My Journey as a Caregiver

Reflecting today on something that continues to happen in my marriage. You know you cannot change another person; they are their own separate entity. They alone make choices that nobody else can make for them. We all can make promises. We can choose to abide by those promises or we can choose to take a different path. We can choose to be trustworthy, or we can choose to deceive. We can only change ourselves. It is hard to have a perception of how you want your marriage to be with a person who chooses something different. Does that make sense? We all have something that challenges and places kinks in our relationship with our spouse. No marriage is without those challenges.

I would love to have a marriage where we both are firmly planted in our relationship with God. I would love to have a marriage where neither partner chooses to take what is intended for that marriage anywhere else. I can choose to trust. I can choose to not trust. I also believe that opportunities present themselves…. where eyes are opened…. just enough to see what you need to see. Just to enough to say, “I see what is going on.”

Now I have a choice. Do I speak my truth? What do I do? He made a choice, so it is now in my court, and I get to make a choice. I feel hurt. I feel angry. After ten years of marriage, he continues to make this same choice and I keep giving him chances. Do I continue to give him grace? He recently lost his mom and then his dad 8 months later. That is a lot on him. I know that is hard. It is a lot to process. Grief is hard. It is also hard for me. I loved his parents but did not get to spend much time with them over the years because they lived 15 hours away. It is hard for me to see him so hurt and to know that all I can do is provide comfort for him. I cannot take away his pain. I work in Hospice. I am a social worker and a bereavement coordinator; I talk to people every single day who have lost a loved one. Thats a hard job and to now have to live it at home is not easy. I have lost my dad and now my mom has dementia, I am losing her slowly. None of this has given me permission to seek anything outside of my marriage.

I talked to him about church. We had not been in a long time. I wanted to start going again. He told me, “It just feels like there are a bunch of hypocrites at church.” “Well dear, we would fit right in then.” I feel saddened that he would “poopoo” going to church, but yet has no qualms with his other life choices.

I know this is a long post. It is more for me than you. But I hope maybe I touched someone going through similar things. I do not have any answers. Currently there is no wrapping up this situation. Just putting my words into the universe with hopes I will figure it all out.

I cannot speak for you, but I spend so much time in my head, doubting, criticizing, comparing, berating. Do not get me wrong, it is not constant. I do encourage myself. I pat myself on the back some. The most important thing I do is give myself grace. But those thoughts of doubt creep in without a moments notice.

I wonder if there is a disorder that distorts someone’s perception of what is going on around them. I listen to my mom talk about some of her experiences. I overheard her on the phone with my brother talking about her doctor visit. She told him “My doctor is so mad at me. He is disgusted with me because I lost 10 pounds since my last visit. He just bawled me out.” I am just staring at her like “Huh?” I was there. There was no mad or disgust going on with her doctor. There was no bawling out going on. She also repeated this story when her home health aide came to the house to provide care. I finally had to put a stop to it and correct her. I asked her where this was coming from because her doctor was not mad at her and did not bawl her out. She said “Well, that is how I felt.” So extreme!! I recall the day she accused my husband of hitting her dog. (My husband scooted him away from our dog. The dog was humping our dog…he did not hit him). To this day, she still believes he hit her dog. I saw what happened. My husband is the biggest animal lover, he would never hit a dog!

This brings up so many other thoughts. My mom regularly talks about how my dad was verbally abusive to her. I agree, when I was a child, he spoke negatively about her weight quite a bit. He was so wrong for that. But I wonder if the stories she tells are her reality or the real reality? I know when she was caring for him, I saw her getting snarky with him regularly. I did not see anything he could be doing wrong.

Mom focuses on worst case scenarios. If I drop something small on the ground she hollers out in a panic “ARE YOU OK?” I reassure her I am fine and then explain I just dropped something. If I walk by her and accidentally bump her, you would think I tried to knock her down on purpose, judging by the looks she gives me. When she reminisces, it seems to always be about the bad times. When I ask her to do something, she thinks I am angry at her. She thinks I am yelling at her when I have zero yell in my tone, thought or feels. It is so frustrating for someone to say you are doing something when you were not. I feel like I get run over sometimes.

I feel sad for her. She said “this is how I felt” when talking about her doctor and her interpretation was he “bawled me out.” According to Laura Gemme (author of What Are Feelings vs. Emotions vs. Thoughts: How Nuances Of Each Effect Positive Change) “Emotions are physical reactions, often stemming from an outside influence… Feelings are the result of our thoughts interpreting our personal experiences, and their associations with emotional experiences… Thoughts are mental processes that serve as the link between our emotions and feelings.” So her feelings are the result of her interpretation of her experience with this doctor. She has a physical response based on her past experiences. Her doctor was very nice to her. He showed her concern when he heard she had lost 10 pounds and again when he found the mass. He came up with a plan to do a CT scan and a swallow study. There was no anger or disgust in any of his actions or demeanor. This is interesting but confusing as heck.

