Dementia Journal — August 8, 2018

One of the garden statues Mom brought here from her garden in New Orleans 23 years ago.

 

“I feel like I’m in a Heavenly area and I’m taking you with me.”

“God, will you please take care of me and let me be normal.”

“I’m thanking God that my memory is coming back and that I’ll be normal again.”

 

 

Moms is entering a new stage in her ongoing progression with dementia and it’s causing me both concern and consternation. And yet, despite the terrible nature of this disease I see signs of hope and lucidity in her pronouncements each evening as we sit on the sofa after the last home health aide has left. I feel definitely like I’m entering uncharted waters with her. Her personality and mod seem to have stabilzed, and now she is noticeably preparing for the end.

“I feel like I’m in a heavenly area and I’m taking you with me,” she told me the other night. And a couple of evenings before that, “Are we in Heaven?” (When I told someone about this I said I must be doing something right!)

She’ll often say she’s dying when she feels any strange mental anxiety or even physical symptom of “something.” This is what I’m surmising, anyway. I know there’s nothing
physiologically wrong, as far as I can tell based on her vitals and blood sugar readings that day. But there’s something going on that I can’t possibly be aware of. Whereas you and I, if we are not afflicted by severe memory impairment, might try to intellectualize or otherwise articulate our deepest, strongest thoughts and emotions when we’re in a very pensive or philosophical state of mind, Mom does this same thing in her own way and despite the fog of dementia.

How do I respond to these questions? Unfortunately they are repeated so often that I have become a bit numb, if you will (as a coping mechanism). “Am living?” “Yes, Mom.” “Am I dying?” “No.” Where is B__? (The sister she was closest to). “In Heaven with R__ and F__ (her older sisters) and your mama and daddy.”

A few hours ago, she woke up and I heard her on the monitor calling out the names of her sisters, one by one. Then, “Mama, Daddy!” This was about 1:30 in the morning and as usual I was awake and lying in bed reading, thinkinking and trying to savor the only real peace I have during the day when I’m not as concerned about Mom’s state of mind or physical condition as when she with one of the Caregiver/aides. I try to relax upstairs but I’m always on guard or alert to any potential problems or mood changes. Most of the time everything’s fine, but when something goes awry…whoa, I’m needed downstairs in a hurry. The aides know Mom pretty well by now and generally they can handle most situations. However, this doesn’t lesson the low level of anxiety I always feel, like decor perhaps for brief moments when I’m driving out to the park for a walk. Only then do I get a small taste of what freedom is like.

Anyway, getting back to what I was saying, as I heard her talking via the monitor, I kept hoping it was just a brief waking moment and she’d get back to sleep. But it persisted. “Where am I?” “Whose home is this?” “Where is B__ sleeping?” Finally, I had to go downstairs and calm her down, rub her hands and reassure her that I was here and there was nothing to worry about. “Who are you?” She asked. “I’m your son, F__.” I had to go through several repetitions of this before quietly exiting her bedroom and going back upstairs. Quiet again. Most nights she sleeps straight through, thankfully, but tonight was an exception.

As I said earlier she has been more lucid lately and I’m not sure why this is happening in contrast to the more common confusion and questions that often make little sense. But lately I’ve been astonished by statements such as this last night as I was trying to write an email: “Do you ever feel as you get older that your memory is not as good as it once was?” I was floored. This set me to thinking that underneath all the memory loss and ceaseless flow of questions there are hidden wells of understanding about her condition. Somehow she knows.

Last night was not good, however. She became extremely anxious and agitated about 8:30. This is what I texted my brother and sister: “Mom’s hyper and constantly beseeching God to help her. I gave an Ativan. She says she can’t take it anymore. She keeps saying she’s dying and can’t take much more of this life. She’s asking God to comfort her. I feel completely helpless and useless. Mom says 23 years here is enough. She’s ready to go.”

Another moment of lucidity tonight: “Why didn’t God answer my prayers?” My reply: “Mom, God answers our prayers, maybe just not now or when we expect them to be answered. But He hears us.”

When I get to the point where I want to scream after 2-3 hours of ceaseless questions and talking, I realize Mom lives only in the present. She has no memory of what she just said. This is a powerful lesson to me who so often seeks to dwell in the past, thinking things were so much better then. In many ways they are. But now I’m making progress in my mental, emotional and spiritual lives in ways I never could have otherwise if I weren’t caring for Mom 24/7, seven days a week.

