Saturday, 21 November 2015


My friend and colleague Vickie Cammack and I are co-writing a book of reflections on caregiving.  Vickie and I would love to know your thoughts about our work so far!  This is the first instalment by Vickie from a section we're working on about how we represent our loved ones to the world.  Does this resonate with you? Is representing your loved one to medical professionals and to the wider world an important part of your caregiving?

Where there is no vision, people perish. Proverbs 29:18

Image courtesy of Tom Hussey's Mirror of Youth Prize Winning Series. 

My mother and I arrive at the emergency ward.  She is dizzy and confused.  She complains that her heart is pounding.  She has been nauseous and feverish for the last few days.  Alarmingly, she has no interest in cooking, her number one passion.  She doesn’t even want to walk into the kitchen.  I am relieved that finally, she has agreed to go to the hospital.

I provide the intake clerk with all her pertinent information - medical number, medications, my contact information.  I provide most of her medical history.  My mother haltingly describes her symptoms. Her sentences are incomplete.  Her words are slurred.  I do my best to fill in the blanks and describe the bright, vibrant articulate woman she is. 

Many tests are conducted.  Each time a new nurse, doctor or technician appears, we repeat the context, the symptoms and just as importantly how Mom was before she fell ill.  I describe her passion for baking.  I even slip in a mention of the elaborate birthday cakes that she still bakes and painstakingly decorates with her arthritic fingers for each of her four great grandchildren.  I do this because I want them to see what I know.  I want to them appreciate what has been in my mother’s life and spark what is possible.

Happily, the cause of my mother’s distress is found to be simple dehydration.  A couple of bags of intravenous fluid and my mother is pretty much back to normal.  When she asks me to go down to the hospital store to buy her favourite cooking magazine, I finally relax.  I can see her standing in the kitchen, baking up a storm once again.  And as the doctor gives my mother instructions to ‘drink plenty of fluids and take it easy in the kitchen’, I know she can envision it too.

It strikes me that one rarely hears the terms visionary to describe caregivers.  Yet vision is indispensible when we take care.  The capacity to see what was, what is and what can be for family members and friends is a critical role that no professional care provider, no matter how trained or prepared, can perform.

But having vision is not enough. We must help others see what we see.  Caregiving requires us to share our knowledge with certainty, our intuitions with confidence and our stories with pride.  When we do this, we not only provide critical care information, we illuminate everyone’s capacity to bring actions into being that bridge the past and the present to the future.

Wednesday, 18 November 2015

Parents of Kids With Disabilities Don't Get Sick, Right?

This morning, there is a medical appointment in my diary.  It's not a specialist clinic for our son Nicholas; it's for me.  I'm going to review my spinal xrays with our GP.  I've abused my spine by lifting Nicholas throughout his life and Natalie when she was small. Now, I have degenerative disc disease and my neck and back are causing pain that interferes with my happiness and my mobility. I might be a danger on the road because I can't turn my head to see the car behind me! 

All of this got me thinking about how we parents of children with disabilities manage to cope when we’re ill or injured.  We can’t book off our children’s care for a day or two if we get the flu.  So how can we plan for the times when even the most determined and attentive parent will be so sick that help is a necessity just to keep everyone fed, bathed and safe?

Once, I came down with viral meningitis.  Natalie was a toddler and Nicholas was four or five.  At that time, an older teenager called Cali lived with us to help me with nursing and childcare at home.  She and I worked hard to keep my two complicated children safe and healthy.  But when meningitis made me realise that no amount of willpower could get me out of bed, I felt desperate.  I cried to Cali, 'what are we going to do?  You can’t look after the kids by yourself!"  My husband was travelling on business and we were living abroad, so we had no family nearby.

But Cali had a family and it was her mother who came to stay.  Mrs. Roffey came to cook, do laundry, play with Natalie and spread a sense of calm and control throughout our home.  I was lucky that within a week, I was out of bed and back to my usual routine.  I can’t imagine how awful that week would have been if Mrs. Roffey hadn’t been our guardian angel.


