An Undiagnosed Autistic, I discovered my situation when my grandson was diagnosed and my daughter phoned me and said, "Mom I know what Dustin has, and you and I have all the symptoms!" I grieved the loss of the hope of being 'normal'. But later I decided that I was my own kind of normal. I write to encourage other autists and to promote the unique advantages of being autistic..
The Burnaby Seniors’ Outreach Society’s Caregiver Expo provided a fount of information. It was a pleasure to meet speak with Helena, following up on our initial phone conversations. If you weren’t able to attend the Expo earlier this month, here is a cheat sheet of valuable information: ten things I learned that I believe will prove helpful to caregivers.
NIDUS: Is an organization established in 1995 to provide both information and assistance with Representation Agreements. Nidus now serves as a registry for all the documents that outline your instructions for care should you become no longer capable, due to accident or illness. Materials and information are available on the website: http://www.nidus.ca
CAREGIVER EDUCATIONAL SERIES: Is available in Burnaby, through the Burnaby Seniors Outreach Services Society. This is a six week course presented twice a year on how to alleviate, manage and improve the quality of life for the caregiver and the care-recipient. More info is available at : https://www.bsoss.org/index.php/contact-us
PARKINSON SOCIETY OF BRITISH COLUMBIA: Provides free counselling for those who have Parkinson’s as well as their loved ones. Other services include a network of over 50 support groups, province wide. Contact them at http://www.parkinsonbc.ca
BONE BROTH: Is made from bones from organically raised and humanly butchered cows, the bones are simmered in water for up to 36 hours. The resulting broth is said to reduce joint pain and inflammation, promote strong bones and heal and seal your gut, promoting healthy digestion. To find out more, or to place an order call 604-432-9961.
ALLIES IN AGING: Is the mantra of the Family Caregivers of British Columbia (FCBC). This organization provides many supports, one of which is a magazine called The Caregivers’ Connection. To sign up for this publication, follow this link: http://www.familycaregiversbc.ca
FREE LEGAL CONSULTATIONS FOR SENIORS: Is available in New Westminster, Surrey, Burnaby, North Vancouver, and Vancouver. To find out more about this priceless resource, call 604-336-5653. Or learn more at http://www.SeniorsFirstBC.ca
RESPITE STAYS: Joel Grigg of AgeCare Harmony Court Estate advised me that care-recipients can come to stay at their retirement home for $90 a night. This includes meals, overseeing necessary medications, full access to facilities along with support staff availability. For the lower mainland this is a great bargain; it can grant peace of mind to the caregiver during a much-needed break. For more information go to: http://www.agecare.ca.
SAIL: Stands for Seniors Abuse & Information Line. 1-866-437-1940 available weekdays 8 a.m. to 9 p.m. with interpretation available on request from 9 a.m. to 4 pm weekdays, except for holidays. All calls are confidential.
LEGAL DOCUMENTS: I learned that
Wills cover everything after death,
Power of Attorney covers legal and financial matters while one is alive,
And a Representation Agreement appoints someone to make health and personal care decisions as you have instructed, on your behalf if you are incapacitated due to illness or accident. For more information, contact Nidus, (see #1 on this list) or use your free 1/2 hour legal consult (#6).
CAREGIVER SUPPORT: Caregiver Support is available in BC, often through the organizations that provide information and support for the care-recipient’s illness, such as the Alzheimer’s society, the Parkinson’s society, and the cancer society. There are also community and hospice caregiver support groups which are often free. Contact Fraser Health Services or Vancouver Coastal Health to arrange for a free assessment of the services for which you qualify, and a determination of costs.
And I cannot say this often enough: the best way to find support? Call your local hospice society offices.
The Caregiver Expo happens every year in Burnaby and the exhibitors offer valuable information ranging from the price of retirement housing to government, private and volunteer agencies that are in place to assist in the process of caregiving.
Caregiving is demanding and often frustrating as well as rewarding. To give and get the most out of this journey, it is important to care for yourself. These resources will help you to do just that!
If you are a caregiver living in B.C.’s Lower Mainland, here is an information and resource session that is well worth attending. It’s the Burnaby Seniors Outreach Services Society Caregiver Expo.
I spoke with Helena at the office (604-291-2258) and she gave me some info on who the exhibitors will be.
BC 211 agent. Helena told me this is a help line where people actually answer the phone when you dial 211. You tell them your situation: e.g. “My wife has dementia, and I would like to go away for a few days. Are there any respite care facilities in my area?” Internet research is great, but this new approach to the old Redbook is personable, friendly and well resourced.
