How to Stay Calm Over the Holidays

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It’s December 6th and the holiday season is well under way. How are you feeling?

This time of year can be nurturing, love-filled and warm. It can also be hectic, stressful, and sad. There’s a lot of pressure to attend events, buy presents, and make food. Balancing the stresses of the holidays with your caregiving role can be especially challenging.

Here are a few tips for staying calm over the holiday season:

SAY NO | Does agreeing to attend dinner at a friend’s house bring a lump to your throat? Politely decline. 

PRACTICE MINDFUL CONSUMPTION | One of the biggest causes of stress over the holiday season is the pressure to buy and give gifts. If you’re strapped financially, this pressure and stress can increase. Despite the incessant messages sent from media, the holidays should be about connecting and celebrating with family and friends, not about gifts. Consider talking to your family about skipping presents this year and sharing a meal instead. If your family feels compelled to give and receive gifts, try planning a “secret santa” so you only have to give and receive one present, with a capped dollar amount. You might find that your family is relieved to have a different option presented!

EAT CALMING FOODS | If you’re feeling frazzled and then consume a lot of sweets, heavy meals, and alcohol offered, you’re likely going to feel worse than you did before. Indulging in the fruits of the holiday season is great in healthy amounts, but remember to eat mindfully and support your system with nutritious, balanced meals.

CONNECT | Amidst the business of the holiday season, you might be feeling lonely or isolated if you’ve recently experienced loss, or if you’re spending most of your time caring for a loved one. As mentioned, I invite you to say no to events that don’t serve your spirit. Say yes to events that do. Pushing yourself a little out of your comfort zone and connecting with caregivers who understand and support your journey can make a big difference in how you view the holiday season. Tip: NSCR’s December Network Groups include a potluck! We’d love to see you there. 

How do you stay calm over the holidays? We’d love to hear from you!

 

Cassandra Van Dyck

 

 

 

 

 

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The elderly and their adult children

I’m an adult children of my two 80-something parents.  As such, I have a dual role: at times, I am a leader: taking charge, delegating, coordinating.  At other times, I’m still their little girl, or at least, they see it that way.  It can make for some pretty interesting (and challenging!) moments.

Are you also an adult child?  Here’s some facts and ideas I found from Eric Digests:

https://www.ericdigests.org/pre-925/adult.htm

The population of what they call the ‘oldest-old’ (85 years+) is rising.  Adult children provide about a quarter of the care to elderly fathers and a third of the care to elderly mothers.  Traditionally, it has always been up to adult children to care for their parents, indeed, in some cultures, children are seen as a kind of old age insurance.  Adult children provide direct assistance to activities of daily living and also coordinate and monitor services.  The ‘baby boomer’ population is becoming older, and this group tend to have fewer children to care for them.  Caregivers are at times, under a great deal of strain.  Some suffer from the emotional burden of care and tire out.  Support groups play a large role in helping the caregivers deal with stress.  As recently announced by our Prime Minister, caregiving is a tremendously valued social resource.

As a an adult child, I often remind myself of the gratitude I feel towards my parents who cared for me as best they could and provided me with opportunities.  I see caregiving as an act of ‘giving back’.  Yes, it can be stressful, but also, it can be very rewarding. I savour the special moments I have with my parents (I call them my ‘hummingbird’ moments). One day I will look back and remember this time, and know that I made a difference in the lives of two very special people.

Perhaps you feel the same way?

Calm Pond

 

You’re not alone in those bouts of depression

Feelings of discouragement or despair are not uncommon for family caregivers.
Witnessing the decline of your loved one can be an intensely uncomfortable and sad process for even the most capable and resourceful of people.  It becomes a mental burden when constantly thinking about the nature of your parents’ or spouse’s changing condition, while wondering how you’ll manage to keep them as healthy, comfortable, and dignified as possible. There have likely been some significant changes in your relationship with this person, and your Dad or husband may no longer be a steady source of friendship, support, and inspiration as they once were. The ongoing mental strain that comes with being in this challenging situation- the sadness, worry, guilt, or uncertainty about the future, accompanied by a personal habit of overdoing the negative thinking, can lead to bouts of depression in caregivers. The experience of depression may not be a locked-in mental health diagnosis for you; it is more likely your body’s response to the many challenges and sorrows you have encountered in your caring role.

