My mom starting having memory difficulties by the mid 1990s. The doctors put it down to her being exhausted from a diseased liver. But by about 2002 she was developing other symptoms, and by 2004 it was clear that she also was suffering from dementia. Father took her home in 2008. As the only child in the family who lived close by, I became the main family member to spend time with her regularly. I will admit, I did not find it easy. I was not a perfect daughter. And somewhere along the line I became terrified of the thought that this could happen to me, too.
Recently, my sweet aunt, who had become a sort of surrogate mom to me, also starting developing dementia. And my terror grew, as it seemed to me like maybe this "runs in the family." Along with other difficult events in the past 5 years or so (the loss of both my parents, my children all grown up and left home, job losses, church losses, and so on), I became exhausted, depressed - and feared I was perhaps developing dementia, too. My children were very concerned because I was becoming forgetful, withdrawn, erratic in some ways - and they sent me to the doctor.
The following journal entries mark the path I have taken in coming to that point of fear, my questions to God about it all, and the path He has taken me out as I have learned to trust Him. The doctor says I DO NOT have dementia... but even if I do some day, I am no longer in terror of the possibility. Thank You, Father.
*******
It was reading the following blog post which persuaded my children (who had been worried about me anyway) to make me see the doctor. Oddly enough, though I had only written it a week or so before they came and talked to me, I had already forgotten that I'd written it. When they mentioned it, I had to look it up - and I was shocked.... So this is where I was at that point:
The other night I had a bad dream, in which I had a tiny new-born baby, and I was having trouble focusing on taking care of the baby. I was laying on the bed with the baby when someone phoned and asked if I wanted to go for a drive. I said, "Sure," and jumped up, ran out, got in their car with them, and we drove away. After awhile, I suddenly remembered about the baby, and asked to be taken home. I rushed into the house, and the baby wasn't on the bed. But my mom was there, crying really hard, and immediately I thought something bad must have happened to the baby.... and then I woke from the dream.
After I woke up, I was picturing my mom when she had dementia. She used to pack this doll around, loving it and cuddling it. But then she'd suddenly lay it down anywhere, or even just drop it and walk away, totally forgetting about it.
And when I was recently at my daughter's place, carrying her new-born baby, there were a couple different times when I had a "flash" (a dream-like picture in my head) of myself just suddenly being distracted by something. And in this moment I'd see myself "forgetting" that I was carrying the baby in my arms. In the picture (but not at all in reality) I'd loosen my grip, and the baby would start to fall from my arms. It was really frightening. In reality, I would hold the baby extra-carefully. But I found myself beginning to doubt my ability to take care of the baby.
Maybe these incidents have to do with the fact that, lately, I find myself worrying about, or at least doubting, myself. In the past few years, as I've aged, I've caught myself occasionally forgetting (temporarily) specific words or names, but usually they surface in my mind within a few seconds, or I can quickly come up with a suitable synonym, or just explain the missing word with a short description. I know this is common as people age (I'm in my mid-fifties), but it honestly scares me.
I also have a harder time learning new things. I don't easily "catch onto" new ideas like I used to, and I don't memorize as easily as in the past. (On the other hand, I do seem to sometimes be able to personally come up with new-to-me ideas, as, I suppose, I have years of experience and ideas to pull together).
And I find sometimes that I seem to have more difficulty thinking things through as simply or as deeply as I used to; for example, when listening to people arguing a point, I have a harder time deciding whose viewpoint is likely more logical. I tell myself that it's just because I can see more "logic" or "rightness" in a variety of viewpoints than in the past (because over the years I've gathered a greater amount of knowledge - and hopefully, wisdom - than I once had. But at the same time I worry that maybe it's really a sign that I am "losing it."
Even my writing ability seems to me to be declining. I have to think things through more clearly, and edit my work more. (I'm hoping, of course, that actually I've just grown more humble, and that I now realize my writing is far from perfect and needs more effort than I used to believe).
What concerns me most of all, I think, is that I used to be able (it seems to me), to clearly hear God's voice and write down amazing thoughts I heard from Him, as well as quickly write down flowing poems, and creative articles and stories. But right now, I feel as though I still have a lot of thoughts, many of them from Father (I no longer am so confident about that. I perhaps see more clearly how "my ideas" get mixed in; at least, that's what I tell myself). But I can't seem to express them, orally or written, as easily and confidently as I once did.