I wish I could make a difference in how she thinks and feels. I try to point out the positives in everything we do. I try to bring up all the happy memories. I try to do things that will bring her joy. I feel like I am hitting a brick wall. This obviously goes much deeper than I can reach. I am her daughter, not her therapist. I too have emotions tied to all of this. It is hard to watch when you feel your hands are tied.

I have been MIA (missing in action) for a bit. So many things going on in my little corner of the world. So many emotions. Some days I just did not have time to write. Other days I just did not have my thoughts centered enough to focus on one thing. Today I decided to just write. I may be all over the place. Bear with me as I sort through my journey.

In the middle of trying to figure out how to manage our life. I took my mom to the doctor and he found an epigastric mass. Those words have a tendency to slam the brakes on everything. So many thoughts. So many feelings. Is it cancer? Mom lost 10 pounds since her last doctor visit. That is a lot of weight in just a little over a month. Mom had dental work done and currently does not have a lower partial so chewing is a little more tricky. But truthfully, mom does not wear her dentures or her partial 90% of the time anyway. So not much has changed really. Except maybe it is sore. But 10 pounds is more than she should have lost.

The doctor scheduled a CT scan and a swallow study. Mom also has dysphagia. She chokes when she eats or drinks. The questions swirled in my mind. Mom seems indifferent. When we went to the CT scan and they asked why she was being seen, mom did not seem to know. I told them and mom seemed surprised. This surprised me too. I guess I figured this is kind of a big thing, I really thought it would be something she would remember. Dementia does not discriminate I guess.

The results were a relief. No tumors. She has a large hiatal hernia. She has a swallow study at the end of the month. We will see if this is causing her to choke on her food and drink. I do not know what the plan is. Maybe surgery?

So with some relief, we carry on with life. We get along most of the time these days. We still have some moments that lead us both to acting like children. I am ashamed to admit this but back to that thing called grace. I have to give myself grace. This is hard work. Some days I really want to run away.

I mean, not only am I working and caring for my mom, there are other things in our life that we are dealing with. My sister in law died right before Christmas. My brother is not dealing with it too well, as is expected. My father in law was diagnosed with bladder cancer and has been in and out of the hospital. He was also just diagnosed with an aortic aneurysm. That is a really big deal. My own father had this and his ruptured. He is one of the rare patients whose aneurysm sealed itself and he survived. My mother in law has throat cancer and is undergoing treatment. They both live out of state so this is so hard on my husband. It is a 15 hour drive one way to see them. His mom fell and broke her hip during all of this but she has recovered. And then I am scheduled to have a total knee replacement surgery next month. I am living with chronic pain but feel like I have to put my health on the back burner. And then we have the pandemic still going on. So many things.

Every day I struggle to get out of bed. I used to bounce outta bed at 6 o’clock every morning, weekends included. Now, even though I may be awake, I struggle with putting one foot on the floor. I stay there until the very last moment. Sounds very much like depression to me. I have a counselor. I talk to him every two weeks. I am not sure what else to do. I just have to keep swimming like Dory said in Finding Nemo. Just keep swimming.

I have not been on here in a bit. I have been super busy with work. I had 21 new patients in the month of January plus trying to see the rest of my caseload. Its been crazy. A lot of my new patients were COVID-19 patients in nursing homes. So sad. I think about my situation and feel grateful that I am able to keep my mom here. So many people do not have that option. I get to feeling like my posts are a broken record. Mom drives me crazy and I post about it. Its a little more than that and I know it. But I still feel that way sometimes.

The truth is, this blog is about the journey. There is no destination. When you are a caregiver, your day is filled with ups and downs. When your parent has dementia and mental illness…there are more downs than ups. It is freaking hard a lot of the time. I tell you what my day is like because I want you to know you are not crazy and not alone if you are in the same boat as me.

So all that being said. She is driving crazy. Haha. Every day she gets fixated on something she perceives as a problem and will go on and on about it. All day. Today it has been “your dog got up in the chair and she is lying on Farleys bed. Y’all do not let Farley sleep on your dog beds.” She said “I am surprised Todd let her lay on his bed.” Ok mom, our dogs are allowed in that chair. You put his bed in the chair. When your little dog is lying on my big dogs bed, my dog has no where to lie. I do not let my little dog lie in the big dogs bed either. Your dog has a $100.00 fur blanket that I purchased so he would have somewhere soft to sleep. My dogs have a bed on the floor. 1 bed apiece. Your dog has a blanket, and 2 beds. My husband did not make my dog get down because your dog was on her bed. So there’s that.

