I took a break from Facebook yesterday. With everything going on in the world right now I had too. My soul hurts. This morning, while I was showering, I had this flashback of the person I was but have not been for a while. I cried. Social media is like a drug. It is a drug no different than heroin or cocaine. It changes you. It makes you feel different. Just go through and read posts and then read the ensuing comments. Keyboard warriors. See the hatred spewing out of the minds of others. People I consider my friends. People I have a relationship with, a past. Who are they? Where did they go? Is this who they really are? Social media makes it too easy to stop discerning real versus fake.
Where did I go? Is this who I have become? Turning inward, I realize it is time to intervene for myself. I know what I believe. I know how I feel. I know what kind of person I really am. This is not about politics. This is not about being left or right. It is about being centered. I heard once that the truth lies somewhere in the middle. I am the middle. My truth. I feel called to shared this today instead of my caregiving journey. It is still my journey. The person I am caring for at this moment is me and not my mom.
Caregiving can feel very lonely and there are so many feelings and thoughts that can get into your head. I visited with my counselor yesterday and discussed all the feelings I experience daily. My counselor is also caring for his elderly parents and we shared our experience and feelings with each other. It was so validating!
Some of the things we discussed were feeling guilty when you feel annoyed or frustrated with your parent, not knowing how to respond to a parent when they are feeling agitated. As professionals, we feel we should be able to have all the answers and tools. The difference is that when we are working with a client, we do not have the emotional connection with a client like you would with a parent. That emotional connection is very important. With a parent, you have the relationship you always had with them. If it was a loving relationship, then your relationship at this stage is most likely going to be similar. If your parent was not loving when you were a child, they are not likely to suddenly become loving in their old age. I am in the second example. My mom was not loving and caring when I was growing up. I am now caring for her and trying to give to her what I did not get.
This is a very difficult dance. I want to be the loving daughter. I want to get along with my mom. I want my mom to be happy in her later years. I know my mom wants to be happy. I know my mom wants us to get along. I am also sure my mom wants me to be happy too. All of this is a journey. As in any journey, there is beauty, there are rough roads and there are smooth roads. Sometimes there are extremes. Especially when you throw mental illness, depression and dementia into the vehicle! Its tough when you feel like you are a lonely driver on a long deserted highway. After talking with my counselor, I realize that the highway is not deserted. I have a whole tribe of caregiver warriors on this path. I just need to find them.
Trekking this journey during a pandemic does throw a lot of wrenches into the mix. Where I live, Senior centers are limited to having online activities in lieu of gatherings for our elderly, which is hard for our seniors who are not tech savvy. Support groups are available online only. I recommend getting involved in a support group even if it is only online. You need to understand and believe that you are not alone. There are a lot of others out there going through the same things that you are. I know I am going to do this. I realized how valuable sharing your journey with others can be to help you feel you are not crazy, you are not a horrible human, and you can do this with better piece of mind.
I have pneumonia so will probably not be making any posts for a few days….I’llv be back!
Mom has always suffered from depression. She has always had mental illness. She was diagnosed as having schizoid tendencies. When I was a kid, she attempted suicide twice. She has been through a lot in her life. She was gang raped, she was forced to have an abortion by her mom, she lost her dad when she was 19. She married my dad at 16 and started having kids right away. My dad blocked any attempt at her getting help. As a child, I just remember my mom was always either locked in her room or lost in a book. My dad was an asshole to her during the early years. He belittled her constantly, making fun of how she spoke, how she looked. These were serious hard times for her.
On the flip side of all this is 3 children who were being raised in this environment. I cannot remember a time she was loving or affectionate to my brothers or myself. She was not there for me or my brothers. I came to her and my dad for help when I was being molested by my brothers. She told me “boys will be boys” and did nothing to help me. During my teenage years, there were 18 different pedophiles who sexually abused me. All before the age of 15! I never turned to my mom or dad for help. When I turned 15, I entered into a long term abusive relationship. My parents walked in on an episode of abuse and did nothing to help me and then later encouraged me to marry him. When I married my abuser, he tried to kill me. I tried to leave him. My parents shamed me and told me to go back to him. I did, for a week. I faced everything on my own and made a decision to walk away and not look back. When I had remarried and had kids, I found myself in another bad relationship that was destroyed due to drug abuse by my husband. I divorced him because I did not want to raise my kids in that environment. My kids were my driving force. I did not want them to ever feel I would not protect them. I cannot fathom not protecting your kids. Those times were tough and I was left alone to deal with it. No support. It was hard.