I am really doubting myself. I am frequently worried that I am getting some kind of early-onset dementia. I do realize that this extra level of worry really started to set in when my aunt began to develop the same symptoms of dementia as my mom had. When mom had dementia, I didn't know of anyone else in my family background who had suffered from dementia, though I have had many long-lived forebears. So, although I decided, watching mom, that I would rather have my body disintegrate, rather than "lose my mind," I wasn't really worried about dementia happening to me. Furthermore, my mom suffered from an advanced, rare form of cirhosis, and the doctors thought that mom's brain problems may have been related to that illness. So I convinced myself that mom's dementia was an abberation, not a family trait. But now that her younger sister (though not her older sister, or her brother) has developed dementia, I'm thinking maybe it is hereditary after all - and maybe I'm "catching" it.
When my mom was in her mid-fifties, my younger sister was only in her mid-teens, and mom was bright and active and energetic. But lately I've been feeling dull, and I seem to have lost energy and enthusiasm. My "get-up-and-go" seems to have "got-up-and-went." I feel like I'm not accomplishing anything. Of course it doesn't help that I've always been self-conscious about my body image, and lately I seem to be sagging in certain spots, and have developed a little "jelly-belly"!
I've thought of some possible reasons for my dullness: I've been too house-bound and lacking social interaction as I've tried to get this "writing business" going. I've been kept from focusing and disciplining myself to get things done, while I've been waiting the past 3 or 4 months for three new grandchildren to put in their appearances (babies aren't great at keeping "due dates!"). Even though I actually have done a lot of things toward my home-based writing business, I haven't "made money" (though amazingly, thanks to Father, I haven't worried about it). And I feel that I'm not reaching any goals (Father has been teaching me to walk with Him, in the present moment, instead, but that old goal-oriented way of life doesn't easily let go).
Father! Am I really "losing it?" What's the matter with me? What do You want from me? How can You let Your children "lose it?" (And will they really "get it back" in heaven? Are those evil questions to ask?
Can You please calm my spirit? Can You forgive me for my recent scatterbrained ways?
Can You still use me? Am I still useful - of value - to You?
(Sometimes I don't feel useful or of value to almost anyone. I don't have a "real job" where I see people every day, and they pat me on the back for my little successes. And my five kids are grown and have kids of their own and I'm not "needed" like I used to be. And I don't even feel "useful" in "the church" anymore; in the "institutional" church it seemed I was always busy, teaching Bible studies, leading childrens' and womens' ministries, playing piano, working in the office, making food for potlucks, even doing janitorial stuff. Now it seems to me like all I'm "good for" is hospitality - which is a "gift" I'm sure, but this new "relational" vs "institutional" focus sometimes makes me feel a bit useless!)
Father? Can You please help me relax? And just trust You to know what's best? Help me walk with You moment by moment and stop worrying?
(And oh, Father. Here is one more thing: I am terrified of becoming a burden to my kids.) (And I think I am still feeling guilty of too often resenting and/or dreading to go and visit my mom in the nursing home day after day, for years, before she died). Father, I don't want my kids to have to look after me. And maybe I'm afraid they'll remember my big failures as a mother, and won't want me around. And it will be all my fault. It seems I am still feeling a failure from back then. And maybe I'm transferring that past sense of failure to my current circumstances. And blaming myself for everything. And fearing I'll be resented if I need help some day.)
(I just now had a flash-memory of myself walking to Red Bridge that grey, cold winter day, standing on the end of the diving board above the fast-flowing, icy river, and wanting to jump off because I felt I was such a failure as a mother).
Father, how can I forgive myself? I'm pretty sure You've forgiven me. And rationally, based on what I see, I'm pretty sure my kids have (mostly, at least) forgiven me. And that they love me.
******
(The rest of these entries are from my journal, after my children talked to me, the in-between time until I could see the doctor, and the time since, while I have been under his care.)
*******
My kids are worried about me. They have noticed that I forget things. They say my personality and attitudes seem to be changing. Some of them are concerned about early onset dementia. They want me to see the doctor.
My husband is worried. Did I just heard him say "Dear Jesus..." as he walked out of the room after checking on me?
Yesterday I was feeling like when I went and stood out on the board at Red Bridge in the winter. Like it would be good to just get cold and hazy and slowly float away into nothingness, and nobody would feel or get hurt anymore. (I know. That's just how I felt. Im not stupid. I know reality.) But I do understand why people contemplate suicide.