Various care home companies (e.g. Chartwell and Harmony House) will be on site to answer questions regarding assisted and independent living. Did you know that some care homes offer temporary respite stays? What a great way to introduce your loved one to the possibility of community living. To check them out before going you may wish to research at www.comfortlife.ca
Allies in Aging holds North Shore workshops such as : Exploring Depression and Delirium; Translink Rider Training; and It’s Not Right! a workshop exploring how to detect and report elder abuse. alliesinaging.ca/
Citizen Support Services representative: From Burnaby City, this department offers grocery shopping and delivery for seniors, (free of charge), companionship through visitations and phone buddies, as well as lunches, bus trips and resource information.
Revenue Canada agents will be on hand to explain the various caregiving credits available for use at tax time.
Service Canada agents will explain the ins and outs of the newly extended compassionate care leave for those who work and still fill the caregiver’s role.
These are just a sampling of the exhibitors expected to attend. And there’s a bonus–admission and parking are free. There is something for every caregiver to enjoy at this event sponsor by the Burnaby Seniors Outreach Services Society https://www.bsoss.org/
Caregiver Expo 2018
Date: Saturday, February 3, 2018
Time: 9:30am – 2:30pm
Place: Bonsor Recreation Complex, 6550 Bonsor Ave., Burnaby, BC Free admission and free parking!
DO YOU LOOK AFTER A RELATIVE, FRIEND OR NEIGHBOUR WHO COULDN’T MANAGE WITHOUT YOUR HELP?
If you provide unpaid support to a relative, partner or friend who is ill, frail, disabled or has a mental health or substance misuse problem, you are a caregiver. Come along to our Expo to learn about programs and services that can support you in your caring journey.
The Caregiver Expo will feature over 20 exhibitors, Door Prize Draws, and great speakers including a keynote speech by Bee Quammie, Writer, Digital Content Creator, Event Speaker.
Nowadays many families experience a situation in which one or more members find themselves in the position of caregiver. And it’s Christmas! What better time to offer the gift of a helping hand.
Most people want to help, they just have no idea what to offer in view of their own time constraints.
If you really want to make a caregiver’s day, here are ten ways to do that. But before you call with offers of help, check your own schedule so that you know before hand when you can deliver on these offers.
Be specific. Decide what you are willing to provide: time sitting with the patient? Meals? Baking? Help with housecleaning or other chores? Running errands?
Bring or send flowers. Flowers brighten up any space, cheer up a sick room, and are a beautiful reminder that somebody loves you.
Phone first. Arrange the visit for a time when you can stay at least half an hour. Do not stay more than one hour. Spend at least some of your visit with the person being cared for.
If your intent is to spend time with the caregiver, stop and spend a few minutes with the ‘patient’, and then continue your visit in another room with the caregiver. This allows the caregiver to vent if necessary.
If you live far away or are busy with work and family and can’t help physically then send flowers, money or a gift card. Or arrange for a housekeeping service to come in once a week or twice a month.
Express appreciation. If you’re related to the person being cared for? Be grateful. And show it. Remember that old saying? But for the grace of God… Praise, if sincere, is nice to hear. It costs nothing and can make someone feel much better.
Be reliable. If you say you will help in some way, do so and do it at the time you stated. Caregivers are often weary, sometimes lonely and always overwhelmed, so be the bright, steady star in their lives—show up when you say you will. Bring what you said you would bring. And along with it? Your cheerful, smiling face.
Keep in touch. Caregivers often get left out of the family loop because they can’t get away to visit with relatives and friends, attend family events like birthdays and anniversaries and even casual get togethers. Phone them. Text them. Keep up with their facebook page. Let them know they are not alone in this.
If you’re internet savvy, offer to do on-line research for them. Maybe they need to find the palliative care/hospice alternatives in their community, or the parameters for these kinds of care. Maybe they’d like to know more about certain medications, or even caregiver associations or Red Cross equipment depots in their area.
Keep your own troubles away. Caregivers have enough to bear. If you’re visiting because you want a sympathetic ear, stay home. Find a counsellour or a different friend to confide in. Bring only your best face to the care home.
For myself, time to reflect upon how to balance my desires and expectations with the caregiving role I had assumed for another. This was of most benefit to me.
It was after the death of my father that I came to experience the positive change in attitude that this time of reflection can bring.
Mom and I had never been close. We never had what is viewed as the traditional ‘mother-daughter’ relationship. In fact, we’d had strong differences of opinion, and unresolved situations from our past.
