I’m Not Okay! I Am But I’m Not.

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Be like the sun for grace and mercy. Be like the night to cover others’ faults. Be like running water for generosity. Be like death for rage and anger. Be like the Earth for modesty.
Appear as you are. Be as you appear.

Rumi

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I would guess my title is confusing. I haven’t written much about caregivers but I suspect there is so much they are not saying.

I’m not a stranger to working with someone whose memory is failing them. Being an only child I was the one to see that my mom got the care she needed. She was not very accepting of this care and didn’t like me very much until her last years.

My mother-in-law also had memory loss issues. My sister-in-law was the one that alerted us to the fact and so we tried to help with our mother and mother-in-laws care.

My sister-in-law, after taking care of her mother, also needed care and her husband and family stepped up and loved her as she was. Sadly we did not step up as much as we could have. We were one of those people who weren’t sure what to do so we stayed away, much to our regret now that we are wiser. I also think we were tired from my mom and my mother-in-law’s situation and deaths, and our way of coping was to stay away rather then to watch another family member struggle. We were not okay though we appeared to be.

My brother-in-law went from being a very capable person to one that could not navigate life on his own. My sister-in-law, his caretaker, tried to take care of him but she got tired and as a result, had a hard time making decisions about their life.

We tried to help in all of these situations. We were aware but we didn’t want to overstep, although occasionally we did, because we saw how tired their caregivers got and so we helped make some decisions.

The difference between that and my caregiving duties now is that for us or me, it wasn’t 24/7. I could leave the situation but in each instance, those family members that were caregivers never complained and would always say they were okay. It’s like a shame to admit we can’t always handle things on our own when we are caregivers. We become tired. Our decision-making is occasionally made out of tiredness because we can’t think about one more thing. Reaching out to others seems like a weakness and there is the fact that family and friends do not always know what to do or they feel uncomfortable.

There is also the guilt if we have to put a loved one in a facility where someone else cares for them. The reality I have seen is that tired caregivers aren’t always the best people to care for the people they love. A wife goes from being a wife to being caught up in the chores of making meals, juggling doctor appointments, seeing the house is safe and keeping their place of living clean. They become a mother not a wife. The world for both of them becomes lonely.

We are blessed as when we reached out we have been receiving wonderful support. My children help when they can and my daughter saw that I was too tired to find a place to live where things would be easier for us. She took charge and that was what I needed for us to make a move. It was hard to trust that job to another person, even my daughter.

Though my kids are supportive they haven’t been able to be here much because of distance and busy schedules. Appearances short term can be deceiving, hiding from our family the reality of what is actually happening on an hour to hour or daily basis. Family might think they know what we are going through but unless they spend days with us, they don’t, just like I didn’t get the full picture with all the people in our family that have had this issue before us. I didn’t live it all day and all night on my own like they did. It is mind-blowing and a wearing, bone-tiring job. There I said it. It is tiring.

I know my kids think I complain too much. I vent to them and I probably shouldn’t, and they give the only response they know how to give and most of the time that is: “It’s going to be alright.” And it is,and I don’t know what I expect them to say at that moment.

I think the gist of what I am saying in this long diatribe is this: I try to be positive and most days it works. I suspect that is true for most caregivers because we know what our loved one is going through is much worse. But there are days when we just want to shout to the rooftops “I am not okay.” But we don’t because of the response we get from others. We need our loved ones to understand we need for them to let us to not be okay for a moment, an hour, a day, so we can pull ourselves back up and go on with all the details our life now entails that we don’t want to do. Let us have those times and don’t feel uncomfortable when we feel that way. It will pass. We just may need to express it out loud. We’re not looking for sympathy we need to let it out and not bottle up unhealthy feelings.

I had a recent phone conversation with a person that has taken care of their loved one for a long time. Their children want them to move to somewhere where there is more help. The kids have given them brochures, telephone numbers etc. to no avail. The children have given up and said there is nothing more they can do and have resigned themselves that this is not going to end well.

In talking to their person recently, that is the caregiver, I said, “You’re just too tired to make any of these decisions, aren’t you? The thought of finding a place to move and then actually moving plus trying to tell your loved one is overwhelming.” They broke down and said, “Yes.” So the children and the parents are at an impasse because the children don’t understand this and the parent can’t communicate it. I imagine there are many scenarios like that.