I should not complain. I have a thousand times more blessings than 99.99% of people. And eternity to come with You.
BUT.
Why do You want us to dream? To always be facing toward the future, dreaming of what lays beyond the horizon? I know. Longing for You. Longing to be with You, always.
I should be happy with walking with You. That should be enough. And mostly it is.
BUT.
I'm sorry about the "but" part, Father.
*****
And I can tell You this.
I cannot bear to be alone. Like my mom was. Separated from everyone. Especially, separated from You. How can You let that happen to people who love You? People like my mom (who was way more faithful to You than 99.99% of people). (I think there were moments when she must have been aware of You, despite the dementia. And even aware of me too... But what about the rest of the time? What about "I will never leave you or forsake you"?)
My mom looked so forsaken.
It's not fair.
AND I DON'T WANT IT.
Like my daughter used to say in her hard time. I just want to die right now and go home to Jesus.
I want to die, too, if I have to face living death.
*****
Funny thing. I don't even know if there really is anything wrong with me. I actually doubt it. Maybe that's denial. Who knows?
I just can't bear the thought.
Losing my mind would be way worse than physical pain. Losing one's ability to think, it seems to me, is to lose the ability to love and be loved, to know and be known, to care for (and be cared for).
If hell is separation from God, then dementia has to be hell on earth.
Physically alive when functionally dead. No choices left. And it goes on and on and on.
******
If I could trust You to stay with me - really stay with me, and talk to me, and let me talk to You (Intelligently. Creatively. Thoughtfully. In Your image)... maybe I could handle it.
BUT.
Can I? (Trust You...?) (That's evil even to think?) (I don't think so...).
How can relationship exist without intelligent interaction? Is the comfort of occasional "touch" enough? You see what happens to children who aren't properly cared for relationally when they are small. (That's not fair, either).
(There is a lot that isn't fair).
******
Is it wrong to be afraid of that which makes us so alone? And, even more, so out of control!
Stephen Hawking just wrote a book that says the universe did not need a God to be created. Maybe he just feels like You aren't there for him. Maybe he's just angry. (But at least he can express it). (Why would You give a man such a brilliant mind, and then lock it up in a pretty much useless body? I guess that isn't much better).
So our trials are supposed to make us trust You more...
Whatever happens,
Please don't leave me alone. Please don't desert me.
Please don't stop loving me.
Please.
(Times like this is when I want my mommy).
(You took her away - effectively - a long time ago. Don't take Yourself away, too. Please?)
******
Yesterday I did look up dementia on the net... I'm not sure it's actually where I'm at. I think it might just be years of overcoming depression by plowing my life into caring for others. But now I don't have many others to care for.
I lost my dad 4 years ago. My mom two years ago (after effectively losing her, to dementia, years before that). And in the past 4 or 5 years, my 4 girls have all left home, and now have their own families. My son is leaving soon. I lost my church family, too, after years of painful breakdown. And I gave up my teaching job two years ago because we were going to fulfill a dream, moving to the Island. But I lost that dream, too.
So I feel like I don't have anyone to take care of anymore. And I don't see any chance of my dreams. I was able to try and ignore my dreams as long as I could maybe help others with theirs.
Now I'm in an empty space.
And my kids think maybe I'm going crazy. And if I am, then I'll never have a chance to see my dreams. And my kids won't want to be around me (and even if they do, I don't want them to have to see me and deal with me, like my mom).
******
The lady on the TV just said, "I tried to find my identity in everyone else." That's kind of how I feel.
But it's like since everything in has changed for me, my parents gone, my kids moved out, and more.
I've been trying to finally find my own identity. And it seems like that is a big problem to others. They think I'm changing in my personality and attitude and all.
The thing is, I want to change. I'm tired of having to be what others want or need. I was so relieved back when I was in my mid-30s, and realized I didn't care much any more what "other people" want me to be (or what I was thinking they wanted me to be - whatever would make people like me and think I was "cool").
Now I think I just switched that to what my family wants. I would do whatever it took to keep the family together, to please the five kids and my husband so they wouldn't be angry at me. But I just constantly failed. I could never please them all at once.
Now I'm trying to be "just me." And I'm failing that, too. Partly because I don't seem to have any chance for my dreams. (And maybe that's partly because I'm still trying to keep the peace).
