Nobody told me about death

It was such a surreal time when my mom was dying. Nothing in my life had prepared before it, and nobody helped me through it. It was strange for her to, of course, so she was not able to help. The person I had always looked to for guidance was looking to me for strength.

The hospice social worker read off a set list questions – “What do you want to do?” “What life goals have you not achieved?” I guess the idea was to try to do some of these things before she died. It all seemed cruel and thoughtless. She couldn’t do these things – not enough energy anymore, or time. Visit England, her birthplace? Not possible. See me graduate / get married / be an adult? Not possible. 53 is a young death, and all preventable. She signed her death certificate the day she started smoking. She tried to quit but didn’t stick with it for many reasons. Something stressful would happen. She was bored. Dad wouldn’t quit.

Milton suggested that Adam ate the apple because Eve had, and he didn’t want her to be alone in being banished from the garden. He sacrificed his own happiness to be with her, to support her. Is this part of it? Or was it just a simple ugly habit, an addiction?

Near the end hospice sent over an aide they’d hired from a home healthcare company. She was a skinny black woman of limited education. She browsed our bookshelves and pointed out those that she felt were expensive. They weren’t – we often found large hardback photo books on the remainder table for under $10. We collected them and savored them, as the library in our city was small, and far away. After she said this I felt obliged to stay in the room with her all the time, which defeated the purpose of having her there. The point was to have a trained person with my Mom so I could go get errands done, or simply have some time off from the endless task of tending her by myself.

The aide also wanted to use Vaseline to swab my Mom’s mouth, saying that dying people’s mouths get dry. They do, but Vaseline isn’t the answer. That is weird. “Would you want Vaseline in your mouth?” I asked her. No answer. She couldn’t empathize.

She also had a bit of note paper in a folder she brought in. She’d written “The devil is real” and “You’re going to die!!!” on it. I asked her about it. She said that sometimes the people she tended would “act up” and she’d shove this in their faces to quiet them. I called hospice and said she never needed to tend my mother or anyone else ever again. They said she was leaving that company to go tend people who were profoundly mentally and physically handicapped. I replied that “She does not need to be around anyone who cannot defend themselves”. They had no answer, it was out of their hands they said. She wasn’t hired by them, it was through another company.

Around the same time a lady named Bernice was there. She went to the Episcopal Church that Father Rainsford had visited at and preached. He used Mom’s story in a sermon. He did not ask if he could, but that is another story. Bernice felt moved by the story to ask if she could help since I was tending Mom all by myself. She helped watch the watcher and later went, by my suggestion, to get hoagies from Ankar’s. She’d never had them before. They are my family’s comfort food. Submarine sandwiches don’t even come close.

I remember how weird it was when Father Rainsford came over towards the end and did last rights. That made it really real. He called out the page in the Book of Common Prayer. I was one I’d never seen before, and I scanned the title of the section. It is page 462 if you are interested, and it is titled “Litany at the Time of Death”. I’d not asked him to do it, but he knew it was time. I wasn’t ready for it. She died maybe a week later. She’d not talked for a week before this, but chimed in when we recited the Lord’s Prayer.

People who are dying see things that others don’t. Mom asked about that man who was sitting there, pointing towards the couch. No man had been in the house for days at that point.

People who are dying do unusual things. She was picking at her bedclothes. She took all the Kleenex out of a box, one by one. She filled in random letters in the crossword puzzle she was working on. Late one night she had nightmares, visions. She was quite anxious, calling out. I could not calm her. I called hospice, who sent out a nurse who gave her more anti-anxiety medicine. He said that people tended to die the way they lived. Since Mom had smoked a cigarette every 20 minutes of her adult life, she was quite unable to calm herself without chemical intervention.

Months earlier she’d finally came to understand about my pot usage at the time. She refused to try it, afraid that the doctor would find out through blood tests. What would they do – arrest a dying woman? Refuse further treatment? If she had tried it she would have been happier, more at peace, better able to process her feelings. It takes the edge off, and it is hard to think when life is all edges and angles. Plus she might have not lost much weight since she would have been hungry, and pot is also an anti-emetic. The wasting away from throwing up from chemotherapy drugs is awful. The “cure” is sometimes worse than the disease. Surely there has to be a better way to heal than by putting poison into people’s veins. It makes no sense at all.

The neighbors provided food. The priest visited. Hospice nurses and volunteers came. It still wasn’t enough, and still none of them told me what to expect. Hospice provided a page of “things that might happen” but it wasn’t enough. I needed someone to sit down with me and let me know that this crazy event that was happening was normal, and here’s what to do and not do.

Nobody told me what to expect. Nobody counseled me. Nobody thought to care for or about me, the 25-year-old child, not yet an adult, he was tending her mother, her friend, her roommate, alone and without training. I would suspect it is just as hard to do this at 50, but at least then you’ve had a bit more life experience to call upon.

At the end my aunt came, even though we were against it because of letters that she had written my Dad, saying that Mom would be better off dead. There was no one else I could invite to stay over to help me. Friends left me. In spite of my years of church involvement, church members never showed. Did they know? This is one of the disadvantages of being in a large congregation.

