams from room to room without a goal in life, moaning and groaning about what she could have, would have done in her existence; dragging us all down with her.

A friend of mine Caroline came over a month ago and saw our household literally slaves to her beck and call. She immediately took me for a walk in the park around the corner to knock some sense into my heart. For the first time in months, someone actually took a step back to be objective and tell me the way they saw it. Caroline put words onto everything that was happening to help the clarity of the other side of the spectrum. This situation was becoming abusive and I had to break free.

The next day I took action. I decided to get home care and home help for her and us. I got a nutritionist over, a shrink, a masseuse and a nurse to carefully make certain that she was taking her pills and getting help and stimulation. Little by little it relieved the pain and anxiety that this “live in” sister of mine was causing. The strain and pain it was causing was unbelievable, having to take care of her in this manner. She had completely inserted herself into our home and had taken over. However, I had to realize with this alleviation of chores thanks to all the caregivers I had hired to take over the tasks; this was my issue of letting it get this bad. Once I had started to take that into account, the dynamic release of all the hiring out turned the situation around and I was able to take a step back.

If it had not been for Caroline my dear friend, I think I would be in a nervous breakdown with no light at the end of the tunnel. That team that I put together saved my soul (SOS) and gave me my life back.

Photo : Demi Brooke

Watching parents in difficulty

Watching parents in difficulty

hands

Mum and Dad have been married for over 50 years now. Enjoying each other’s company, they frequently travelled with their little savings after retirement. They were in great form until suddenly one day; dad slipped on a rainy pavement and cracked a few ribs as well as dislocating some disks in his back. Mom was so shocked that he was no longer active in being the companion that accompanied her in all their adventures that she started loosing her mind. Very worried, we brought her to the hospital and she was immediately diagnosed with early dementia. It was light at the beginning but very rapidly, we realised that she was not reliable for giving any care to dad when needed.

Now things have gotten a little more complicated since dad is completely bedridden for now. He is not seemingly getting any better and mom with her early dementia diagnosis is really worrisome. Dad is prescribed heavy medication for his weak heart and painkillers for all the aches and pains. However, it frequently slips her mind to administer them and we often find dad hollering with pain (whether bedsores or bone injuries) when we go see him after our workdays were over. Even proper meals are not being handled as she completely forgets that she did not even feed dad, never mind washing him or herself. Let us not forget what happens when the bladder has a nature call and the diaper is not changed for a very, very long time. The house started to smell awful as their hygiene was completely omitted.

It is amazing how quickly all this happens. One gets so used to having strong and healthy parents and then, all of a sudden from one minute to the next it is never the same. The family urgently got together and had a reunion on possible solution hunting and investigation. We all agreed that we needed to have people tend to them both without, for the time interfering in their seemingly regular independent life. We hired a lady who brought them meals from the neighbourhood; she made some incredibly nutritious delights and caregivers, who cleaned dad, medicated him and made certain that everything was taken care of. These people were so mindful that on a daily basis we got updates from them on the progress of the situation. This solution worked like clockwork whilst letting them have the space to continue their loving lives with even dad being bedridden. Thanks to this organisation, mom was able to read dad his books and watch their favourite movies without a stress in the world that anything was forgotten.

Photo : Axel Naud

This is the story of Fred

This is the story of Fred

HIV

Fred has recently been diagnosed with HIV. Homecare has been a precious help at the beginning of his sickness.

Everything started a few month back when suddenly Fred has been taken by regular tummy discomforts, which rapidly became daily diarrheas. Over the weeks, Fred’s body weakened and his health declined fast.

Doctors did a number of analyses but did not think at first of HIV since Fred has always cautious with his health and got tested regularly. Indeed his last HIV test had been done about 3 months before the tummy symptoms appeared.

To be sure that they did not miss anything, doctors ran another HIV test, which came back positive. Fred was devastated. He always had protective sex, except once for an oral sex encounter. His Specialist doctor explained that he unfortunately got a very virulent strain of HIV and had start him right away on a tri therapy.

At beginning of his treatment, Fred was very prone to the nasty side effects of his pills cocktail. His body remained weak for weeks before getting better. During this episode, Fred caught a nasty lung infection that literally brought him to the hospital for a few weeks. He eventually came out but so weak that he could not take care of himself at home alone.