A caregiver 'angel' isn’t available to every caregiver, though.  That means it's essential to have an emergency plan in place for when the caregiver is too ill to carry out life-sustaining responsibilities.  For those tag-teaming with their spouse or another competent adult, an emergency plan could be as simple as promising to step in for the other in case of illness or emergency.
For single caregivers, the best place to start in thinking about creating an emergency plan is by making a list of anyone who has been helpful (or offered to be helpful) in the past.  It's a good idea to have a 'Plan A' and a 'Plan B'.  Write a draft email to a couple of prospective surrogate caregivers who have the willingness and ability to care for your child (or learn the ropes quickly).  Explain that you are creating an emergency care plan for your home and you are asking for a commitment of help to replace you, the caregiver, if you become temporarily incapacitated.  Leave no stone unturned to explore other sources of emergency assistance as well.  If you have a social worker, ask what they suggest.  Local community centres and churches sometimes have committees that can handle such family crises.  In the case of emergency care for school age children, schools are a natural partner in crisis scenario planning and so are other disability parents.

An emergency respite plan is a good thing to have.  And beginning that conversation with friends, family and neighbours could lead to greater awareness of your role as a caregiver and your need for regular respite.  The emergency planning might be an opportunity to create a network of care for your loved one.  Either way, like making a will or planning a fire escape route from your home, emergency planning in the event of caregiver illness is a great insurance policy against true catastrophe.

Monday, 16 November 2015

Your Parent Has Been Diagnosed With Alzheimer's. Now What?

If you watched “Still Alice,” you will have a better idea of what a person with Alzheimer’s goes through. Especially if you have a parent with this disease, you will know how it feels like to be in their shoes.

“The poet Elizabeth Bishop once wrote: 'the Art of Losing isn't hard to master: so many things seem filled with the intent to be lost that their loss is no disaster.' I'm not a poet, I am a person living with Early Onset Alzheimer's, and as that person I find myself learning the art of losing every day. Losing my bearings, losing objects, losing sleep, but mostly losing memories...” 
Alice Rowland, Still Alice

Alzheimer’s disease (AD) is an irreversible, progressive and fatal disorder of the brain. It is unpredictable in a way that some patients with this disease can be sick for a long period of up to 20 years or die within just a few years. Unfortunately, as in the case of Alice Rowland, the earlier you have AD, the faster the disease will progress. In the US, there are approximately 5.3 million Americans with Alzheimer’s and every 71 seconds, someone develops this disease with two thirds of them being women.

If you are caring for someone with AD, you, too, will need help. Just like being a parent for a newborn is a 24-hour, often tiring and draining job, caring for someone in your family with AD is very similar. More so if you have your own family, your spouse and your children, to care for. There are, though, steps you can take, so that the task will not take its toll on you both physically and mentally. You can start by understanding Alzheimer’s, what the symptoms are, and identifying what you can do for your parent with AD to make the task of caring for them more manageable.

Their Symptom: First, a person with AD will have gradual memory loss. They might place their cellphone in the fridge or step out of the house and forget how to get back. This is why a person with AD needs 24/7 help. From day to day, the disease progresses and they lose a part of themselves every single day. What they remembered yesterday, may be totally unknown to them today.
Your Need: As someone caring for a parent with AD, you too will need time for yourself and of course, for your own family. If you cannot afford to hire someone full time, get someone to help you for a few hours a day. That should cut the cost of a full time caregiver. Another option is to alternate caring for your parent with a sibling or another relative.
What you can do: To help you cope with this symptom, you can start by “AD-proofing” your home. Have signs all over your home that will “speak” to your parent with AD, such as a note beside their bed that says, “ring this bell if you need my help” or “this way to the kitchen.” You will still need to check on them frequently, but these signs will give you some extra time to prepare or to do other things. There are also therapies and medications that can help with this symptom, so bringing your parent to the doctor will not only help them, but you, as well, as the caregiver.

Their Symptom: Your loved one will be confused most of the time. There may be a point when they no longer know how to wear their shoes or their shirt. They will forget your name or even that you are their child.
Your Need: You need to be recognized for the care that you are giving and the sacrifices you are doing for your parent. This is normal and you do not need to feel ashamed that you will feel this way. Unfortunately, you will not be able to get it from your parent due to their memory loss.
What you can do: Caring for a loved one who does not remember you can be depressing. Your solace is in your family. Explain the symptoms to them and how they can help. It is hard enough for you to be feeling unrecognized. It will be harder still for you to have to answer questions from family who do not understand the disease. When possible, have another member of your family with you when you and your loved one with AD goes to the doctor, so they can get information and explanation first hand. Make sure, also, that another member of your family can get access to medical records or information record of how fast the disease is progressing, etc. for emergency cases and you cannot be around. Spend time with your family when you can and find comfort that they recognize your sacrifices and your hard work.

