Childhood Cancer

Frannie (now 19) was 11 years old when she was diagnosed with melanoma.

“I remember being called into the doctor’s office with my parents. The doctor said that the results of the biopsy of the mole on my knee were surprising. That I had melanoma- and then he left the room. I felt confused. It was my mom who explained what that meant in the car on the way home. I hadn’t had any experience with cancer, and the only reference point I had was Terry Fox. After that, I had to have two surgeries and my mom had to give me interferon treatments three times a week. Parts of the treatment were scary, when the nurse would tell me a needle was really going to hurt or they were prepping me for surgery, but I didn’t fully understand what was going on. It’s a blur- but my parents were there supporting me the whole time.”

Learning that your child has cancer is something no parent can be prepared for. With this news, your entire world is turned upside down, and life as you know it will never be the same. Soon after the diagnosis you need to start thinking about how to explain this to your child so that they understand and are prepared for the battle ahead.  Although this will never be an easy task, take a look on our family caregiving site for some  tips on how to provide an explanation to your child based on their age and ability to understand the situation.

Caring for someone after a stroke

A stroke, which is caused by a clot or bleed in the brain, can be very serious. People who’ve had a stroke often need extra care for the rest of their lives. Caring for someone who has had a stroke can be challenging. Although no two strokes are alike, here are some helpful tips on how to care for your loved one after a stroke.

1) Do your research: Since no two strokes are the same, it’s important to learn about your loved one’s specific type of stroke. This means researching which part of the brain was damaged and what that part of the brain controls in order to understand how your loved one will be affected.

2) Think about home safety: After a stroke, people often experience weakness, paralysis and problems with balance or coordination. This typically means that there will have to be some adjustments made in your home to meet the new needs of your loved one. For example, installing grab bars in the bathroom, getting walking or lifting equipment, and adjusting for wheel chair access are all possibilities based on your loved one’s needs. In other cases, something as simple as gripping utensils can make a big difference to your loved one’s independence.

3) Understand the mental impact: Sometimes we forget that a stroke has mental consequences as well as physical ones. After a stroke, your loved one’s behaviour may change. They may respond and react differently to events or not respond at all. It’s important to be understanding.

4) Know the risk factors: The chance of having a second stroke is always a possibility so it’s important to know how to minimize the risk. A low-fat and balanced diet, daily exercise, appropriate medication and regular check-ups are all crucial steps in preventing another stroke. Although exercise may be difficult, it’s necessary to have some mild exercise every day, especially stretching and bending to help increase movement and help decrease spasticity which is common after a stroke.

5) Take care of you: Being a caregiver is a full time job and it’s easy to forget to take care of yourself. Join programs and support groups for caregivers to connect with others who are going through the same struggles. As well, get caregiver relief when you need it to help avoid burnout. VHA is an example of an organization that offers caregiver relief, learn more here: http://www.vha.ca/our-services/respite-for-caregiver.html

For more information about life after stroke check out this CBC documentary: http://www.cbc.ca/thecurrent/episode/2011/10/26/after-the-storm-documentary/

Caring for a loved one with Alzheimer’s disease or Dementia

Alzheimer’s and Dementia are both diseases that involve memory loss, changes in behaviour and abilities, and become worse over time. Caring for a parent or loved one with either disease can be a challenge and seem overwhelming.  Here are some tips from a caregiver who provides care for her mom who suffers from dementia:

1) Plan ahead: You need to know where the person is going to live and how they will be cared for as the disease progresses.  Although everyone will experience the disease progression differently, it’s very important to understand the different stages and to know what to expect so that you can make decisions for the future. For example, will you have long term care or home care? Although it can be difficult to discuss what’s going to happen as the disease worsens, it’s important to know what your loved one wants and will need later down the road.

2) Explore different care options: Connecting with different agencies within the community can help you with care and provide various programs for your loved one. For example, Help at Home, Adult Day Programs, etc.

3) Seek out caregiver relief: As with any type of caregiving it’s important to factor in relief for the caregiver to avoid burnout. VHA is an example of an organization that offers caregiver relief. Learn more here: http://www.vha.ca/our-services/respite-for-caregiver.html

4) Stay consistent and provide structure: It’s important to develop and stick to a daily routine, especially if there are multiple caregivers. This can give a sense of security and reassurance to the person being cared for.

5) Join a caregiver support group: It often helps to connect with others experiencing the same challenges as you. Joining a support group for others who are caring for a loved one with Alzheimer’s and sharing experiences can be very reassuring and useful.

Why is home care the system’s best kept secret?

In my own journey as a caregiver, I came to realize a lot of truths about the health care system where I live:

1) Unless you ask, you probably won’t receive
2) The system heavily relies on family members to care for ailing relatives
3) More home care could definitely help a lot of people to live more independently and avoid the hospital.

The truth is, home care has some how become the health care system’s best kept secret. Mostly because few in it have the time to help navigate the system. When I started out at VHA, I remember my friend asking me about home care for her dad. The reality at the time was that I didn’t know anything about accessing care. Of course in the years since, I’ve learned a lot about how the system operates, however, most average people simply don’t. VHA’s Heart of HomeCare Award winner from last year spent nearly a decade caring for her severely disabled son on her own before she learned  she could get daily service from an outside agency at no cost to her. In Ontario, as in most provinces, some home care is available to people who meet certain criteria.

And yet very few doctors will mention this. My mom’s own physician knew she had fallen at least twice. In fact, she ended up in emergency for a fall. And yet I was the one who ended up calling the Community Care Access Centre and asking for a falls assessement, not her family doctor and not the ER physician.

