About Caregiving Cafe

ABOUT Caregiving Cafe

CaregivingCafe was born out of the need to find, in a timely manner, solutions, answers, information, resources, services, products, doctors, and other people providing loving and effective care to family members.

In December of 2007, my beloved father was diagnosed with Multiple Myeloma.  He looked more tired that year and had lost his sense of taste, but that did not keep him from traveling to Europe in October with my mother and sister.  They had a wonderful time!  Early in December, his doctor called him to tell him to go to the hospital right away.  That was the beginning of our caregiving experience, treading new and dark waters.  No one knew how the journey would unfold, but we knew how it could end.

In and out of hospital, my sister, brother and mother looked after Dad. He had lost a lot of weight and slown down, but he put on a smile to cheer up everyone who saw him. That was Dad!  His kidneys failed in January 2008.   This meant that someone had to take him to dialysis 3 times a week and also had to take him to the doctor for checkups.  My brother, sister and their spouses worked full-time and my mother was not in a position to drive him, as the emotional toll made her stressed and nervous.  I lived out of state.

At this point, the 3 of us siblings, along with our spouses, started emailing and talking to see how each of us could help.  Obviously, I could not be there in person, so we divided tasks among all of us.  I have to say that we made a terrific team!  Each one of us took on a separate duty, maximizing our time and getting the job done expeditiously!  Because I had time during the day, I mostly made phone calls and made arrangements for transportation.  My husband and I researched Multiple Myeloma, treatments, medicines, hospitals, doctors and passed the information on to my brother and sister for them to discuss with the doctor or to better understand what the treatments entailed.  Often, we did this when Dad was in hospital and my brother and sister could not access a computer.  We needed information stat.  This went on for almost 2 months.

During this time, I looked up and emailed to the family a list of various services for my parents: housecleaning, transportation, medical home care, meal services, etc.  This took hours of searching, playing telephone tag, getting a lot of “Sorry, we don’t do that,”  or finding out that my parents did not qualify for this or that service or benefit.  I also found out that transportation for the elderly or sick person is very expensive when one has to use it daily!

At the end of January, I went to stay with my parents so that I could drive my Dad to dialysis and help my mother at home.  This would relieve my brother and sister from taking time off work every week, neither of whom lived or worked nearby.  I left my husband and 12 year-old daughter in Austin for 4 weeks.

The day I arrived was what I call the “beginning of the end.”  My Dad had hurt his lower back / hip area that morning putting on his sock.  A sharp pain took his breath away, but he was able to withstand the pain if he walked and sat down slowly.  I got home before he returned from dialysis, driven by a lovely lady whom my parents had met at the hospital.  She was a Godsend!

At midnight, my Dad came out of his bedroom and announced that he needed an ambulance because the pain was unbearable.  So, an ambulance came and drove him to the hospital while Mom and I followed in his car.  He was checked for this and that, doctor found nothing, and was released at 4am.   My Dad was in as much pain then as when he arrived...

The daily routine, more like a challenge, consisted of preparing food that was palatable to Dad and giving him very small amounts of it.  This was not easy!  Everything “tasted like cardboard” and was unpleasant for him to eat.  He was repulsed by large servings and didn’t want to even try the food.  We prepared all sorts of things and he tried to eat them.  He was a trooper...

Meanwhile, some small piece of equipment had a leak in the utility room.  We tried to find someone to come repair it, but the phone number of the person who had last checked it was incorrect.  We looked for someone else and got side-tracked with other medical issues.  I think that eventually, the leak stopped.  Then, other things needed repair at home: the shower valve needed replacing, the bathtub leaked into the basement, the gutters needed checking and possibly repairing, the bricks in the retaining wall were loose, the hand rail on the retaining wall was loose, the light bulbs in the basement kept going out too quickly, the telephone jacks downstairs had come off the wall and had wires exposed...  All of this was happening while Dad’s health continued to deteriorate:  he kept losing weight, he slept more, he was in a lot of pain.  I also took him to different doctors: oncologist, optometrist, cardiologist, in addition to dialysis and to the pharmacy.  Had I not been there, my brother and sister would have had to take more time off to drive him.  I was glad I could help.

I have to say that I don’t know how someone who has to go to work every day at a particular time can manage to care for someone whose needs vary throughout the day and who needs physical help, not to mention emotional help!  Add to that the impromptu “I need to go to the Emergency Room!” announcements that Dad made.  I was there with one mission: to take care of Dad in order to give my family a break.  Most people don’t have this type of relief and have to juggle their normal routine with the caregiving duties that many times cannot wait.  It can easily become a very stressful situation for everyone.

Knowing that I would have to leave my family after my 4-week stay, my parents decided to try some of the services I had found earlier so that they would be familiar with them once they were on their own.  Because transportation to dialysis was a matter of survival for my Dad, we started with MetroAccess.  This was a great service!  Once you get past the application, interview, set-up and actual making the request to be taken somewhere [and request a reservation to be driven back!], it was easy and very affordable!  My Dad wanted to ride by himself and had the entire car to himself going and coming back from dialysis.  It was like being driven by private chauffeur!  We were very pleased!

Unfortunately, my Dad’s health deteriorated much too fast after my departure and we were only able to try the groceries delivery service later on.  My mother was very happy with it as well.

