Tag Archives: caregiving

Don’t Be Mad

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I have a soft heart. It may not seem that this brash, loud person is vulnerable. A friend whom I love, who is occasionally abrasive, but a tell -it-like -it-is person, keeps a part of herself hidden. She and I are alike in that we seem to be extroverts, but I found I’m really an introvert pretending to be an extrovert and always out there. We have loud personalities. We take up causes. We have loud opinions. Hidden underneath that out-there personality of my friend is one of the softest hearts I know that gets hurt easily. She keeps that hurt hidden.

Going through the transition of my husband moving into memory care has brought much soul searching. I’ve never lived alone. Acknowledging that I’m scared is hard. It’s a secret to be kept inside and I realize over the years, especially the last five, I have run on fear. Fear of upsetting the person I lived with, fear of upsetting my children. That fear came out of me as someone that was always whining, asking for help from my family, and in desperation it came across to others as a person to stay away from because I wasn’t pleasant to be around. By being opinionated and verbal about issues that weren’t mine, and taking up some other cause, I could hide my fear or put it out of my mind for a short time. My behavior distanced myself from people I love.

I was breaking inside but on the outside I was pretending, trying so hard to be this I’ve got this person to those around me that weren’t family, this social person, the perfect grandma and good friend. And I complained and cried. Why weren’t family coming home more often to see us and help, to ease what was happening. The Pandemic caused isolation and loneliness but when it was over the visits still were sporadic. I knew it was because of busy lives, but still I suspected it was the drama our life represented because of the memory loss, and me being completely emotional and irrational. Maybe emotionally they couldn’t handle what was happening either. Don’t get me wrong, if it was an emergency they were there immediately for us. Now having some quiet and alone time I pretty much accept it was me that kept them away for the small things, for more frequent visiting.

I have spent the major part of my life wanting people to not be mad at me. I can just hear Dr. Phil saying, “And how’s that working for you?” Looking back I tried too hard, came out as over the top, giving mixed messages and being wishy- washy in my actions. I am always being told by my family , “ Make a decision.” And yes I have been very outspoken. I will tell you right now that those who are caregivers 24/7 don’t think rationally either. They are too caught up in the drama of their lives.

I now see it wasn’t the situation, but me and my crazy personality that made close ones stay away. And it was fear that made me act that way. Fear of being rejected, of making the wrong decision. Fear that I would never get out of the nightmare, and fear of saying I felt I was living in a nightmare, not being able to say those words to anyone because the person I lived with really was living a worse nightmare, so what he needed is more important. His fear was there but not expressed as fear, but anger. Who wouldn’t be angry? So I felt my fear was not rational because I was fine, the healthy one. .

I suspect I am not the only caregiver that doesn’t show who they are to their families, doesn’t express their true feelings, and what they do express comes out wrong because the stress turns their ability to verbalize their emotions, making the words irrational. Not only are we fearful but angry. We keep that inside too. Caregivers compromise who they are, withhold their anger and sadness about the situation to keep the peace, and not have their families upset with them. And yet it isn’t working.

Family is love and that love doesn’t leave because of discord, but it may be hard for all of us to remember that. Our kids live in a world today that is very stressful. They are busy just trying to live and excel and don’t have time for all the drama we may bring to their lives. They have learned to set boundaries to protect themselves. And because of that, we as parents may not understand. Us oldsters were brought up in an entirely different world. We didn’t know about boundaries and stress reduction. We didn’t have media telling us to protect ourselves by staying away from toxic people. The mental health help was not there.

The two worlds of the younger generation and the older generation today are having a hard time, in some cases, understanding the dynamics of the world growing us up differently.

My generation didn’t know it was acceptable to put the toxic people out of our lives, even if they were family. If my mom would have known that she might have put my grandma out of her life. My grandma was always yelling. You can ask her grandkids, we never remember her smiling, but because she was family she was taken care of until she died. My parents sacrificed a lot to take care of parents and brothers because that’s what you did in the olden days. The nursing home and mental health weren’t options.

My mother wanted to teach in Alaska. She wanted to travel the world, but gave up her dreams to stay home and take care of her mother. Others did the same. Family came first. I always thought that was why she was crabby, now I surmise she was crabby from Caregiver burnout, not because she sacrificed her dreams. I did not understand how hard her life was. The generational difference. But the one thing I understood was that family was everything above work and even money. Both my mom and dad financially helped out family members when they had a need. Occasionally supporting them financially until they could get back on their feet. They helped both sides of the families. They helped friends. I still have my dad’s billfold with all the IOU notices from people he lent money to. Their brothers and sisters were the same way. Before her death my mom told me what she had wanted to do with her life, but that she did not regret giving up her dreams to help her family. I believe that. It was the caregiver burnout that caused the crabbiness and I didn’t understand. It was a different generation.

I think my generation has a hard time understanding the difference of today’s world and where the shift is. So we hurt, we hide it and we don’t make sense to our kids because they don’t understand that our expectations come from our past. And we don’t understand the world they live in and how stressful and time consuming the reality that is their life is.

We have a communication gap between what our hearts feel and what we say. If we choose to share, how we say it because of our emotions, it comes out wrong. Emotions that we keep hidden and don’t always recognize ourself such as fear.

Caregivers have so much fear hidden inside of them. Their world is changing. The people that love them don’t always see that their needs are getting lost in the abyss of whoever they are taking care of. A caregiver wakes up in the morning, if they’ve gotten any sleep, and puts one foot in the front of another and takes a step, and occasionally that one step is all that is holding them up. If you know a caregiver ask them what they fear. Do they feel their security is gone and they no longer feel safe? If they are that tender hearted person with a brash exterior, you may have to read between the lines because if they let all the hurt out that they are hiding, they might break. Or they may be that soul who doesn’t want to make anyone mad for fear they will disappear from their life and they will be totally alone, and so the decisions or words they speak may come out as complaining or whining, but really it’s a cry for help, for you to help them be who they are. And love them anyway.

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

Photo by Jan Tancar on Pexels.com

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.