The Truth About Caregiving
(Previously published in pseudomyxomacancer.blogspot.com in 2017)
Perhaps I have done an injustice to other caregivers by making it look like, for all intensive purposes, on the outside to be easy breezy. I am nurturing by nature and tend to take a lot of things in stride. But I am not perfect. And we are all very good at hiding truths from the outside world.
What I am about to share are very personal, real feelings that some may be uncomfortable reading yet others will see themselves in it. I need to be honest with my readers in order to be honest with myself.
I have been a caregiver for over ten years. Beginning in about 2006 or 2007 we, (and by “we” I mean “I”) became a primary caregiver for George’s mom. Diagnosed with Alzheimer’s, the family decided that she needed to get social stimulation which would enable us to keep her brain more active and hopefully keep symptoms under control. I would be the driver to take her to a senior daycare center. What started as two half-day a week sessions eventually progressed to 5 half days as we discovered that she really liked it there and was bored at home. This meant that my life was similar to that of having a child in school. My activities and free time revolved around drop off time to pick up time. This was approximately 6 hours a day. After a fairly long time of this we looked into using paratransit. That was a lifesaver and gave me back my freedom during the day. She would be picked up from home, taken to daycare and returned home later in the day.
As her disease progressed we increased the time at daycare but then we were unable to leave her home alone at night or on weekends. This meant that George and/or I were tethered to our home all the time. Our lives revolved around her needs. Our time off was when she was at daycare. We ended up adding Saturdays to her daycare schedule so we could have free time to run errands together on the weekend.
We constantly re-arranged things as she progressed into the disease. When I returned to work for a period of time my only request was to work part time so that I could still cater to mom’s needs before and after work. Because paratransit was not always timely, we brought in a morning caregiver for Mom so that I could get ready for work and get to work on time. Still, after work I came straight home to await her arrival. Later, we added an evening caregiver so I could eat with George and have a little free time after work. However, over the course of two years we had more than 4 caregivers with periods of time in between where there were none. This meant that I was on the go from the time I got up in the morning until Mom went to bed at night. Even then, I was on call all night long, having installed a baby monitor so we could ensure that Mom didn’t get into trouble during the night.
If George and I wanted to go somewhere on a weekend or take a vacation, we had to arrange for his sister or niece to come stay with Mom. This often required weeks or months of advance notice in order to take any time off from being a caregiver. Otherwise, I was on active duty for some period of time every day, 365 days a year. Our last real vacation was in September 2015 when, for a very short period of time, George was doing pretty well. Unfortunately, within two months time he fell and nearly broke his neck in two and as soon as that was healed he was back in surgery, this time because he was having symptoms from his cancer.
It got so I no longer looked forward to holidays as that only meant that I had Mom home for another day. While she was normally easy going, she had a cantankerous side to her that reared its’ head. I had to check on her many times a day to ensure she was drinking her water, or to get her lunch, dinner, snack, medications, etc. I felt like a rabbit jumping up every hour or two to take care of something.
During my stint as her caregiver I set up meds, administered med, help shower her, dress her, clean up after she'd made a mess, did her laundry and sat with her for countless hours to ensure she didn't do something to hurt herself or wander off. Nothing can erase the images I collected over the years as she slowly digressed and became less and less herself. Her physical appearance changed so much over the years. Recently we looked at some pictures taken over time and were awestruck at the difference. When you are in the middle of it all, it takes place in slow motion when in reality it happened so fast.
In 2014, when George with cancer, I became a caregiver times two! I would keep the baby monitor on in mom’s room while we sat or slept in the living room and jump up whenever I heard movement in the other room. Mom had a myriad of infections over the course of the last 5 years of her life that made her do strange things. Although we had caregivers so that I didn’t have to take care of mom between 7AM and 8PM, that didn’t mean the night was clear for me to be “off duty”. And, as I said, there were times we were in between caregivers. During those times I would get up, go to work, pick up mom on the way home, come home, get Mom’s dinner ready and feed her, go make our dinner and eat, go back and sit with Mom until it was time for her to go to bed. Exhausting!
Between 2014 and 2016, George endured three surgeries. Two for cancer (9/2014 and 7/2016) and one neck surgery (2/2016). Recovery for each of these surgeries was 3-5 months during which he was limited in movement and restricted to sitting in a recliner nearly 24 hours a day. This meant that not only was a primary caregiver to two people, but also had to keep up the house, cleaning, laundry, shopping, cooking and everything else.
When it became clear that we needed to move Mom to a facility, we did so. That was in spring of May of 2016, shortly before George’s second cancer surgery. The day she moved I sang out “I’m free!”. Indeed, it felt like a huge weight lifted from my shoulders. Now, I only had ONE person to take care of.