I never saw my Dad again...He did not live long enough to see me upon my return in July.  At that time, we found that we still had caregiving issues to address.  This time, they were for the family to learn to cope with grief and to carry on with our life.  My Mother also needed help with day-to-day things like transportation, groceries, house repairs, lawn mowing, snow shoveling in winter in addition to dealing with her loss and with the dramatic change that had just taken place in her life.  The family continued looking for ways to make Mom’s life a little easier.  Caregiving did not stop with Dad’s passing.

At this point, my brother, sister and I realized that Mom had moved into a new “category”: the “man of the house.”  She was now a lady who had to take care of the things that her husband used to take care of: car registration and maintenance, house repairs, his business, some financial issues, taxes.  It was overwhelming!  All of these were tasks for which she welcomed help and guidance, as she had not been involved with them and had little or no knowledge of how to take care of them.  Add to that the immense feeling of being alone - alone with her added responsibilities and alone with her sadness - in a home where once there were two.  Indeed, much caregiving was necessary!

 

Mom, Dad & some family

As if Dad’s passing was not enough to keep us busy and feeling a bit rattled and crushed, my husband’s health started to slide while I was with my parents.  Rather innocently, his right big toe had started to hurt in February 2008.  He went to his doctor, who inspected it, ran tests and found nothing.  The pain increased to the point where shoes were too uncomfortable and he could only wear open-toed sandals.  It’s a good thing we lived in Austin!  By May, my husband could no longer drive his car to work because his right foot was in too much pain, so I drove him to and from work.  He had started using a cane for support.  This was the beginning of our own caregiving situation.  By July, he was using crutches because the pain had spread to the entire foot and ankle; he could no longer wear a shoe.  It was a puzzle that was finally deciphered in late July by his new neurologist: my husband had CRPS [Complex Regional Pain Syndrome].  It was a diagnosis that his neurologist had dreaded making.  We had never heard of this disease and right away started researching: what was it, symptoms, treatments, cure, research, success stories, etc.  What we found was not good:  CRPS is incurable, very painful, obscure to the medical profession, only about 1% of the US population has it [assuming it has been recognized by doctors, since many doctors have not even heard of it, do not know much about it or don’t believe it even exists].  The irony of this is that Multiple Myeloma, my Dad’s cancer, is also incurable, obscure, and only about 1% of the population has it.  Fortunately, my husband’s younger age made him better able to handle the disease.

With time, my husband’s capabilities quickly diminished and by February 2009, he had to retire from work on Disability.  This was a very difficult decision for him because he loved working and being productive.  His work helped many people and that had always been important to him.  He wanted to be a productive member of society as well as the one to protect and to take care of his family.  Instead, he was now in need of much care with mobility severely restricted: he was confined to a recliner that allowed him to keep his feet elevated at all times.  Due to poor circulation as a result of CRPS mixing up signals from the nerves to the veins and arteries, his feet swelled and the blood did not return to the heart very well when his feet were down.  This caused intense pressure and pain in addition to the pain he always felt.

Caregiving took shape with me as the primary caregiver.  As CRPS took hold and affected more parts of the body, along with new symptoms that made normal life difficult or impossible, we looked for equipment that made his moving around easier or made him more comfortable.  We also looked for items that would allow him to use his laptop while on the recliner and for furniture that made it easy for him to reach whatever he needed near him.  We had to devise a safe and efficient way for him to take his ever-increasing number of pills round the clock.  At the moment, he takes 22 pills, 2 patches, 2 eye drops and 2 sprays.  We had to find appropriate lighting because his eyes were very sensitive, a laptop desk because the laptop on his lap increased the pain on his thighs, soft pillows and a wedge that elevated his legs and feet without hurting his very delicate skin, leak-proof plastic water bottles because his hands had become clumsy due to pain and stiffness, a hands-free magnifying glass that hangs from his neck so his hands don’t get too tired, software to enable him to read on his laptop, etc.  This was a process that evolved over time.  We had to remain open-minded and creative in order to come up with solutions.  We had to search in unlikely places for items that would suit our needs, needs that we had never anticipated.

Looking back, my family spent way too many hours looking for products, services and information.  This time could have been spent on care and support or even a diversion from the unrelenting condition.  The situation itself can be draining after a while, especially when you know that it will never go away.  Because of this, we thought that it would be wonderful and so helpful to have one place where you could find all sorts of products, services, resources, information, etc. about caregiving.  When you are new at this, you may not have thought of lots of situations or needs that can and do arise.  Having lots of different types of resources in one location would make life easier because caregivers and care recipients wouldn’t have to look in so many places for what is needed.  This includes giving the caregiver a break and support, and providing the care recipient with diversions.

We hope that you will find this website useful while caring for someone else or for yourself.  We also hope that you, as a caregiver, will realize that you are doing a very important  job.  As such, a caregiver needs to maintain good health, strength, perspective, and a positive attitude.  Believing that what you are doing can be manageable and that you CAN FIND HELP makes a difference.  A big difference, even if you don’t always see it yourself or get the recognition.  Just imagine the consequences of your not doing it!  Taking a break every day, even if it’s only 10 minutes of mental escape, helps.  Personally, I MADE myself do puzzles online to take my mind off reality for a little while.  It refreshed me and helped me tackle the next task.  It also helps to remember that life continues despite the hardships and that we can all handle more than we think we can! 

Best wishes!