Tips for Caregivers

Parkinson's is a family disease; one that takes a team of involved and supportive loved ones to help a person with Parkinson's thrive. In most cases however, the bulk of responsibility lies with one main care partner -a spouse, a child, or a friend. For this individual, life is changed forever and they must take on many new roles when their loved one is diagnosed with Parkinson's. Theirs is a demanding job involving compromise, encouragement and strength. Their focus is on providing emotional and physical support, advocating on behalf of their loved one, and learning all that they can about Parkinson's disease. 

Lessons Learned

Over and over care partners report similar experienced about the challenges they face. Because of the progressive nature of Parkinson's, a care partner is challenged to know what degree of support their loved one needs at any given time. It is important that a person with Parkinson's is encouraged to speak for themselves and manage their own life for as long as possible; however, the care partner is a key member of the team. The relationship is sometimes described as one that begins as "partner" and evolves into "care provider". 

Here are a few practical steps for care partners to follow: 

1. Be an active member of the team: Attend medical appointments and be involved in every decision about your loved one's care. Research shows that people with actively involved care partners tend to do better. 
2. Ask questions until you understand the answer: Parkinson's is a complex, neurodegenerative disorder and as such, there is a lot to understand. Don't hesitate to ask questions until you feel comfortable that both you and your loved one understand the answer fully -this includes information about medication (what it's for, side effects, when to take, things to avoid). 
3. Keep your loved one honest: People tend to leave out important pieces of information when speaking with their doctor/neurologist either due to embarrassment or they simply think it doesn't matter. It is very important that care partners encourage their loved ones to tell their doctor everything including symptoms, changes in behaviour, other medications or supplements. 
4. Speak up for your loved one: Sometimes people with Parkinson's simply cannot communicate for themselves so care partners must speak up for them. 
5. Know what hospitals and/or care facilities have expertise with Parkinson's disease: Lack of Parkinson's education is the primary complaint that Canadians with Parkinson's and their care partners have about health care professionals coast-to-coast. If you have the opportunity, choose a facility that understands how to best care for someone with Parkinson's disease. 
6. Get to know the nurses: Whether in hospital, a care facility or at the movement disorder clinic, get to know the nurses that will be caring for your loved one. If necessary, explain the importance of administering medications on-time and act as a Parkinson's resource for them -your efforts will not only benefit your loved one, but every person with Parkinson's who needs care in the future. 
7. Take the opportunity to educate: Whether in a hospital, walking down the street or sitting in a restaurant, chances are that some aspect of Parkinson's will draw the attention of others to your loved one. Make the most of the situation by explaining what is happening and letting others know how they can help. 
8. Become an expert about supports & services: Find out what kind of support is available in your community and what the criteria for qualification are (home care, disability, CPP, tax credits). 
9. Befriend another care partner: Having someone who understands your situation can be invaluable. Over 240 Parkinson support groups operate coast-to-coast -simply contact your Parkinson Society Canada regional office to find the group best suited to you. 

You may find additional resources for caregivers online by visiting www.parkinson.ca and clicking on the Living with Parkinson's tab. 

By: Grace Ferrari, Parkinson Expert at Agecomfort.org Health Care Resource Centre

Photo Credit: Rosie O'Beirne

When the Parenting Roles Reverse: Parenting your Parents with Respect and Dignity

It's inevitable, we age, and there comes a time for all of us lucky enough to have our parents with us into their later years, when the parenting roles reverse.

The parents who have taken care of you and watched over your shoulder as you grew and matured are now relying on you to help them meet their needs.

For your parents, depending on you is a lesson in humility and can bring a range of emotions they may not have expected such as guilt, frustration or even depression or embarrassment.

Transitioning into the role of primary caregiver for your parents in need of parenting is no less difficult for you. Having to make decisions that affect their life, independence and care makes many a son and daughter feel uncomfortable and doubtful as to whether or not they've made the right choices.

Help yourself help your elderly loved ones:

Base Decisions on Respect and Dignity

Respect who your parents are and their wishes of how they would like to live out their life as best you can. They may have a living will or have spoken with you before. Use this to guide you when and if they are unable to express their preferences themselves, as seen in those with Alzheimer's disease.

Don't Leave Difficult Decisions Too Late 

Communication is they key to understanding your parent's situation, feelings, needs and wants. Don't leave difficult but necessary conversations too late, such as 'what would you want to happen when you can no longer bathe by yourself?'
Learn about the preferences your parents have and take note.

Clarify Expectations

Being the primary caregiver in a family can often be a willing burden. You want to help, you feel expected to help, but it takes more than one. If your siblings or involved relatives expect you to care for Mom or Dad, clarify how they expect to contribute. They can help with finances, do the shopping, organize the home care schedules or give you respite breaks when needed.

Don't Neglect Yourself 

How many times have they told you the story about what happened to them at the grocery store? Often people with dementia will repeat stories, sometimes word for word, without remembering they've already told you. They may ask you the same questions over and over again, too.

Share in Their Life 

Spend quality time with your parents and don't dwell on their mortality. Make memories together that will last and fuel you during the more difficult times.

Educate Yourself 

Medical treatment, surgery and rehabilitation options are changing and you need to be the moderator of you and your parent's healthcare. Be informed about any health concerns, join support groups and meet with professionals.  

