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Category Archives: Pain

A sharp pain echoes through my heart

Before the tears begin to fall.

And in the darkness of my room

I cry.

For everything that’s ever hurt me-

And all the things that ever will,

Alone in the blackness-

I cry.

And the tears become sobs

And the sobs become screams

And the screams become prayers-

That I cry.

Are Your arms wide enough-

Is Your love strong enough-

To comfort this child

When I cry?

Let me hear Your gentle words

Let me feel Your presence here.

Let me know I’m not alone-

As I cry.

But You are strangely silent

And I feel no arms around me

As I call out Your name

And I cry.

I wail until my heart is empty-

Till crystal pain no longer flows.

And fall asleep among the teardrops-

That I cried.

Your angels sang a lullaby-

Your gift of tears- a sweet release,

And You were with me all the while

I cried.            

Lonnette Harrell

Last night I cried, because I thought about my mother, as I often do. I know she must be sinking farther and farther into dementia, and I can’t do anything about it. I love her and miss her, and I wish things had ended differently. (But I guess she made her choice also.) I wish I could comfort her, in that far-away place she now dwells. How can you be angry with someone who is now probably like a confused child?

I cry because I remember her fear of dementia, and her fear of having to live that way. I cry because I tried so hard to care for her and please her, and she called me hateful names (while she was still in her right mind.) I cry because I’ve always loved her, and I just wanted her to love me back.

I cry because I wish that I could soothe her fears, and I can’t. All of this is progressing so rapidly, and I could see it plainly awhile back. We were told that it would not get better. I knew that her care needs were more than I could handle anymore, and I was already 3 1/2 years into total exhaustion, and sick myself. There should be no shame in saying that I could not continue on as I was. I simply could not. I knew that I was going to die.  But my brother didn’t get it. Now maybe he will.

How frightening it must be, to be trapped in your very physically ill body, losing your mind. It seems like some kind of cruel nightmare, that has no ending. She was so afraid of becoming like the people we saw in the halls of the nursing home (where she was for 5 1/2 months of rehab.) I always reassured her, and tried to help her through her confusion, and prayed that it would pass. It really accelerated after her hip surgery. She was never really the same after that, and we were warned by the Ortho doctor that many elderly people are affected that way by the anesthesia.

And now I can’t get to her. She might as well be in a castle with a drawbridge and a moat, instead of a small house in a small town with my angry brother, and a caregiver. She’s isolated. She probably wouldn’t want to see me anyway.

And I could not go back without becoming totally involved in her care, and I am not physically able to do that anymore. I have been very sick lately, and I just can no longer take the stress of her care, or of her emotional treatment of me. 

That is why she was so much better off in the Assisted Living, where she could get socialization, food she loved, and medical assistance and supervision.  There was a Memory Care Unit there as well, if she needed it later on. But my brother was determined to bring her home, and now he is probably overwhelmed as well. (You cannot possibly know what it is like to care for all her needs until you’ve done it. I could not keep up anymore, and the stress of it all was killing me.) I needed help desperately.

I can only reach her through my prayers. I ask God to comfort her, and strengthen her. I ask Him to take care of her, as I no longer can. I ask Him to soften her heart towards me, and let her memories be of our happy times together (and there were quite a few, in spite of our problems.) I ask God to tell her I love her.

But when I can’t take the pain in my heart anymore, I cry…

I realize that by posting this message, I am opening myself up to criticism from people who cannot possibly understand what I’ve been through for the last 3 1/2 years. But the writer in me feels that it is important to continue the story-just the way it played out. To do differently is to deny the pain, the heartache, and the sorrow that I am now experiencing. Not because of the decision that I have made, but because of trying to please my mother for my entire life, and never managing to feel that I truly did. The past few days have been filled with the deepest hurt that I have ever known. I don’t know how I have managed to get through them, other than by the grace of God, and with the help of my husband. For those who have been following this blog, you know the tremendous challenges that I have faced with my mom in the past months and years. I felt overwhelmed every day of my life, since my dad died 3 1/2 years ago. I developed a sleep disorder, because the responsibility of her care made me on edge every moment. I have responded to so many emergencies with her lately, that I have lost count. I felt so pressured to keep her alive (and reasonably happy), that I could not focus on anything else. Therefore, I would often find myself staying up all night, trying to find some time to call my own-writing out my feelings, and praying that perhaps I would connect with someone–anyone–who understood my plight.