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This post is a brief look at how depression is quite a common experience for caregivers- and to let you know you’re not “crazy” or “unskilled”  in some way.
You’re definitely not alone. It is understandable that, given the long list of tasks you’re responsible for, some of the time you might feel utterly exhausted, down and blue. It is important to keep track of when you’re feeling depressed, so you can tell how often, and for what length of time you’re feeling this way. Keeping track of how persistent your symptoms are will help you gauge when it’s time to reach out for help from a trusted professional.

Feed your curiosity.
Try being curious about what depression could feel like in your body and mind. You might be surprised as to how it shows up- when you think you’re simply feeling tired or ill at ease, there may be a number of mental and physical signs that point to a bout of depression.

A few signs of depression:

Mentally
 ‘I’m a failure’
‘I’m no good’
‘This is my fault’
‘Things will never get better’

Physically
tired all the time
sick and run down
headaches and muscle pains
churning gut

Symptom list sourced from :https://www.beyondblue.org.au/the-facts/depression/signs-and-symptoms

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Ways to lift your mood

Make a plan to get outside. Even on the dreary, rainy days it’s good to breathe some fresh air into your lungs. The presence of natural light and looking at gardens and trees is incredibly mood boosting.

Be compassionate with yourself. Acknowledge that you’re having a hard day or week. Tell a friend about it or write it down, and after a few minutes of expressing your feelings, focus on another activity that gives you positive energy.

Create a meal plan for the week. Think about foods that are simple to prepare, and tasty meals that will give you good nutrients without feeling too fussy to pull off.

Tickle your funny bone.  Spend 15 minutes watching your favourite comedian, or call a friend that makes you laugh. Read funny jokes and cartoons in the paper.  Laughter recharges both the physical and mental energy, and releases tension you may not realize you’ve been carrying.

 

If you find yourself feeling depressed on a regular basis, I encourage you to get some extra support. A little help can go a long way, and having a trustworthy, kind, and consistent professional or loved one who is there for you can make a ton of difference.

-Karyn

Managing the Cost Of Caregiving

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The financial cost of caring for a loved one is a topic that can cause a lot of stress, worry, and fear.

Several situations can arise that may cause financial strain. Your loved one might have been employed and can no longer work, or perhaps you’re not able to work as much as you used to. Grocery costs can mound, as can the price of gas and parking to get to appointments. Your loved one might need medical equipment that is not covered by health insurance, or it might be recommended that they see specialists whom you also do not have coverage for. The cost of medication can be burdensome. If you are already on a limited income, these stresses can increase.

If you are a caregiver, you are probably familiar with with the financial concerns listed above. Much is not in your power, but there are ways to ease financial stress. Read on for some tips from our Resource Guide for Family Caregivers.

Look in to federal government services. | You might qualify for more assistance than you think, so it’s always advised to do your research. Have you heard of the Guaranteed Income Supplement or Allowance? The Guaranteed Income Supplement provides a monthly non-taxable benefit to Old Age Security (OAS) recipients who have a low income and are living in Canada. You qualify if you are a legal resident of Canada, you are receiving OAS, and your annual income is lower than the maximum annual income. The Allowance benefit is available if you are aged 60-64 and your spouse receives OAS. Visit http://www.servicecanada.gc.ca for more information.

Know your available tax deductions and credits. | Additional financial support is available through a variety of income tax deductions and credits, such as Caregiver Tax Credits, which allows you to claim money for maintaining a dwelling where both you and a dependant live. Also look in to the Infirm Dependent Deduction, Disability Tax Credit, Medical Expenses Credit, Age Credit, Spousal Credit, Equivalent to Spouse Credit, Dependent Disability Credit, and BC Sales Tax Credit. Talk to an income tax professiona if one is available to you, or consider visiting a free Income Tax Clinic, which are available for single people whose income does not exceed $25,000 or for couples whose combined income does not exceed $30,000 per year.

Apply for BC PharmaCare. | BC residents with active Medical Services Plan of BC (MSP) coverage are eligible for coverage. Click here to look in to your options.

Apply for Shelter Aid for Elderly Renters (SAFER) | The Shelter Aid for Elderly Renters (SAFER) program helps make rents affordable for BC seniors with low to moderate incomes. SAFER provides monthly cash payments to subsidise rents for eligible BC residents who are age 60 or over and who pay rent for their homes. For more information and to apply, click here. 

