10 weeks…

Tomorrow marks 10 weeks since I lost my dad. It’s hard to believe it’s been that long since he left me. It still feels like it happened yesterday, but I’m coping so much better than I did when I lost my mom. I owe a lot of that to my dad because he wasn’t afraid to have the hard conversations with me about end of life. The bereavement class that I have been attending has also been a huge help. It is a place where it’s okay to grieve and mourn. So many of us share things that we don’t feel like we can share elsewhere and it’s a great atmosphere. I’m grateful for this safe haven.

Now to get you caught up a little bit on me and what’s been happening the last few weeks. I finished the ShapeGoal40 challenge on the 3rd. I’m sad that it has ended, but the support of the wonderful women I’ve met continues on in the group. I’m also happy to say that I was named the goal crusher for the last week of the challenge. I will come back later and share the video here. It’s a great feeling to see how far I’ve come in such a short amount of time.

Another plus is that I saw my doctor yesterday and she’s proud of the progress I’ve been making. Last year before dad died she wanted me to focus on losing weight because I had been putting on weight and pretty quickly. Then my dad died and I turned to food as a comfort, but knew that I couldn’t continue down that path. At my appointment yesterday she told me I was so close to being out of the morbid obesity range. I told her I didn’t even know I had hit that range and she said she didn’t tell me because she didn’t want that to be in my head and make things worse. She wanted to encourage me to move more and to work on eating better. We also talked about things that I’m doing coming up, like my first half marathon in April in NYC. I’m lucky to have a doctor who encourages me. It’s one more person on my team who I know I can turn to if I need support.

I hope you all have a great Tuesday!

Advertisements

Real talk

A lot of this blog is about my journey as a caretaker to my dad, but I’ve also posted some about me trying to get healthy and focus on myself, which I have been doing with the #ShapeGoal40 challenge. It’s been a pretty bumpy ride because of having a head cold, now being on muscle relaxers for a pulled muscle in my back. I wanted to share a bit of my year last year and why doing this challenge is important to me.

A few years after losing my mom to a brain aneurysm I started to get this intense pressure in my head with changing positions, such as kneeling to standing. I didn’t think much of it or mention it to my doctor because I was terrified of finding out if something was seriously wrong with me. I needed to make sure my dad was taken care of, so I just let it go. The head pressure started to become more frequent over the year and started to have headaches almost every day. I did my best to just push through, but last year things got kind of scary for me. I was starting to get dizzy spells, and focusing at work was becoming increasingly more difficult. Within a three week span last year I ended up in the emergency room because of the headaches. One of those trips was me leaving work by ambulance because of how dizzy I was and how much pain my head was in.

The first hospital visit they tried Imitrex, which kicked in within fifteen minutes and I felt so much better, but the next day I was miserable again and the headaches seemed to be getting worse. The subsequent ER visits included a CT of my brain and an MRI/MRV of my brain. Thankfully nothing showed up on those, which was a relief, but my doctor was still at a loss as to what could be causing my headaches. I was referred to Neurology and spent about 10 minutes with the neurologist for a consult that was scheduled for 40 minutes. After replying to a message on if they met my needs, I marked no. I left without any answers or even a plan to help the headaches. The nurse talked to the neurologist and I was put on amitriptyline, which is mainly used as an antidepressant , but has also been found to help migraines.

You may be wondering why I’m sharing this and there’s an answer. Since starting the #ShapeGoal40 I’ve been eating so much better and drinking more water, but haven’t really had any of my weight come off. The head cold and the pulled muscle in my back have been small set backs, but then I remembered being told that a side effect of amitriptyline is weight gain. The hospital where I doctor at uses MyChart for patient’s to access their medical records online and I went back to see when I was started on the amitriptyline, which was 08/23/17. At that time I weighed 189. 32 days later at a follow up appointment with my primary doctor, 09/25/17, I weighed 202. Almost a 15 pound increase in weight in a little over a month time span. Since then my weight has been gradually increasing, even with eating better, drinking more water, and trying to be less sedentary at work. I think the medication is what is preventing me from losing weight. I’m eating enough of what I’m supposed to be eating, plus having healthy snacks throughout the day. I see my doctor in a couple of weeks and I’m going to see if I can trial going off of the amitriptyline to see if that helps me lose weight and to see if my migraines come back or not. If they do I will see what other medication I can try, but having this realization tonight was something I needed.

