A Season or a Reason

  I’ve tried to analyze the argument. It was so strange to me. I’m not sure I understand what happened? At this point, it’s been several weeks. I sometimes dream of a meeting and talking it out, but for me, it’s too late. The trust is gone. For me, when trust goes in a relationship, that is the end. 

I’m not angry or upset, actually, I’m fine and I wish her well. I will always care about her. 

I appreciate that saying about people coming into your life for a reason, a season or a lifetime. I believe everyone has a purpose & you learn from every encounter, whether short or long. 

Sadly, in this particular friendship, I often had a nagging underlying feeling that I had to be careful. I felt like I had to watch my words, it was work.

I’m sure the most rewarding relationships I have are the genuine ones. The ones I can speak my truth. It may be rare, but those relationships are the ones I most cherish. Conflict is inevitable, but if met with respect & a desire for a deeper understanding, conflict can be seen as a privilege. Conflict can be seen as a time to grow in understanding. 

I know I am a good friend, I know I am a good person. I know I never purposely hurt anyone. But, I also know I am going to make mistakes. I am going to mess up and accidentally hurt people I love or care about. 

In her eyes, was I cruel? In my eyes, I made a mistake, but admittedly, I didn’t understand the depth it. For me, in a trusted relationship, it would have been talked out. I thought I deserved a phone call or to set up a face to face immediately. Instead I got a text to stop contact & many days of silence. Silence seldom heals when in an argument. For me it creates doubt and time to stew. For me, silence tells me I’m not important enough to work out a disagreement with. For some, it is a deep ingrained way to deal with conflict. Silence is meant to hurt. Silence makes the other person feel worthless. Maybe that’s not the intention, but it comes across that way. Cooling down in a disagreement can be helpful and sometimes it is needed before healing can take place. The balance of that is tricky though and can backfire for some relationships & people. If this is the only way to deal with conflict or the silence lasts too long, the relationship may never heal. If silence is only used to avoid the deeper truth and the conflict is never openly discussed, how would you heal. Silence over and over again will chip away at a relationship. Stewing, instead of speaking your truth, will create much doubt. 

That is what happened for me. Silence created a feeling of doubt, a feeling of worthlessness. Then when the silence was finally broken, I felt chastised. I didn’t feel like I was heard or respected. Her anger still seemed too intense to move forward, so I gave up. Friends shouldn’t have hierarchy. A healthy relationship recognizes each other’s feelings. 

Something I recognize in my relationship with Mark, is a deep respect for each other. Without that trust, we could never have the depth of love we have. I believe, when trust and respect are there, love naturally follows. 

Ten Months Later

 It wasn’t even 4:30am when she woke me. I had hoped to sleep a little longer but that wasn’t going to happen. Teale’s is 22 years old and still wakes much too early. I dreamt of a teenager that slept until noon, it never happened. She’s always gotten up much too early and gone to bed much too early. We’ve tried keeping her up but that has never flipped her, so we’ve given up and let her go to bed before 8pm. On the rare occasions we need her to stay up later, she still gets up too early. Then, the whole next day is a nightmare, because she’s tired. 

Life with Teale has been anything but typical. Teale still lets us pick her clothes everyday. She needs help with dressing and all hygiene. We prepare, cut and serve food. Teale takes about 30 pills a day, three times a day and we monitor her taking them. 

Her care is constant and independence comes in small victories. Lately, in COVID we’ve felt stuck and stagnant. It’s tough to understand the impact this has had on my life, on the life of my family. I’ve been the caregiver, almost exclusively on weekdays. Mark sandwiches the days with caring for Teale before and after his workday. I am grateful for this, if I was “on” for all that time too, I would surely burn out. 

We used to call vacation weeks off of school or program, “survival weeks.” It was truly my job to just survive them. Get the girls through and hopefully not “drown” while caring for them. Mark had few expectations of me in those weeks off. If I made dinner and kept up on the dishes it was a victory. If there were not a rage from Teale, it was a victory. If I didn’t melt into a puddle the second he appeared from work, it was a victory! 