If you are struggling financially to care for your loved one, remember to reach out for help. It may feel hopeless sometimes, but there are options, organizations, and people who are able to help.

 

Cassandra Van Dyck

 

 

 

Respite is essential for your health

My definition of respite: Time away from regular caregiving duties that gives you a much deserved break, and helps you regain strength.

 

It is normal for a caregiver to have LOTS on their mind. Lists of phone calls they need to make; upcoming appointments for a loved one; worries about house maintenance or finances; the busyness of preparing meals and keeping the house organized.
All of this can be stressful and tiring, even when you are supporting a parent or spouse out of a sincere desire to be there for them … even when you truly love this person and feel positive about your ability to manage all that needs to be done.

Whether your care partner lives with you or elsewhere, it’s essential that you sometimes get a break. For your mental well-being and peace of mind, it is helpful to have your loved one looked after by professional care staff for a few days every so often.
Booking them into overnight respite allows you to focus on other parts of your life, such as following your own career dreams, spending time with friends, going to doctor’s appointments and tending to your own health, or simply having a bit of time to unwind and not respond to someone else’s needs.

 

“To be self-nurturing is to have the courage to pay attention to your needs”
-Alan Wolfelt

 

4 positive effects of accessing respite:
Permission.
You are giving yourself permission to be off-duty for a couple days. This is a healthy choice to make. Your system will have a chance to slow down and relax a little bit, without being on high alert towards the other person’s care needs. You are not selfish for needing some time away- you are choosing to act in a loving way towards yourself.

What do I need permission to do right now?

Re-discovery.
This is an opportunity for you to re-connect with activities you enjoy doing. You may have become too tired or stretched for time, and lost track of what makes you feel energized and happy. Take this chance to remember who YOU are, without the caretaking role.
What makes you smile?  Think about an activity you can you re-introduce into your life a couple times per week, even for 10 minutes.

Simplicity.
While you may have many sweet, meaningful or lighthearted moments with your spouse or parent during a usual week, you likely have some frustrating or exhausting ones as well. When you book the time off, you regain simplicity in daily routines, living your days according to what you want or need to be doing- if even for a short while.
I
 invite you to notice whether your schedule is feeling too hectic. Think of 1 task you can delegate that will make your life less strenuous.

Change of scene.
Even though your family member might not be thrilled to try respite out, they’re likely to have lots of great experiences. They will probably make some connections with staff or residents of the facility. This can really boost one’s self-esteem and enliven the spirits. There will be social events on the go, such as afternoon tea or happy hour. Groups of residents will gather to talk about current events, or listen to live music that gets their feet tapping. A few days around other people can be a marvelous antidote to isolation and loneliness.
For details on overnight respite options in North and West Vancouver, call or stop by our office at Capilano Mall, suite 201. We have brochures on local care facilities (both public and private options), recreation programs, and meal delivery services. Our staff and volunteers are happy to chat it through, and seeing a friendly face doesn’t hurt either!    www.nscr.bc.ca

Some people feel guilty when they book their family member into overnight respite. This emotion is one that can be lessened or worked through with the support of good friends, a therapist, or a bit of self-inspired reading.
Here are a few books and articles to get you started:

Escaping Toxic Guilt: Five Proven Steps to Free Yourself from Guilt for Good! -Susan Carrell

Emotional Blackmail: When the People in your life use fear, obligation, and guilt to manipulate you.   -Susan Forward

Graduating from guilt: Six steps to overcome guilt and reclaim your life.
-Holly Michelle Eckert.

Toxic Guilt, Healthy Guilt By Margaret Paul, Ph.D. http://www.selfgrowth.com/articles/MargaretPaul13.html

 

Enjoy the break! In my view, you completely deserve it.
-Karyn

 

The Lazy Woman’s (and Man’s) Guide to Yoga: An Interview with Taylore Daniel

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Hi Taylore! Thank you so much for taking the time to speak with us. We see your book, “The Lazy Woman’s Guide to Yoga”, as a wonderful resource for caregivers. Caregivers often struggle to find time for self-care. Your pose suggestions can be done anywhere, anytime. Not only does yoga help ease sore muscles, it can help caregivers feel better emotionally so they can support their loved ones and take care of themselves.