Both of us have some deep wounds. I sought help and have a lot of insight into my traumas. Is it too late for my mom to get help? I would imagine it would be a mute point at this stage. She would not remember any of the tools given to her. Caring for someone who was never there for you is not easy. I am learning as I go. Some days I take so many steps back that I wonder if I am ever going to get ahead or on top of this caregiving thing. I have compassion for what my mom has been through. Things that were not her fault. We ALL go through things. We ALL have choices. I am making a choice to do this. I could have turned away from this. In my choice, I also have to find a way to be true to myself and not undo all the work I have done to recover from my traumas. I have to love me harder.
In all my crazy life, I found a man who God knew I needed. My husband is a dream come true. He knows what I am going through and knows what I need to take care of me. He is my light in all this crazy darkness. This is what all my life has led me to and I am so forever grateful. Thank you God.
Just a short post to start your Monday. This is probably the funniest thing I have ever experienced with my mom. We were both sitting across from each other in the living room. I was on my phone watching videos and mom was watching TV. I may have passed gas, kind of loudly. I glanced over at my mom and said “Excuse me.” My mom gave me a look of confusion. She then said “I thought that was me.” I then gave her a look of confusion. “Did you fart too” I asked? Mom told me she felt something moving in her tummy. “Well, that one was definitely mine” I quipped. We both burst out laughing at this moment. One of those tears streaming down your face type of laughs. I love these moments.
My mom and I had a breakthrough. Hallelujah! This journey has had a lot of lows so far while we are learning how to live together in very different roles. There have been a lot of tears. I hesitate to share on some days because as a professional, I am suppose to have it all together. I am supposed to have all the answers. I am human. She is human. We are a bunch of humans over here doing human things. No saints in our midst! But every little breakthrough…every little good moment is a cause for celebration!! My mom and I had a talk about some very real things. Lucid moments are cherished. I felt I had my mom back for a short time. Anger has diminished. We are getting along people! Today is a gift.
Most days lately, I feel like I am one step away from losing my mind. The stress of caregiving is no joke. The truth, to be brutally honest, is some days I really want to buy my mom a ticket and send her to my brothers. I love her and I honestly would never do that, but that is how I feel some days. It is frickin hard folks! Every damn day I wake up and wish I could stay there for the rest of the day. There is no place to hide from this. Thank God I CAN go and leave her for small amounts of time so I can go to the store. I know the time is coming that I cannot. But for now, those little errands save my butt a lot of the time.
Today is the first day since she moved in with me that I actually did not wake up with that sense of foreboding dread. I actually allowed myself to lie in bed for an hour just relishing in my good feelings. Power of positivity. Yesterday I found an old post about how your focus leads your thoughts. My example was the lenses with which you view your spouse. If you are hyper focused on all the things about them that “drive you crazy” or things you just do not like, then you are not going to like your spouse. That is going to drive your relationship. If you switch your focus to looking at all the things you love about them, then THAT is how you are going to view them.
I thought about this in reference to my mom. I have a lot of years of baggage in regards to her. I did not realize how much she has affected my life negatively. So much baggage. So much anger. I seriously have a hard time liking her now. But, she is old. She cannot go back and change anything in the past so I cannot expect her to wave that magic wand to fix this. It is up to me to find something in her that I can like. She really loves her dog. She really loves my husband. She really loves my children. That is a start.
I also look at myself. I want to feel better. I do not want to be angry. I do not want to feel stressed. I do not want to feel guilt about my feelings. So what I think about is the direction I will go. I need to replace the negative energy with something positive. Go for a walk when I am able, write this blog, clean something, meditate. Do not replace the negative energy with sugar cookies. That does not make you feel better. I promise it does not for the long term. (Speaking from experience). I am the only one who can make this a better experience for me, for my mom, and for the rest of our household. I cannot control the other members of the household, they have their own role in this. But the dance my mom and I do has a profound effect of the rest of the members.
So today, I chose to start my day differently. Today I choose to do something different. One step. It just takes one step of doing something different to start a new momentum of change. And give yourself grace! Your feelings are ok! I hope you have a happy day today. We will get through this today.
Caregiving is the hardest job you will ever do. Hands down. I work as a Hospice Social Worker, I see how burned out these people get. Now I am in this role and honestly, I had no idea how hard it really is. I know it is also hard for the ones who are being cared for. I know they are dealing with the loss of their independence, loss of what is normal for them, their routines. There are very real feelings of “I am a burden to my family.” Throw memory issues into the mix and it feels like there is no way you are ever going to get the hang of this because every day you are trying to teach/remind the same things over and over. Things like which light switch turns on the kitchen light? Where are the cups? You washed your hair today. You need to wash your hair because it’s been a week. You have to eat more than crackers. You do like eggs. You eat eggs when I make them and you say they are good. Knowing when you should not remind them of things so they do not feel frustrated and confused. You should be getting the picture. It is hard.