Plan Ahead for Homecare 

Speak to a professional Care Coordinator at Premier Homecare Services to learn how your parent's independence can be supported with respect and dignity through the compassionate care of our caregivers.

By: Cindy Stead, Private Home Care Expert at AgeComfort.org Health Care Resource Centre

Photo Credit: Raul Lieberwirth

Putting Lipstick on Grandma at 97

My grandma recently turned 97...in the hospital. She fell and broke her hip, the good one. She will not be going home again.

When I was preparing to visit grandma, I thought to myself what can I do for her that will make her feel wonderful? What does she love in her personal care? Food? Leisure? What are her favourite things in the world?!

Instantly I thought about how important her hair and nails have always been to her so I went to the store and bought a nail file, buffer, nail polish remover and grandma's favourite shade of pink. I also bought hand cream to give her a gentle hand massage. I knew that the family had organized someone to do her hair regularly so I would simply fluff it! I also bought some prewashed mixed berries. Another favourite of grandma's.

As I walked into her hospital room yesterday, she was sitting in a chair wrapped in a blanket. Grandma looked so small and fragile, it was everything I could do to hold back my tears, to smile and pour energy into her room. To make her look and feel beautiful like the grandma I had always known.

Grandma woke as I was setting the bags down, she smiled and said, "Is that you, Kim?", and I hugged her and said, "Yes."

I pulled out the hand cream and pink nail polish and gave her a manicure. She was so excited. Her skin was so thin and cold. I fluffed her hair and then I said, "Grandma, would you like lipstick?".
She says, "Do you think I need it?"
I said, "Absolutely! Shouldn't we always look as good as we can?"
Grandma smiled and said, "Yes, we should."

See, grandma always wore lipstick, so why not now? The only reason  she is not wearing it is because it is hard for her to do it herself. So I searched her drawers...I found several boxes of "Pot of Gold" -the typical hospital present. And then I see her lipstick. I put it on her and then I mix hand cream and lipstick on my hand to make like a cream blush and dab her cheeks Grandma looks like grandma again. She is so beautiful and now she's glowing. My sadness has lifted.       

Just before I leave, grandma says, "I'll have to put my hands on top of the blanket so everyone can see my beautiful nails."

In my 44 years of knowing my grandmother, I have never felt so close to her. I have never touched her like I touched her, cared for her like I cared for her. This gift to my grandmother was a much greater gift to me. I will learn from this experience, share it and cherish this memory forever.

By: Kimbery Irwin, Beauty and Hair Expert at AgeComfort.org Health Care Resource Centre

Photo Credit: Haircuts on Wheels

Is it Safe to Leave Someone with Alzheimer's Alone?

What to consider when you loved one with Alzheimer's disease is home alone. 

Wandering

Will they stay at home or wander off? Is there a nearby store or coffee shop they like to visit? If you are concerned with wandering, consider double locks with a key, ID bracelets, and wandering registries. 

Do they know how to reach you and emergency assistance? 

Keeping emergency numbers such as family contact information and 911 beside each phone is an obvious and bolded format is important if anything should happen. 

Rummaging or hiding of household items

It is best to lock up all toxic and hazardous products and medications in a secure place. You may also wish to simplify the home by removing clutter and valuable items that may be hidden, lost or misplaced by a person with AD. Provide them with their own "safe box" or treasure chest to store objects.

Do they show signs of agitation, depression or withdrawal if left alone?

Being left alone may increase the stress experienced by a person with AD. Once agitated they may cause damage to themselves or the home, may leave. It may be challenging to calm them down once you return. 

Can they recognize dangerous situations? 

Can they identify signals such as smoke or fire alarms that would alert them of potential dangers? if they cannot recognize dangerous situations they may cause harm to themselves or others and are most likely unsafe to be left alone. 

Do they have frequent life-threatening health emergencies? 

Consider whether they have a history of heart attacks, strokes or seizures. Leaving them home alone, especially if it may cause them stress, may increase their risk of a health emergency. Carrying an emergency response button may help if they recognize it's use in a crisis situation.

Hallucinations, Illusions and Delusions

Due to complex changes in the brain, people with AD may see or hear things that have no basis in reality. Medical therapy and home adaptations may help to reduce their occurrence (soft lighting, clean area, familiar items). However there are serious risks to leaving them alone. 

Do they attempt to use the stove or other appliances unattended? 

You will need to evaluate the safety of leaving them home alone if they regularly attempt to use the stove, appliance, repair, woodworking tools or other former hobbies and activities. 

Do they have keys and access to a vehicle? 

Unfortunately, a person with AD loses independence, which is very frustrating. If they cannot follow the safety hazards enough to drive alone it may be best to hide the keys and remove the vehicle from sight. 

Follow-up plan

Write down Doctors and Social Workers contact information, as well as follow up appointment dates and times. Make sure you have all needed instructions for follow-up care such as rehab exercises and diet, when preparing to leave the hospital.

Home care helps

Caregivers with dementia experience are loving professionals who can assist with daily activities and provide respite for family caregivers. A variety of schedules are available and each client receives personalized attention.

By: Cindy Stead, Private Home Care Expert at AgeComfort.org Health Care Resource Centre