Can you tell us about what inspired you to write the book “The Lazy Woman’s Guide to Yoga?”

Well, there’s a lot of people who’d like to do yoga, but at the same time, yoga can feel intimidating and inconvenient. It usually involves a one-hour class outside the home. It involves floorwork, a change of clothes, a teacher, and poses that might feel strange or risky. So what inspired me to write this book was the desire to help people practice yoga in an easy, effortless way that fits their schedule, can be done sitting on a chair at home or out and about doing errands… no floorwork, special attire or teacher required.

How has yoga changed your life?

Yoga has been a part of my life since I was a child, when I took my mom’s Hatha Yoga book off the shelf and began going through it page by page, copying the poses. Throughout my life, there’s been times I’ve practiced yoga regularly. And other times, not. When it’s a regular part of my life, I feel strong, my joints are supple, I feel energetic and grounded. When I fail to practice, I begin to feel creaky, puffy and a little sluggish. There’s a direct relationship between yoga and quality of life, and the older I get the more direct this relationship becomes. 

Could you recommend a pose that helps give people energy first thing in the morning?

A fabulous energizing move in the morning is what I call “flying.” Simply put, raise and lower your arms at your sides, as if you were a bird. Moving our arms above our head pumps blood and oxygen to our brain, increasing alertness and clarity. As well, it loosens up and revitalizes the arms, shoulders and back, and gets the spinal fluid flowing through our body and lubricating our joints. Not to mention, this flowing move feels absolutely wonderful. (And it can even be done while you’re watching television or reading email.)

How about one for winding down in the evening?

A great way to wind down in the evening is with the breath. When we exhale longer than we inhale, our entire nervous system begins to calm. Inhaling slowly to a count of 2, and exhaling to a count of 4, you will almost instantly sense your shoulders relaxing, the muscles of your jaw and forehead becoming softer, your mind quieting. Feel the breath reach right down into the belly and your whole body will begin to relax.

I love the chapter in your book on tapping! It’s not something I’ve heard about often when reading about yoga. What would you say to someone who’s hesitant about trying it?

Using our fingertips, the palm of our hand, or a loose fist to gently and softly tap our limbs, our backs, our stomach or any other part of our body is a safe and effective practice that releases physical tension and knots. Try it right now, and see how it feels. It’s effortless and can be done anywhere, whether it’s behind the wheel of your car or waiting in a line up. Tapping also brings fresh oxygen and blood to the skin, so has the effect of giving us a lift.

An inevitable part of the caregiving journey is grief. Are there any yoga or tapping exercises that are especially good for coping with loss or changes of a loved one? 

As well as releasing physical tensions and knots, tapping relieves emotional stresses like grief, loss and anxiety. One effective tapping exercise is to, first of all, identify where the feeling of grief is located in your body. Is it your throat? Chest? Stomach? Once you’ve located where in your body the feeling sits, softly tap that spot with the pads of your fingers. You’ll find this simple exercise emotionally soothing, calming and nurturing.

Finally, what would you say to someone who tells you, “Yoga is not for me.”

When someone says, “Yoga isn’t for me,” I get it. There can be a sense of insurmountable obstacles with any new practice, including yoga. “Where will I find the time?” “What if I can’t sit on the floor in lotus position?” “What if I don’t live near a yoga studio?”

The main reason I wrote “The Lazy Woman’s (and Man’s) Guide to Yoga” is to make yoga so effortless and convenient that anyone can practice it, whether there’s time issues, mobility issues, or motivation issues. The key is to simply begin where you’re at, taking a moment here and there, seated comfortably or standing, at home or in the midst of running errands. The benefits from even a few seconds of yoga throughout your day are immeasurable.

Do you have anything else to add?

Thanks so much Cassandra for your great questions! They were thoughtful and practical, and I really appreciate you taking the time to ask.

Thank you so much, Taylore!