Fred’s recent seroconversion is still a secret to his family and his friends. He could therefore not call for help. To learn how to live with his chronic disease takes time and society can be tough. He was not ready to reveal his sickness to anyone yet. He had difficulty adapting to his new condition and today, after 9 months, he is still in the process of accepting his current situation.

So, coming out of the hospital and more than ever alone, he decided to call for outside help in order to go back home peacefully and safely. He managed to get a nurse 2 hours in the morning for a couple of weeks, and a caregiver to help him for 2 hours in the evening. This would last just the time required to be back on track.

In Fred’s case, cost was not an issue. Thank sto his generous insurance corporate plan, he is covered for homecare services. He found online a solution that was discreet, fast and easy to organize. He got better everyday helped and monitored..

In fact, because the Healthcare Industry did real progresses in the management of HIV, Homecare services are less used nowadays. But it is an effective solution bringing comfort to everyone involved in a care process and it remains at home in extreme situations or in palliative circumstances.

Do not hesitate to google websites such as aids.org or avert.org to find out more on programs, therapies and prevention methods. Do not be afraid to get tested and encourage everyone to take the test regularly in order to protect everyone.

If Fred occasional partner had known his status, Fred would still be healthy today. And, even if the condition of life of patients has improved tremendously lately, HIV remains a chronic disease for which the only known effective solution is to use condoms and have protective sex.

 

 

My grandmother recently broke her hip and has been bedridden…

My grandmother recently broke her hip and has been bedridden…

grandmother

Since you cannot move her much till it heals, it has been very difficult to take care of her. Nobody told me at the hospital when she got out that we needed to keep her body massaged and moving otherwise the blood would not flow properly and skin sores could/would appear. In about a half a day home and I was washing her that night, I saw this red open wound behind her one knee and an appearing mark on the other and the surrounding skin was discoloured as well as if it were expanding.

It was a horrible sight! They look like ugly ulcers on the skin. Grandma was complaining the next day of pain and we could not figure out where it came from. Then we put two and two together that it might come from the wounds that had appeared. Immediately, we started to research on the subject and realised that they happen anywhere on the body; bony as well as muscle areas can be affected, usually where there is the least padding under the skin. The oxygen and nutrients do not reach body areas and thus the skin can die very quickly which gives way to these bedsores.

It came to our attention that we had to massage her every 2 hours in order to keep the sores away. Soft creamy cream helped moisture her skin and keep the circulation moving. We also had to elevate parts so that it would not touch the bed through friction which was a complete challenge having a granny with a broken hip as the pain sometimes paralyzed her.

After a short while, it was very difficult to manage the blisters, as they would appear out of nowhere wherever there was friction up against a surface of some sort. The the healing was very long due to age and state of the patient as everyone knows in older people every part of the body heals much longer.

However, we realized that proper dressings helped ease the redness and slowly closed the wounds. According to Wikipedia, over 43,000 globally die of bedsores which is enormous. To topple that, I roughly calculated that over 4 billion people in the world have these according to the web site below: http://www.rightdiagnosis.com/b/bedsores/stats-country.htm.

We made arrangements so that granny is cared for every 30 mn so that there was not a chance that more would appear while the others would heal. This was such a challenge but we won the battle thanks to the caregivers that we hired and our own special home love.

http://www.bedsorefaq.com/how-many-hospital-patients-suffer-from-bed-sores/

Families, do not do it alone !

Families, do not do it alone  !

sad woman

Those who succeed to sustain a loved one at home in the long run are those who understood that they have to protect themselves and get professional help at home as early as possible in the care process.

  • 7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged.[The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
  • 52 million caregivers provide care to adults (aged 18+) with a disability or illness. [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] – Updated: November 2012
  • 5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s and Dementia , Vol.7, Issue 2.] – Updated: November 2012
  • LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%.[MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers] – Updated: November 2012

More numbers on https://caregiver.org

FOCUS ON WHAT IS IMPORTANT AND DO NOT FEEL GUILTY TO GET HELPED

Engaging home care services instead of you doing the hard work is not about being selfish or flying away from your responsibilities or not loving the person in need of care. It is about sharing the load and focusing on other care components that professionals cannot replace. Using outside nurses and professional caregivers is about prioritizing and keeping your strength for what is truly matters: remaining strong on the long run.

Indeed, caring for a chronic illness is like running for a marathon. It takes time and tires you slowly both physically and mentally. By engaging home help early, you will not only stay stronger but you will be able to address the need of your loved one for the longest time without seeing him or her as a burden.