If I was pregnant, for instance, I suspect that someone would tell me what to expect, how to handle this. There are books at least. But people don’t talk about death. It is the elephant in the room. Perhaps they don’t know what to say? Perhaps I appeared to be handling it so well that they thought I knew. It was a façade, a front. In the back behind the scenes, I was alone, made more so by the fact that my counselor, my support, my friend, my roommate was leaving me, fading away to nothing right before my eyes.

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Being reminded of who you are.

I once had to remind my Mom of how strong she was.

I’m not sure what was going on – either Dad had separated from her, moving in with his 80 year old Mom, or she had cancer. It all blurred together that year, one bad thing fading into another.

She was alone, and frightened. She had me, but I was 24, still living at home. I was in college, working part time. It wasn’t enough to support us, and she didn’t want me to quit college. She never got to go and it was important to her that I finish. Dad was sending some money, but it wasn’t enough. She had to get a job.

She set her sights low. She thought about going to work in a gas station. It was simple – no experience necessary. I didn’t like the idea because it would be dangerous – there was a risk of her being robbed. I also knew that she could do better. She’d managed a call center, many years before, when I was in kindergarten.

She’d forgotten about that – and she’d forgotten about even earlier than that.

When she first came to America, she came to stay with a pen pal. The pen pal wasn’t much of a pal – the situation got worse very fast, and she couldn’t stay with her. Perhaps there had been a misunderstanding of what was expected. Perhaps the person was just a jerk.

But Mom didn’t go back home to England. She stayed here, found a job, found an apartment. She took care of herself and then met the person she was to marry.

And she did it all by herself.

She’d forgotten how strong she was, way back then, in her 20s. Surely she was even stronger now in her 50s. She could handle it. She’d done so much more since then – run a house by herself for one. My Dad wasn’t interested in cooking or cleaning or repairs or yardwork. She’d been the president of the PTA. She ran my Girl Scout troop after the leader quit at the first meeting. She was always filling in where others dropped the ball and doing a great job. She had no training and no experience, but she knew when something had to be done that someone had to do it, so she did.

I take after her a lot, now that I think about it.

We forget ourselves. We forget how strong we are. So when something unexpected and hard comes up, we think it is the first time we’ve climbed that mountain. We’ve climbed Everest. It was years ago, but we climbed it – when we handled our parent’s estate, or stood up to a bully, or left an abusive boyfriend or husband, or gotten a PhD, or any number of things. Life is full of mountains. It is just that when we get into the long flat stretches that we forget.

Remember your mountains, and they will help you get over this one.

Baby in reverse.

Taking care of a dying person is like taking care of a baby, but in reverse. They become less and less able to take care of themselves. They spend more and more time asleep. They start to make less sense.

It is important not to be afraid by these differences. This formerly active and vibrant person that you knew is changing right before your eyes. She will show less signs of being interested in anything other than what is happening right in front of her.

It isn’t anything personal. It is simply a normal part of the dying process. Consider that it is like hypothermia. When the body gets very cold it will conserve all of its energy. The body will automatically start taking energy and heat away from the extremities. Death is like that, but it is social and spiritual.

It is a time where they withdraw from their external activities and all of their attention and energy is refocused and re-centered. They will begin to show less and less interest in their friends and in their family. They may have unfinished business they feel that they need to do. And they may start trying to control things more. This is a normal behavior for people who have felt very nervous throughout their lives. People tend to die the way they live.

You may see a dying person “working”. They are working in any way they can. They may pick it their bedclothes. They may move things around. As long as they are not doing anything dangerous let them continue to do it.

Dying people may see people from the other side. I do not believe that these are hallucinations. I believe that they have one foot in this world and one foot in the other. Again, as long as they are not causing any harm to themselves let them continue. If it is not making them anxious, there isn’t a problem. Do not argue with them. You do not want to agitate them. You want them to have as easy a transition as possible.

When my mom was dying I saw my helping her during this time as my gift to her. She took care of me when I was a baby and when I was sick. I figured that it was my duty to take care of her when she was dying. Fortunately we had a good relationship, so that made it easier.

Memory Postcard 2 – My Mom and me.

Mom and me

I decided to make another memory postcard, but this time with a picture of my Mom and me. I find it interesting that in both of these memory postcards my face is hidden, and water is involved. In the one with my grandmother, my hair is wet because I’ve been swimming in the pool at the Holiday Inn. In this one, I’m totally wet because I’d been swimming in the ocean.

More like near-drowning instead of swimming. I wasn’t a very good swimmer. I’m not a great one now, but I know enough to swim only in pools with lifeguards nearby.

This picture really tugs at my heart. It is really hard for me to look at, because of the look of love in my Mom’s face. I can tell that all of her being is locked right into me in this moment. It has been twenty years and I still miss her.

I felt like I had a great childhood. Some anomalies are rising up, though, that let me know it wasn’t that wonderful. I obscured a lot. I forgot a lot. I also didn’t know what I was missing.

What I was missing was some education. My Mom didn’t teach me how to take care of myself. Gardening, cooking, keeping house, sewing, – she did it all and kept it to herself. I don’t know why. Some of it might have been her attitude of “It is easier to do it myself”. I have some of that attitude. I need to work on it.