If you’re reading this, take away from it what you want. I’ve found help through an Interfaith Caregiver’s group in my county and the VA , because my loved one is a Veteran. There are also county services you might qualify for and if you’re a Senior Citizen, the Senior Link Line is a great resource too. I know you’re tired, but reaching out to one of these might bring you some respite.

Don’t forget bout family and friends. They can’t help if they don’t know. Our kids, our extended family and friends, plus these groups have kept us going. God brings blessings when our tears fall. It’s okay to not be okay, and don’t let anyone tell you any different.

Minnesota Senior Link Line

Interfaith Caregiver’s

Alzheimer’s

Some of these are Minnesota Link’s but most states have their own resources.

The Constant Battle For Comfort

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Cats are connoisseurs of comfort. ~James Herriot

My Sunday thoughts this morning are on comfort. Not on the kind of comfort you might think I am referring to on a Sunday morning. Yes, I already read my devotions, said my prayers and then…I wiggled and tried to get comfortable in the chair I am sitting in. I wished I had an ottoman to rest my feet at the end of my easy chair.

Do you have those battles in your household on what is comfortable to each of you, the people you live with not understanding because what doesn’t fit you, fits them perfectly?

I am short, very short. Many chairs are not built for short people. One of my recliners hits my head at the wrong place and so the angle is always uncomfortable because it is hard to look up. The contour of the chair has my head crooked down. Most of the time I can’t rest my feet on the floor when sitting on certain chairs and sofa’s because I can’t touch the ground. Case in point, I never can touch the floor sitting on the church pews in church.

The same goes for the seats in a vehicle and the head rests. I always wondered at the wisdom of my grandchildren not being able to ride in the front seat with me because they weren’t tall enough. Their driver, me, was shorter than they were. I think I should invent a flamboyant booster chair for adult drivers that are short.

I like a soft bed, my spouse likes a hard mattress. I like an old dining room chair I bought at a sale and not the ones that sit by my dining table. The old chair keeps me at the level where the table is not above my chest. I keep replacing one chair with my old chair and my spouse keeps putting the matching dining room chair back up to the table.

Our stackable washer and dryer are gone and I am ecstatic. I could never reach to the back of the dryer without a little boost at my feet. I still have a bit of a fear of falling into my washing machine when I have to jump a little when reaching in to get my wet clothes out. It was a battle to get my spouse to understand what we had was not working for me because it was perfect for him.

My list could on and on. Can you relate? Small cars are not comfortable to tall people. Small chairs are not comfortable to large people. It’s irritating to them to always have to change the driver’s seat when sharing a car with a short person.

Don’t ever look at the top of my refrigerator or anything higher than my height. There is probably years of dust because I am the duster in the family and what I don’t see I don’t dust. I know its there but it’s easier to ignore.

It’s hard for us to understand what is uncomfortable for those around us if we have our comfort needs met. We dismiss the concerns and our lack of understanding on what works for others causes problems in relationships and friendships. We don’t want to give up our comfort or we secretly seethe with anger if we do.

I hope there are many that have found the art of compromise. Yet, we appear to living in an angry world. I can’t help but wonder if the anger stems from a need not being met or a concern not being heard. We seethe inside until we erupt like a volcano.

It might just take someone saying, “I hear you. We should work on seeing what might help.” Or it might take us not expecting others to meet our needs but seeing what we can do to make ourselves more comfortable. I bought the old dining room chair. Yes, it gets moved elsewhere but I can always put it back when I need it.

God made us all different. We have tastes and likes and needs that are unique to us. We are not like our neighbor. My neighbor likes a weed free lawn. I don’t really care about weeds. Some of them are pretty. However, what I do with my lawn affects his because my weeds infect his life. He puts up with my weed yard even if it causes more work for him. This year I sprayed my weeds. It’s a compromise. It’ll make life easier for him. He makes life easier for us by doing things for us that we can’t do anymore. We are both more comfortable in our lives because of it.

Yesterday a wise friend and I had a conversation about relationship dynamics. They pointed out to me our words, and I know mine are, get peppered with, “They won’t let me do that.” This person was right. We stop ourselves from living parts of our lives because of the lack of understanding of someone else of what we need for comfort for our body or our soul. I have to ask myself where I learned that. Do those people really stop us or are we stopping ourselves and using it for an excuse? Our life doesn’t need to fit someone else. It needs to fit us and only then can we be comfortable with others.

This is my Sunday morning rambling. I have no answers. I have a challenge for you. What are you going to do this week to allow yourself to have those moments of comfort that you need?

