The toll being a caregiver takes

When you are thrown into the world of being a caregiver, you never imagine the toll it can take on your own body. It’s like all of your senses are heightened and you are always ready to jump up incase the person you are taking care of needs something. This is how my life was over the last six and a half years.

When I really started to have to put my dad and his needs above mine happened around the same time that I was in a bad work situation. The department I had been working in and loved most of the time, started to take a toll on me. I was being talked to about things that weren’t at all related to me doing my job and hitting all of my job related performance stats. It was during this time that I visited my family doctor and was diagnosed with generalized anxiety disorder from work related stress. I know this evolved into my anxiety being just as bad because of everything my dad was going through as well. I was out on medication that at first I thought was working, but when I realized it wasn’t, I went back to my doctor and I was put on something different that has helped. In total I’m on two anxiety medications, one daily and one as needed.

When I first started this journey as a caregiver I was pretty healthy. I was slightly overweight for my height around 160. There were times this would be higher and lower depending on how active I was while also trying to take care of all of my dad’s needs. Over the course of time that I was his caregiver, I began to let myself go even more. I really put myself at the bottom of the list and made sure he was always taken care of. By the time my dad passed on 11/29/17 I had hit a number on the scale I never wanted to see. I was, and still am currently over 200 pounds. Over the course of the last almost year I had put on almost 35 pounds.

It isn’t just about the physical weight I put on, but also the emotional weight too. Being a caregiver feels like you are carrying around an incredibly heavy backpack all of the time. Your body is always in this alert mode and your stress levels are so high. When I wasn’t home with my dad to know he was okay it was even worse. I was always so drained, but still managed to keep going at the same time. Even when my dad was in the hospital, depending on the situation and knowing he was in the best possible place he could be if something happened, I was still so stressed.

I could really see the toll this took on me by looking at pictures before truly becoming a caregiver to after. My smile in pictures didn’t look as genuine, I looked run down and tired. And because of all of the stress I started to get gray hair in my mid twenties. It’s so crazy the way stress can affect a body in so many different ways.

This Wednesday will mark six weeks since my dad passed. There are still times that I can’t sleep at night, like tonight, or should I say this morning. I’ve been up since about 3am. My cats Socks and Shadow are still trying to adjust and Socks is having a harder time. I know I’m still adjusting too, but I feel like I’m so much better adjusted than I was after losing my mom. I credit a large part of that to the fact that my dad and I had many conversations about end of life and his wishes. I’ve gotten myself back to a normal routine for the most part and in part of trying to take better care of myself I get up in the morning to make breakfast and lunch so I’m not tempted to stop at a drive thru or order out. I’ve been cooking more dinners and I’m getting back to the gym. I still miss my dad terribly and I know that I always will, however, it’s nice to also be getting my life back.

A huge chunk of my twenties was spent with dealing with the sudden loss of my mom at 23 and then my dad’s declining health. Getting to live my life for myself again is liberating. I’m looking forward to seeing where this year takes me. It feels like I have a world of possibilities now that I didn’t have before. Don’t get me wrong, I would do everything all over again with taking care of my dad. There’s no question about that, but for the first time in my life I’m truly on my own and I’m excited for the adventures that lie ahead. The two photos below are how I’m looking at this year. A week in and I’m still excited about all of the things to come. There are new incentives at work for making extra money, I’m doing the ShapeGoal40 with Shape and Jen Widerstrom, I’m planning my friend (sister from another mister) Katie’s baby shower, I’m going roller skating with Bri Tuesday nights, I’m planning on doing the Shape Half Marathon even if I have to power walk the whole thing, I’ll be going on Jen’s 2018 retreat, and am going to try to make it to Shape’s Body Shop this summer. This is the year I regain myself and my happiness.

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A couple of easy(ish) years…

After all of the “fun” we had in 2012, 2013 and 2014 were a walk in the park in some ways, but also more challenging. Dad was in and out of the hospital for small things related to his congestive heart failure or cellulitis infections, but nothing too crazy health wise for him. Of course there were also routine appointments and tests as well.

Where things were really crazy over this two year period was with him not being able to work anymore due to his heart failure and the lymphedema in his legs. At first we thought it would just be a short term thing where he would be able to go back to work, but it ended up being a permanent thing. He applied for Social Security Disability and was denied the first two times around.

Things were tough financially over these two years because it was just my income and I was making less per hour than my dad had been. We somehow always managed to pay the bills on time. If we were ever short money, I would do donate plasma twice a week to have an extra $50 to make sure we had food to eat until payday, even if it was just bread, peanut butter, and jelly. There were times that I would also have to take out payday loans, and I don’t know how we managed those biweekly payments on top of all of the other expenses, but we managed.