But after the death of my father, Mom had nowhere familiar to go. And she was already in the early stages of dementia.
While we lived in a big city and she came from a small rural area, I felt she would be more comfortable living with my husband and I than with strangers in a rest home.
But could this work?
After a great deal of thought I came to the following decision: If I loved Mom, and cared for her well-being enough to want her to come and live with us, then I was clearly able to, if not forget the past, at least to forgive her for her part in it, even if this remained unspoken.
And if I loved her that much, then we would be okay. I would have no expectations of her. I would see what she could manage on her own and with what she needed help, and move forward from there.
That decision set my attitude.
Letting go of the past opened the way for Mom and I to eventually establish a curiously close relationship, one which had eluded us during my youth, and to heal the wounds we both had suffered in our mother-daughter angst.
Years later, as my husband, Chris, grew weaker and his heart disease progressed, I knew I needed help. I availed myself of what the local public health agency had to offer, but it was very limited.
In church one Sunday the priest told us to reflect upon whatever special blessing we required. I knew what I needed:
I needed God’s grace to see me through to the end of my husband’s illness. It is one thing to do what is asked of us by life, but it is another thing entirely to do it with love and joy.
No, I was not always cheerful and loving! I’m also human!
But at times when I caught myself ‘tensing’ into a reactive and unpleasant state I’d remember my prayer for grace, breathe out my tension and relax into a more loving approach; one that benefitted both myself and my husband.
We don’t have much time to ourselves; at least, I didn’t. But once or twice I had the time to think deeply about my position as caregiver.
And I believe it was the result of the thoughts generated, the decisions made and the attitude engendered by these times of contemplation that made my caregiving experiences positive.
It was in these times of reflection that I came to realize it is not the person in my care who determines how I feel about looking after them. That comes from within me.
I learned that I decide what my attitude will be, what presence I will bring into the room.
For many of us who are caregivers it’s not only the physical and emotional care of those we love, it’s also navigating the medical and legal systems that can be time-consuming and exhausting.
The effort and time it takes to sort through various systems in order to first determine what resources are available, and then the protocol of accessing them, is a huge part of the caregiving process.
Here are some links which may prove to be helpful in finding and using those resources:
In the lower mainland, Vancouver Coastal Health provides caregiver support as well as other services: http://www.vch.ca/your-care/home-community-care/care-options/caregiver-support
Always remember that at your local Hospice Thrift Shops you can usually find brochures outlining the hospice support services listed in your area. For example, here is an overview of services provided by the Surrey Hospice Society: “We serve the people of Surrey and those who access end-of-life care in Surrey British Columbia. Our Volunteers work in the community, at Laurel Place Residential Hospice and in the Tertiary Palliative care unit at Surrey Memorial Hospital. In addition to the supports and services we offer those facing end-of-life, we also provide respite, support and grief counselling to their friends, family and loved ones. Our support is on-going and far-reaching. We provide companions for the journey.”
I’m sure you get the idea. For hospice services in your area, just google the name of your town or district and ‘hospice society’.
Resources are out there. Do take the time to access them. We are so fortunate now to be able to look things up on the computer to get an idea of the services offered and how they might fit our needs. Phoning the agency in question before setting out can also be very helpful.
These resources are intended for your use, so don’t hesitate to find those that fit your needs and go for it!
If you have any information regarding additional resources please don’t hesitate to email me at: margaretjean64@gmail.com.
This post is about death, disability, disease and decision-making.
There comes a time when someone is ill or dying, and decisions have to be made about treatment and whether or not to prolong life, or suffering, as the case may be. Who makes the decisions? When? How? Singaporean not only love acronyms, they like things neat and orderly. And so several laws and programs have been put in place to help people do things properly.
Unfortunately, the introduction of these new programs have been muddled up with rules, details and legal jargon. Let me try to demystify it a bit…
Last will and testament
This is obvious. This is a legal document determining how to distribute one’s worldly possessions upon death.
Example – Aunty Helen died, and in her last will and testament, left her house to her son, her jewellery to her daughter, her bank account to her chauffeur and…
The call came midday. My grandson, Cody, had been in a serious motor vehicle accident. He had a broken back among other injuries and was in critical condition.
In the harrowing days that followed, I was reminded that as well as being ever present for the critical patient, the caregiver has a life of their own which must be managed even while giving much of their energy to the support of the person in crisis.
What to do about Work, and time missed due to caregiving?