I am noticing more and more that my mom is so defensive about every little thing. She drinks at least 3 cups of coffee a day out of our Keurig. We ask if she will keep it filled since we only drink 1 cup each. (She gets upset if she doesn’t have things to do to ‘help out’ so this is her job. We see it’s empty and ask her to fill it and she gets really defensive and snaps “I did put water in it.” Before or after your 3 cups?
My mom is a challenge. It feels like I am really starting to get to know her. It has been 38 years since I lived at home with my parents. Over the past 38 years, I have talked to my mom regularly on the phone. She was always happy to talk to me. Living with her now is a completely different reality. It is hard. I feel like asking her, “Do you not like me anymore?” I invited her to go for a walk with me yesterday. We got 1 driveway away and she said she was cold. I asked her if she wanted to go back and she immediately got defensive and started griping at me. I tried to tell her it was ok, and then she said “I just feel like you are unhappy with me because I am cold.” I was not mean or hateful. I was kind and spoke softly to her. I am not sure why she feels I was unhappy with her. I get frustrated with her but I am not evil. I would never get mad at her for being cold.
This morning she was telling me the her dog got trapped in the hallway because he could not get back through the gate. I told her “We need to make sure that gate gets latched so he can’t get in there.” She immediately got defensive and yelled “It wasn’t me! I always latch it!” She was the last one to go through the gate last night.
She was ratting out my stepson, saying he put a bunch of towels in the bathroom. (Later we found out only two were his, the rest were hers) She showed me. Afterwards she shut the bathroom door. 5 minutes later she thought my husband shut the bathroom door and was concerned about it. He told her he shut our sons door and and did not go anywhere near the bathroom. I mentioned she may have just did it and did not remember. She blew up. She started screaming at me; “I DID NOT SHUT THAT.” First off…who cares about the towels and secondly who cares about the door. But it set her off and she was yelling and screaming at me. My husband, bless his heart, came to my defense and told her to stop yelling at me.
This morning she told me my dog found a little piece of egg on the floor that I must have dropped. It was near her chair.
Why is she this way? Who is this woman? I do not know what to do with this….. Some of you may think I am a horrible person because she is elderly and it is not her fault. You are right. She is elderly. She has dementia and it is absolutely not her fault. The other side is that it is not my fault either. Some of you may totally understand where I am coming from. I am on a journey right now with my mom. I one hundred percent think this is not the best option. I brought her into my home because she absolutely cannot live alone anymore. We are in the middle of a pandemic. If I put her in an assisted living, she would be alone. She would not be allowed to have visitors. I cannot do that to her. Writing this blog is probably the only thing keeping me sane right now. The process of writing helps me get everything outside myself so I can see it more fully. Please understand that this whole thing is a process and a journey. I may feel one way one day and a different way the next. I hope that my journey might help another see they are not crazy or alone. This is hard. This is not pretty. It is messy and confusing. There are no awards. Just know, your feelings matter. Give yourself some grace.
Grace. Unmerited mercy (favor) that God gives to humanity. Someone does not have to earn it. It is just given. God gives us that every day. We are all sinners. None of us are perfect. I am definitely not God. Giving Grace is hard to do. Every day I am stressed to the max. My mom is testing me at every turn. I am reliving childhood. None of the good parts! My mom is so critical. Every single thing I do is met with some sort of observation or criticism. Not exaggerating. I made her scrambled eggs this morning. Instead of thank you, she said “You sure made me a lot”. Well then throw them away. Mom acts like a child. She is mad at me for moving her in with us when it was her idea to begin with! She is sad. and I do understand but I am feeling so tired. I had a completely different picture in my head when I thought my mom should move in with us. I thought we would get to enjoy each other.
You may or may not be aware of this but when you talk to your parents on the phone daily, you do not get the whole picture. I thought everything was ok. I knew we were getting closer to her needing some help but I did not know we had already passed that mark. They are able to cover up and make it seem like all is well. “Oh I am eating well, I had this and that. I washed my hair on Tuesday.” Now, she washes her hair and then later that day says “What day did I wash my hair?” She eats crackers every day for lunch, and for snacks. Just crackers. My dog comes over to her and begs to be picked up. She says “Oh she has never done that before”. My dog does it every day and mom says this every day. I will suggest spending a night or two with your parents every now and then to get a better picture of what is really going on with them.