I tried in every way possible to please her, but I don’t think that is possible.  I have sacrificed my health, my marriage, and my sanity to be at her beck and call, and I can’t do it anymore. What follows is a letter I wrote to an elder care group about these last few days. For those of you who know the story already, you’ll have to endure some background information that you already know, but read on for the conclusion. (Please forgive the formatting. I couldn’t get it to come out right when I copied and pasted.)

I Have To Save My Life

My dad died 3 1/2 years ago, and I have been the primary caregiver for
my mom for those years. While she still lived independently, she is an
insulin dependent diabetic, prone to going low unexpectedly, and we had
to be in touch with her continually. (I saved her life many times by
giving her OJ or something sweet, to bring her blood sugar back up. Each
time it was frightening.) I kept my phone by my side at all times, and
developed a sleep disorder, because I could not sleep at night,
since her care became my responsibility. It wasn’t really safe for her
to live on her own anymore, but that is what she wanted. I did offer
initially to have her move in with us, when my dad died. (I am so glad
now that she didn’t, as she would have driven us totally crazy.) But we
had a good system. She called when she got up, and when she went to bed.
I called in-between. I did all the errands and doctor appointments-(a
different doctor for every body part.) I took her shopping, to the post
office, hairdresser, and everywhere else she went. My brother has only
taken her somewhere once or twice ( perhaps to the pharmacy) that I remember, and
that was when I was out of town for a couple of days, and he had to.
Because I had a torn rotator cuff (shoulder), he did the heavy grocery
shopping, though I did all the supplemental buying of additional needed groceries. (Still
lugging in cases of diet cokes, and gallons of heavy milk, late into the
evenings.) I did all the prescription and pharmacy runs, etc.

My brother did very little else, but visit for lunch every day. But he is her Golden Boy,
since he came from the man she loved, and I am her slave, since I came
from the man she didn’t (and I look like him.) I took all this for all
my life, and treated her with more kindness and compassion than I am
even capable of. It was like God was loving her through me. I was always
gentle and loving with her. I can only think of possibly 3 times in my
life when I really stood up to her, and one time I ended up checking
myself into the mental health unit, feeling suicidal. (It was because I never felt any
compassion or support from her, concerning anything that was going on in
my life. I desperately needed a mother. But it was always all about her.
I felt like I was the mother from the time I was little. I had no
nurturing, except from my grandmother, and the lack of it has damaged me
terribly.) Well, about 4 1/2 months ago, she fell (while I was holding
her hand coming out of a Waffle House) and broke her right foot, and her
left leg. She was in a nursing home for that, and completed her rehab,
and was about to be released. Then she fell while trying to get to the
bathroom, and broke her right hip. This time surgery was required, and
the anesthesia really took a toll on her mind. She can’t remember
things, has hallucinations (seeing and hearing things), and seems to be
paranoid to some degree. At any rate, she was always outspoken, but now
all her inhibitions (if she ever had any) are gone, and she is very
belligerent and angry. One nurse’s aid would come out of her room almost
crying, from her bad temper. (She looked like she had been in The Lion’s
Den.)

After my mother’s hip surgery, she was no longer capable of living
on her own, and was told she would either have to have someone watch her
24 hours a day, or go into assisted living. She didn’t want to do either
of those, but finally agreed to assisted living, after making everyone
crazy in the mean time. She hated the nursing home (even though the
staff, for the most part, was wonderful.) I visited her faithfully every
other day, sometimes every day. (My brother visited her sporadically-on his way fishing.)

But he’s her hero, and I’m Cinderella (before the party and the prince.) She
babies him all the time, and shows a big difference in the way she
treats us. She comes to his defense always, even when he treats me
badly, and doesn’t pay back money he’s borrowed. (In spite of all this,
I also treat him very kindly, with the exception of one time recently, when I’d had enough.)

He can basically do no wrong. If I disagree with him about anything (which I almost never do), she jumps all over me.

I took her on elegant picnics to the Atrium, complete with battery
operated candles and white tablecloths. I made food to bring in, since
she hated the nursing home food. (It was bad.) I listened to her
complain continually about everything. I comforted her, encouraged her,
and was a good, attentive advocate for her with the doctors and nurses,
etc. I did all that I knew to do. Then I went home and cried.