 

Taylore Daniel is a yoga teacher and personal trainer. “The Lazy Woman’s Guide to Yoga” and “The Lazy Man’s Guide to Yoga” are at Amazon.ca/com, Banyen Books, and other Vancouver bookshops. www.tayloredaniel.com

The Lazy Woman’s Guide to Yoga” and “The Lazy Man’s Guide to Yoga” is at Amazon.ca/com, Banyen Books, and other local Vancouver bookshops. Visit Taylore at www.tayloredaniel.com

 

 

Mental Health First Aid Course

What follows is a review of a course I took from CMHA (Canadian Mental Health Association) this month.

Mental Health First Aid is described as : “providing comfort and assistance to a person experiencing a mental health issue or crisis until the person gets professional help or the crisis is resolved.”

There is a great need for this as: “In Canada one person in five will experience some problem with their mental health in the course of a year and… one person in three  will experience a mental health problem in their lifetime.”

A  Mental Health Commission of Canada study estimates mental health problems cost the economy $50 billion in the cost of direct services and lost productivity in 2011.

Added to this is the fact that mental illness most likely strikes people during their most productive years (25 yrs to 44 yrs).

The course, which takes two full days, covers:

  1. Substance-related disorders
  2. Mood-related disorders
  3. Anxiety and trauma-related disorders
  4. Psychotic disorders

And what of the future of mental health?

By 2020, WHO (World Health Organization) anticipates that depression will be the leading cause of disability for all ages and sexes in developed countries.

As there are 8.1 million caregivers in Canada (1 in 4 Canadians), the stress they endure is likely to have a major impact on mental health, so courses like these are essential.

All the more reason to practice good self-care.  Stay tuned for blog posts on resilience, and also some very cool mental health websites coming out of Australia.

Calm Pond

3 Ways to Build Resilience

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“You’re imperfect, and you’re wired for struggle, but you are worthy of love and and belonging.” – Brene Brown

How do you react when times get tough?

Your loved one’s health is declining. You have a growing to-do list and feel that you have no support. Money is tight. You’re having trouble finding respite. You’re having a hard time getting enough sleep. 

There are so many stressful situations and obstacles that come with your caregiving role that are not within your control. Although you can’t always prevent tough situations from occurring, you can decide how to respond to them.

The ability to recover and respond to a challenging situation is called resilience. Some people seem to have it in spades, while others struggle to bounce back from setbacks. Your ability to be resilient is based on lots of things – the way you were raised, your unique disposition, and your current challenges. Some days you might feel very resilient, and others you think you can’t handle one more thing. You might be going through a particularly hard time because of recent changes or challenges. There are a lot variables.

No matter where you’re at, there are things that you can do to boost your resiliency. Read on for 3 suggestions.

CRY | No, really. Remember that resiliency does not mean that you are not effected by the tough things that are happening in your life. You do not need to shut out emotions or pretend that everything is okay when you  feel underneath that it is not. In fact, doing so can make things worse. It is important to be able to express emotions and to be able to reach out for help when you need it. Resiliency is the ability to bounce back; it is not the denial of emotions. Resiliency requires vulnerability. The better you are able to experience and feel tough emotions, the easier you will be able to move on from them and reach out for support.

CONNECT | Who do you call when you need to talk? If they’re not available, who’s your back up? Try creating a plan for yourself to refer to when you feel that you’ve reached the end of your rope. Write a list or create a map of your support network. Add family, friends, professionals, and network groups. Resiliency does not mean going it alone. Having support when you need it will help you to work through hardships so you can move forward.

PRACTICE SELF-CARE | We talk about self-care a lot, and for good reason! You cannot expect to respond to challenging situations with resiliency if you are not taking care of yourself. Make sure you are getting enough sleep, eating well, and exercising. Make time do the things that you love.

Cassandra Van Dyck

Incontinence Care: Insight from Maureen McGrath

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In the July/August edition of the Family Caregivers’ Grapevine, we published an article featuring tips and resources for incontinence care. A reader pointed out that VCH’s Continence Promotion and Management Program is no longer in operation.

Not sure of where to redirect readers, we connected with North Shore’s own Maureen McGrath, a nurse continence advisor with Doctors Stephen Kaye and Carolyn Donnelly, for some more information on this important topic. It became apparent quite quickly that McGrath is passionate about getting help for those suffering and that she has a wealth of knowledge to offer. Read on for Maureen’s tips and resources.



