Kathy, 71, has been a dedicated caregiver to her husband Barry for the past 10 years. Barry has an Acquired Brain Injury and requires constant care and supervision. This is Kathy's emotional story of using respite care for the first time. In her own words, she shares practical tips on what to expect and how to prepare for respite care.
KATHY'S RESPITE JOURNEY
I have been taking care of my hubby Barry for over 10 years, and for me, it has become a way of life… my chosen life. It must be twice as hard if caregiving was not your own decision.
Barry's sudden and temporary death was caused by lack of electrolytes as a result of stomach flu. He had no potassium or magnesium left in his body and the doctors thought he'd suffered a heart attack. Once the right medication was given, his heart started again but too much time had passed. This caused Barry to have an Acquired Brain Injury (ABI).
Originally, I was told by the doctors that Barry should move into a long-term care facility and I should get on with my life! I guess I must have looked a lot younger in those days, as they had already written him off at 61.
Barry spent 3½ months in hospital before he finally came home.
How do I feel about "respite"?
I speak as someone who's currently on a big time burnout when I say that respite is an absolute necessity for caregivers! In a nutshell, respite care gives you a temporary break from caregiving while your loved one is cared for in a safe environment.
Respite is good for both the person who is in need of care, and the person giving care. One of the selling features that I explain to hubby is, "won't it be nice to have someone other than me telling you what to do?"
But there is also an emotional side with many mixed feelings. We have been married for 50 years, so him being away for a few days are also a lonesome time for me. I think that I am as dependent on him as he is on me. In the long run though, without respite there would be more crazy people like myself on the loose!
Before Barry returned home, our children thought that they would be able to take him for a weekend every other month or so. Luckily the
Vista Centre in Ottawa connected us with
Pathways to Independence—a program and residence for people with Acquired Brain Injury.
Due to financial cutbacks in the health system, the Pathways program eventually became full and Barry's respite bed was no longer available. Since then, the
Brain Injury Association of the Ottawa Valley's Peer Support Group – and the wonderful folks who run and attend the group – have been a saving grace for me. I would have never survived without their caring support.
Anxiety, doubt, guilt...
For me, respite is a hard sell. I think all caregivers need a break from time to time, but it is still stressful—you never stop worrying about your loved one and how they are doing.
What kind of situation am I putting my hubby in? It is very hard to hand over someone you love and understand to strangers. I feel that nobody can take care of Barry as well as I can.
Will someone teach him another bad habit? A caregiver once taught Barry how to "spar." She said that he liked to box. You do not teach someone with brain injury to make a fist! This has damaged Barry's behavioural assessment.
Will I get a call to come pick him up? About four years ago, hubby had been at a nursing home three times. The fourth time he was there he was fine for the first three days. Then I left to go to the States, and they called me on Sunday, Monday, and Tuesday and told me that I was going to have to pay someone to watch him, as he was being inappropriate.
GETTING READY FOR RESPITE: Planning and preparation
The first time I prepared to send Barry to respite I was so thankful that I forgot lots of important things.
First of all, when asking for respite care from the CCAC you should already have dates in mind. Once you are given the dates, write them down and be sure that they are confirmed. Check with the respite facility to see if they have the same dates. You do not want to be disappointed!
Special instructions regarding the care of your loved one must also be written down and shared with staff at the facility. Here are a few other tips I've learned along the way:
- Bring all prescription medications. Be sure to specify if there are to be "no substitutes". Make sure to double-check what was sent from the pharmacist
- If medications are taken at a special time or every other day, I provide a calendar and indicate on which day they should be taken (e.g. every other day)
- You must list each article that your loved one brings with them (for example, 1 pair of jeans—include brand name, 2 sweaters—1 blue, 1 brown, etc.)
- All clothing and belongings must have his or her name on it
- Don't forget toiletries and a razor, including cord and charging station if using electric
- Do not bring anything that cannot be replaced!
Sadly, Kathy's husband Barry passed away in November 2015. Kathy hopes that her respite story will continue to benefit and provide insight to other caregivers in the Champlain region.