*****
I've been seriously depressed before. I've been telling myself I'm not there now. I'm just tired. And discouraged. But I've been realizing that I really am going there again. It doesn't help, either, that I'm older. I used to be really high energy. And I'm not anymore.
I don't think my kids get how tired both my husband and I are these days. We both worked hard all our lives. Our bodies are tired. It's hard for both of us. We can't do everything we used to.
*****
So. Am I really losing my marbles?
I don't know. For sure I'm depressed. I've gone through so much loss. which I really haven't been able to "grieve" or whatever. I feel so alone. And useless. I feel like a little lost kid.
I'm lonely. I'm lonely. I'm lonely!
(And if I have dementia, I'm going to end up even way more lonely.
And I can't take that.
I'd rather die. Now).
*****
I've been doing some googling on dementia, depression, and loneliness.
What do I think? Loneliness can lead to depression (and can have a lot of the same symptoms of early dementia).
I'm willing to go to the doctor. If it's loneliness and/or depression (or even some other kind of mental illness) I'd be delighted to have help.
If it's dementia. I'd rather just die.
I don't "believe in" suicide, but the thought of dementia (and especially its burden on other people) ... if I just stopped eating, that wouldn't be suicide, would it? I know that sounds stupid, but it's how I feel.
I have to do something. If there's nothing I can do, then it's hopeless. And I can't take that.
******
I'm pretty smart. High IQ. And I do not want to get stupid. More than that, I do not want to be rejected. Most of all, I do not want to be alone.
When people get dementia, they are alone. Even if people come and visit them, even if they have regular caregivers, they are alone. They don't even have voices in their head or whatever to keep them company. they end up with blank eyes, and mouths hanging open, and skin stretched over their bones... At least that's how it seemed for my mom those last years...
and they can't do anything, and people have to keep pushing mush like Ensure down their throats so they can't die. Their mind is gone. Their ability to love and accept love is gone. Nothing works anymore. But they aren't allowed to die until they totally wither away. And that is so, so, so wrong.
And I will not go there. If that's what wrong with me, I will finish it while I still can. Better much sooner than later.
I hate the thought of any of it. I hate it. I hate it. I hate it. I cannot accept it. I can't. I'd rather die right now.
******
A lady on the TV just said, "I really needed my house to be a place of hospitality." That's what I need. If I can't, I feel I have no hope.
******
I guess my family, and maybe others, think I'm not "doing" anything. I have had this dream to be a successful writer. I've kept a record of my daily writing-related activities. I have done a lot, come a long way. But I haven't "made money."
I have actually been following one of my dreams, and have so often been delighted. But it seems like if it doesn't "make money" it's a waste.
My husband really is tired. He's on a lot of meds. I guess I am responsible for him, too. Maybe I kind of resent that because it was so hard for me to be responsible for my parents when my mom had dementia and my dad was dying of cancer at the same time. And my kids were having teen troubles, and I felt that I was a total failure as a mother. And as a mother of my parents.
And if now I have dementia or something else like it, and my husband has to look after me as well... How can I be a failure again?
I feel like such a failure.
So even if I don't have dementia, why would anyone want me around anyway?
******
I think the reason I was so happy at my children's homes, helping out, when the girls had their babies this summer, was that I felt "at home." I could clean, do dishes, cook, do laundry, look after the older kids. Just everyday stuff. Part of the family. No pressure.
But now I'm home, and back to being lonely.
******
G and J came by! I had thought about talking to them, especially since I've felt so ambivalent about the whole "not trusting God" thing. But I didn't know if I should. So I prayed that if I should, for them to call or email.
And then they just came over. And we had a good conversation about church and Jesus. And then about how I'm feeling.
Wow.
And G came too, and we went for a walk together. And talked.
Thank You.
*****
I've been tossing and turning thinking about my doctor appointment coming up today.
I was surprised, yesterday, when I went back and read the blog post my kids had referred to when they said I should go to the doctor. I vaguely remember writing that post, but I didn't realize how detailed or desperate it sounded.
I'm supposing now that it really was a cry for help.
The thing is, I've been writing bits and pieces for years. And talking to people. And I'm guessing dementia is a topic everyone is afraid of to some degree. Because it is a disease that makes us all feel so helpless and out of control.
