Providing care weighs heavily on family members

Brenda's father receives a Veteran's 75th Anniversary Award from Hastings Highlands Mayor Vivian Bloom.

Brenda’s father receives a Veteran’s 75th Anniversary Award from Hastings Highlands Mayor Vivian Bloom.

When the Town of Bancroft passed a resolution declaring January as Alzheimer’s Awareness Month they urged “all citizens of our community to become more aware and educated concerning the far-reaching effects of Alzheimer’s disease and related dementia.” An excellent step to take, the Town could have easily substituted words like life-altering, tragic, devastating or exhausting in relation to the effects of this confounding diagnosis.

Education and awareness are desperately needed as this disease hits more and more of our friends, families and neighbours each year.

For those in the midst of caring for a loved one with the diagnosis, the recognition by council is another small piece of hope and some inspiration to keep moving forward.

In the past years awareness campaigns have focused on removing the stigma attached to the disease and getting an early diagnosis – this year we focus on the care partners. The spouses, children and friends who live the far-reaching effects of the disease and who are forced to cobble-together care plans and get creative with the exceptionally limited resources offered in our rural community.

Take Brenda Grant, for example. She’s been caring for her father for six years in his home in Lake St. Peter. She has a fierce love for her father, a World War II vet. This love and compassion is why she continues to try to care for him at home. This has a huge cost and is taking a serious toll on Brenda.

“We are house bound,” she explains over a quick cup of tea in the Hospital’s Corner Café.

Brenda’s father is enjoying a few hours at the VON Day Program a floor below. It’s a program designed to provide respite to caregivers but that’s not Brenda’s reality.

To get her father to the program she has to drive 45 minutes each way. Then for the few hours that he is at the program, she has to kill time in Bancroft.

“I know every detail of every store in this town,” Brenda laughs.

But like many who are providing full-time care for a loved one, Brenda just keeps going. She has no other options.

She moved-up to Lake St. Peter and because of the demands of the disease, she is not able to work like she used to. She manages a few clients a week, offering relaxation and healing as a reflexologist but Brenda use to work full-time. She used to have a good income and now she’s just scraping by. Savings are being used and she can’t face the idea of placing her father in a long term care facility.

Things used to be a bit better, Brenda explains. She used to have care provided in the home on a more regular basis. This let her get out, work, decompress and live her own life.

But then the service was suddenly cut.

“Now we get eight hours once a month,” Brenda sighs.

Brenda admits to being exhausted at the end of each day. She has no time for herself and it’s taking a toll but still, she digs deep for something positive to say.

“You always find a way to put a smile on your face,” she says. “I don’t want to whine.”

But Brenda does want to advocate by sharing her story. She wants things to change because she is capable, intelligent, strong and resourceful but this is all too much for one person to manage. And that’s the issue – there is no consistent plan or set of resources for someone with the diagnosis so it’s up to caregivers, friends and family to find their way through the maze of this terminal disease.

“I have to listen to my Dad calling himself ‘old and stupid,’ and it is heartbreaking,” she says. “I provide all the care I can but it’s still not enough and I’m under a huge amount of pressure to put him in a home. I have lost 30 hours of care each month and people need to know how tough this is. And what happens to me when this is over and I try to return to work full-time?”

Brenda’s situation is sadly the norm in our rural community. Once a diagnosis is made it is often up to the family to navigate the system, to find resources – financial and emotional – to keep going. Placement in a nursing home is a possibility but not always something family members are ready or willing to do.

So the struggle continues.

“We’re all getting better at understanding what this disease is,” Brenda explains. “We’re not good at understanding the challenges of caring for someone with this disease.”

Brenda explains that there is a lack of programming for her father, no transitional housing and any support that she gets in the home can be cancelled at a moment’s notice.

“This is isolating, draining, I am always scrambling and I worry what my father is going through emotionally,” Brenda reluctantly admits.

And to be clear, she is not complaining. Either because she is too exhausted or because she thinks it will fall on deaf ears.

Her choices are clear – pull her father, a veteran, out of his own beloved home and move him to a long term care facility or make do with the minimal resources being offered.

These are the conversations that local Alzheimer’s Education Coordinator Sarah Krieger has on a regular basis. It’s nothing new yet each family is on a unique path. All are at different stages and all have different challenges.

Some find peace. Some don’t.

In all cases though, Krieger works tirelessly, also with limited resources, to support those who are doing the supporting.

For this, Brenda Grant is grateful.

The reality though is that this disease does have far-reaching effects; effects that will continue to devastate families across our region and as friends, neighbours and community members, it’s time to understand the effects of this challenging diagnosis.

On Saturday Jan. 31, the 5th Annual North Hastings Walk for Memories will be hosted at the North Hastings High School from 9 – 1pm. The event is an opportunity to raise awareness, not only for those with the diagnosis but also for those who provide care to their loved ones. This is the biggest fundraising event for our local Alzheimer’s Society and all dollars raised stay in North Hastings.

With your support, no one in North Hastings will face Alzheimer’s Disease alone.

 

Editors note: Shortly after publication we received word that home care hours for Brenda’s father have been cut once again. She is devastated.

3 thoughts on “Providing care weighs heavily on family members

  1. Mark Bonokoski

    A well-written and timely piece. But the tip of the iceberg is barely showing. Health care can no longer be cut back without dire results.

  2. bunny chalk

    Thank you for this wonderful article Barb. People also need to remember that those with dementias still have feelings. Often they are ignored because they are quiet and I think people are afraid of what to say. As a caregiver I see this happen often. Our loved ones are human beings who need the same love, care, attention and respect that we all crave. Sarah does an exceptional job in Bancroft. We moved to a town more than six times the size of Bancroft to be closer to family and their assistance. I was surprised to learn one must drive 45 min. to one hour for support groups and courses and caregiver relaxing times. Too close to the GTA they say. Trying to start a group here is proving futile. I do what I can and must and we carry on trying to laugh as much as we can. But, as Brenda indicated, it is very stressful. All the best to Bancoft in their endeavours with dementia.

  3. Vivian Bloom

    In these days of homecare cutbacks, it is time for communities to try and come together in some way to offer even a few hours of friendly visiting, or a bit of help of an hour or two of cleaning or just possibly sitting with the family member for some extra respite time at home.. I am sure, we have enough wonderful compassionate folks in our area.. If there was some way to register with Sarah at the local Alzheimer’s to offer a few hours per week of friendly visiting or help to families and folks like Brenda to be hooked up with someone in your local area.. I would hope we would have it in our hearts and find time for these struggling families. I know personally so many who have exhausted themselves and their finances trying to keep loved ones out of being institutionalized for as long as they can. The government should be providing more help, not LESS as these people take the pressure of already overcrowded nursing homes.. Is there and hope of our local folks who have a bit of time to come together to help fill this need, your thoughts Sarah (and Barb) if we could initiate hooking people up or do you already offer something along this line?

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