Having those experiences where we pretty much had nothing makes me grateful for all I do have in life. I don’t know that people really take a step back to think about what would happen if one of their loved ones were not able to work anymore and then you suddenly have to become the sole provider. It’s really eye opening and helps you to truly know where your priorities in life are at. You no longer are concerned about the latest fashion or new shoes; you really become grateful for all that you do have.

Growing up as an only child I used to act like a spoiled brat and I’m not afraid to admit that. I would beg for something at the store and if dad said no, I knew I could always go to my mom and she would say yes. And if she didn’t say yes I would throw a tantrum and it didn’t matter where we were. As I got older of course some of that got better and some of it didn’t. At 23 after losing my mom and then having to suddenly grow up real fast to being the sole income provider and caregiver it really opened my eyes. I know there are people out there who have had it a lot worse than I have for sure, but everyone’s hardships work themselves out in different ways. This just happens to be my journey and I hope that these blogs in some way can help others to know they are not alone out there, no matter what they are facing.

 

Looking back…

As I look back on this past year, I realize that I am a lot stronger than I ever though was possible. The year started with my dad in the hospital in January, then again in March, April, May June, July, September, and November. He went through so much this year and there was a period of three months that I had to take off from work because of running out of FMLA time and needing to be home with dad to administer antibiotics via a PICC line three times a day. In all of the hard times this year I realized that I am capable of so much more than I ever knew I was. I don’t know that a lot of people truly know all I went through this year and I will go into more detail in a later blog.

I never imagined ending 2017 without my dad. He was such a fighter this year with all of his health ailments, and while that didn’t help my generalized anxiety disorder, I still feel like I had some great moments with him. During  the three months I was off from work he and I would watch The People’s Court together during the day and a Cubs game at night. I’m thankful for all of the moments I was able to have with him over these last several years and I know how much he loved me. Maybe one day I will post the video I recorded of him telling me he loves me, but in my healing journey I’m not there yet.

While there were more tough times this year, than good times, I still managed to have some pretty good times. Some of the good times this year included me celebrating my 30th birthday with two of the best friends any girl could ask for. Justin and Katie had shirts made, we went to Sleepy Creek Winery, and did a whole lot of other fun stuff for my birthday. I’m so lucky to have these two in my life. They are more like a brother and sister to me. I’m so excited for more adventures to come with them in 2018, and of course Max and Bentley, their German Shepherds. I know this next year is going to be a lot of fun!

Also this year I got to meet Jen Widerstrom. I drove up to Naperville, IL for her book tour and after her book talk and answering some questions from attendees, she was signing her book. She is one of the most down to Earth people I’ve met. She and I talked for a few minutes, and she remembered me from winning a DietBet she hosted in 2016. I’ve been lucky enough to keep in touch with her over the last year and I can’t wait to see her at the retreat she is planning in 2018.

I was also blessed enough this year to spend Christmas with several of my cousins in Indiana. And while I wish my dad could have been here to celebrate as well, I am glad I was able to go up for a few days. This was the first time I had really experienced a big family Christmas. Getting to help make treats, and meeting other family that I haven’t met was a lot of fun. The best part of the trip was when my cousin Shanna surprised my Aunt Joyce with a trip to Hawaii. It was a three part gift with the last being a shirt that said, “I can’t keep calm, I’m going to Hawaii”. She didn’t have the shirt completely open and at first thought it said, “I can’t keep calm, I’m going to y’all.” It was such a great experience to see her face when she realized it said Hawaii on the shirt. This has been her dream vacation, so I’m happy for her that she gets to go.

As 2018 approaches, I’m looking back at this last year with a lot of emotions. I never imagined I lose my dad so soon, but he and I had talked about his end of life wishes a lot over the years. At the end of 2016 he told me there was a good likelihood with his heart failure that he wouldn’t be here this time this year. He was right, but it wasn’t due to his heart failure. Signing a DNR for him was literally the single hardest thing I’ve ever had to do. I’m grateful for the nurse who took care of him in his final hours and let us use her phone so he could listen to Elvis.

In the new year, I’m going to be focused on living life again. I put myself last in order to make sure my dad was taken care of. I’m ready to rediscover who I am and what I am capable of being completely independent now. I’m excited to do things out of my comfort zone, actually go on a vacation this year (Jen’s 2018 retreat), spend more time with family and friends, and focus on getting my health back in check. I’m looking into the new year with optimism and excitement. Let’s do this 2018.

#ShapeGoal40

I mentioned in a post I made a few days ago that I’m joining Shape Magazine and Jen Widerstrom doing their 40 day challenge. Being a caregiver so long I really didn’t take care of myself the way I should have. I ate like crap, gave into temptation sitting next to the person at work who is always bringing donuts, cookies, and candy in. As hard as these last four and a half weeks have been without my dad, I realize that this is a time in life where I get to rediscover who I am. I don’t have to constantly worry about my dad throughout the day or not get enough rest because he needs help with something in the middle of the night. Don’t get me wrong, I wish he were still here because he was the best dad I could ever have ever wanted, but I knew in the back of my head that I was putting my health on the back burner to make sure he was okay.