Life with Teale has changed so many times. She has had stages where driving her around, almost constantly was the the only thing that brought her peace. Her pool, in warm weather, has often been the most comfortable place for her soul to find contentment. Sadly, our pool months are short lived in Upstate NY. Teale has had times where being out and about was her only peace. We would try to find things to do out of the house, but often we were restricted by “hours of operation.” Malls not open, YMCA not having free swim hours, a museum closed. It was extremely difficult to keep her soul context. 

Today is Gwenn’s 18th Birthday. It also marks TEN month’s home in COVID. My life, my family’s life and the country’s life all changed on March 13, 2020. Ten months later, here I am, still home, trying to keep my family safe from this dreaded sickness. Someday, I will look back on this stage and marvel at the fact, I did it! It’s really nothing short of a miracle, with little support or the ability to fill time with places to go, I’ve survived 10 months. So here I am, documenting the sheer grit it has taken to stay home in COVID. Keeping my family safe and staying mentally well, honestly, if I think about it, it’s unbelievable. So today, I celebrate Gwenn, & I celebrate my ability to not only survive, but also thrive in these crazy times. Ten months of “survival,” someday I will wonder how I did it, but for now, I’m just grateful it hasn’t been the nightmare it could have been. God Bless everyone & here’s to a brighter future, without COVID threatening us all. 

Unanswered Questions

 Unrest, irritable, anxiety, this morning without any words, she just seems off. She’s rocking on the couch & rewinding her iPad constantly. Teale’s worried about where Sage, our newest cat is. She stresses about the cats getting in her room. This is one of her many strange behaviors we can’t explain. Teale has always stressed over the cats. She seems to think they have magic powers to get into her room and she doesn’t like them in there. Mark and I think back, has she gotten her medication the last few days? It is unusual for us to miss a dose, but it happens. Boxes filled for morning, 3pm and before bed seem complete and have been taken. She started a new medication a week or so ago, that may be kicking in? Maybe it isn’t working and she’s uncomfortable? It’s a guessing game always, especially with a new medication. Teale can’t give us insight on how she feels. She just seems off or ok. When she’s off, we guess, sickness, hurting, emotional, mental swing??? It’s endless and frustrating. COVID has changed much. She misses friends and her programs. So now we guess even more, because COVID has added different factors that could be causing unrest. Taking a chance and meeting up with Teale’s friend’s, has been balanced with not taking risks. She needs social interactions but COVID in our home scares me. Mark has some serious medical issues along with Teale. We talk about how to help her and decide maybe having a friend come over is the answer? Maybe she’s just bored? Aren’t we all, at least a tad bored? I know I miss my friend’s and a life outside my home. So, of course I contemplate how this all makes Teale feel. Prayers for answers is often all I have. Pray for the mentally ill, isolation is a tough place for them to be. 

Vulnerable

 As I tried to talk, the tears came. I hate that. I hate feeling vulnerable and crying on Teale’s psychologist. I want to be strong, share the issues with her in an unemotional way. I hope to get insight and when I’m an emotional mess, I feel weak. I don’t see myself as weak. I hold together through so much, but I do have breaking points where the pain finally hits and I blubber. I had a few of these moments recently. Teale’s moods had shifted and I was feeling fear. Fear that we were going to experience the physical explosions. Fear that I wouldn’t be able to control her in them. So far she hadn’t gotten physical, but the rages were bringing up my PTSD. The triggers didn’t make sense, so the sudden mood shifts brought fear. Fear I couldn’t say anything to her. Walking on eggshells in your own home is exhausting. People who live like this, get it. The not knowing what will make someone blow. The tiptoeing around your words, scared you’ll say the wrong thing. It gives me mental fatigue. The psychologist listened as I cried. As I shared how difficult this all is, being stuck home in COVID with Teale. She thought carefully before responding. Her words chosen with compassion, “You are doing the best you can.” That’s all I needed to hear. Like a child needing praise, I needed validation that I wasn’t the cause of Teale’s unrest. I needed to be seen and heard. I needed a pat on the back. I need to know that someone, anyone, saw how difficult this has all been. So if you are like me, struggling to see the good in these crazy times, just remember, “You are doing the best you can.” 