Their Symptom: Your parent will suffer from poor judgement, which can be dangerous for them and everyone around them. They may attempt to cook, but will no longer know how to use an oven or a stove. If this is the case, your parent is at risk of causing fire. They may also attempt to drive, but will not know how to operate the vehicle and as a result harm themselves or others.
Your Need: The poor judgement of your loved one can be detrimental to you, too. You need to feel safe when you are caring for your loved one.
What you can do: Again, you cannot do the job alone. Discuss the symptom with your family and solicit their help and support. Your safety, as much as the safety of everyone in your household is also important. The more your family understands the disease, the more they can help you. For example, make sure that everyone knows to lock the door when they leave. This reduces that chances of your parent leaving the house unassisted. All sharp objects should be kept in drawers or places far from the reach of your parent with AD. At night, when everyone is asleep, your parent might decide to get up and cook or go to the garage for some woodwork. You can consider placing a pressure alarm on the bed so that when your parent gets up, an alarm will alert you that they are leaving their bed and possibly their room. If you cannot find this type of alarm, you may also use a baby monitor. You can also give your parent the freedom to walk around the house, but make sure that you always know where they are and can be there to assist them when needed.  

Finally, taking care of your with AD will allow you to express your love and affection. On the other hand, it can also be overwhelming and when it comes to the point when it is too much for you to handle, both physically and emotionally, have a plan in place for you to get more help

There is a poem about AD that goes like this:
Don’t ask me to remember
Don’t ask me to understand
I am confused beyond your concept
I am sad, sick and lost
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

AD is a cruel disease, but it is a human disease and the love for your parent is what will get you through it. It is also by keeping your loved ones such as family, other relatives and friends close that you, yourself will get through caring your for parent with AD.

Marie Miguel is an avid internet researcher. She is fuelled by her determination to answer the many questions she hasn't been able to find the answer to anywhere else. When she finds these answers she likes to spread the knowledge to others seeking help. She is always looking for outlets to share her information, therefore she occasionally has her content published on different websites and blogs. Even though she doesn't run one for herself she loves contributing to others.  Maria's grandmother suffered from Alzheimer's Disease.

Sunday, 15 November 2015

How to Help an Alzheimer's Caregiver (Share This Post With Friends and Family!)

A Guest Post by Vee Cecil

Caring for a loved one with Alzheimer’s disease is an incredible challenge, both physically and emotionally. Often, primary caregivers are spouses who are also aging and sometimes have health issues of their own. It’s not uncommon for Alzheimer’s caregivers to neglect their own health and well-being out of fear that leaving their loved one even for a short time would cause distress.
Perhaps unsurprisingly, Alzheimer’s caregivers are also reluctant to ask family and friends for help with their caregiving duties. Often, they don’t want others to view them as incapable of managing their loved one’s care, or they don’t wish to place unnecessary burdens on friends and loved ones.
What they don’t often realize is that many of their family members and friends would be honored to help, but they may not know how they can help. If you know someone who is caring for a loved one with Alzheimer’s disease, there are many ways you can offer help and support.

Be Specific with Your Offer to Help
Many people who want to help another person in some way take a broad approach, with questions such as, “Is there anything I can do to help you?”
To this question, the response is almost always, “Thank you, but no, I’m fine.”
Whether caregivers realize it or not, they do need help. But because they’re not likely to ask for it or even accept it, it’s up to those of you who want to alleviate some of their burden to be specific. Instead of asking if you can help, frame your questions to offer a specific service, such as picking items up from the grocery store, offering to help with laundry or other household tasks, or bringing dinner.