Self discovery

In a way I feel like this blog is turning into a self discovery blog along with sharing my story of being a caregiver to my father. This is a huge deal for me because I feel like my identity for the past seven years has been that of a caregiver. Putting my dad first, taking him to the ER when needed, doctor appointments, helping him with IV medication at home if needed, bandage changes for wounds. The list goes on.

Today is day 20 of a 40 day challenge I am doing. I’ve posted about it before and it’s called #ShapeGoal40. There’s an amazing private Facebook group for women who are encouraging women, getting real about their struggles, and what their goals are. My goals haven’t changed since I posted them in the last blog and I will post the link to that one at the end of this post.

Tonight’s check in with Jen Widerstrom was just what I needed. My goals didn’t advance a whole lot this week until yesterday and today. The last week has been rough with having the upper respiratory thing that’s going around, dealing with a migraine on Friday, being called an orphan by someone, and attending my first grief class after the passing of my dad. I just didn’t really have the energy or drive to be motivated to move a whole lot, but I didn’t sacrifice my healthy eating and getting my water intake in. Yesterday I was still feeling blah and didn’t want to do anything, but I made myself get up and do Jen’s week three workout for the first time and I was amazed how much better I felt mentally after doing the workout. I pushed myself more today with the workout again and as the reps decreased, I made it a point to increase the weight, even if that meant taking a pause in between reps. I was proud of myself for pushing through and getting it done. I’m getting back on track this week and hitting the gym on the days I promised myself I would.

Another part of tonight’s check in was what do we look for in an accountability partner and what you need in your support system. What I’m looking for in an accountability partner is someone who will go to the gym with me and who will challenge me while I’m there. I also want someone who can help make sure I’m staying on track with my eating and water intake. So far I’ve been doing well with this on my own, but you never know when one bad day can start you back down the rabbit hole of bad habits. As far as me being an accountability partner to someone else, I think that I’m good at being a cheerleader for others. I had to be my dad’s cheerleader when he broke through a milestone in his health, like when he quit smoking after more than 30 years. I’m good at celebrating successes. In this process I’ve also learned that I need to celebrate my own successes as well, which can be hard, but I’m slowly learning that celebrating the small things will help when I reach a milestone goal.

As promised, here’s the link to my original blog post about #ShapeGoal40: https://lifeofacaregiver87.com/2017/12/30/shapegoal40/

 

Power of Attorney

In life there are always many discussions that are hard to have, and one of them is being end of life discussions. No one wants to think about end of life, but we eventually all have the same ending. This may sound morbid or depressing, but we aren’t invincible. Knowing what your loved one wants when their time comes is super important. When I lost my mom, my dad and I had no idea what her final wishes were. My mom lost both of her parents at a young age and was never fond of doctors, so when my dad would try and have those discussions with her, it was always put off. Losing her suddenly was a shock to both my dad and I, but then trying to make arrangements without knowing what she would have wanted was even harder.

While discussions about end of life aren’t easy, they are necessary. My dad and I talked several times about this because of his health. We sat down one day and discussed what it meant to be his medical power of attorney, his living will, and about organ donation. Being a power of attorney for someone is a huge deal. It leaves you responsible to make medical decisions on a persons behalf, should they for some reason not be able to make those decisions because of their medical condition.

You truly don’t know how hard choices are to make until you are faced with making a decision on your own. This is what happened to me in 2015. The previous year my dad had gone through a colonoscopy due to having some blood where blood shouldn’t be. The gastroenterologist saw a few polyps that he was able to take care of and sent to pathology to make sure they weren’t cancerous. It was a huge relief when we found out they were benign.