And living in a society that lauds rationality (at least it did when I was growing up) and youthfulness, we don't seem to have a place of honor or respect for those who have "beautiful minds."
In my husband's First Nations village I saw a bit of that respect and honor. I saw it in the way those who are elders, those who are slow mentally, those who live in their own worlds, those who are old and have entered their own worlds, I saw how they are treated respectfully, and are accepted as an integral part of the family and the village, and are included in everything.
They are not shuttled away out of sight into "homes." They aren't treated as "different." In fact, they are in some ways seen as special in a "positive" sense, as maybe being "closer to the spirits" or to the earth or to the ancestors. Maybe closer to God Himself.
But it's not seen as positively special in western rational society. Not even in postmodern society, which some folks think is more relational. Really?
So when I wrote about dementia, or talked about it, people ignored it, or brushed it off, or said, "Don't worry. You'll be fine." I guess that's why others didn't want to come with me when I went to visit mom day after day.
Out of sight, out of mind. (Hmmm... and out of mind, out of sight...)
I read that book by the man who loved his wife (with dementia) right through to the end, and took her to all kinds of places, and spent all day, most every day, with her. It was a very sweet story. But it just made me feel kind of guilty.
I read all kinds of scientific information. I asked my husband for his "professional" viewpoint as a caregiver of those with dementia and other "differences."
But the scientific view doesn't really help my emotional and relational responses.
My husband enjoys the old people, and hugs them and encourages them because he grew up in a place and time and culture where they were honored and respected.
But when it came to my mom, it was hard for him; he didn't much want to come with me to visit her. Maybe my fear and grief and confusion was all too clear. Maybe even "catching." Overload.
When my mom had dementia, her younger sister (my aunt), kind of took over the "mom" position in my life. It was a huge help to me.
But now she, too, is descending into dementia. (I wonder if it might be seen as an "ascent" in some societies? Wouldn't that be something?) My cousin and I have been been sharing. She's terrified too. And I think it has reawakened my own terror, which I had quickly buried along with mom's body.
At mom's "memorial service" people got up and told many lovely stories of mom when she was - well, when she was mom. Everyone loved her back then. They really did.
Me, I couldn't "remember" her before dementia. Probably I had buried those memories because it would have been too hard to think of them. Because it would have been a "clash" with the "reality" of the last years. Even now, even looking at pictures and stuff, In find myself maintaining, as much as possible, an "intellectual memory" connection vs an "emotional memory" connection.
Because if I let down the barrier, not only do I start to really miss her, but I am also hit with all the pain of the final years.
And yes, I am terrified of that happening to me. And for my kids having to bear it. It was hard enough for them when it was "grandma." But that was just seeing her once in awhile, and maybe feeling some of the fallout from my responses to the whole situation.
As happened when my own grandma was sick so much, and mom went and spent a lot of time nursing her. And I had to sometimes do the "mom stuff" at home, when mom was away.
(But at least, despite how sick my grandma was, we could still talk to her, and she still knew us and hugged us, even though she looked awful with so much of her face gone from the cancer, and the huge hunch on her back from the osteoporosis, and all.)
*****
When I graduated from university, the Dean of the History Department called me in and urged me to continue on and take my doctorate in historical geography. I was always so intrigued by the complex connections and interactions throughout time, between people and place.
Maybe that's part of my trouble. I am good at seeing connections and potential ramifications. So I find myself just "blocking" certain memories. And being terrified at certain possibilities. But I know I am not really being rational. I am reacting out of fear.
*****
It isn't easy being a Christian.
It seems illogical to "turn the other cheek" and to accept what seems to be totally unfair. To plant seeds of love rather than destroy the evil enemies with their own tools of hatred and evil and warfare. It's hard to live love with others (and yes, to live loved by You, sometimes) in a society that honors hard, cold, "logical" reasoning.
And sometimes it's hard for me to accept that I could live loved by You in the face of an illness that is capricious and unfair, striking anyone without regard, stealing away their essence, that which makes them who they are. I am really struglling with where Your love is in that.
Because, I suppose, I am still caught up in a view of You that is "rationalistic." "Come, let us reason together." Where is the "reason" - even the possibility of "reasoning" - in something that is so unreasonable and out-of-control?
I know human tyranny is out-of-control and unfair for the victims. But I do "understand" the motives of greed and power of the perpetrators, though I do not accept it as reasonable and certainly think it is wrong.