CALL FOR OUTSIDE HELP EARLY

Most families delay to call for outside help for many reasons. Sometimes, they do not know how much it will simplify their lives; or they do not know where to turn, or they cannot afford such a service. All these are good reasons. However, too often they delay to engage home care services because they feel they can still cope. This pattern is even more frequent when the primary caregiver is the spouse of the patient. Out of love, they keep repeating to themselves and to others : “I can still cope !”

The answer is “Yes, today you cope or maybe you think you can cope but are you really delivering the right care to your loved one ?

Despite the endeavor and the motivation of caregivers, their way of caring might be not appropriate or no longer be sufficient for the patient. Family members are always giving their best but their technique and their assessment of the situation might not be as accurate as a professionals’ opinion.

Engaging home care professionals helps to get an objective analysis of the patient’s condition in his/her own settings. Healthcare procedures get validated and corrected if required. It protects the interests of everyone involved in the care including the patient. It safeguards everyone’s strengths in the long run.

PREVENT CAREGIVER BURN OUT

Caregiver burn out is a reality. And, once a caregiver has given beyond what he/she could, the least little issue that might arise becomes a big problem. Losing their motivation, caregiver run out of patience much quicker or are constantly irritated for no reasons by the least little detail. They stop to be kind and available. The problem is that once a caregiver is burnt out mentally, to come back to a more peaceful atmosphere is very difficult. One often stays bitter.

Sometimes, admitting they can no longer cope forces caregivers to take a step back and consider if the current care structure needs to be improved. They need to face the actual condition of their patient and whether the situation is stable or has worsened? If it did get worse, caregivers might see this set back as their own failure. They feel guilty about what they should have done. Evaluating their care is rough process for someone who keeps giving his or her best for a loved one. Sometimes, caregivers are just not willing to change their practices or fear to change. They fail to understand that adapting the care structure is crucial in order to address the needs of the patient. Yet, the only important question they should keep in mind is : “what does my loved one really need to stay home safely and comfortably ?”

A PIECE OF ADVICE TO CAREGIVERS AND FAMILY MEMBERS

If you delay using home help and respite care, remember that it is not about admitting your failure as a caregiver when you engage a home care service. It is about doing the right thing ! It is about throwing best practices in the care process in the interest of the patient. It is about sustaining and improving the level of comfort of everyone involved. It is giving caregivers time to focus on the real priorities such as recovery, fight against the disease or sharing more quality time together (being more available). It is about keeping your strength in the long run.

10 Tips for caregivers and family members of stroke patients

10 Tips for caregivers and family members of stroke patients

help logo

If you are caring for a stroke person, you may have many questions about whether your loved recovery and his or her needs. You may also worry about what care you may need to give or set up around him or her. But today, lets focus on your part : caregiving.

Caregiving can be a huge load to carry and very much impact the entire family. Because not only do caregivers continue to fulfill their role in the family, but they also have to care for the stroke patient and take on that person’s role as well. This situation drains most caregivers and is extremely overwhelming.

According to the World Health Organization, 15 million people suffer stroke worldwide each year. Of these, 5 million die and another 5 million are permanently disabled. http://www.strokecenter.org/patients/about-stroke/stroke-statistics/

In the U.S., each year, approximately 795,000 people suffer a stroke. About 600,000 of these are first attacks, and 185,000 are recurrent attacks. This implies that more than 50 million people provide care for a loved one with a disability or illness. We estimate that 59% to 75% of caregivers are women, and most are caring for an older parent or a husband.

Despite the burden, many of these caregivers say that they appreciate life more while caring and feel positive about being able to help. However, caregivers are very often exhausted by their new role and often do not know what to do in this forced situation or where to get help.

So, if you are a caregiver yourself or you know a caregiver in need, here are some suggestions that can help balance the challenges met by most caregivers caring for stroke survivors.

Before leaving the hospital, always

  1. Take your time to assess the situation. Sit down and carefully analyze every parameter. Gather as much information as you can before making a decision.
  2. Coordinate well the needs of your patients, your doctor’s recommendations and the rehab plans, the medications’ management, your finances and/or insurance coverage. But most of all take your needs in consideration as well.
  3. Try to be as much realistic as possible with yourself, about what you can take on, what you may need help with and what you can achieve.