The timing of this challenge has been fantastic. Today is day five and since it started I’ve been cooking meals instead of eating out. I’ve been making chicken dishes, healthy sandwiches, eating salads, fruits, and going out of my comfort zone by trying new things like couscous. It’s amazing how in just five days I feel like I have more energy and that my body is functioning better because I am putting good stuff into it. I’ve also significantly cut back on soda, except for a sip or two to get medication down. When I was six I choked on a life saver and my mom had to do the Heimlich on me, so getting pills down has always been an issue for me, and the carbonation seems to help that. If you know of something else for me to try, let me know!

With the ShapeGoal40, there is a fantastic group of amazing people who are all supportive of each other from all over the world and many of us have posted our goals so we can all help each other stay accountable. I want to post that here on my blog as well, so that I make sure I am not only accountable for myself, but for anyone who may be doing this challenge who reads this, can also keep me accountable.

For the first time in almost seven years, I feel like this huge weight has been lifted off of my shoulders. I love my dad dearly, but now that he’s gone and truly seeing the toll it took on me that I couldn’t see, but everyone else could has been a huge eye opener. 2018 is going to be focusing on me and rediscovering myself and my joy. As I look back in 2017, I don’t know how I managed to do all that I did for my dad. There were times that I was pretty much at rock bottom, but was able to put up this façade to make it seem like everything was fine. I’m ready to conquer 2018. I’ve got big goals and plans for some of the most special people in my life. I really couldn’t have made it through this last year without Justin, Katie, Bri, Gina, Kelly, Jen and so many more.

Here I come 2018 and here are my goals below!

shapegoal40

Surgery after surgery

2012 was quite the year for my dad, and little did I know we’d have more tough roads ahead. After my dad recovered from his mitral valve he was able to go back to work, but that didn’t last long. After the mitral valve replacement he started noticing swelling in his legs and he noticed that it was getting harder for him to walk because of the swelling. We went in to see his doctor and found out that he had lymphedema. Lymphedema is caused by your lymphatic system not being able to return fluid to the body as it should. During that appointment they discovered that he had congestive heart failure and with having CHF that can exacerbate lymphedema. There were times his legs would be swollen so bad that fluid would weep from them.

After learning about the heart failure a good portion of the summer was spent with appointments at the wound healing center at the hospital. They have specialist that deal with things like lymphedema. We tried all kinds of things to help with the leg swelling from ted hose to Jobst socks and nothing seemed to work to keep the fluid build up down. There were days where it would be better than others, but overall his left leg was always larger than his right because of a vein they had to remove for his heart bypass.

As fall and winter came my dad had more appointments with specialists including cardiology. They did arterial venous duplexes on his legs and a carotid artery duplex. The results from those tests came back showing that he needed to have a femoropopliteal surgery and surgery on his carotid artery. His surgeon decided to do these surgeries two days apart. His carotid artery surgery was first because it was blocked about 80%, which if plaque had broken off could have caused a stroke. Two days later he was back in the OR to have a graft placed to bypass his bad artery to help increase blood flow to his leg. Both of these surgeries took place about a week before Christmas and thankfully dad was able to leave the hospital on Christmas Eve day.

At a follow up appointment we pointed out to the surgeon that the area where they had made the incision was not healing and looked infected. The surgeon took a look at it and did some lab work and it came back that the area was infected, which meant yet another surgery in early 2013. Before they took him back to the OR they said that surgery could go one of two ways, either it was a simple abscess that they could drain and debride or the infection had reached the graft and they would have to redo the whole surgery. Thankfully it was only an abscess, but it left a pretty big opening on his leg. This is really when I started to learn a lot about the medical field and really paid attention to things and absorbed as much as I could. I had to learn how to pack the area with sterile gauze (wet to dry) and measure the area to make sure it was healing. While it wasn’t a fun situation for my dad to go through it was a great learning experience for things that were yet to come.

Life after losing my mom

I figured with today’s post I would get back on track a little with being a caregiver and life after losing my mom. My mom passed on 03/17/2011 and just two days later on the 19th it was my dad’s birthday. Losing my mom was such a shock to me that I barely ate for about three days. I even went out to get my dad a birthday cake and didn’t eat any of it, which is not like me because I love cake.