I know diseases like cancer and such can be out-of-control and unfair for the sufferers. But "they" are "still there." And there is usually "hope" that it can be caught early enough, and be treated agressively enough to at least maybe achieve remission if not cures everytime. (But is the pain... and uncertainty... worth it? And what about the people who don't have that "hope" for whatever reason?)
BUT.
Dementia, though it can sometimes be "slowed" a bit by drugs, is unremitting, unreversible. And it so unreasoning and illogical. And it strips people of everything we think of as giving value and worth and individuality (we as a society are also big on individuality).
Of course, obviously, I am being irrational myself, right now.
Even though "intellectually" I "believe" that we as followers of Christ will be restored - with a new "incorruptible" body - I still apparently fear (a lot) that if "I" have "gone" while still physically here, that "I" will somehow not be restored. I don't worry about the "body" because I've always accepted the body as temporary.
It's the "essence" (the "life" ... not just the "breath of life" but the personality, the individuality) that I am terrified of losing.
Of course in some ways all this is just crazy thinking, because it's "unscientific" and reflects the particular "perspectives and beliefs" I was brought up with. But knowing that doesn't make it easier for me.
I still "believe" that "thinking it through" like this will somehow fix it, find the solution, banish the fear.
Stupid.
******
Understanding myself as in "relationship with God," seeing that as central, core, all-important - I find myself (irrationally, I suppose) terrified of losing that relationship because of losing my personality and self-identity and intellect.
If "I" am destroyed, what is left of "me"?
I scoff at the JW explanation I heard about how God makes a "recording" (like on a CD) and then at the end of things, re-creates and re-builds the person.
I don't believe there is a "dead zone," a nothingness time.
So I guess I see a "personless spirit" making the transition.
Illogical, I know. But at the same time, somehow logical, to me.
******
Father, I'm having a really hard time talking to You about this. I feel angry, and afraid. I know a lot of it is illogical. And I'm afraid You will think I am illogical and untrusting.
I KNOW You will take me safely across the river when the time comes, and I WILL be restored, not only to my "best" in this world, but to the ideal You had in mind for me from the beginning, from before "time." I know that, and yet somehow I am having a hard time "believing" it.
I've tried to "reason" through it.
But it doesn't really seem to be working. My fear seems to be overwhelming all my efforts at reasonableness.
I know. I'm not trusting You. I'm sorry. My fear seems to be overwhelming me in that way, too.
So. Please. YOU FIX ME. Please. Because I can't.
(Thank You).
*****
And I do want to say, "Whatever happens, it's okay with me."
In fact, I am saying it. Now.
But I'm afraid that I might not be able, always, to act it.
In advance, "Please help my unbelief."
You know life is complicated. And I'm NOT perfect. (Ha!)
(Whatever "perfect" is. Except for - yes! - being "perfect in Jesus." Thank You!)
Thank You for my kids bringing all this "out in the open" so I have had to face it.
It's time to let my fear go. (And my often irrational rationality). (And my desire for control). (Which I didn't realize I was still hanging onto - and trying to control!).
******
(I was brought up in a world where "success" was important. And I wasn't the prettiest, or most athletic, or most socially-adept ... but I was pretty smart. And I guess that became "me." And I've been afraid that if I lose that, what will be left?))
*****
Well, I've been to the Doctor. And he said I most definitely DO NOT have dementia. But I am depressed. And anxious (surprise).
So he gave me a prescription for some meds. And told me that ideally I should go away for a restful holiday for a month or two. But at least sleep a lot for a month or two.
I am so tired.
And of course I am relieved.
Though I am having a hard time believing it.
******
"It's human nature to create complex scenarios to answer simple questions." (said a guy on a documentary program about conspiracy theorists).
And last night on CBC I heard this: "Guilt is the favorite disguise of fear."
And on "The God Journey": "It's the living loved that's important... My security is not that I know Him but that He knows me... a reality you can't reason your way into..."
*******
Father, I don't know where to start.
I want to "live loved."
I think that I've been (deep down, mostly subconsciously) fearing a couple things:
- that my mom knew my feelings about the whole dementia thing, and was hurt by it
- that if dementia separates people from "intellectual" companionship with other people (and destroys relationship to a large degree, thereby), that maybe it separates them from You, too. (At least with people, there's still the possibility of physical affection, touch, hugs ... and maybe pleasant smells, tastes, sights, sounds...).