The Socks

 This morning, with Teale, has been rough. Christmas coming, the realization we are not going to see cousins, maybe she’s not feeling well, sick of COVID isolation, or maybe she didn’t sleep well... The wondering is endless. As Mark often says, “That’s the fun thing about Teale, we will probably never know.” 

I picked a pair of snowman socks this morning for her to wear. That’s what started it. I laid them out, and said, “Aren’t these cute?” Sometimes it feels like Teale  just needs to be mad. I often wonder if it’s some sort of release she needs? After my comment about how cute the socks were, she snapped my head off, and continued to go downhill, even though I immediately said she could have different socks. For some reason, this morning, it hit me how stupid it all is, how frustrating and how I’m just tired. I’m tired of walking on egg shells around her. Not many know the constant stress. The constant waffling in moods. How we can set her off with no understanding why. Was is it really the socks, no... I understand it’s her bipolar, but, like I said, I’m tired. For 22 years we’ve been living like this. We watch our words carefully, our tone is as even as possible at all times, but especially when she’s going downhill. Our getting mad just makes things worse. She will go into a full-fledged rage and that can last an hour, resulting in her biting, hitting, kicking & breaking things... So we stay calm. We try to work through it. We have several strategies; walking away, talking to her, not talking to her, staying close by. Guessing how, and what will help her most in that moment is the game. I told Mark I’m sick of it, she’s 22 years old! Does anyone really understand how much we tiptoe around? Even in good times, it’s a constant struggle to make sure we’re staying even, to help her stay even. 

I just wanted to yell at her, I just wanted to look at her in the face and say ~ “Is this really over a pair of socks?” but I knew that wouldn’t help. So I complain to my husband, who does “get it.” I say I’m just exhausted, 22 years of constantly trying . She is still like a toddler who blows for no apparent reason. I talk out my feelings out loud. It’s no wonder we’re both unhealthy, the stress hormones going through us, at all times, must be intense. 

Mark took over, he worked to get her hair brushed & her different socks and shoes on. He was patient, as she continued to make things difficult. Several times he said, “Tell me when you are ready.” Teale would scream “I’m ready,” but then do the same behavior that prompted “Tell me when you are ready.” It was a game, over and over again, she would be throwing her head around, as he attempted to brush it. She was also trying to hit him, and she threw her shoe, but he persevered. 

The bright side of this is, we are a good team. Sometimes I have the patience to work through her behaviors, sometimes he does. Most of the time, we both do. But, we are human & we have faults. We’ve had times of our own meltdowns. Times we’ve lost it. This morning, I knew I didn’t have patience, so I handed her over. 

I’ve had a lot of long days in Covid, a lot of days of tiptoeing around her behaviors, and trying to stay in an even mood, myself. Maybe I just didn’t sleep well last night, or maybe the stress of Christmas, is getting to me too? Some days you just don’t have it in you. But that is the difference between my life with a special needs person & my life with my typical children. I can’t just tell Teale I’m sick of it and she’ll have to take care of herself today. I will have to pull myself together and persevere. At 22 a typical person’s life is moving forward. This is where we are different. We will be her caregivers for the rest of our lives or her life... which ever comes first. 

22

 22 came & went. It wasn’t unrecognized but it was more low key than usual. Teale was born December 9th, 1998. It was a day I never seem to “get over.” The grief comes & often it takes hold of me before I realize what I’m feeling. This year was different, we celebrated with just us & Beau’s girlfriend. Dinner, gifts, cake, plus many video chats and a visit from my sister & niece. It was “enough,” which if you understand Teale, is all I could hope for. She loves a big celebration, she’s much like me, her soul craves connections to lots of people. I enjoy this about her, she has brought so many to us. 

