Making the transition to the role of caregiver is especially difficult when the care-recipient is someone who once took care of you. When the loved one is a spouse or a parent, becoming that person’s caregiver brings a burden of grief as well as an increased workload. The combination of these two stresses can cause clashes between the caregiver and patient as each suffers through difficulties associated with changing relationship roles.
During the early days of my mother’s struggle with dementia, she suffered confusion and feelings of failure. She understood that her inability to pay bills and remember appointments was causing inconvenience for those around her, and she felt a deep sense of shame. As a new caregiver I was more likely to scold than to provide comfort and reassurance. Despite Mom’s Alzheimer’s diagnosis, I continued to respond to her as though she was the mother I’d always known.
One of the little frustrations I experienced with Mom was that she struggled to fasten her seat belt, and I had to help her. I didn’t say a word, but Mom had to know from my exasperated sigh and grim expression that she had failed once again. During that time I happened to read an excellent publication entitled “Pocket Reference of Tips and Strategies” by Coach Frank Broyles, whose wife, Barbara, was an Alzheimer patient. When his wife had difficulty fastening her seat belt, Broyles saved her dignity by telling her that all cars have seat belts that fasten differently. This one helpful tip served to be a catalyst for a change in my attitude toward my mother.
When Coach Broyles’ wife was diagnosed with Alzheimer’s, he approached her disease utilizing the same positive approach that made him the winningest coach in Arkansas Razorbacks football history. His “Coach Broyles’ Playbook for Alzheimer’s Caregivers” and the companion pocket reference book that was so helpful to me are available for free download at http://www.alzheimersplaybook.com.
When a loved one is diagnosed with dementia, there must be a release of who that person has been in the past, and acceptance of who they have become. This release is a process and not an event, but with much prayer and a network of support that includes guidance from caregivers such as Coach Frank Broyles, the transition can be made successfully.
Linda’s book, My Mom Has Alzheimer’s: Inspiration and Help for Caregivers, is available at Amazon.com. If you would like a signed copy, contact Linda through her website at http://www.godmomandme.com.
Monday, October 18, 2010
|My son, Jonathan (front) and his friend Nathan. In November Nathan will be married to his fiance, Becca. What better way to celebrate an upcoming marriage than by shooting targets and fishing??! They do have some incomprehensible-to-me male characteristics, but they are Godly young men of whom I'm very proud.|
God's grace has seen me through. I don't feel well physically today but I know from experience that the Lord is going to strengthen me from His deep well of grace as I walk the path before me.
In the midst of all the hoopla this weekend, Mom sat placidly; reading, listening to music, and enjoying a somewhat higher quality and variety of food than usual as I brought her samples of my baking projects. Thankfully, I've moved beyond resentment toward her for lack of support in my labors as she would have given me in the past. Throughout this weekend I felt only gratitude that she had no issues that would have cost me additional labor.
There are times in life when other people place burdens on our shoulders. Sometimes, the freewill choices of those who love us cause them to need our support, sometimes there are accidents or diseases that could not have been avoided no matter what precautions were taken; and once in awhile, as with my cooking and cleaning frenzy of this past weekend, we place ourselves into jeopardy out of good intentions that we end up lacking strength to see through. Whatever the cause--and most times it is probably a combination of reasons--we can find ourselves depleted and feeling taken for granted.
I'm always a little bit surprised that the Lord rushes so quickly to my defense when I'm aware that at least a portion of the discomfort I'm experiencing is self-inflicted. No one forced me to overeat this weekend! But this morning I'm feeling so much gratitude to God for His unmerited grace. Today God's grace brings with it strength that is going to see me through this tired day.
Thank You, Lord!
Tuesday, October 5, 2010
|Mom's window, her personal source of light therapy. The furry lump curled in the dry sink is Kitty, who provides pet therapy.|
|Our house. Mom's addition is on the right, with its own entrance and wheelchair accessible ramp.|
And so, on the few occasions someone has approached me for advice about how to build a "mother-in-law addition," I have recommended southern exposure and a large window. Light therapy is one of the experimental treatments for preventing "sundowning" in Alzheimer's patients. I am convinced that this abundance of light is one of the reasons Mom has done so well.