She was moved into a temporary room at the assisted living, until her
permanent room became available. I was going to decorate it for her, and
surprise her with everything wonderful. This had to all be purchased very 
quickly. I told her that I would decorate with the basics, and then we
would go to her house, and get her pictures, and all the things that she
wanted around her. She criticized the color of the furniture I got, the
fact that we painted the room white, (I was trying to recreate the feel
of a room she had (that she loved) when she was younger.) The room she had then, was
painted red with white trim. I knew a one room apartment would be too
dark with red walls, so I had them paint the room white, and I am going
to do red (almost crimson) accents-bedspread,  red recliner, beautiful
artwork, white lamps, white furniture, and touches of gold here and
there. Believe me when I tell you that it is going to be gorgeous. The
ALF Director already stopped by and loved it, and we hadn’t even gotten
started good. My mother and I fought yesterday because she got someone
to let her in the room, and I had asked her to please wait until we got
it decorated, and then we could be with her, when she saw it completed.
I didn’t really mind that she went in that time, and a previous time,
when I showed her the room. I just asked if she would wait one day until
we finished it, so we could surprise her. I have shopped and worked
myself to death, getting all the things for  a couple of weeks. She was
angry that I wanted her to give me a day to finish it. She snapped at me.

She won’t cooperate with anything. She fights me on everything! We had words,
because I was in tears. Then we really had words. All of her
mistreatment of me came to the surface, and I told her what I thought
finally. (I had to, or die.)

She refuses to use her walker. She fell the
day we went to check her out of the nursing home, because she wouldn’t
use her walker. She fell her second day in the assisted living, because
she went to the door without her walker. She will not listen to anyone!
She acts like a Prima Donna. (This is her basic nature.) She says she is
not going to be attached to that thing every minute. If she falls 2 more
times (and is fortunate enough not to break anything) her care level
will go up tremendously at the ALF. (And of course, so will the money we
have to pay. We are already paying almost $4,000 a month.) But if she
falls, and has to go back to the nursing home, she will have to remain
there for the rest of her life, as there will be no more money, and she
does qualify for a nursing home right now. She will have to go on
Medicaid, if she becomes a permanent resident. (We owe the nursing home
a lot of money now, because her Medicare and supplemental insurance ran
out before her 4 1/2 month stay there did.) We can only afford to keep
her in assisted living for about 2 years, if she doesn’t fall again, and
break something. But if she does, and requires rehab, her somewhat
independent living will be over, because she won’t have the finances,
and Medicaid will take all her income, including any from the sale of
her house.

I am at my wits end. She is rebellious and defiant. She needs to realize
that this has not just taken a toll on her, but me also. I am
exhausted beyond description!!!  I spent 6 hours with her in the ER, while she screamed in
agonizing pain (after breaking her hip), and even morphine could not
control it. (I don’t want to go through that again.)

But even after all that, she still refuses to comply with using her walker.

I told her she was acting like an unruly child by refusing to use her walker, and that she was going to fall, and have to spend the rest of her life in a nursing home, because of her rebellion.

Everyone (doctors, nurses, aids) have repeatedly told her to use her
walker, and she will not, most of the time. She resents being reminded
by anyone. We frequently find it way across the room from where she is.

We have continually tried to tell her the consequences of
another fall, but she is stubborn. She will not listen to anyone! She
understands what she is doing.

In our heated discussion, I told her that no one could have taken better
care of her than I did (since Sam died.) No one.
She said, “Not always. Not always.” (That really hurt.) Before God, I can
tell you, that I have NO REGRETS.

The call ended with her telling me that I was mean, bitchy, and jealous.
I replied, “I’m so glad that you said that, because now I am gone from
your life.”
She then taunted me with, “Oh yeah? Yeah..yeah..yeah…”
My final words were, “You just watch me. You just watch me.”

So Saturday and Sunday night, I spent two surreal evenings, decorating her assisted living
apartment. Can you imagine how difficult that was for me? I had ordered
special hanging hearts (hand painted) that said, Betty’s Place and Sweet
Dreams-by her dresser. (I hope she feels bad when she sees them, but she
won’t.) I was numb to a degree, as I put things in place for her, and
weepy and distraught earlier in the day, last night, and on the way home. (I wasn’t
sure I was strong enough to finish the decorating, but thank God, I somehow was.)

She has hurt me for the last time. I will not be there to hear her
reactions or complaints. I am done! I can’t do anything right, and I
think the reason that I have perfectionist tendencies, is because nothing
is ever good enough for her. Nothing.