Losing my mom was a hard transition for me because I didn’t get a change to say goodbye to her. At the time that I lost my mom, my dad worked overnight and even though I was in my early 20’s when I lost her, I went to the local community college and so living at home was easier, but I have never spent a night alone in my house. When my dad would leave for work I would start to hear noises and things that really made me paranoid. I was lucky that my dad worked at a hotel and so for a couple of months he let me go into work with him and use a room to sleep in. There were railroad crews that would come in and would request a room with two beds, but there would only be one person in the room, so I would sleep in the bed that hadn’t been used. Eventually I got used to being home alone overnight and it helped that I had my cat Footer at the time to help with the transition.

Later in the year my dad started experiencing some chest pain, so we took him into the emergency room. They did testing and thankfully he wasn’t having a heart attack, but was having angina. I was relieved that it wasn’t a heart attack because when I was in high school he had one and when he went to the ER for that, the next morning they did open heart surgery. What was originally supposed to be a triple bypass ended up being a quadruple bypass. So while this time around it wasn’t a heart attack, they did an echocardiogram, which is essentially an ultrasound of your heart. It allows the cardiologists to see how the heart is pumping and to see if there is a good ejection fraction (ejection fraction measures the percentage of blood leaving your heart each time it contracts). the echocardiogram also takes a look at the heart valves to make sure they are working as they should  and that there is no regurgitation, or blood backing up into the heart. Once the results of dad’s echocardiogram came back it showed that his mitral heart valve was leaking pretty bad and that he would need to have open heart surgery to replace the valve.

Upon hearing this news I was such a mess. This would be the first major surgery that my dad would have without my mom being with us. And I know there are risks with any surgery, but open heart surgery is a whole other ballpark. surgery was scheduled for January of 2012. I was worried that I would lose him, but at the same time, I had confidence that he would pull through. The same surgeon that did his quadruple bypass was the one that did the mitral valve replacement. He was great at keeping me informed during the entire surgery. I owe so much to the surgeon for all he did for my dad and for allowing me to not lose both parents not even a year apart.

While I wish this was where the journey of being a caregiver ended, this was only the beginning of my almost seven year journey as his caretaker.

 

Taking Care of Myself

For the first time in almost 7 years I have the opportunity to focus on myself and my needs. Being a caregiver to my father who had many health issues was so hard, but I would do it all over again if I had to. My dad was my rock and I can’t believe that it has been a month today since he passed. It doesn’t feel like it has been a full 30 days. I remember vividly the week before he passed when I asked him one day how he was doing he told me he felt like he was dying. I told him he wasn’t and that his infection and other labs were getting better. By 11/28 he could tell it was his time to go. I was in the waiting room with a couple of friends because they were going to get my dad cleaned up. During that time he ended up getting sick and was really agitated, so the nurse called me and asked me to come back to his room. When I did, I could just tell he looked different than he had before and he was more alert. I walked over to his hospital bed and held his hand. He looked at me and said “Remember what we talked about last week baby, I think it’s time”. Hearing those words were heartbreaking. I gave him a big hug and then because I didn’t get the chance to say goodbye to my mom, I was able to get video of my dad telling me he loved me. I’m grateful I was able to get that and I still have several voicemails from him, but something else special that I have is songs that he sang. My dad sung pretty much all his life, and loved Elvis. Once I was done taking care of his arrangements and other running around that needed to be done, I sat down at his computer and pulled up his music. I found a folder that had several songs he recorded and also found a record in the spare bedroom that he was on when his high school choir recorded a Christmas album. I’m so grateful to have these things.

Since my dad’s passing I have been having a hard time with cooking at home. Until last night I had been stopping on my way home to get something through a drive thru or a microwavable dinner. I know those aren’t good for me, so last night I went shopping and actually got some healthy stuff. Yesterday I started a 40 day challenge called ShapeGoal40 being hosted by Jen Widerstrom and Shape magazine. Back in February this year I met Jen after the release of her book Diet Right For Your Personality Type. We talked for a few minutes and she remembered me from one of her DietBet’s I did. She and I have kept in touch since then and I knew that this would be the perfect time to tackle this challenge head on. I have my goals written down and posted to my Instagram (cubbie_87). I convinced a friend to sign up and I’m super excited for these next 40 days. Life has a crazy way of timing sometimes. Part of my goal is to lose weight because I have put on at least 30 pounds since meeting Jen. But there is so much more to my goal than the weight loss, so if you are interested go check out my Instagram and while you’re at it go follow Jen on their as well (@jenwiderstrom). She’s had such an impact on my life and I love that she and I have been able to keep in touch.

As time goes on I will share more about my life as being a caregiver and more of my story, but I felt like today these are the things I really needed to share. It hit me pretty hard this afternoon and needed to get it out so it doesn’t eat away at me inside. If you are interested on doing the ShapeGoal40 with me, you can search for Shape’s page on Facebook and all the information you need is there. I also have a Planet Fitness membership that allows me to take a guest, so if you want to join me at the gym, let me know!