In the 1920's, my grandparents built a "granny house" for my grandfather's mother. It was a little square building that sat about 20 feet from the main house. I often think of how similar my mother's situation is to her grandmother's, albeit with a few more amenities. Mom's living quarters are separate from the rest of the house, and so we have our privacy and yet are close by. She rarely comes into our part of the house, mostly because she is so much more comfortable in familiar surroundings, but also because we have cultivated the feeling that she is in her own apartment. She has trouble remembering who lives in "the other part," as she calls it, and has learned that we respond to her as though she were Goldilocks checking out someone else's accomodations if she wanders into our part without our knocking first.
Other factors that I believe have helped Mom to maintain her level of functioning for the past six years:
- Prescription Medication: Aricept, Namenda, and an antidepressant
- OTC supplements: Fish oil, a decongestant, and a multivitamin
- Music, most often the "easy listening" channel on DISH TV, but sometimes Christian music or jazz.
- Books--favorites include the Little House books by Laura Ingalls Wilder and, always, her Bible.
- Spiral notebooks and an abundant supply of pens.
- A refrigerator full of diet coke and a carafe full of coffee; caffeine has been shown to improve cognitive function
- Her own furnishings and photos surround her, most of which pre-date her Alzheimer's by many years so that she remembers them and is comforted
- A pet that provides companionship
- Frequent visits from great grandson Daniel, age 2
- My husband and I are in and out an average of 6 times a day with meals and/or meds
- Friend and respite caregiver Sandy visits twice a week
- Handicapped accessible shower and grab bars in the bathroom add to safety and convenience when I bathe Mom or when she uses the bathroom
Our solution would certainly not be right for everyone. Mom does not wander, has never been combative; and although she sometimes discusses my negative personality characteristics with the cat, she is rarely openly rude. She is still cognizant enough of what we do for her to speak words of gratitude. This set of characteristics makes her somewhat rare, as far as Alzheimer patients go. But I like to think that at least a portion of her easygoing ways has to do with the fact that she feels content and secure.
Any decision that impacts a loved one's living situation must be surrounded with careful thought and much prayer. Every situation is unique. If you are struggling to find solutions for a loved one who has dementia, my prayers are with you.
Friday, October 1, 2010
|My son-in-law and grandson|
It's interesting and a little bit shameful that I am so suspicious of God's intentions toward me.
It's no excuse that I am stuck on a finite timeline, imprisoned by a body suit, and perceive the world through physical senses; because the Lord has explained that what is really real (eternal) is spiritual and not physical.
Well, that sounded a little bit convoluted, didn't it? I'm sorry.
Let me explain: we walk by faith and not by sight, and when we take our eyes off the Lord we find ourselves walking blind.
OK, I admit it. I've taken my eyes off the Lord and have fallen into fear. Once again I'm struggling with fear of my mother's death, and that fear brings with it dread and depression over the fact of my own mortality. And yet, at the very same time Mom is fading away from me due to her Alzheimer's disease, the Lord has touched my heart with the knowledge that my future holds blessings.
This morning I felt the Lord speaking these words of comfort to me:
As I contemplated this assurance, a memory from over 25 years ago came to mind.Receive my assurance that nothing is amiss. No health crisis looms, no trial awaits; this time of preparation is not meant to prepare you for distress but for blessing. Blessings require preparation as well.
It was Christmas morning and our three-year-old daughter, Mindy, had been awakened from a sound sleep and instructed to come downstairs to see what Santa had left for her. I was at the foot of the steps, calling her name; camcorder in hand. Mindy slowly entered the room and cast an anxious look around her at a space made unfamiliar by stacks of gifts, which included a huge rocking horse wearing a bow on its head. Overwhelmed, she sat down on the bottom step and began to cry.
If our girl had been awakened gently and given forewarning about the abundance of gifts that awaited her, she would have been been prepared for the blessing of Christmas morning. The abrupt transition from sleep to being confronted with a stack of presents was overwhelming for her.
Sometimes the Lord awakens us gently by providing a time of transition such as the one I'm so suspiciously inhabiting now, as my mother fades from view. During times such as these, He does not need us to train for battle so much as He needs us to be well rested so that the blessings He has prepared for us can be enjoyed to the fullest extent.
Transition times can include grief. The promise that blessings await does not lessen the terrible grief of losing my mother, but it does give me hope for the future.
"In the bulb, there is a flower;You can listen to this beautiful hymn here.
In the seed an apple tree;
"In cocoons, a hidden promise:
Butterflies will soon be free!
In the cold and snow of winter
There's a spring that waits to be,
Unrevealed until its season,
Something God alone can see."
from Hymn of Promise by Natalie Sleeth: Copyright © 1986 Hope Publishing Company