The social worker at the hospital advised Bev to apply for Compassionate Care E.I. This Employment insurance benefit is available to people who will be unable to work for a period of time while they are providing support for a critically ill loved one. The benefit, for those who qualify, can be paid for up to 26 weeks. To qualify you will need:
A doctor’s certificate. The form can be downloaded from the E.I. website, and we simply took the form to the ICU where the doctor signed it for us.
An ROE from your human resource or payroll department.
An online application. We learned that VGH has a computer room available to patients and their families. As well as providing computers, the centre facilitates faxes, printing and copying forms.
My daughter took the forms to a local Services Canada office and left the Doctor’s certificates for reference with her file. Remember to have these forms photocopied so that you have copies in case the official ones go astray.
To learn more or start your own application go to: https://www.canada.ca/en/services/benefits/ei/ei-compassionate.html
There was also the travel factor; Bev lived about 300 miles from VGH. What options are available to families who live long distances from the hospital?
Staying with a friend or relative who lives in the area: Fortunately, I live less than 30 miles from the facility so Bev could stay with me. And the transit system is excellent. Although it took an hour and a half by bus and sky train to get within two blocks of the hospital, the stress of driving in and the horrific cost of hospital parking made the transit option preferable.
Ronald MacDonald Houses are highly lauded if available in the area of the hospital, and if your child qualifies. RMHC houses have an age limit of 21 years in some cases, and 18 years and under in others, in which case Cody being 24 years, his mom would not have qualified for a room. These accommodations have rules and small costs associated with them, and a doctor’s certificate is necessary if you need to stay overnight. See more at the website of the Ronald MacDonald House in your area. Costs are minimal and no one is excluded for an inability to pay.
Check housing available in the various universities. While they may not be particularly close to the hospitals, they all have excellent bus service to and from the downtown area. Some universities have very reasonable dorm rates in the summer when most students are off campus.
There are many other concerns, of course. But hopefully the info I’ve provided on these two issues is helpful.
As for Cody? He has a strong spirit and a great deal of loving support as well as a wonderful attitude of gratitude. He is healing far better than anticipated.
Monique Lanoix writes that caregivers face serious issues including loss of work, poor health and poverty, while at the same time performing a much-needed civic duty that saves the government millions in health-care funding. The caregiving act also allows the recipient of care to remain at home, which is preferred.
In other words, everyone seems to benefit but the caregiver. While most people decide to be care givers and are happy to do so, the stress factors still exist.
Here are five ways to cope with, if not reduce the stress associated with caregiving.
Check your posture. “Really?” you say. “Honestly, I’d expected something better than that!” But the reality is, correct posture with your shoulders back and down, your chest up and your head up, allow all of your organs to sit in proper alignment and therefore function efficiently. Proper posture also opens up your lungs, allowing for better and healthier circulation, intake of air and circulation of oxygen through your system.
Breathing deeply in and holding that breath, and then slowly breathing out again, is one of the best ways to relax and to send the message to your own body that you still know it’s there. It is so easy to ignore our own bodies when we’re feeling exhausted from the challenges of giving constant care to someone else. But you need this body, and you need it to be well. So bathe your lungs in oxygen.
Indulge in Music: Music is one of the greatest de-stressors of all time. If you like to sing, then hum or sing while you load the dishwasher, change the laundry loads, cook a meal or take a shower. Likewise, if you just like to listen, turn on the tunes and indulge in a little “kitchen dancing” while you prepare meals, do dishes, or prepare meds. While the care-recipient is taking a nap, lie down in a separate room, if possible, and snooze with a soothing song or sonata playing in the background. Focus on the music. You’ll find your mood uplifted.
Keep a Journal. As a Caregiver you may have plenty of complaints, stresses, concerns and just plain worries. Journalling is a neutral outlet that allows you to vent adinfinitum. For some people, just writing down the flood of negative thoughts and emotions allows for more positive energy to re-enter the body and mind. Once you see your rants on the page, you are more likely to be able deal with them objectively.
Maintain a healthy diet: If you are what you eat, then surely this is the time to indulge in foods that protect your health and energize your cells. Keep up with daily vitamins, especially C and D. Eat organic or at least fresh, raw vegetables. Try setting up a plate of cucumber, zucchini and carrot sticks, grape tomatoes, broccoli florets and apple slices early in the day and keep it in the forefront of the fridge.
For meal prep remember that lightly steamed vegetables or salad are fresh, loaded with vitamins and have the advantage of being much quicker to make, serve and eat. Yogurt with its probiotics will help with digestive tract issues like indigestion, gas, and constipation which can occur when you must sit a lot, as many caretakers must.