That personal freedom was short lived when George’s second surgery did not go as planned and he came home still hooked up to machinery. Between meds administered via PICC line or feed tube and tube feedings at night, I had something to do every 2-3 hours all day, twenty four hours a day for about five weeks (this after spending 24/7 with him in the hospital for three weeks). His recovery was much slower in some ways than the first surgery.
Life as a caregiver has meant giving up a lot of my time over the course of the last twelve years. It has meant cancelled vacations. It has meant cutting back on even taking vacations. I have had to be available, often on a moment’s notice to take care of someone or something. Although I retired again in 2017 in order to spend time with George and perhaps have spontaneous road trips, his health has not allowed that to happen. Living with this cancer means you either do not make long range plans or if you do make plans you have back up plans as well. I remember purchasing tickets for a local musical show. Two days prior to the show we were headed to the emergency room. All the way there I was thinking, "If this issue with George isn't resolved, he may not be able to go. If he's in the hospital, we can't go. Who can I give the tickets to so they aren't wasted?" In the end, we were able to go but there was a high chance that it wouldn't have. I make few long range plans. I don't want to be disappointed.
Life as a caregiver has meant learning new things.... LOTS of them. From new terminology to personal care, I have more knowledge now than I ever felt possible. I have learned how to change nasty dressings, flush PICC lines, administer feeding tube "meals" and care for all that goes along with that. I have had to advocate twenty four hours a day in hospital rooms as nurses duties are spread so thin. I have had to learn to use my voice to try to bring perspective to things. I have seen and done things I never thought I could do, never imagined I would have to do. At times I have had to disconnect as a wife in order to be a caregiver to do certain things. You do what you have to do to survive.
Thus, life as a caregiver can be frustrating. It can make one envious as the lives of those around you goes on just as before. You watch everyone else take vacations, spontaneous weekends away, go to the beach or the snow “just because” they can. I find myself wishing for “what was”, or even “what will be” when I am no longer a caregiver. That makes me feel guilty for wishing that… for when the one you are caring for has Alzheimer’s or life threatening cancer, wishing for when I am no longer a caregiver means my loved one will no longer be alive.
One of the things you are told when you are a caregiver is “be sure to take care of yourself”. That is sometimes easier said than done. Depending on the situation, you may have to find someone to step up in your place. And how much respite is adequate…. An hour? A weekend? Longer? There is no real answer to that as each person’s situation is different.
And… what do you do in that time frame? Go shopping? Hang out with a friend or two? Get out of town?
What you find when doing caregiving for an extended period of time is that many of your friends kind of fall away. Whether it’s because you’ve had to tell them, “Sorry I can’t meet up with you” too many times that they gave up or because they still work and you only can find time during the day, many stop making attempts. And as a caregiver you are usually to tired to even try to make contact.
I’ve discovered over the past twelve months or so that I am also disconnecting from others. Even when I’m in a room with people I tend to listen more and speak less. Being home 24/7 I don’t have a lot in common with people. In my monthly Bunco group, most of the ladies have known each other because their children grew up together. They share stories of their kids. They get together outside of this group so they have a lot more common ground to share. The only thing they talk about with me is, “How’s George?” They all know my husband. I know none of theirs.
Even with my group of former church friends, they have common ground in the high school their children attended and will talk about teachers or experiences there. They, too, tend to do more with each other throughout the year. Again, I listen to their stories but don’t feel that I have anything a value to share. Again, the main topic they will ask me is “How’s George?”, “What’s next?”. They do ask how I’m doing but that’s a short answer as well. Not being outside the home for days on end, I don’t have a lot of things to share. My life consists of sewing, watching TV, playing games on my devices, keeping house and taking care of my husband.
Caregiving can be isolating and lonely in a myriad of ways. It is isolating because after years of living with cancer, people start to think that you are probably okay. Or perhaps they don’t know what to say or do. Loneliness, that’s a whole different kind of thing. I’ve mentioned that it is lonely even when you are with someone. I am home all day long with someone who has little energy and naps a lot throughout the day. The TV is on all day long whether it is being watched or not. With neither or us working, there’s not always a lot to talk about. He likes his DIY and sports shows, I prefer Hallmark or comedy shows. He makes fun of the Hallmark station because the shows are all so similar. That’s exactly why I like them, they are feel good shows and are predictable in how they will end. When your life is a series of reacting to things and not knowing the outcome, sometimes actually knowing how things will end is necessary.