A few years ago, I just started taking Teale with me anywhere I went. Mark was involved in several bands and playing around town often. Instead of getting a sitter at our house, if the gig was early, I brought Teale along. She loves music, she loves her Dad, she loves being surrounded by friends. It became the norm to have her as my partner in crime. We would head out and listen to her Dad sing and play sax. Often Mark would be gigging with his brothers, this would make it even more special. Teale loves her Uncles & often their wives, friends or their children would also tag along. Seeing family and friends more often, really brought her much joy. Then there are the “regulars,” the music enthusiasts who come to many gigs. The fans who become friends and the friends who become fans. We often would have people at gigs who knew Teale, who knew her story and were kind and patient. Teale loves to be with people who appreciate her Dad’s music and who she could talk and laugh with. 

During COVID, the loss of this has hit us all hard. We miss live music, we miss family & friends. But, in some ways, the slower pace has done us all good. That’s why Teale accepted a lower key Birthday. COVID has brought us many losses, but it has also given us many gifts. A year ago I could not have pictured a Birthday celebration like we had, but in many ways, it was perfect. It was celebrated quietly, with those who know how difficult the journey has been. 

If you ask me what year I have loved in my life, I would say 22. At 22 I married the love of my life and began this journey. Teale will never have the same opportunity, so 22 is tough to swallow. It’s another loss, another year of in my face reality, that her life is somewhat stagnant. She continues to age, but the journey is still the same, Mark and I care for her. 22 for me, was the beginning of a beautiful adventure. My best friend and I growing together as a couple. Teale will never have a relationship like I’ve had, but, she sure has made mine stronger. 

Triggers

Sometimes I feel out of control of my emotions. I can feel angry for no real reason. I believe it’s mostly hormonal and/or sometimes a “trigger” happens & I feel “off.”

Recently, the trigger was Mark’s comment to me. I had worked in the house all day. I felt good about all I had accomplished. One of the things I had done, was to repot many of my outdoor plants for the Winter. I made my powder room into an inside garden. This was my girlfriend’s idea. She knows Winter is tough for me and COVID Winter would be even more difficult. I have loved my gardens, but upstate Winters can be brutal & it’s coming. 

I’m still home with Teale, to keep her safe, we barely go anywhere. Teale’s doctor’s, Mark & I have felt, because of Teale’s medical issues, it is best to not expose her to a lot of people. So, at this time, Teale’s  going to day habitation, has not been in our plan. Therefore, I’m going on eight months home, caring for her. 

Only two weeks ago, she started at a former respite program. I drive her there at 2:30pm & Mark picks her up after his work day. This break has been good for Teale & I. It’s a program I trust because she was in it for several years. The staff is great & she’s with a very limited number of people. She’s so happy to see her friends again! Right now, it is the only program we are comfortable with. Her doctor approved it & we are using this program as a stepping stone to possibly doing more. 

Anyways, I have done numerous projects during this time home because of COVID. I had to quit the job I enjoyed, as a Family Peer Advocate, at The Mental Health Association. But, luckily, because Teale is over 21 years old, I was able to get certified as Teale’s caregiver. The pay has been better than when I worked outside the home. When I worked outside our home, it was difficult for us to stay on top of all of Teale’s needs. Teale’s medical care is on me, she has many appointments to stay on top of. Plus, Mark’s jobs are our priority. We decided long ago, I would support his being the best him in both his day job and the music gigs he got. This meant, my job had to be extremely flexible. I needed days off for school breaks, doctors, or on a whim, just because Teale needed me. 

In COVID, Teale needed care 24/7, for months! I now get paid for 48 hours a week, certainly, it doesn’t cover all the hours I actually do, but it does help our income. With that income coming in, I, at least, feel validated. I care for Teale, I care for the household & I’ve been able to do numerous projects too. We are better organized & a tad less stressed, in that way. Of course COVID stress & being stuck home is different & sometimes intense... 