Like many of your cohorts, you are probably primarily responsible for those in your care. So keep in mind that it is as vital to them as it is to you, that you keep yourself healthy and in a good frame of mind.
Being a caregiver is demanding. Sometimes overwhelming. And sometimes? Extremely gratifying.
It can be an emotional roller coaster. For instance, one woman described it as being in “Dementia Prison” with her mother. Another, who cared for a husband whose condition demanded 24 hour care told me, “but I love him so much.”
Many people who are dealing with their loved one’s condition alone often feel drained and exhausted. Being constantly tired and depleted of positive energy can lead to chronic depression.
So, you may ask, what are the positive aspects of this care giving journey?
Consider this: This week, my friend’s only child, her thirty-four year old son, Shaun, died suddenly and unexpectedly.
He had a stellar career in Ottawa, working with the Prime Minister and cabinet members. His portfolios included the Yukon and the three territories. People who knew and worked with him describe him as a gentle, incredibly knowledgeable, go-to guy if you had questions, or needed assistance.
At this young age, he had run campaigns for MPs and provided research for political speech makers. He made and kept his friends: those from university, from campaigning, from his work in Ottawa and from his home in Vancouver, on the West Coast.
This brilliant, considerate and loving young man is no longer with us. Because his passing was completely unanticipated, there was no time to say goodbye, to make a final connection, to reach out to him, or for him to reach out to others. In an instant he was gone, and with him, that cherished light in his mother’s life.
Yes, care giving is demanding; sometimes depressing, sometimes exasperating while at other times hopeful and surprisingly rewarding. But above all, attending to our loved ones, and on occasion our not-so-loved-ones, affords us the time to reflect, and upon reflection the possibility of re-configuring our relationships.
The gift of time is precious. It allows us to say goodbye. It is an opportunity for closure for both ourselves and our loved ones.
How often have you noticed something that needs to be addressed in order for your loved one to have the best care? Probably almost as often you have felt mentally, emotionally and physically exhausted.
The key to dealing with these situations is to be prepared, to be as informed as possible. Armed with the relevant information you will feel empowered and confident.
These eight practical suggestions will ensure quick access to the records you need to be effective in your dealings with medical professionals and bureaucrats when issues arise.
1. At every appointment, take notes and always date them.
Be sure to include a list of all participants. At meetings with medical practitioners ensure that you record key terminology and associated terms, and any recommendations that are made. This applies not only to specific medical concerns but also to diagnosis and treatment options. I kept these notes in one notebook making it easy for me to quickly locate relevant information. This helps immensely if you should decide to question a medical decision.
2. Get copies.
Always insist that you receive any report that is generated concerning your patient. I found that doctors were usually willing to have an assistant photocopy documents for me. I even received ECG printouts when I asked for them.
3. In the Province of British Columbia you have the right to a printout of any lab test results requested by your doctor. However you must tell them you want a copy when you submit the requisition to the lab. The lab will then either give you a card with the internet address where you can access the results, or if you prefer, ask to have them mailed to you.
4. Ask the pharmacists to photocopy all original prescription requests from your doctor. This allows you to compare the dosages indicated on bottles or vials to what the doctor actually prescribed. It also enables you to check prescriptions against previous ones. On rare occasions this additional check helped me to determine, with a pharmacist’s assistance, that the prescription filled was either inaccurate or inadequate. I found that Costco pharmacy was always willing to go this extra distance to ensure my peace of mind.
5. Don’t back down. If you have gathered all the information and know that you are right, don’t yield. Always be calm and courteous, but insistent. Do your research. If you are lucky enough to have a nurse or doctor in the family or in your circle of friends, discuss the issues with them. They may put your mind at ease with the medical advice you have been given, or they may indicate possible strategies for intervention.
6. Phone calls to professionals are most effective when you maintain a professional demeanour. The last thing you want to do is to alienate the people who hold your loved one’s life in their hands! Use phrases like “it seems that this is the case…”, or “is it not the case…?”, or “could you please explain to me…?”, or “it seems to me…” as opposed to “you made a mistake…”, or “you lied…”.
7. In the case of bureaucratic delays or rejections, where time is crucial to ensuring the well-being and best care of your patient, state that if necessary you are willing, while be it reluctantly, to go to wider public resources: the local newspaper or TV station.
When writing a letter always copy to your MP or MLA and state that you are doing so. Assert and reassert the facts. When you have the evidence to back up your position, you need never back down.
8. You are your loved one’s lifeline. Never forget that. One of a caregiver’s first and foremost endeavour is to advocate for those who are under their care.
Margaret Jean.
This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.
Caregiver Me 