She made me feel guilty for trying to surprise her. I was thinking of
her–picking out the color she loved, and fixing everything so
beautiful. But what do I get in return? Cruelty!!! I cannot do this
anymore…

I simply cannot take anymore. It is time for my brother to step in and
take over. She is ruining my health (mental and physical), my marriage,
and my life. All he has to do now is get her to her doctors, and buy her
personal items-the least he can do. If I am going to survive, I must get
away from her. I do not intend to go to her funeral. The hurt is too
deep. I have had it.   (End)

So there you have it. I finished decorating Sunday night. It took us till 11 p.m. We were working as fast, and as hard as we could. I received a couple of irate messages from her on my cell, during that time, asking when I was going to show her the room (If Ever.) Once again, I felt the incredible pressure that she has put on me all my life. (I had decided to let my husband show her the room, after I left.) The last thing I did was unpack her clothes, and place them in her closet. As I realized the time to leave was nearing, I kissed her blouse, and blew a kiss into the room as I left, thinking, “I’ll always love you.” (But wondering why I was not worthy of her unconditional love and kindness.) I closed the door behind me, and it was over. But the pain was only beginning…

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Yesterday, I could not seem to get going. It was like I was in some kind of time warp, where everything was in slow motion, and most of all, my body. I felt like all the strength had been drained from me, and I needed some kind of tonic that would bring back my energy, that has been depleted for so long now.

I talked with my mom, and didn’t think she sounded well, though her speech was more lucid, as it had been yesterday, when my husband, Rob, visited her. I asked her if I could bring anything, and she asked for corn dogs from the Krystal. It’s hard to go there anymore, because it was always our place to get a little snack, after a doctor’s appointment or a strenuous afternoon. We would park the car, and savor every bite, often laughing and enjoying each other. (There are precious memories in that parking lot.)

So I ordered several corn dogs, in case she was hungry, and ate one myself on the way to the nursing home. As I carried two large diet drinks and the corn dogs into her room, I saw that she was crying. She was having those terrible muscle spasms, like she had for 6 hours in the ER, that even morphine could not relieve.

I practically threw the food and drinks down on her bedside table, and ran to comfort her. She said that she didn’t think she could take much more pain. One of the CNAs came in, and we told her the problem, but she disappeared, and never came back. My mom reached for my hand, and squeezed it tightly, with a look of pure fear in her eyes. I have had a cold for the past week, all through her surgery, and following, and though I have had to be present, I have tried to protect her by not getting too close, or kissing her. This time I knew that she needed me to hold her hand, so I did. Later, I applied hand sanitizer to both of us, trying to be so careful. When the CNA never returned, I went to find help on my own.

I was pretty much ignored at the desk, as they were looking for some paperwork for another patient, which seemed to be missing. Finally as I headed back down the hall, a nurse from the other end of the hallway called out to me, and asked if I needed help. I told her the problem, and she pointed me to a new nurse, that was my mom’s night nurse. She was chatting away with the CNAs, and I said that when she was finished, I needed to talk with her. When the CNA who had been in the room earlier, heard me say my mother’s name, that seemed to trigger her memory, and she told the nurse (finally) that my mom was in pain.

When the nurse came into the room, I told her that these were really strong muscle spasms, that had not even been relieved by morphine in the ER. I told her about the problems that Betty had with the Valium being injected into her Morphine line. (She nearly OD’ed.) I also told her that a sleeping pill that they had given her at the nursing home had caused terrible hallucinations. I questioned what we could do to get my mom’s Oxycontin dose back to where it had been, before they cut it in half. I explained that she had been on it for many years, and that at least we trusted it, knowing how it affected her. She has never abused it, and in fact, it is safer than many of the arthritis drugs she has been on.

The nurse told us that she had been given the half dose of Oxycontin, about 15 minutes before I came in, and that it would probably take a little longer to have an effect. She would check back. In just a few minutes, the pain subsided, and my mom was calm.  I was so thankful, as I don’t think she could have withstood much more pain at that level.  (She wanted me to tell her roommate that she hardly ever cried.) Bless her heart, I told her to cry whenever she needed to, as it would help to some degree. She then ate one corn dog, and so did I. I also helped her with the huge drink that I had brought with me, and she loved that. Her mouth had been so dry, and they often would forget and push her bedside table too far away for her to reach it, when they were working on something nearby.