But You are pretty much incorporeal, at least on this side. I know You can be experienced through Your people. But other than the "professional caretakers" plus a very few others, most of Your people - and even my family - didn't want to go see my mom. And she was one of the most-loved people I ever knew (at least before dementia). I'm not loved like she was.
And I really didn't know how to "relate" to mom after the dementia really set in. I visited her often, sat by her, read to her, took photo albums and talked about memories of people and places, sang to her, took her for little walks, hugged her and held her hand, brought her things I thought she'd enjoy.
But my relationship with her had always been so "we can talk about anything." And then we couldn't. Even her lively eyes and bright smile faded away. So slowly, over such a long time. SHE faded away.
(But the nurses and aides said how she died so peacefully. And that she had a lovely personality. And I am convinced she was seeing angels at the end. And she hugged and hugged my sister just days before she left us.) (So maybe she was more aware than we thought. In which case, I feel even more guilty. For not being "loving enough.")
Father, I know You love us. And You don't leave us. And I "know" that we experience Your love in many more ways than just cerebrally. I guess I'm still influenced by tha upbringing that stressed that value and worth is in "knowledge of" You. And, I suppose, I must still think that "let us reason together" is the important way to communicate with You. Maybe even to "be loved by" You.
I "know" that is not true. But it seems like somehow I really don't know. Like I "knew" for years and years and years that You love me. But then, suddenly, one day I really KNEW it!
Except that it seems now that I'm not truly trusting (convinced?) that You love me no matter what. Or, at least, that You do love me, but that if I become "useless" (read that as "unable to reason" or as "losing my marbles") that if I can't "do any useful serving" or be able to "pray" in words or whatever, will You really spend much time with me? Let me know You're with me, loving me?
Father, I'm terrified of being alone. I've seen what happens with people's relationships when dementia develops. That's hard enough to take. Avoidance, if not rejection. But how can I bear the thought of being alone, separated from You?
It's not even "rational," of course, in light of Your Word. And of my own experience with You.
BUT.
I've been through a lot of loss lately. Dad dying quite suddenly of cancer. Losing mom more and more over a long period of time, and then permanently (on this side of eternity, at least). And my kids growing up and moving away. And not getting to see them and the grandkids very often. And losing jobs for reasons I could not control. And losing my connection to a particular church family that disintegrated, and losing my "connection" to traditional church as well (I'm not so sorry about the latter in many ways, but there was some "security" in the group). And now my aunt, who became my surrogate-mom when my own mom had dementia and then passed away, is quickly slipping into dementia herself.
Yes, Father. I've said much of this before.
Father, I need to just "live loved." But I don't seem to be any good at it. Still "trying to" ....
Why is it so hard for me to "rest in You"? To walk with You? To just follow You? To let You just love me - and live every moment in Your love?
I AM tired. Maybe from too much trying. And not enough trusting. Not enough KNOWING You?
(Oh. And maybe... not enough repenting daily. Not recognizing or admitting my sinful attitudes.. Not enough proper, formal prayer. Not enough study and witnessing and going to church and paying tithe. Not enough thanksgiving in all things. Not enough singing and worship. Not repenting of the sins of my forebears - I heard that on a "Christian TV" program today). (Maybe I'm still worried that I'm not "doing" whatever it is that pleases You). (Maybe I'm afraid You'll punish me with dementia. Though, of course, the doctor says I don't have dementia. And theoretically, I'm pretty sure, okay, I KNOW, that You don't "punish people with dementia").
Father? Jesus? Holy Spirit?
Do You love me?
I KNOW You do.
Will You stay with me, and love me, no matter what?
I KNOW You will.
Will You walk me into living loved by You?
I KNOW You can. I KNOW You want to.
I KNOW You will. Please do.
Thank You.
******
I began wondering the past week or two if maybe I just got too tired and foggy to expend the energy it takes to worry. Because here I am, starting to feel a bit better. And I have started worrying again.
Of course I am again doing my best to hand it all over right away to You, Father. And You ARE helping me.
Thank You!!!
******
One of the things A and I talked about was that maybe You are stripping away from us things in our lives that we've gotten so focused on that they come between us and You.
I really have thought I've been focusing on You, Jesus, Father, Holy Spirit.
BUT
If I had been, could this depression have happened? Could this fear of dementia have developed?