When I finally got up in the morning about 10:30, Mom was sleeping soundly. I went through the elaborate process of fixing myself a good breakfast, glancing at the paper, having my coffee and gathering myself together before I’m ready to get Mom up. I might find myself succumbing to the awful and strange headlines of the day: horrific wildfires in California; unending wars and conflicts; tariffs; 90 degrees temps at the Arctic Circle with both people and reindeer seeking relief by the water’s edge; drought and heat waves in England and Scandinavia; the continuing, daily, waking nightmare of the the toxic and bizarre news out of our nation’s capital; the human-caused possible end of our civilization on Earth due to global warming and climate change. And on and on. It’s crazy and depressing. I read too much. But just as soon as these unbelievable and bizarre thoughts and ideas start to sink in, I’m caught up in a flurry of activity getting Mom’s vitals; helping her use the bathroom; giving her a daily shot of insulin; getting her up with great effort by myself, dressed and into the transport chair for the trip to the den where I go about getting her breakfast, giving her her meds and hoping she doesn’t have a choking spell swallowing the larger pills; fixing her oatmeal and egg and toast (the one meal of the day when she doesn’t exclusively eat baby food). There are more and and more endless little things to be done for her. Soon I’ve forgotten the bad news. I realize again I’m not running from anything as I did in the past. Mom is feeling better (“Am I okay?”) and I feel a vast and satisfying sense of accomplishment.

Hope then is the daily quest to keep on keeping on, realizing there is purpose in suffering despite the fact that a loved one is slowly, inexorably disappearing.  I, too, am living in the moment. Daily moments of slow grief give way to new beginnings, each and every day.

When Mom holds my hand to her face and says, “I love you,” I know I can keep going. For now, anyway. Love conquers all.

 

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August 10, 2018

How very difficult this sounds for you.

August 12, 2018

@startingover_1  It is extremely difficult and stressful at times, but it is also immensely rewarding and fulfilling when I have attended to all of Mom’s needs.  Our goal is to keep her out of a nursing home/memory care facility as long as it is humanly possible for me to do so.

August 10, 2018

The news isn’t all bad – some news outlets are on a mission to create trouble.  Perhaps you could look at a variety of news outlets – some left, some right – in order to get a more reasonable perspective on what’s happening.

I recently read an account of a NDE (near death experience) written by a neurologist, Eben Alexander.  I found it quite interesting.  I hope that some of this could be true.

August 10, 2018

This (Daily moments of slow grief give way to new beginnings, each and every day) jumped out at me.  I heard a poet lecture once at a Frost poetry festival  and he used the phrase “smash face against the truth.”  I think your comment is one of those.  As to the more lucid questions, I remember dad wondering aloud what would feel like to be buried and also when he asked me where he’d go after he died and knowing his religous beliefs I answered that he’d go heaven.  He named all of the family who had died in his lifetime, asking me if they’d be there…last of all, his mother (whom he adored).  I said yes.  “We will have a dinner together,” he commented and then asked…”will there be potato salad?”  It was so sweet, listening to him…I assured him there would be potato salad.

August 12, 2018

@sago  it’s smazing the commonalities we share in our experiences with our elders.  Your father talking about dinner together and potato salad… I can hear my mother saying the exact kinds of things.  She’s been asking where her late sister is a lot, as I mentioned in my entry.   She was convinced she was visiting and staying with us in the house. “Which room will she be sleeping in?  Will she be comfortable?”  It was very touching and made me realize again how close they were.

August 19, 2018

Such a difficult time for you. I’m sending hugs and caring thoughts across the miles, and hoping that you are finding some time for yourself to recharge. xxoo,

September 13, 2018

I am thinking of you as the maps show your home in the back areas of the rain expectations … do let us know here or in an email how you are.  At least it may be at night and not as visible re: your mother’s anxieties being lifted.  May she sleep through anything that reaches you and may you both be safe and dry.  Pat

September 16, 2018

My mother slipped further into dementia after my father died, and the hardest of all for me was when she would say “I just don’t know why your father doesn’t come to see me.” At first I evaded the issue, but then began answering her by reminding he that he’d died.  It was always fresh news for her — she always cried and grieved anew.  Until that phase passed.  There just isn’t any dignified way to cope with this situation, but you are doing an incredible job — I send white light to you and your mother.

4 weeks ago

@ghostdancer   Thank you for the kind words and for sharing your story.  Mom is constantly asking where her sisters and my father are now.  It’s so difficult to deal with but I get numb hearing it over and over every day.  I try to keeep my patience and sanity, and yes, even a sense of humor in this tragic, yet deeply human experience, with all the ramifications of that statement.   It’s getting harder and harder to write these Dementia Journal entries but I feel I must share my story with others.

Thank you again.