Once back home

Once your loved one leaves the hospital, the reality of the situation may begin to sink in for both of you. Here are some points you may want to consider as you take on your new caregiver role.

Consider safety

Ask an occupational therapist if you need to do anything to make the home safer for your loved one.

Be prepared for behavior or mood changes

The losses from stroke, whether temporary or permanent, can be devastating to the survivor. But on your caregiver side, it can be hard to see a loved one suffer. Feeling grief is a necessary step toward accepting life after stroke.

Be on the lookout for depression :

Stroke survivors are at risk for depression — from 30% to 50% are affected. Depression can interfere with your loved one’s recovery. Ask his or her doctor what to look for and seek treatment right away if you see signs of depression.

Taking Care of Yourself

The more you care for yourself, the better you can care for your loved one. Exhausting yourself will not allow you to provide your patient the loving help you want to give. It’s not selfish to take time for your needs. It is actually essential and beneficial for both of you.

Be patient with yourself

No one is a perfect caregiver . Remember you have never done this before and will have a lot to learn. Build your skills and boost your confidence by taking caregiver classes or workshops offered in your community.

Do not lose your life

Adjusting to being a caregiver is in some ways a shock. Suddenly, all of your time is devoted to meeting someone else’s needs, and you never think about yourself.

Do remember that you have a right to your own time and activities.

Get Support

Find emotional support for yourself if required but most of get home help and care if you can afford. Engage a nursing service. Find a caregiver. Employ freelance nurses. Solutions of freelance Care Professionals exist. Use them. Make sure you do not stay alone in your care.

Seeking help from outside sources

Getting outside help can make all the difference in your ability to balance your life with your loved one’s needs. Respite care can give you time apart so that you can relax and rejuvenate.

On the internet you will find online care booking system sending nurses to your doorsteps, therapist, doctors or caregiver.

Family members or friends may be able to come in for a few hours a week but they have their lives too. So start early to search the best home nursing solutions to assist you.

Other types of assistance may include homemaker services, adult day care, Meals on Wheels, and transportation services.

Look into insurance coverage and assess your finances

Medisave, Medicare and/or health insurance depending on the country you live in, will cover most of the hospitalization and rehabilitation expenses. However, there may be restrictions on which facilities and providers are covered. So be sure to find out exactly what is covered and what out-of-pocket payments may be needed. Also remember that as your loved one gains abilities or is no longer progressing, coverage may change or stop.

Create now your account on https://curanobis.com/

 

Support that eases the unbearable

Support that eases the unbearable

nurse

Alzheimer’s is a slow progressive brain disease beginning earlier than clinical symptoms are detected.  Over 36 million people worldwide have Alzheimer’s or a related dementia according to 2014 statistics (http://www.alzheimers.net/). There is an accumulation of the plaques outside neurons in the brain while twisted strands of protein form inside the neurons. With time, basically the neurons eventually die because nutrients are no longer transported to the cells thus there is no more information transfer between the synapses. The brain shrinks due to loss of cells and massive debris from neurons is found which leads to death. The time frame is difficult to establish but what we have seen is proper care determines the life span of a diagnosed Alzheimer’s patient.

The clinical diagnosis is only established when the patient, on a macro level, has trouble remembering events, tasks and interactions where as on a micro level forgetting names, objects and retracing becomes impossible. Usually the individual realizes what is happening but cannot verbalize it.

Rapidly, the feeling of depression and confusion emerges in the person. Later, the symptoms enter the realm of total behavioral changes and the cognitive is impaired. One becomes completely disorientated and the space between past, present and future becomes impossible to decipher. Paranoia, anger and frustration abound which is for those around extremely difficult to manage and accept.

My grandmother was a sharp lady who played cards with everyone in the neighborhood. She started forgetting the sequences, then the venues till she was found in a random flat with strangers. It was so hard for the diagnosis to sink into our hearts and we knew that that was just the beginning. As we started researching on the subject we found so many horrific facts and figures around the world. Millions of individuals bear the same predicament and not many have the means and the time to care for Alzheimer’s patients.

Curanobis for us is the answer. It is an online community that matches health care professionals for medical patients in need. It gives us the freedom to find the right person according to requirements. When we need a caregiver we can just book online from any device carrying the application and the professional is on location at any given moment. This innovative platform is so efficient that whenever the family seeks any type of medical help; they are always there on task.

A few links to reports

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