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Reflections on My Journey through Alzheimer’s
I am trying to write about and share my current journey with Alzheimer’s in the hope that it might help others.
Most people live mentally in the safety of the past or the freedom of the present moment. Often this limits recognition of the need to accept change, particularly the kind that comes with old age. When our bodies or minds betray us, we cling to our familiar surroundings as safe places because relocating is frightening.
But I personally have always focused on both the positive and negative possibilities of the future. When at 88 I was diagnosed with Alzheimer’s, I knew from my mother’s fourteen-years with it that I might soon require caregivers. I don’t have enough money for a Nursing Home. After asking God to tell me when I needed to stop driving, I had two altercations with stationary objects. I took that as the answer that I needed to stop driving. Shortly afterward I started living every other three months with two of my children and their spouses, which gives each couple breaks and I help some with groceries. But this way the money I have won’t continue to be used up by rent and utilities if they ever need the help of paid caregivers. And at this point I’m only a mild challenge.
Many friends don’t recognize that I have Alzheimer’s because I’m only with them for short times and my age group is mostly a bit forgetful anyway. And I’m still aware enough to make lists and keep a calendar with me. Most of my forgetting involves words and names. Thanks to my computer and Google, I can still write, though it is much more tedious. Probably because of my mother’s Alzheimer’s, I recognized the beginning symptoms and had a Nuclear MRI that showed that there were areas of my brain not getting enough blood. I’m now 89, but my doctors say I am very healthy and may live a lot longer. So, I am getting infusion treatments that may slow down the losses. I go to Twelve Stones Infusion Centers in both Nashville and Memphis. These are some of the best hours in my old age life. The personnel are not only efficient and kind, but hilariously funny and fun. I look forward to this hour every two weeks. And they have uplifting scripture quotes all over the walls and offers for prayer either with or for you. And in the information handout they stress that all genders and combinations are equally welcome. Also to ask if help is needed for financing. Since I have four generations of gays and lesbians and one trans in my family that I know about. I see this as a plus.
I’m consider myself blessed to be one of the 30 % of those with Alzheimer’s who are aware of having it. I think that helps on both sides, mine and my family’s. But I also admit that I would never have made it this far in life without accepting the unconditional love of God fleshed out in Jesus. My mom didn’t know she was losing it mentally. She once said, “Am I doing something wrong? I can tell by your face that I’m upsetting you.” There have been a lot of hard challenges in my life and I was losing it in many ways in the early easier times before grace became a conscious part of my journey. But mom’s slow dying by inches for fourteen years tested my faith more than anything else. A few days after her funeral I was waiting in my car for a friend and mentally yelling at God in anguish, “WHY? WHY! WHY!” I wiped away tears and tried to get a grip by going into a small shop there. The first thing that jumped off a stand at me was a card with big letters in bright colors that said, “EARTH HAS NO SORROW THAT HEAVEN CANNOT HEAL!
Wonderfully, in my old age, I have become much more able to live in the present moment. And one of my best gifts is being able to laugh at myself, so now I get to laugh a lot more. A sense of humor is definitely a survival skill for old age. Playing a word form of Charades when I forget something can be fun with family.
Perhaps the biggest blessing is that in the past I have received grace to grow stronger and more loving most often through the hard times. So, I pray for grace to somehow make it through this at least being aware enough to be kind.
Please feel free to pray for that.
The Challenges of Aging
I have been experiencing increasing issues with memory. So far, none dangerous, mostly losing names and words. But it is quickly becoming alarming. Quite a few of my friends who are even ten years younger than I am are also having to cope with loss of memory issues.
When I was recently talking to my primary care doctor after passing a very short memory test that said I was average for people my age with a college degree, he said that there is new help for dementia if caught early enough. But Vanderbilt is the only hospital in our area to have the type of MRI equipment to accurately measure white matter brain shrinkage. And the new treatments are only effective in the early stages. Getting the test has to be done through a neurologist, so I have an appointment soon.
Interestingly, I also met a man at the doctor’s office who is planning to start a group that works with these issues, both with those having them and those who are caregivers. Unfortunately, he had been injured in an accident and is in St. Thomas physical therapy hospital right now. But he will let me know when he gets the program going.
At this point in my journey, I could still be some help with it and perhaps get help from it.
I’ve have spent quite a bit of time with people with Alzheimer’s and dementia. My mother died by inches over fourteen years with Alzheimer’s. Afterward I spent several years taking a friend out to lunch, to places like Cheekwood and even shopping when she was in a nursing home with dementia. She did not remember most of her life, even often being anxious because she thought she needed to go to her mother’s funeral. She spoke very little. But eventually she went to live with a caregiver next to her daughter’s house and began to go back to playing and winning at Tournament Bridge! She read voraciously and was able to converse again. When I was visiting her in the nursing home I began to also give a devotional and took musician friends to play the piano or guitar. While I was giving my devotional all the people looked comatose, but when we started playing the music for the old hymns they resurrected and sang every word from memory.
I am now visiting another friend who is at a nursing home suffering from dementia. I have seen her regain a lot of mental acuity through help taking up her painting again and spending time with a volunteer who works with several people. Recently, I was sick for several months while the volunteer was having to deal with family issues and she has lost ground again. I also noticed that when she doesn’t have visitors, she looks unkempt and ill. I think it is very important to have someone from outside visiting frequently enough that the caregivers don’t neglect them.
I admit that when my doctor said that I do not have any signs of dangerous health issues at eighty-seven so probably will live quite a bit longer, I got depressed. I do not want to outlive my somewhat scatty, but still useful brain!
The program for dementia patients and caregivers will be at Cumberland Presbyterian Church in Dickson. I have been attending First Presbyterian for about twenty-five years. It is very liberal politically and growing phenomenally from people leaving the conservative churches. But we are currently understandably focused on younger people with children and those with issues the conservatives are uncomfortable with.
I am becoming aware that liberals take up big issues like gays, the homeless, and the environment. But the conservatives are focused on those that touch people they know and understand. Perhaps luckily for me, I may be able to be a part of both worlds.
My age group under a conservative pastor at First Presbyterian took an active part in caring for those older than us in past years. We called them, visited them, took them not only to doctors, but also shopping and out to lunch. We even took turns staying with them in the hospital when they were dying and helping them stay mentally active when in rehab and taking them home and helping them get organized when they got home. We also took over the leadership in our women’s group. At this point our group is doing sort of a one on one caregiving with each other. But more and more we all are needing some help and our women’s group needs younger leadership to help us stay a functioning helpful group with a ministry to those less fortunate.
I realize that our younger career women, who are now finally retired, are enjoying the hard-earned delights of free time. But the care of the elderly is becoming a growing problem since medical science is still far better at keeping us alive than alert and physically functional. And while Jesus said to take care of the poor, he included widows. I don’t know whether the women outlived the men in Jesus’ day, but today it’s a reality. While our culture isn’t AS hard for older woman living alone, it more or less simply writes us off.
I am hoping to be an active part of both helping and being helped soon by the new program at the beautiful Cumberland Presbyterian Church that my husband designed. So please pray for the recovery of the man who will be starting the program. His name is Tommy.