I’ve started to talk with my Mom and make peace with her while I bake. I bake banana bread every week as part of our breakfast. We connect this way. It is our time together. In a way, I’m teaching her what I needed to know. I’m becoming the Mom to my Mom, while re-parenting myself.

I mounted it on art paper that was made using dried flowers. I’ve had this paper for at least ten years. This is the first time I’ve used it.

Here’s a shot of the stamps.
mom2

I used a lot of stamps because I feel like it is a long way between her and me, and it needs a lot of postage. I put the one with the Queen first, because Mom was English. I like this one especially, because the building looks like it is Mont-St.-Michel, which is the original of St. Michael’s Mount in Cornwall. I visited there when I took Mom’s ashes to scatter. She couldn’t decide if she wanted her ashes in the backyard in her garden or in England. Cremation is easy. You can do both.

I’ve since moved, so I can’t visit or tend her garden. I have only visited England that one time.

I put a rose stamp because her ashes are mixed with the ashes of her parents and grandparents in a rose garden in Manchester. I put a morning glory stamp because it is beautiful and temporary, and they grow wild in my yard. This links there and here, where I am. This also reminds me to appreciate beauty wherever I may find it, and right then, because it won’t last long.

Here’s a close-up of the two of us together.

Mom3

Such a shining smile she was giving me. I probably didn’t see it at the time. I was probably freaked out by the ocean. There are way too many experiences with me, my Mom, and uncontrolled water in my life.

Top left corner –
Mom6

“A fond memory will soon lead to a renewed old friendship.” – I’m learning how to see my Mom as a friend and a guide. I’m learning, slowly, how to forgive her.

Lower left corner.
Mom4

“Rely on long time friends to give you advice this coming week.” She advises me, now.

Lower right corner.
Mom5

“Now is a good time to call a loved one at a distance from you.” You can’t get any further away than where she is, yet she is as close as my thoughts. I have to remind myself to keep the connection open.

“A friend will soon reveal an exciting secret to you!” – I felt like this was relevant. Perhaps prophetic?

Playing rich

I talked with my Mom while I was baking today. And of course, I didn’t talk to her in the normal way. She’s been dead for 20 years. But we talked, just the same. You might understand.

I asked her about “real” cooking, instead of basically reheating frozen food. A lot of what we ate came from boxes, and tasted like it. A lot was brown.

I said, if you’d practiced more, then cooking wouldn’t have been such a burden to you. It wouldn’t have been so hard.

She pointed out that they didn’t have much money. My Dad was chronically underpaid as an English teacher. He never got his full professorship. He never got tenure. Every semester it was a challenge to see if he had three classes to teach or none. He had started to teach long-distance. This was in the days before the internet. He couldn’t teach at home with everyone Skyping in. He drove. He drove long distances and late in the day, so that he could teach adult students who were juggling college with a career. They met in high schools after hours. Sometimes he taught in prison. He taught wherever he could – in part because he loved to teach, but also in part because we needed the money.

So we didn’t have much.

But it also wasn’t spent well.

I remember that Mom lived rich. She didn’t get much love from Dad. It was a cold marriage, one of duty. They didn’t have to marry, but they had married fast, without much time to get to know each other. She certainly didn’t know that he was mentally ill and not properly medicated. Not like the medications back then were any good. Mostly they turned you into a zombie, a shell of your former self. No wonder the compliance rate was so low.

My Mom stayed with the marriage out of a sense of obligation, and perhaps out of fear. What was a woman with no training supposed to do on her own? How was she supposed to support herself and two children? So she stayed. It wasn’t bad enough to leave. They didn’t yell at each other. They just didn’t speak either.

So she got what she felt she was owed through material things.

There were expensive perfumes. There were jewels. There were nice clothes. There was even a mink stole.

She didn’t feel loved in a non-tangible way, so she demanded it in a tangible way. This is so sad. It was like she was a prostitute in her own marriage.

So we were shortchanged on actual nutrition because my Mom felt slighted. She didn’t feel nourished, so we didn’t get nourished. I know this wasn’t intentional. I know she didn’t think of it like this. She didn’t see the connection at all.

If she’d worked on the real problem, she wouldn’t have had to supplement with things. If they’d gone to marriage counseling, then there might have been something real there.

And then she reminds me that they did go to marriage counseling. It was through their church. It was with the priest, who had taken a vow of celibacy. This man knew nothing about how to live with another person. He’d never been married. They didn’t get the help they needed. So instead of finding a real counselor, they just left the church.

And just existed, together, in a sad way. For years.

Money doesn’t buy happiness, true. And happiness sometimes is hard work. It is hard to fight for yourself. It is hard to stand up for yourself when you feel beaten down. It is hard, and it is tiring.

The more I dig, the more I uncover. The more I uncover, the more compassion I feel for my parents. The more I understand why they made the choices they did. The more I am determined not to make the same mistakes.

I’m sure I will. Not all, but some. Nobody is perfect. That is impossible. But intentional living and mindfulness are showing me things I never saw before. Perhaps things I never wanted to look at before.