She seemed to calm down a lot, and her face looked so much better. I helped her brush her teeth, put on some lotion and Chap-stick, combed her hair, and kept offering her more to drink. She said she loved me, and that I had “saved her life.” (It is a helpless feeling when you have to stand by and watch someone you love suffer.) I was so glad that I had come in when I did, and that she felt better. I told her to keep being vocal about her pain when it was that bad, and that we would continue to try and fight for her original dose of Oxycontin. The nurse said she would leave a request for the nursing home doctor.

I had stopped by my mom’s house earlier to pick up her mail, and sort through her bills, and a sadness seemed to envelop me. I could smell her perfume on her clothes when I walked into the bedroom, and the house seemed so wrong without her in it. I noticed that things were going stale on her cupboard shelves, and figured there were probably plenty of “science projects” now brewing in the fridge as well. I made a mental note to return one day soon to deal with the food problems. I began to cry a little. It just seemed so unfair that my mom had made so much progress through her therapy, and should have been home, instead of unable to move (now with a broken hip), in a nursing home bed again.

I had just had a conversation with her dear neighbor, who had just returned from a visit with her son. She knew about the broken right foot, and the broken left leg, but did not know about the hip. She was so very sad to hear all that had happened while she was gone. I gave her my mom’s number, and told her the best times to visit.

But soon, I pulled myself together and went on my way,  sadly locking her door behind me.

And so it goes…I tried to encourage her by telling her that within a few days, she would probably be able to use a bedside toilet, and at least the bedpan horror  would soon be over. (She hates that part so much, as any of us would.) I do worry about her trying to get up though, but I guess that can’t be helped when the time comes. For now, they still have the alarm on her.

I told her that we were going to get through this together, and that I would be there for her. I reminded her that I was just a phone call away, and to call me any time, and I’d come running.

I felt better (and grateful) as I turned out her light, that at least for now, she was not in pain…

Today was my counseling session. I have finally narrowed it down to once a month. I started when my dad was dying in the hospital, and kept on through the adjustment of caring for my widowed mom, and some continuing problems with my daughter. My counselor is a Christian, and I know God brought us together. Sometimes I think all we really need is for someone to listen. Luckily for me, my insurance pays some of the cost.

It’s funny, now that I am just going once a month, I have already weathered and worked through so many things, by the time I see her. But isn’t that true for all of us? Whose life is not a roller coaster of emotions and situations? The ebb and flow of life can be counted on.

One of my favorite authors is Kahlil Gibran, and in his book The Prophet, he writes:

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”

But I say unto you, they are inseparable.

Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.

Only when you are empty are you at standstill and balanced.

When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

I really relate to that. Who can make us weep, but the one we care so deeply about? We are suspended always between sorrow and joy. They are definitely inseparable.

He also writes about pain:

And a woman spoke, saying, “Tell us of Pain.”

And he said:

Your pain is the breaking of the shell that encloses your understanding.

Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.

And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy;

And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.

And you would watch with serenity through the winters of your grief.

Much of your pain is self-chosen.

It is the bitter potion by which the physician within you heals your sick self.

Therefore trust the physician, and drink his remedy in silence and tranquillity:

For his hand, though heavy and hard, is guided by the tender hand of the Unseen,

And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears.

That’s incredibly beautiful to me, though I don’t claim to understand it in its entirety. But somewhere deep within, I get it. Pain and trials form character in us, like nothing else can. We learn to be steadfast and to overcome. And we learn to be weak, and fall on our knees before the One who is so much stronger. He said, “My grace is sufficient for you, for my power is made perfect in weakness.” (We are weak, but He is strong. A truth we sang as children, but have yet to learn.) The Word also says, “For when I am weak, then I am strong.” His strength is made perfect in our weakness. Now that’s a thought, isn’t it? In the upside down world of the Kingdom, it’s another paradox.

God empties out everything that is “us” before He fills us with Himself and all His attributes. As long as we think we can do anything on our own, His grace and strength will not appear. But when we realize that we are nothing without Him, we can achieve the impossible.

Charles Spurgeon wrote, “God will have no strength used in His battles, but the strength He imparts.”

I like what Kahlil Gibran wrote about accepting the “seasons of our heart”, just as we accept the seasons that nature goes through. The good thing about that is we learn that no one emotion will overtake us-good or bad, because like the seasons, we are changing, and going through a divinely inspired transformation. And sometimes it takes joy to transform us, but a good deal of the time, it requires sorrow. Why? I think because we are vulnerable in the place of sorrow. We give no place to self-reliance when we are hurting, and we are more apt to hear the voice of God, and to willingly receive His correction, guidance, and love.

What season of the heart are you in today?

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