I’m going to get an ottoman so I can put my feet up in this chair that doesn’t quite fit me and relax. It can be moved when someone taller sits here. A small compromise for a big chair so we both can have our comfort.

“I know there is strength in the differences between us. I know there is comfort where we overlap.”

Ani DiFranco

I Remember …

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Where were you when John F. Kennedy was assassinated? We have seen that question asked over and over again for those of us who are old enough to remember it. That was a big event in our nation’s history. In our own lives events might not be so monumental but yet they stand out as pivotal times in our lives that propel change. Each of us has those moments and these are mine.

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I remember somewhere around seven to eight years ago, going to Grandparent day at my grandson’s school located in a suburb of a large city. Sitting in his classroom I took note of the fact that the class was composed of many different races. In fact, I remember thinking my grandson was almost a minority in this classroom. This was a shock for this white woman from a small community in Southern Minnesota. I made sure I did not mention my observations to my grandson as he was oblivious to all of this. He hadn’t yet been made aware of the differences. All he knew was that they were his friends.

I remember attending a band concert at my granddaughter’s school during the time when suspicion and fear of Somali immigrants were high. I walked past a Somali woman with her head covered in her hijab and I too felt fear and suspicions because of what I had heard. I noticed there were more Somali parents with their children in my granddaughter’s school. Those from the community didn’t give them a second glance because they knew them and that was their normal, but I must admit because of all the attention by media and government, misinformation and haters, and no experience knowing a Somalian, I was afraid. Would we be in danger during the concert? I remember thinking I didn’t have this problem back home in my community. I felt comfortable and safe there.

I remember the first time I came in contact with a gay person. He was a friend of ours. We had known him for years but we didn’t know he was gay because he kept it hidden. He finally came out to us. It stands out in my mind that though we knew of this, someone decided they needed to point out to us that our friend was gay. They thought we didn’t know. Though our friend was our age he was also a friend of our daughters, and the person thought we should keep him away from her, and we should stay away too. They knew we wouldn’t want to expose our daughter to those things.

I remember the first time I met a black man. He was the husband of my best girlfriend from high school and they visited our home in our small white community. We didn’t have qualms about meeting him because if my friend could love him we would too, However, we wondered how our three-years-old and six years old would react and if they would say anything. They didn’t notice his skin was another color.

I remember the first time I met a Morman. The family moved to town and the husband worked with my husband. I was told by many to stay away from them because they would try to convert us to their ways. Some people shunned them. We gained loving friends and surrogate grandparents for our kids and religion was never talked about, though one of them was a leader in their church. Unless we asked a question they didn’t try to convert us to anything. They just loved us as family and spent many hours at services at our church supporting my children.

I remember when my relatives came to visit and stay for a few days when I was a teenager. They were Jehovah’s Witnesses. The flag went up with many of my parents friends. And my church at that time had taught me to be wary of the evil they may teach. I had already met them from a previous trip to visit them in California so all I knew was the love and caring of family, no matter the difference in religion.

I remember the first time I met a Transgender person. I knew them all their lives, however, I didn’t meet them as who they were inside until the last year because they hid it out of their fear of how we would react. They were family and my reaction when I finally knew, was love.

I wasn’t always tolerant of any of this. I would say in the past ten years I have evolved after a long hard look at myself, what I learned as a child, what I learned as an adult, and what ideals were actually chosen by me to believe, or what was planted in my head without thought and question and that included my religion and my belief in God.

I grew up in a religion that told you to believe and not question. I did that but was always silently not quite sure about what I was being taught. I came from a family where my mom was Catholic and my dad was Protestant. I was told I would go to hell if I believed or changed religions. I was never allowed to go to my dad’s church because it was a sin. We could go for the fabulous church dinners but never for the services. I don’t remember how we worked out attending funerals because we did do that when relatives on my dad’s side died. I wondered how all my relatives on my dad’s side could be going to hell because they were such good people. I wondered in my later years why would my mother marry someone she knew was going to hell because she really believed that. I finally did attend my dad’s church, for his funeral. How sad is it I missed all the years I could have attended church with him when he was alive if it wouldn’t have been for those preconceived edicts from my church at the time? It makes me very sad to think of that.

When I finally changed religions, my mother, to the day she died, told me I would go to hell and when she was in her dementia state she told me she should have disowned me when I changed religions.

