Wednesday, November 3, 2010
In her book Linda A. Born wants her mom to take care of her as in the past, but humbly accepts her new role as the caregiver for the mother who has Alzheimer’s. She writes at first of resentment and anger, and then discovers compassion and the Lord’s provision in her walk through her caregiver ministry. I just held on to every word as she has a parallel walk as I have. I would recommend her journey for anyone accepting the suffering as a caregiver as she gently and profoundly takes you through the process.
Her story is both similar and different from mine. I have also learned from Linda's book.
Similarities. Her mother and my husband are both able to feel and to love. I am putting his for her in this quote. “[His] Alzheimer’s had not robber [him] of the ability to love me, and [his] love was a blessing to me still; but [he] could no longer be a dependable counselor or confidante.” (p. 184) I remember when I wrote about that in an earlier blog--about how hard it is for my husband to not remember things about me.
Linda writes “It is actually a great comfort to recognize that our loved ones who suffer dementia are not aware of the pathos of their circumstances.” (p. 23) Yes, Linda, it is great they don’t realize. My husband does not read books or research the Internet now about Alzheimer's as I do. It would upset him, and it has upset me. He is just happy being retired at this point.
I began distancing myself from my husband like she did from her mother. My justification for the earlier distance was that DH didn't understand my logic and talk. However I learned that I should not do this; others in his life might distance themselves, but not me. He will be lonely if I do that.
I am in my marriage for better, for worse, for sickness and health and my husband is also. How I loved when he was still working and when public school teaching became unbearable. DH said it was okay to retire from public school teaching. He has always been in it for me for better and for worse. That is his commitment to me and my commitment to him.
Linda mentions the photo albums that were important to her mother and my husband wants me to create photo albums for him. Hope to have his done for his Christmas present.
At first got mad with my husband over his laziness. I learned like Linda with her mother, to give that up. Linda writes about “possible scenarios of doom” (p. 210) and I have cried out to God also for these possible senarious.
Linda also mentions problems with over-eating. When I first was dealing with my husband’s dementia, I put on weight—not a smart thing to do and now at my age it is so much harder to lose weight.
Differences. Where Linda has become angry, I have become depressed. I do see other blogging caregivers upset. Both Linda and I ran to the Lord for help, however. She is philosophical when she writes, "Life is full of transitions, and most of us don’t like this fact.” (p. 27)
She is mad that her mom was leaving her through this slow death. I have lost both parents and my first husband—but not by the slow painful death. “I suffered all the negative emotions of anger, resentment, fear, and doubt; and about the only thing I did right was to continue to cry out to the Lord. . . .my anger was not reserved for my mother. No one I love was safe from my tirade of words.” (pp. 63-64) “I was afraid of being left alone in the world.” (p. 203) I had been alone as a widow in the past, and feel with friends I will be able to handle this. I am however afraid of finances and my husband's deterioration due to Alzheimer's. Heaven awaits him as well as me. This life is not all. I know Linda recognizes that too, but she doesn't dwell on it as much as the loss of her mother.
Insights from Linda
• Be the facilitator. "This ability to separate the disease process from the Mother I knew and loved was a crucial shift in my thinking. Once I gained an acceptance of the fact that her aberrant behaviors were disease related, I no longer viewed myself as the long-suffering caregiver who was putting up with her mother’s difficult behaviors. I was to be a facilitator, not a dictator. I became a fellow soldier with my mother in the battle against Alzheimer’s. I was on her side."(p. 100) Don’t be patronizing or treat my husband like a child I realized.
• Linda points out the wait time between diagnosis and death and calls for the patience of release, the patience of acceptance, the patience of faith, the patience of hope and the patience of love. (p. 106) I will go back to that page often.
• “I need to discover the difference between casting my cares on Jesus and casting blame on others. . . . I needed to ask God’s forgiveness for the harm I’d done to others while I was preoccupied with a struggle against my own burdens.” (p 121-2) Oh yes, Linda, I have been hurt by thinking others owed more attention to our situation. Instead I have to cast my cares on the Lord and flee to him.
• Linda’s mom used to have many friends, but now it was just Linda. However my husband still has friends and new friends such as Jim. We have to keep up these friendships while we can.
• “The Lord was the one who had placed the job title, 'Alzheimer’s Caregiver,' after my name," writes Linda on p. 201.
• “I must not lapse to self-pity, and I must not look at my own sacrifice. There is nothing I can surrender to the Lord that will not spring forth new life in Him.” ( p. 243) Wonderful insight.
• “If you find yourself bound with resentment from the feeling that you have been appointed to be the center of your loved one’s universe, let yourself off the hook. God is the Provider for your loved one, and He will provide for you too.” (p. 163). Linda, I am going to memorize these words.
Thanks so much, Linda, for providing this rich fellowship for me. I wrote a review on Amazon and another site and will continue to look for your posts.