In 2015 the cycle repeated itself, except this time it was much worse. My dad was hospitalized due to a gastrointestinal bleed. They did a couple of colonoscopies and things got really serious really fast. My dad was pretty much bleeding without it being able to be stopped. And because of the amount he was bleeding he had a large number of blood transfusions. He was also on a blood thinner because of his artificial heart valve and because of everything going on in his system, he also received fresh frozen plasma and vitamin K to bring down his INR. Due to the lack of oxygenated blood in his body, during this time he also had a minor heart attack. This is something that usually ends up having a poor outcome. At one point my dad was so unstable that they did a bedside colonoscopy and endoscopy, but the area he was bleeding from was in that perfect spot that it couldn’t be reached from either end, so the gastroenterologist tattooed the area in case my dad needed to have surgery.

The doctor came out and talked to me in the waiting room, as did a general surgery resident. Both doctors were fantastic and said that if his blood pressure maintained where it was at, they would wait for a couple of days to get him a little more stable to possibly do surgery. They both went back to his room to get things cleaned up and the surgical resident came back out and said that his blood pressure had dropped again, and that an emergency surgery needed to be done. Being the power of attorney for my dad, this was a choice that I had to make. My dad was so out of because of the amount of blood he had lost. I called one of my friends who is a nurse and she came and talked me through everything. I was able to ask several questions to the resident surgeon and once we found out who would actually be doing the surgery I signed the consent form for my dad to have an emergency small bowel resection.

I had some amazing friends come sit with me during the surgery and everyone was fantastic with keeping me updated every step of the way. The only thing going through my mind though once they called to say they had started surgery, was that my dad had always told me he did not want a colostomy bag. But I knew at that point, it was too late to change my mind on him having surgery. Thankfully once surgery was over, the surgeon came out and talked to me and my friends. She said that everything went well, that they removed 18 inches of small bowel, and that he did not need a colostomy even temporarily. My dad did well overnight and they started to wean him off of the propofol so they could extubate him. While he was still intubated he could hear me and the nurses, follow commands, etc. I asked him if he was mad at me for having them go ahead with surgery and he shook his head no and squeezed my hand. I was so relieved and had more confidence that if I needed to make another decision like that, that I would be able to.

Being a medical power of attorney is a powerful position to be in, but knowing who you’d want and trust to make choices for you if you are unable is important. No one likes to discuss death, but having the conversations while you are able to about who you want to make decisions for you and so that your loved ones know what your final wishes are helps tremendously when that time comes. Also, discussions about being an organ donor are just as important. Organ donation is a wonderful thing and my personal stance is if I can allow someone to live a better quality of life once I’m gone, then take what you can because I no longer need it. Losing someone is always hard, but knowing these things in advance makes some things easier on you because for the first few days you will be in a fog trying to get arrangements made, an obituary done, and notifying family and friends. Knowing ahead of time if your loved one wants to be buried or cremated, donating organs, and anything else, helps to take a bit of the burden off.

Things not to say to someone grieving…

In my life I have lost two of the most important people that anyone can lose, my mother and my father. My mom passed on 03/17/2011 at 54 and my dad on 11/29/2017 at 61. There have been other people who I have lost and who I’ve grieved for, but losing a parent is different than an aunt, uncle, grandparent. Of course you have a relationship with them, but the people who raised you leave such an impact on your life. In the last 6 years, 10 months, I’ve heard many different things that people have said to me or others grieving.

When I lost my mom people told me she was in a better place, some told me I needed to get over it, others said she wouldn’t want me to be sad. At the time I had others who called and asked me if Facebook posts they were seeing on her page were true. Some people may joke around about death or losing their parents, but I was not that way. Everyone grieves in their own way and while she is in a better place, telling someone that right after someone passes may not be the best thing to say, neither is telling someone to get over the death of a loved one because we will never be over no matter how much time passes.