Offer a Shoulder to Lean On
The emotional challenges of caring for a loved one with Alzheimer’s disease are often the most impactful. When a care recipient has difficult symptoms such as agitation, wandering, or aggression, the toll of being constantly “on” can wreak havoc on even the strongest individual’s emotional health.
Every caregiving situation is unique. Every family has its own differences, and every Alzheimer’s patient has a unique disease progression. Even the symptoms of Alzheimer’s disease affect patients in very different ways at varying levels of severity, at times differing from one day to the next.
One thing everyone can do who wants to help an Alzheimer’s caregiver is quite simple: Offer a shoulder to lean on or an ear for listening. In the process of offering this type of support, you’ll learn about the specific challenges the caregiver is facing. Through these conversations, you’ll uncover specific ways you can help that will be most meaningful.

A Few Things That May Help Alzheimer’s Caregivers
Because each situation is unique and every caregiver’s needs are different, it may take some investigating to figure out the best way to help someone who is reluctant to admit that they could use assistance. Here are a few ideas for specific ways you can offer help to someone who is caring for a loved one with Alzheimer’s disease.

  • ·       Offer to mow the lawn, and mention a specific day you’re available to do so.
  • ·       Bring a basket full of cleaning supplies and offer to clean the house. Don’t be pushy; if it’s not a good time, schedule another day to come back, and stick to it.
  • ·       Mention that you’re going to the store and ask what supplies you can pick up for her. Don’t ask “if” there is anything you can pick up, but “what” she needs.
  • ·       Volunteer to run errands, such as picking up medication from the pharmacy.
  • ·       Offer to take the person with Alzheimer’s disease to an appointment.
  • ·       Give a thoughtful gift, such as a gift certificate for a massage and a coupon for your services to provide respite care while she’s being pampered. A card with a sincere, personal note letting her know you’re thinking of her and are there for support is often meaningful, too.
  • ·       Offer to provide respite care or handle a few day-to-day tasks to allow the caregiver to get some rest or time away. For example, you might offer to wash the Alzheimer’s patient’s hair, trim their nails, or wash their clothes. These are tasks that are helpful to the caregiver and will make the person with Alzheimer’s feel refreshed and clean.
  • ·       Simply be a friend. A simple phone call to ask a caregiver how they’re doing gives them a connection to the outside world and helps them feel less isolated. Stop by to visit and just let her talk.

While these ideas may not be useful for every caregiver or every situation, they may inspire you to think of ways that the caregiver you know could most benefit from help. No matter how you reach out, you’re offering support and socialization that can go a long way in reducing feelings of depression and anxiety that caregivers often face.

Vee Cecil is a wellness coach and bootcamp instructor who is passionate about helping people of all ages lead healthy, happy lives. She also shares her favorite tips and recipes on her new blog.
**Photo Credit: Image via Pixabay by skeeze**

Thursday, 12 November 2015

Taking a Risk For the Sake of Love and Family

Making dreams come true for people we love who can’t get out easily is tricky.  Take my Mom – she’s a 93-year old contrarian full of youthful energy contained in a frail and unforgiving body.   Mom has a dream that she won’t let go: to visit our son in another city about two hours away.  Our Nicholas has severe cerebral palsy and suffers from chronic pain.  It’s sitting that hurts most, so travel for him is challenging.  Mom wants to visit her ‘treasure’ badly, so at first we decided to try Skype to connect them.

We gave Mom an Ipad for her 90th a few years ago and she did love chatting with Nick and her other grandchildren.  If the program acts up though, or suddenly requires a password to access familiar icons, then the communication breaks down.  Skype is a fantastic tool, but it’s not always reliable when Mom is home alone, trying to solve the mysteries of her Apple technology.

Nicholas has been bitten by the travel bug.   He wants to visit his grandmother, but he also wants to go further afield, perhaps to see his beloved NHL Ottawa Senators play an away game in another city.  Back home, we held a family meeting where we concocted a plan to make two dreams come true at once.  We decided to bring Nick to visit my Mom in Montreal.  It would be risky – extra morphine was packed in case of pain on the road.  A portable hoyer lift was packed into the van in case our young man needed to lie down at Mom’s.  Measurements were taken of Mom’s doorways to ensure Nick could get into her apartment with his lift.  Cell phones were charged and emergency plans were put in place.

My husband Jim and I travelled with Nick and a helper in the wheelchair van.  My sister Karen and her family arrived early to help my Mom get ready for the big day.   Did two dreams come true that day?  You bet they did.  Sometimes the best memories involve a little risk – a risk worth taking for the sake of love and family.