I had a good reason for changing. I wanted to go to church as a family and when we got married the priest that presided at our wedding told my husband two things that really stood out during our counseling. The first was that he shouldn’t join the church because they had enough bad Catholics, and the second was that the Vikings were ***** rich and I can’t mention the racial slur here. That cemented my decision. I didn’t feel a man of God should speak that way of another race, or without knowing my husband, make the judgment that he would be a bad Catholic as I knew how strong my husband’s faith was having been through what he had been through in Viet Nam and being raised by a mother who had a strong faith.

I wish I could say that was the moment when I started to question what I totally believed in my life, but it wasn’t the aha moment you might think. It is moments over the years of questioning, experiences, and taking a hard look at myself that has gotten me to old age, and not without many mistakes and acts of prejudice that I didn’t think of as prejudice, and am ashamed of today.

I remember a former Catholic school member who became involved in a cult. This was one aha moment that began my questioning. He came to speak at my church to give us a little parenting advice. At that time I had two young children. When I heard him speak I asked him what I could do to protect my children. He answered, “Make sure they know what they believe and why they believe it.” I know I thought to myself, how can I teach them that when I don’t know what I believe totally either.

Life continued on and I worked on that advice but I switched to prejudice on a different front. If my children friended someone who didn’t have a good reputation I would not let them hang out. I will tell you now that it is the worst advice I could have given my children. Instead I should have welcomed those kids into my home and got to know them. You see, I listened to what everyone else was saying without giving them a chance and not making up my own mind. I am ashamed of that reaction and I try to do better now.

I began to notice in small ways the way prejudice seeps into our lives, even tiny little nudges in my own life.

I remember being told by someone I loved like a daughter, when she found a new religion, that she could no longer be in touch with me because I didn’t believe like she did. That was thirty years ago and to this day we have no contact, though I have tried.

I remember being told by a church council member when I gave an opinion on a decision waiting to be made to allow an LBGTQ support group to meet at our church, that I didn’t give enough money to our church to have my opinion count. My opinion was that if people felt the need for this group we should provide a place, but others did not feel that way and it was denied.

Recently a friend was invited to a girl’s get together. When asked if she could bring me she was told I wouldn’t fit in. I suspect because of my views on many of these subjects along with politics or maybe they no longer like me as a person because I do state my opinions and do not go along with the crowd.

I remember a letter I received from a reader when I started my column telling me how ugly I was and how I was ugly as a child and that I never had any friends. I kept the letter to remind me to try and never be like that.

In no way have I experienced what other friends and family have experienced because of their race, gender, or religious affiliation. In our culture, we seem to overlook the little slights that are there every day and accept them without thought. Little judgements in our own lives that are directed at us or those we throw out to others in the world erroneously that may pave the way for bigger ones

You might now be wondering or saying, “Get to the point.” It is this. I am a sum total of the parts of my past. I had prejudices I didn’t know I had until I was confronted with them. I have prejudices that are still there but I don’t see, especially if I don’t question what I am feeling or where those feelings about others or events came from, or why I make decisions that affect others’ lives.

I thought I knew what I knew until I didn’t, until life and experiences changed my perspective. I would have missed wonderful,caring relationships if I wouldn’t have been confronted with issues I was uncomfortable with, never given them a chance, and shown a different perspective.

This is my story and why what I believed has evolved over the years. I can’t imagine what life would feel like now if I hadn’t questioned, had held on to my rigid views, and boxed myself into a tiny world where I stayed in my comfort zone and there was no growth.

I can only hope that I can keep growing and learning no matter how old I become. I can only hope I still work on those prejudices I have buried inside of me, some that I see, acknowledge, and are working on, and others that will pop up as the world keeps changing. I admit I still judge harshly especially when it comes to hate and discrimination. When I feel judged by others I judge them back. I am a reactor and that is my first reaction. I boycott establishments where I feel employees don’t show respect for others by not wearing masks. I stay away from venues where I feel there is more judgment than welcome. So I too am guilty of the same thing I accuse others of. I know it’s not right but those human emotions are right there under the surface ready to rise up at any moment.

There is not an easy answer for me. Perhaps as in other instances that I mentioned, my perspective will change because of experiences as I will keep questioning and searching, and looking inside of myself to know what I believe and why I believe it.

I am not trying to change your mind on anything here, just sharing my story in the hope that during these challenging times you remember the words of my old school friend. “Know what you believe and why you believe it.” And also these wise words, The right decision is made out of love, not fear. —spiritual enlightenment