It seems to me if we want to unclog ER waiting rooms and enhance people’s quality of life and independence, we need to let people in on the “secret” of home care and make it a top-of-mind issue for everyone involved.  –PS

Signs a senior may need extra support.

I remember the moment I realized my mom was having real trouble moving around. Actually, looking back there were lots of signs. She had fallen twice–once so badly that she ended up with a swollen black eye and a rush to emergency (thankfully her best friend was with her when it happened).  But it wasn’t until I went over to her house for lunch and watched as she moved around by steadying herself on the kitchen and hallway walls I had to admit she needed help. I ended up calling her local Community Care Access Centre (we live in Ontario) and demanding a falls risk assessment. Fortunately, I knew these things existed because I work in home health care. And despite frequent visits to the doctor who knew her precarious health, he never once suggested home support, a walker or any assessment. The reality is it often takes an extreme event before care is put into place. Caring for a loved one is an interesting role: part nurse, part advocate, part psychiastrist

I think as adult kids many of us work really hard to ignore the declining health of our parents. My mom, after all, had been the matriarch of the family. Always strong and always fiercely independent. Admitting she needed help in some ways felt like a betrayal–to her power and her self-reliant nature.  But once she got the walker, it actually made a huge difference because it removed the fear of falling. My mom quickly realized that falling was a bigger threat to her independence than a walker would ever be.

Don’t ignore signs of trouble like I did. Instead seek help from a medical professional if you notice any of the follow signs:

• Weight loss: loss of appetite and resisting food and fluids can be signs that something is amiss. Not eating also causes frailty, muscle deterioration and weakens the immune system which can lead to infection.
• Weakness/Unsteadiness: Loss of muscle can cause weakness and unsteadiness. Some noticeable signs of weakness are difficulty getting out of a chair, holding onto walls for balance, etc. This
• Infections: as we get older our immune system weakens. However, if your loved one is getting frequent infections this may be caused by an underlying issue.
• Burned pots/pans: this can be a sign of Alzheimer’s disease (i.e. a loss of short-term memory). If you notice burned items, or that they are frequently asking you the same questions, forgetting to pay bills or take medications, book an appointment with a physician.
• A Messy House or Unkempt Appearance: if you notice that your loved one isn’t showering or has poor hygiene, or if the house has become messy, it may be because they no longer have the strength/energy required to do these tasks, or it may be a sign of depression.
• Tripping: frequent falls often mean a loss of strength, balance and/or coordination, which can all be symptoms of an underlying issue.
• Dizziness: if your loved one is having dizzy spells, there are many potential causes. Some of the most common include low blood pressure, inner ear degeneration, a change in vision/eye disease or an untreated viral infection.
• Fatigue: some fatigue is inevitable as we age and our metabolism slows, however, excessive sleeping and the inability to do normal activities may be due to anemia, an infection, depression or cancer.
• Delirium/Confusion: although your gut reaction might point to Alzheimer’s, fconfusion or delirium can also be caused by a simple infection.

Dealing with Loss and Grief

The death of a loved one brings shock and grief – no matter how well prepared you are. All death is sudden, even when it’s expected. If you’ve provided care to an aging or ill family member, the emotions of loss can sometimes be overwhelming.

Common reactions you may have after a loss include:

Shock. This is probably one of the first things you will feel after the death of a family member. This stage often includes panic, denial and disbelief.

Awareness that the loss is permanent after the shock has worn off. You may not be able to talk about your grief because expressing your emotions is too painful. Feelings such as anger, guilt, shame and fear are common.

Anger is a natural part of grief. At this stage, you might choose to spend time alone, away from anything or anyone that could further add to your stress.

The healing process usually starts after the anger fades. You’ll feel less overwhelmed by your emotions and will find yourself slowly gaining more energy and hope. At this time, you may still occasionally feel depressed, but this is only temporary. The on-and-off sadness is usually sparked by something that reminds you of your loved one. You will learn how to cope with individual situations.

Lastly, you will begin the renewal process. You’ll find yourself “going on with life,” establishing new goals and forming a new identity, separate from the one you had with the person you lost.

But how can I help myself deal with my loss?

Vent your feelings: Talk to a friend or another family member about your loss. Even writing down your feelings can bring relief.

Join a support group: People usually find it helpful to be with others who are going through a similar loss.

Learn about grief: The feelings experienced during a loss can be frightening. Oftentimes, feelings are less scary when you realize they are common. It may be helpful to read books about loss or discuss your grief with a counsellor or doctor.

The following are links to websites that offer help on dealing with loss and grief:

http://www.familyservicetoronto.org/programs/seniors/counselling.html

http://www.baycrest.org/Programs_and_Services/SupportGroup/

-C.E.

Caring and Sharing…

That’s what we’re hoping this blog will be about. Caring for an ill or frail loved one isn’t an easy task. Even if it were your only job (and, let’s face it, for most people it’s not), it would be a challenge. But for most of us, we’re juggling a life and caregiving duties. Yes, sure it can be rewarding. But some of the time it’s thankless and some more of the time you’d rather be somewhere else.

I’m hoping this blog will give a voice to all those amazing caregivers out there. The ones that most of the time are too busy or too tired to read this, let alone post. Is my job to write? Sure it is. Do I have a personal connection with caring for an ill parent? Yup.

Does it have a happy ending? 

Well, that depends. My mom didn’t get better. But if you mean, do I regret for a second the time I spent taking her to appointments calling and asking for community support, advocating for her and ‘giving back’ after all she gave me?  Not for a second. My help and the support around my mom let her live her life with as much gusto and independence as she could possibly have. And while it can sometimes seem a pretty lonely road—many of us are either there, have been there or will be there in time.

What about you? Feel free to share your highest high or lowest low.