This is the second in a five part series, helping Care Partners/Caregivers of loved ones living with dementia, strategize ways to meet the needs of the family unit collectively. (I use the terms care partners and caregivers interchangeably, but some folks feel more comfortable with one term vs the other.)
I think the hardest thing a caregiver can do in many circumstances is conceding that they need time for self-care. Many spouses or family members entrusted to care for someone with advancing dementia, spend much of the day keeping the household operating, and meeting the needs of a loved one.
At some point everyone reaches a moment of sheer and utter exhaustion, where a trigger (even a small one, like a broken dish) catapults into a major catastrophe. Now, that's fatigue talking. Time to rethink priorities and get back on track.
My Experience with burn out...
I think the best gift I ever received was a handful of sessions with a personal trainer. My work/life balance was always at the tipping point, and my family recognized it. The benefits in the long-term, most certainly outweighed the costs.
I was started on a mission to improve my overall well-being and health, through exercise and food intake awareness. Because of the costs involved, and my personality type, I stuck to the regime for the following 6 weeks/6 sessions. I refused to waste the money spent on the service! This transition created somewhat of a behavior modification that continues with me. I now allow myself personal time.
So before the cloud of exhaustion blurs the sun from your homescape, let's start problem solving ways to engage in self care.
- Allow yourself time to do what you love. This may mean finding help to provide care in the home where needed.
Care Negotiation: I have met couples who have taken turns spending time with each other’s spouses, as well as their own, to allow for one care partner to have a private outing. Pay it forward, and reciprocate.
- Programs offered by the Alzheimer’s Society may have a spousal component. Check to see if "Minds in Motion", is offered in your area. This is a combination of mental and physical programming where couples socialize and attend together. You may just meet your support system counterpart, and at the very least have fun. What other services are offered?
- Find out who in your troops (see blog 1) may have some spare time to help. Book Doctor, Dentist and other regular appointments well in advance, scheduling your replacement at the same time. Can a few hours one day a week be set aside exclusively for the Caregiver, where the troops visit individually, allowing for some respite?
- Is your loved one ready for an Adult Day Program? Many cities have programs for individuals who require some basic care and supervision to attend on a weekly (+) basis. There is a cost, but many provide transportation and a predictable break for both members of the couple. This is the caregiver’s time to catch up, enjoy friends, visit the hair/barber shop etc. The loved one living with dementia has an outing with meaningful activities, and the opportunity for socialization.
- Some organizations offer care services in the form of companions. Is it time to consider this? Check out the first blog for tips to enhance a visit for someone new to your family. (Does the organization conduct police criminal checks and provide education to all hires?)
- Is overnight respite affordable and applicable? I have visited with families who engage this service when dementia is progressing, and additional care support is needed. There is a cost, qualifiers, and advanced booking, but the respite relief is a chance to recharge. Local Long-Term care homes may offer this service.
- Are there free care hours for respite available as offered by your local health care organization? In Ontario the CCAC is able to offer three hours of respite relief weekly to families meeting the criteria, when an individual cannot be left alone.
- If you live in a building where there is a common room, are other couples looking for a place to meet and have coffee?
- is there a local church, library, social organization etc. that offers couple's groups for meetings and socialization?
How about keeping a loved one busy at home with meaningful activities to allow for some personal space?
- Did your loved one work in an office? Would it then be practical to use a spare room and set up an office type work space, to set the tone for familiarity and activity? This would be a place for one to putter in, while organizing, reading, sorting etc., providing an outlet for energy in an environment that is familiar and engaging.
- One caregiver advised that her husband spent hours daily organizing CD's, placing them in cases, packaging them and shelving the finished product. The job never quite got finished, but everyday was an adventure in sorting and rearranging. He felt useful and needed.
What about old friends and couple's outings?
Sometimes care partners report that their couple's dates with others dwindle, as their loved one experiences more challenges with changes in mood and behaviour, relating to dementia.
There will always be folks that remain close and constant friends throughout your days, and others who disappear when the going gets tough. Although disappointing this is not unusual.
Try to build your own meaningful friendships that can double as a listening ear, a diversion and a break from daily activity. If the gals or lads invite you to weekly cards, it may not be such a bad idea to enjoy an outing where the chief goal is laughter.
The most common statement I hear from Caregivers who are seeking some alone time, is guilt in leaving their loved one under the care of another. Perhaps we can rephrase this, "You are not seeking alone time to create distance, but rather seeking personal time to build caregiving capacity."
Renewing one's energy through individual pursuits, allows for a refreshed perspective when living as a daily caregiver. As you give the gift of love to another, may you save a smidgen for yourself!
Watch for our next Blog #3...Get Organized!