The Caregiver’s Journey . [Montrose Monitor, May 31, 2016]
A few years ago Kathryn Burke found herself in a position she hadn’t planned on and didn’t want. But when her husband James (Burke) was diagnosed with ALS and Alzheimer’s, there she was.
Since that time they have moved from Ridgway to Montrose, to be closer to doctors and hospitals. Burke’s diagnosis has changed from ALS to a neuropathy condition.
Kathryn has written an excellent guidebook for anyone finding themselves in a new position of caregiver with detailed information on everything from attitude, tools needed, and organizing a team to help.
Entitled the “Caregiver’s Journey, Navigating the Path,” it diagrams a path which is similar to that of a recent mourner. Denial climbs down the long and winding path to Acceptance.
She discusses the financial aspects of being a caregiver including private pay, private insurance, Medicare, Medicaid, Veteran’s Benefit, gifts and funds.
This book is so detailed, caregivers should not need any other source book. There is a reference and resource section where the reader can go deeper with their questions.
Kathryn is available for speaking engagements in Western Colorado on Caregiving. You can find her current schedule for speaking and booksigning at http://caregiver-journey.com/events
To order the book go the http://www.sanjuanpub.com/bookstore. Call 729-1118 on where to pick up the book.
Here is an excerpt called “Checkpoint Anxiety”*
This is not a surprising checkpoint. When you’ve finally realized what you are dealing with, and can see the challenges that lie ahead, it’s natural to worry about how to handle them. For many of us who are trying to carry on a full-time job and be a full-time Caregiver at the same time, money tops the list. Money worries hang over your head like a dark clouds: “How do I pay for this?” and “How do I pay our basic bills?” Right behind that comes the ‘capability’ question: “Can I do this?”
Unless you have had medical training, and probably a lot of psychology courses as well, you will need to educate yourself on how to provide for physical and mental needs of your Caree.
At the same time, you have to learn how to care for yourself. Anxiety causes stress. Stress causes lack of sleep, poor eating habits, withdrawal from social contacts, and ongoing and constant fatigue. Ongoing anxiety will make the Caregiver ill. Remember the flight attendant’s advice. “Put on your own oxygen mask first, so you will be able to help others.”
My friend Andy learned this lesson the hard way. Andy’s wife, Ruth, began to forget things—her glasses, keys, shoes, grocery list. None of this was too disturbing, just annoying. Then she started wandering around the neighborhood. Friends would bring Ruth home, and she would seem fine for a few days then she’d wander off again, and not always on foot. Several times she got in her car to go run an errand, forgot where she was going and why. Once, she would up over 60 miles away in a neighboring town.
Andy was a peace office and about this time he was working four tens which meant leaving Ruth alone for long periods of time. In his absence her behavior became more erratic. Once she walked off and left a pan of food burning on the stove and nearly set fire to the house.
Finally, Andy had to admit that he would need to care for Ruth full time. He had some experience with this, his mother had suffered from Alzheimer’s. Andy took a part-time job, again leaving Ruth alone, but this time for shorter periods of time. He worked a few hours during the day, then kept an eye on her all night in case she might get up and wander off. Which she did from time to time, so Andy was not getting enough sleep.
Anxiety was taking its toll. Andy was exhausted, losing weight, getting headaches, dizzy from sleep deprivation. Then one day he collapsed. Ruth was cognizant enough to call an ambulance. They both would up in a care facility, roommates again, although now Ruth wasn’t sure who Andy was.
Andy gave it one last shot with Ruth at home, but they were well beyond that. So Ruth went back to a memory care facility. Fortunately, now she qualifies for Medicare, and so did Andy. Andy still works part-time, but on a very limited basis. The prolonged stress and resultant illness left him unable to care for either of them as much as he would like to.
*edited for space