It’s hard because I thought we would enjoy spending time together. Instead I find myself angry with her the moment I wake up. Angry and hurt because I am not getting what I needed from her as a child or right now. She was never there for me growing up. I was being molested by my brothers and my mom said “Boys will be boys”. She now says it was my dad that said it but that is not my memory. I was in an abusive relationship and never felt I could count on them. As a matter of fact, when I left…I was totally on my own. When I had kids and got divorced while being unemployed, I could not count on them for support. I struggled every day but I made it. I survived. Everything I have ever been through in my life, I have gone through alone.
I feel I really need to just suck it up and do what what I need to do to care for her. I need to find it in me to give her grace. My mom has mental illness that has remained untreated her whole life. I would guess Bi-polar. She just starts bawling for no obvious reason and tells us she is such a screw up and then five minutes later it is like it never happened. Nothing we do or say makes any difference. How does counseling work for someone who cannot remember a conversation 5 minutes after it occurred? My guess is it will not work. Maybe medication. I am working on finding a doctor for her here. I know I need to do something for my health, for my sanity. This is a living hell, I am not going to lie! We are in the middle of a pandemic. If I send her to live in an assisted living we would not be able to visit her. She would be all alone. I cannot do that. So this is what we have to do. So if any of you have seen Grace, please send her this way. I need Grace for myself and I need Grace for my mom.
So I did a thing…I moved my mother into our home. For those of you who have done the same….this is for you. Let me first begin by saying I do love my mother. In all her ways…I love her. The reality: She is driving me nuts. It has only been a few weeks. It feels much longer. I asked my husband this morning, “How many years has it been now that she has lived with us?” My mother has dementia. Maybe even Alzheimers. We have to find her a doctor here.
I am under a microscope daily. Every minute of every day. She watches me. I go into the kitchen to throw my lunch into a bag before I leave to see patients. I hear her speak, “What I wonder is why you leave the left side of the refrigerator open?” Mumbling under my breath I say, “Because I am an adult and I do what I want.”
I try to include her in our activities. My girls and I were going to the local hobby shop to buy Christmas decorations. Both of my daughters have recently married and moved into their own homes. My mom has always loved “Santa’s” so I thought it would be fun for her. I thought she would enjoy hanging out with us. She rolled her eyes at every single thing I put in my basket. She “huffed and puffed” and complained the entire time while exclaiming “I just don’t understand why you do this…I am not into decorating and this is not my thing.” When we got done at this shop, I took her home before I moved on to the next. She moaned and complained about me taking her home. “I like getting out…I can just sit in the car.” Um. No mom. I can’t with you today.
Because of the COVID-19 pandemic, I have to “office” from home. Luckily I have an office at home that I have fixed up. Every morning I get dressed, put on my name badge and head into my office with my coffee. Even if I am staying in and not seeing patients. My mom wears her slippers all day. She shuffles around the house in her slippers…on the wood floors…whoosh whoosh whoosh. I hear that whoosh whoosh whoosh as she approaches the doorway to my office. I sense I am being stared at. Mom is just standing there in the doorway. I keep typing and wait for her to say something. She does not. I finally have to say “Yes mom, can I help you.” She stands there for a moment and says “I just wanted to let you know I need to go to the bathroom” or “the dogs are at the back door, should I let them out” or “I don’t know which one I use to turn on the kitchen light.” This is where I face-plant into my hand. This happens every 30 minutes or so.
We bought her all her favorite frozen dinners and soups so she can pop them into the microwave and maintain independence. Every day I ask her what she ate for lunch. “Crackers.” She ate crackers. So for breakfast, she ate a breakfast cookie, crackers for lunch and an Ensure. She eats whatever we eat for dinner. “Mom…you need to eat something else…you can’t just eat all those carbs.” This is the woman who tells everyone she meets she has hypoglycemia.
I am saying all this because it is stressing me the heck out. But I am also saying this because it hurts me to see her this way. She is my mom. When did she become like a child? I had no idea she was this bad until I moved her in with us. And I am also saying this because I feel like a child who is constantly being criticized. Being a caregiver is not for the weak of heart. This is not just hard on me. She has uprooted her whole life to move in with me. It is hard on a normal day to do normal things for a person who is confused and forgetful. Throw in the mix a new location, new routines and people in your space every day. She is struggling. I get it. We are all learning. I am learning patience and grace. She is learning how to be in a new place with different stuff. I want to say we will get there. But there is no destination. We will figure this out I guess.