Recently at some doctor’s appointments and other appointments, people told me my dad was in a better place, no longer in pain, etc. And I know him being in pain no longer is a huge relief for me because of his numerous health issues, and while his death came quick, I had a chance for closure with him that I didn’t get with my mom, but again with his passing I have heard comments from people again telling me he wouldn’t want me to be sad or cry, that he would want me to move on with my life. The most recent comment which hurt more than the others was when I recently went to a walk-in clinic for this upper respiratory stuff that’s been going around this winter. A doctor was getting a little bit of history on me, if I had siblings, my parents, what I do for work. When I told the I lost both of my parents and was an only child this doctor said, “So that makes you an orphan now”. And by the true definition of an orphan that statement is true, why would you say that to someone who had only lost their father five weeks previously?!

Some of the best things you can do for someone grieving is offer to go to the funeral home with them to make arrangements, take them out to lunch or dinner, spend a weekend day with them, bring over a home cooked meal so they don’t have to worry about cooking for a night, let them call you and listen to them cry if they need to, or just to vent. There are so many productive ways to help someone who is grieving rather than saying they are in a better place or they wouldn’t want you to be sad, because while that may be true, words can hurt even if they are meant in the best possible way. We learn to live without them in our lives, but there will always be things that trigger us and make us relive the day we lost them.

Grieving…

Let me tell you, grieving is such a weird, yet in a way, beautiful state to be in. It’s difficult losing someone you love, but then at the same time, you get to share with other people how much that person meant to you, stories, memories, and pictures. I say this because I started an 8 week bereavement class last night through the hospitals hospice program. Last night was a lot of general stuff about what we would be doing the next seven Monday nights, but we also got to share a bit about our loved ones. This was difficult for all of us because we had to share who we lost, their name, and their date of death, but a lot of us shared other personal  things about our loved one to the rest of the group.

We have “homework” weekly, but it’s all to allow us to help heal. There is a book we are reading that has a journal go along with it called “Understanding Your Grief” by Alan Wolfelt. We are reading the introduction and first chapter this week along with bringing in no more than three pictures of our loved one(s) that we lost. To say I’m excited about this may sound strange, but being able to share my story and hear others and make unique connections with others who are going through similar situations as myself comforts me. I already know what three pictures I will be bringing in of my dad and I. All I need to do is get them printed off some place.

The first night was hard emotionally and also draining, but it’s also good to not bottle things up, which is part of why I’m blogging about my life as my dad’s caregiver and what I’m doing now that he’s gone. Life is an interesting journey and at some point we are all going to experience significant loss in our lives and at some point too we will pass. There were words of encouragement from the fall group that left me feeling like I was in the right place and need to see this through fully. I know no matter how much time passes there will be times that are harder than others and that’s life. I’m looking forward to seeing where this book and journaling will take me in my grieving process and when I’m ready to share that portion of my journey I will.

You always picture your life going a certain way and to have things in life go smoothly, but the truth is there are obstacles in the way. It’s how you deal with those obstacles that life throws at you that’s important. I never imagined I would be 30 and not have either parent still alive. They won’t have the chance to see me do so many more amazing things in my life, but I know while there were here they got to see me do some pretty awesome things and I know they were so proud of me. I’m taking this minute by minute and day by day. That’s all any of us can do in any situation in life. I’ve often heard it said that it’s no so much your start day in life (your birthday) and your end date (the day you pass) that’s important and that tell your story but it’s the dash in between those dates that make you who you are and truly tell your story, so go out there and make every day count no matter what your situation is. There’s a quite from the TV show Castle that my dad and I watched together while it was from the lead on the show Stana Katic (Detective Kate Beckett) that goes, “Even on the worst days there’s a possibility for joy”. Go out there and find something that makes you happy every day, even if  you are having a bad day.

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.