*******
I think that all my life (at least since I started school), my self-identity has been very much wrapped up in my "intelligence." Hence, my fear of losing it: I guess, that to lose my intelligence would be to lose "me." Leaving what? a breathing shell?
Another thing A and I talked about was my long-held presupposition that being a "good Christian" equals being an intellectual Christian. I KNOW that walking with Jesus (relationship: which includes "reasoning" but is so much more than just that) is key.
But I still have had this fear that if I'm not an "intellectual Christian," I won't be a "good" Christian. And I won't be useful - or approved - to/by God.
*******
Father, Jesus, Holy Spirit... I don't feel panicky now, and I'm not so tired (but I still have to be careful). My brain IS getting clearer (as long I don't get too tired) and my body is starting to enjoy exercise and fresh air again . And I'm longing for community.
Yes, You have taught me a lot through this journey.
Maybe I could use some counsel. From You, of course, through Your scriptures and the voice of Your Spirit speaking with my spirit. But maybe also through others of Your family? Please, dear God, Your will be done.
I AM trusting You! Aren't I?
Oh, please help me to walk where You walk. See what You see. Do as You do. Please!
I want to hear You, speak with You (pray!), do Your will for me, share with and live in Your love with Your family. Be a servant like Jesus! Oh dear God, I want to "Practice Your Presence."
I want to know You. Love You. Obey You. Serve You. I love You, Lord! Thank You for loving and forgiving me. Thank You, Jesus, for dying for my sins. I love You! All of You! Amen.
*******
I think my husband must be needing a lot of sleep, too. On his nights off, he sleeps for most of the night and then for most of the day, too. So maybe You are giving us both some "rest time." Along with giving hubby enough work to keep us going okay. Thank You, Lord. Please look after us. Please look after my husband. Please heal his body, and his tiredness. And his depression, too, if that is what it is.
*****
"As I walk through the valley of the shadow...
You are with me.
Your rod and Your staff they comfort me.
You prepare a table before me...
You anoint my head with Oil.
My cup runneth over.
Surely goodness and mercy will follow me
ALL THE DAYS OF MY LIFE..."
No matter what happens!
(Psa 121)
******
"Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the LORD your God is with you wherever You go."
Joshua 1:9
********
(Adding more thoughts about dementia, a couple years later: December 2013. After not writing about it, not thinking about it --well, as much as I could manage.... Anyway...)
I want to play (and not for utilitarian "good reasons" ... but just to play, have fun, laugh, be with people (and with You), breathe in fresh air, enjoy--just joy! Yes, I believe it can be, should be, a verb, an action...an unplanned, free, whirling, twirling, laughter, joy-filled one.
I haven't been there for oh so long. I'm tired of being old and slow and careful and cranky and serious ... I want to be a child again (and no, I do not mean in a second-childhood, dementia kind of way at all. Just the thought--and every time I search for the "right word"--gives me a deep chill of horror, terror, fear.
Oh Lord! I so do not want to suffer from dementia. I am afraid--for myself, but also for my children (and husband). I'm still tired from that last experience. I'm still holding out a shield, trying to protect myself ... and I'm so tired of holding it up against an invisible yet terrible enemy that makes absolutely no sense at all.
The horrors of war, poverty, corporate greed ... they are horrors ... but it seems like at least someone is profiting from them, even negatively, in terms of greed and power and stuff. Who profits from dementia (and other ailments--some from birth--that seem to have to hope, no reason--all all)? Though of course I suppose it can be argued that they make the caretakers and loved ones better people (or, apparently, cause them to become old, tired, stressed out, and literally die much younger than they would have otherwise. I suppose there are some people who have become "better people" from care-taking ... but it sure doesn't seem like I received a "passing grade" in that department. In fact, I feel like a great failure ... and that resentment, and guilt ... and never-ending tiredness (and fear, and exhaustion) are where I've ended up. Which, no doubt, means I'm a failure in terms of being a good person, a "Christian" person, if I might be allowed to say so.
I was going to say "a failure in Your eyes" -- but I'm pretty sure You don't feel that way about me (!)
Maybe it's mostly in "my own eyes"...
Terror. I'm in terror.
And I'm so tired.
I want rest.
I know it has to come from You.
But I'm holding You away. Protecting myself, maybe? Still wondering how a loving God allows those things to happen at all--and especially to His most faithful children, like Mom. What is with that?
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