McGrath shared that there are only three bladder and bowel clinics care programs in BC covered by MSP, and they are located at St. Paul’s Hospital, Abbotsford General and Richmond General Hospital. The wait is anywhere from 4-9 months for clinics covered by MSP. A patient can receive care in McGrath’s clinic within a week or two.
 
”It has been my experience that although speaking to a family doctor may be a good first step if he/she is trained in diagnosis and treatment of urinary incontinence but referral to a specialist such as a gynecologist or uro-gynecologist may be necessary. Patients may also self-refer to a Nurse Continence Advisor (NCA),” says McGrath. “Urinary incontinence is complex and diagnosis is key to treatment.

There are 5 different types of urinary incontinence:

1. Stress
2. Urge
3. Overflow
4. Functional
5. Mixed

Bladder Health education is integral to success. That said, diagnosis through proper assessment is key and which is within the scope of the NCA. “We do a history, medication review, ascertain contributing factors, provide diagnosis and treatment recommendations.”

Here are a few recommendations for caregivers:

  1. Dilute urine is less irritating to the bladder than concentrated urine. Drink enough water based fluids so your urine is clear 90% of the time.

  1. Treat constipation by increasing fibre, ensuring adequate fluids and taking advantage of the gastrocolic reflex. Constipation is a contributing factor to urinary incontinence.

  1. Moisturizing your vagina is just as important as moisturizing your face. Upwards of 75% of women lose estrogen, the hormone regulator of the urogenital tract and vagina. Personal moisturizers like Gynatrof or low dose localized estrogen treatment is important for vaginal health and may help to reduce the risk of a urinary tract infection (UTI)I (which may lead to leakage of urine). It is very dangerous for women over the age of 65 to get a UTI as it places them at risk for sepsis.

  1. Kegels are important but must be done appropriately by squeezing the rectal muscle (the muscle that prevents you from passing gas) to the count of 3, holding it for 3 and releasing it to the count of 3.

  1. Bladder irritants in moderation. (bubbly drink, spicy foods, tomato, chocolate, citrus, vitamin C, caffeine (limit coffee to1 cup/day) to name a few.

  1. For stress urinary incontinence (leaking with cough, sneeze and/or exercise) or a pelvic organ prolapse that results in urinary retention, leakage or discomfort, a pessary which is a small medical grade silicone device to support your urethra, bladder or uterusis a great conservative option that resolves the issue immediately and gets a woman back to her regular activities!

McGrath thinks the most important piece of information is that THERE IS TREATMENT! “Leaking urine is never normal. One doesn’t have to suffer needlessly.”

Maureen is in private practice in North Vancouver at #103-1221 Lonsdale. To book an appointment email her directly at: nursetalk@hotmail.com 

For more information on Maureen McGrath and her work, visit: http://www.backtothebedroom.ca

or listen to The Sunday Night Sex Show on News Talk 980 CKNWhttp://globalnews.ca/bc/program/sunday-night-sex-show

Thank you so much for your insight, Maureen!

What I Wish I Knew Back Then: George

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Our blog writing team gets together each season to discuss what’s working, what’s not, and what we need to post more of. At our most recent gathering, we talked about breathing some life in to the What I Wish I Knew Back Then series. 

In our May/June Family Caregivers’ Grapevine, George shared some insight in to his journey caring for his father before he passed away. George was quoted in Navigating New Terrain: The Male Caregivers’ Journey, but we thought it would be pertinent to publish some more of his thoughts and tips, since they may help some of you on your caregiving journeys. 

Thank you so much for sharing your story, George!