One thing that has changed, is Mark & my “dating or lack, there of.” Teale wakes me anytime from 4am on. By 8pm, both she & I are fried! She goes to bed & generally, I’m not far behind her. Mark & I used to take advantage of this time. Teale has gone to bed very early for years. Gwenn or Beau could be home with her asleep & we could sneak out, for evening dates! Since it has never mattered when she goes to bed,  because she ALWAYS gets up early, we gave up years ago & just let her go to bed by 8pm. Times we have kept her up late, we have found create a tough next day... So dating, after she was asleep, was an easy way for us to get time together. Another way we would steal time alone was to take days off from work together, while Teale was safely at programs! This way we had all day, we were refreshed and we could do things we enjoyed. 

Nowadays, our days are long, Teale is up early. Mark has consistently worked through COVID, thank goodness! So, I’ve had Teale. 

On a typical night, after Mark (& now, Teale) get home, we have dinner & Teale starts getting ready for bed, with Mark’s help. Then, after she’s in bed, Mark practices his sax for about an hour. I am often “done” by this time & unwind with Netflix or in Summer, watering my gardens. By the time Mark finishes his practicing, I’m generally exhausted. We then, may watch something together, or I may have already fallen asleep. 

The lack of dating has been difficult on my psychological well being, but, with Teale home, it’s not easy to figure out. Not a lot of people would be willing to care for her all day.

We did have one full DayDate, on our 31st Wedding Anniversary. Two, separate, dear friends, job shared the day and watched Teale, From 9am -9pm. It was magical! Then, another time, we took about 4 hours off together. That one, I honestly could barely keep my eyes open for! This is life right now. I feel exhausted most of the time. It’s frustrating, no doubt. Mark would love to take walks or hike together, but on top of my exhaustion, I’ve been struggling with Planters Fasciitis. The constant pain is awful. I do the exercises, I soak in Epsom Salts, I ice, I wear good shoes always, I wear a night brace & it goes away, but, it has also come back. 

Then there’s Marks work. He has had terribly busy days at work. He is one of two supervisors, in a department that used to have five supervisors. 

During COVID, a hiring freeze was put in place. Unfortunately, there were three planned retirements that  happened during this time. I offer this information as validation for Mark, he’s dealing well, with a difficult situation. 

Back to the story; Mark & Teale get home & Mark shuts the window. Our kitchen is upstairs in a raised ranch, so, often it’s warmer upstairs. I tell Mark I’m hot. So he opens the window back up, but says to me ~ “So long as you don’t turn on the heat later.” Immediately, I feel like he’s not treating me as an adult or his partner. It was a trigger for me. Inside I’m pissed. I feel like my work at home isn’t validated. I feel disrespected... all these thoughts go through my head. I manage to calmly say ~ “That makes me feel like I’m back in Nancy’s (my Mom) house. I feel like a five year old, not an adult.” Mark immediately apologizes & that should be the last of it. But, like I said in the beginning. I feel like sometimes my emotions are not mine, they can feel out of my control. 

Mark, never means to hurt me, so, I always try to go back to this thought. I was still struggling with letting this go, yesterday. Often, if I blog it out, that helps me figure out the underlying reasons for my feelings & release them. I think the trigger was a feeling of not being an “equal.” This is on me, not on Mark. 

COVID has been tough on us all. We are all dealing with the isolation from friends & family. Many have lost jobs or had to leave them, to be caretakers. Our lives are different & sometimes, we all feel inadequate. 

The trigger brought me back to chilly nights as a child. My not understanding why my Mom was so against “just turning up the heat.” Mark hit this nerve, which somehow went deeper than it was meant to, by him. The feeling of not having a say, flooded me & suddenly I felt like I wasn’t his partner. I know this wasn’t his intention.

COVID has messed with my psyche. I know life without dating my husband, makes me feel “off.” So here’s to better tomorrow’s. COVID doesn’t seem to be going away, so it is up to me to find the balance & peace, that I need.