This is an example of the little tiffs we get in multiple times a day. I feel like I live with a child. And I feel like I am reducing myself to acting like a child as well. I mean, am I supposed to allow her to run over us? I cannot. And I really do try to take the high road a lot of the time. I know that she has uprooted her life to come live with us. But we also have our lives flipped upside down. We have done so much to try to make this transition easy for her. She is also who she is. She has always been a bit of a handful and I do not expect she will suddenly become agreeable now. I am also big enough to admit I can be controlling at times. So this is our journey. Good and bad.

A few days ago I had shared I was ready to throw up my hands and quit. Some days, I am not proud of how I feel. I want to do the right thing. I want to be a loving, caring daughter. I heard someone say “Growth is a dance, not a light switch.” So much truth in that statement!!! I cannot just be everything I think I should be because I am human. Growth has ups and downs but moves forward. My humanness is made up of so many things. I have sat down to write several times since my last post but have felt so blocked. The truth came to me today. I cannot connect to my thoughts because I was feeling bad about myself. So I had to address those feelings. I hope that my posts help someone. I hope that my humanness helps someone. I have to live with all of my choices. I have to live with my mistakes. I live with my victories. I have to give myself grace more often than not. The important thing is that I AM showing up. Have a good day everyone.

My mom had her doctor appointment yesterday. I went with her so I could also speak to the doctor because after looking at her previous doctors records, I could see that she did not address any of her depression concerns with her doctor. There was no mention of depression or anxiety. No mention of memory issues. I know that she lives in denial and is embarrassed to tell her doctor of her issues. I wanted to make sure her new doctor knows everything.

So now I feel we are at a crossroads. We discussed the memory issues and her depression and anxiety. She admitted the depression and anxiety had been “a real issue for a very long time.” I was proud of her for being honest. Her doctor spoke to her about anti-depressants. Mom has been against taking medication for as long as I could remember. She told me once that she did not take them because they did not have insurance. Then another time she told me “I just cannot take that stuff.” I feel that is the “closer to the truth” reasoning. She has not taken anything in probably 40 years. The doctor explained that medications have changed a lot over time. He also explained that the memory issues may actually be caused by the depression and he told her he would like to treat the depression to see if that improved her memory. She reluctantly agreed to try an anti-depressant.

This small victory has been cut short. We went to the pharmacy to pick up her medication. The pharmacy always includes an insert. My mom opened the insert and began to read the warnings. My mom takes every single warning to heart. Like, every single warning IS going to happen to her if she takes this medication. One of the warnings is that it could cause the person to become suicidal. I can see how this would cause concern for my mom. She has had suicide attempts in the past. She went to bed last night and told me before hand that she wants to discuss this in the morning. My thought is that we should call her doctor and discuss this with him., which we will do. Meanwhile I decided to do a little research. From what I can understand, the concerns for suicide attempts lie in the adolescent age group. According to centerforresearch.org, a study conducted in 2010 that included more than 238,000 adults, “the findings show that there is no significant increase in risk of suicide for adults taking antidepressants.” I am sure there are many articles and many studies that represent both sides of the fence.

I know my mom is not going to take the medication. My mom is comfortable in her misery. Her depression is not situational. Nobody can fix this but her. It is so hard to watch her. She has always said she admires me for my strength. I want to tell her MOM I TAKE CARE OF WHAT NEEDS TO BE FIXED! I am not just sitting in my misery and “woe is me!” I get help. I educate myself. I do this for myself but I also do this for the people I love because I do not want them to feel helpless about fixing me.

I feel we are being forced to continue to watch her suffer. If she continues to live here, we will continue to be emotionally abused by her. I say that because she uses this to control and manipulate us. She pouts and folds her arms and accuses us of not caring or being happy that she is so miserable. I even told her that if her memory issues are in fact being caused by depression and we get that fixed, then she may be ok to go home. She told me “Oh I bet that would make you happy.” Well, yes, it would. I will not lie. But I feel I cannot win with her. No matter what we say or do, she will turn it into something being done against her. I cannot find a middle ground with her.

I am human. I am trying. I really do not know what to do. I feel like throwing my hands up. I cannot fix her. What can I do to make mine and my families life easier? I believe we need to start looking at selling her home and getting her into an assisted living. Today I cannot do this.

Bibliography

Levin, M., Jury, N., Mohseni, K., Srinivasan, V., National Center for Health Research. Do Antidepressant’s Increase Suicide Attempts? Do They Have Other Risks? https://www.center4research.org/antidepressants-increase-suicide-attempts-risks/

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!