Who did you care for?
My father
For how long?
2 years
What kinds of things did you do to help?
Daily check-ins to see how he was doing as he had a progressive disease of dementia. I also took him to doctors appointments, specialist appointments and eye appointments and frequent trips to emergency. Getting his medication and making sure he was taking it was also on the list. I visited him and my mother frequently to ensure everyone was safe and secure. I also had to monitor my Mother who was having a very difficult time with his health physically and emotionally. I took him to the Emergency room several times as his illness progressed and had to help to try and make an informed decision on whether to go ahead with two surgeries.
What impact did caring for your parents have on you emotionally?
It’s emotionally devastating and depressing to see a loved one slowly disintegrate physically and mentally before your eyes. It also alters your relationships with other family members. It was very difficult. The biggest challenge was not having a plan and not having the training to develop a plan. Once we understood what we were dealing with it was much better. Complicating the progressive nature of my fathers dementia was that he developed a potentially fatal aortic aneurysm and if not treated he could die at any moment when the aneurysm burst. We were lucky in that I had taken Dad to emergency and while we were there he asked why his chest was bumping up and down. The Dr did a cat scan and found the aneurysm. Luckily, the ER doctor had a mentor who was just starting an experimental procedure that may provide a relief for the aneurysm. We signed up for this and so now we were working on two life altering problems. There was a good possibility that the pins from the stent might cause the aneurysm to break while they were doing the surgery so this was very stressful. When Dad had his operation with this new experimental procedure unfortunately he had a heart attack but they were able to bring him back. Once that was under control we went back to the dementia problems. As dementia progresses the thought processes get more dysfunctional. In my father’s case he was not connecting with reality any more. I remember getting a call from my Mom at 3 am saying she couldn’t cope any more as my father was trying to climb out his bedroom window. When I got there, he refused to go to the hospital. People with dementia can be very suspicious and I had to talk him into going in to get his back looked at as he said it was hurting. On the way to the ER he was hallucinating and seeing people on the road in front of the car and he grabbed the wheel a few times to avoid hitting these imaginary people. So seeing your father who was totally in control all his life acting in this odd fashion was extremely stressful and I was in survivor mode as I didn’t know what was coming up and he was going to do minute to minute. The 30 minute drive to the hospital ER was the longest drive of my life. Dementia is a challenging disease as the patient will frequently stay up all night and sleep during the day. Also, they may decide to go for a long walk at 3 am thinking they are in some other part of the word.  With a disease like progressive dementia, there is another challenge. Basically when your parent gets a progressive dementia, the parent you knew and loved is gone. It is replaced by a new person who looks just like your old parent but comes with a brand new set of perspective, values and memories. So on top of caregiving you must go through a grieving process just like they had died already while at the same time providing the care that everyone needs.

Another impact was when we left after a visit at the care home, he would always ask “Can I come home today?” It was heartbreaking on a daily basis. I also had to aggregate information in order to make some extremely difficult decisions on whether he should have surgeries or not at his advanced age. These were both terrible decisions to make as in both cases the alternative to not having surgery could be fatal or the surgery itself
could be fatal. What a horrible decision to have to make.
What kinds of support did you have in your caregiving journey?
Support was very limited really. The doctor shortage doesn’t help anybody. Being confronted with a disease without training is kind of like the ridiculousness of having a
baby without any training. Babies don’t come with a manual. Why not? The biggest challenge which drains you emotionally is first not knowing what to do and then wondering if you’re doing the right thing. Not knowing where to go for help is a problem. Also, when there is a problem at 2 am where can you get the help you need? The challenge of caring for someone with severe health challenges also means it’s a 24×7 responsibility and something can go wrong at any time. And if someone is prone to running away there are other challenges. Without the internet, our family would have been totally lost as there are so many factions that require examination and execution.
Complex care is challenging as you don’t know what to do and you often have to help treat the patient as well as the loved ones around him. In my case this meant not only helping my father but providing emotional support with my mother and sister. Often times, other family members have completely diametrically opposed ideas on what the care should be and this makes a bad situation even worse. In addition some family members tend to downplay how sick. Once diagnosed, there can be a problem with wait times to get into a care home and then there is the financial hit that the family takes of 80% of their income going to the government. Also the amount of paperwork involved with all of this is overwhelming. Once he was admitted to a hospital he tried to escape several times so had to have a security guard on the floor to keep him in. He was in a room with 3 other men with dementia. When we went back 6 months later at least one of the men was still in the room. The fear of the unknown is huge for these situations. At hospital a social worker gets involved and then you’re told that there is a lottery for where the person ends up. In our case, my father may have been placed in a home over 30 miles away which would have made it impossible for my Mom to visit regularly. All of a sudden a very normal life is turned upside down for both my Mother and Father.
What helped most?
What helped most was getting educated in order to build an effective care plan which was overwhelming at first. When a loved one is struck with a disease it is extremely challenging to know what to do as the disease is complex and needs care and attention from many sectors. In my case, I had to navigate the physical disease as well as the mental disease and I was trained in neither. There is also the emotion of knowing that your father is alive but is gone so another patient added to the list is yourself. Grieving his death while he is still alive is a very strange experience. In order to get help you have to navigate the health care system which is extremely difficult when it comes to intangible problems like mental health. Extensive research online provided us with several practical educational aids to get educated. In the beginning you don’t even know what questions to ask. Then, drilling deeper I found practical guides on how to deal with dementia patients and specifically how to answer many of the hard questions that they will ask you. This was a great help. But often the patient just won’t cooperate and it really rips at your soul. The mental health system is even more complex to navigate. I can understand how difficult this is for practitioners as the patient appears normal but isn’t.
What hurt?
Nobody including yourself understanding the scope of the illness and how to care for it
effectively and practically. The lack of mental health resources was also a problem. The other challenge is family members blaming you for the wrong care, lack of care or other reasons. Often the other family members are suffering and just need to focus the blame on someone and the person leading the care is often the target of this.
What kind of positive things did you get from caregiving?
Knowing that you were taking care of someone in their darkest hours and that they had taken care of you all your life. It was nice to be able to give back even though the sorrow was often overwhelming. Once I realized that I had to grieve that my father had gone even though he was still alive, things got better. It was like there was a new chapter of the book and I could work on that in a positive way.
What were some of the challenges?
The scope of illness was huge and not knowing where to go for help and once knowing where to go how you could manipulate the system to get what you needed out of it.
Things like wait times were challenging. Psychiatric drugs are also incredibly challenging to the non-healthcare person. Many drugs are used and it is not known at the time if they will make the patient better or worse. Adding to this is that many of the drugs take 3 to 6 weeks to become effective. Side effects can be very dangerous to both the patient and the caregiver.
What sorts of things did you do for yourself to help cope? 
I kept researching looking for the tools and the answers so that I had an idea of what it was I was trying to manage.
Is there anything you needed that could have helped that you didn’t get?
It seems to me that a package of education would be very effective. In my case, there was the emergency, the hospital stay, the ongoing treatment, the acquisition of the care home and then having to help my Mom emotionally and financially. This involved lots of people, lots of forms and lots of worry on how to pay for it all.
As a male, do you feel that you faced any particular challenges or obstacles?
As a male providing care to another male I don’t believe I encountered any major obstacles. That being said, I think that anybody who is a Mom has years of valuable training and experience that many men don’t have as they lack that experience of caring for someone. However, if I rewrote this paper about the care we gave a female member of the family then it would be entirely different as often the health issues can involve personal, physical and hygiene issues that a male would not be able to effectively deliver.
Do you have any advice for men starting out on their caregiving journey?
My only advice would be to try and gather all the practical information about the care of the specific disease as you can and build an effective plan. Getting the right documents from an experienced source is gold. However, one of the problems is that you don’t know what questions to ask if you’re starting from scratch.
I think that finding a caring social worker or care worker will save everyone a lot of headache and heartache.
Anything else you’d like to add? 
I think a good package (education) would be very helpful:
1. A description of the disease
2. Symptoms
a. Memory
b. Thinking and Reasoning
c. Making Judgments and Decisions
d. Planning and Performing Familiar Tasks
e. Changes in Personality and Behaviour
3. Causes
4. Diagnosis
5. Treatment
a. Drugs and Expectations
b. Complications of Drugs
6. Creating a Safe and Supportive Environment
7. Complications
The above covers the patient, but what about the family members impacted by the disease. This can also be very complicated and gut wrenching. A practical guide tailored to the disease would be very useful which might include things like the hourly routines and log books of medicines administered, etc. Also, emergency numbers that can help 24 hours a day. How to get in touch with a social worker for guidance and to find out what assistance might be available would be very valuable as the healthcare world is huge and unknown to someone like myself. Also a practical package of what to do when something happens in the day of the patient or how to conduct a conversation with the patient so you don’t cause extreme stress to him ie. Don’t ask them what day or time it is or what they did today, instead talk about the weather as it is now. I think having access to a flight plan is the most important thing that can be offered in a case like this.
Any other comments? 
This comment is related to when I helped my Mom. If the disease is terminal and the patient wants to stay at home, explore the Hospice options that can provide excellent care at home (my Mom used this – she suffered congestive heart failure) and the nurse and doctor resources were wonderful.