I recently led a grief and loss bible study group. Most of the group have lost a family member recently. I, too, am going through the grief process but for a whole different reason. I have been watching my husband slowly die before my eyes. I have watched him as he’s had to give up his job and his hobbies because he no longer has the strength to endure them. I have watched him have to give up that creative side where he would think of something to make and then make it – because he just can’t do it anymore. I have watched as he struggled with his own self-worth and self-identification because, as a man, they define themselves by what they do for a career. Without that career, what is it they bring to the table. I know where this cancer journey is taking us and I can do nothing to stop it. No matter what we do to try to stop it or slow it down, in the end it will take him. We just don’t know when.
I grieve for the life we had “before” and am angry for what it has taken from me. George always told me we’d go “top cabin” and go places. That’s gone. A successful day for us is one where we take TWO walks around the block, not just one. A successful day is one where we just make it through without a crisis. We wait on edge just waiting for whatever is coming next. Anxiety is constant no matter where we are or what we are doing.
I have a five year old car that has only about 20,000 miles on it. My life for ten years has been inside a 2 mile radius. I call it my “bubble”. When Mom was alive her doctors and her day care were within two miles of the house. The grocery stores are within two miles. The job I held for four years was two miles away. The places we tend to eat are probably within a 3 mile radius.
When Mom was alive we stopped going to church because we had to stay home to take care of her. Even though she moved out in early 2016, because of George’s health we weren’t able to attend regularly until 2017. And when we returned, the lives of those who were still there had still gone on. Although I love some of those folk, they are more like acquaintances than friends. We don’t hang out with them. We don’t do things with them. Being away for so long left us somewhat disconnected. And, just as with my other ‘friends’, the main topic of conversation is “how’s George”? It’s like there is nothing else to talk about. Our lives ARE cancer - we live it, breathe it, think it all day, every day.
Rarely does the phone ring for me. My children don’t tend to call (of course, when I was their age I probably didn’t call my mom regularly either). The few friends I have are busy with their own lives. Truth is, I don’t have much to say most of the time unless you can find a topic that I can relate to. I remember in the last ten years of my mom’s life I called her every week and we talked for at least an hour each time. We found things to talk about from serious to ridiculous. I miss having that kind of relationship with anyone, let alone my mom. It was something that kept me grounded and I know it kept her grounded – even though she probably had the same or similar conversations with my siblings as we all took turns calling her throughout the week. These days I might receive a text message. Sometimes a friend will send a card and that is so thoughtful to know that I am on their minds even though we don’t talk. It’s easy to feel like “the forgotten one”.
I no longer do any real meal planning as George’s menu consists of just a few things: rice bowls, eggs, toast or English muffins, coffee, lunch meat, mac and cheese, mashed potatoes and soup. Most of those are good for my diet – so I have a few things that I keep on hand for myself: yogurt, gluten free muffins, vegetables, potatoes, cheese, a little cereal. We keep crackers and chips in the house to munch on and sometimes other little snacks. I am more creative when we go out but George has his five or so menu items (one from each restaurant), that he goes to. Even our selection of restaurants is down to a mere four or five locations. If any of our friends want to go out to dinner with us, they have to be amenable to eating by 5PM as George tries to stay on a schedule and eats at 8, 12 and 4:30-5:00. I’m not always hungry on that same schedule, so when we are home I can eat when I am hungry and not on any particular schedule.
In recent months I can feel myself disconnecting more and more. Most of the time I just don’t care. If I could close myself up in my sewing room and listen to my audio books or music, I would do that. Upstairs is my “escape” – where I get to be creative and have some fun and sometimes forget about everything else but what I am making. But I even find that I have to balance my “alone” time with time spent in the living room keeping George company, even if we don’t actually have conversations. This is, after all, why I made the decision to retire and stay home. To keep him from being lonely.
I have to rely on myself for everything from doing household chores, yard work, even minor repairs (which I proudly have been able to fix with just a little guidance from George).
When we were caregivers for Mom, we could always find some humor in things. Something she said or did were sometimes so ludicrous we couldn’t help but laugh. Fortunately yet unfortunately, sometimes when she did such strange things it was because she had an infection going on and it manifested in a behavior change. Fortunate – because we learned how to identify when she was sick since she no longer felt those things. Unfortunate – because it really wasn’t good that she was sick.
With George our humor is limited to passing gas jokes. And memory jokes because, after three surgeries he sometimes doesn’t remember certain things. There's not always a lot to joke about - but we try to make one another smile at some point throughout the day.
If we can’t sometimes joke about what’s going on, we would go crazy. Comic relief is necessary – even when it’s sometimes at the expense of the patient.
A topic that is hard to talk about but which is a total reality for caregivers of spouses - - is how to cross the line back and forth between caregiving and spouse. I remember, especially after the first surgery, I found it very hard to go back to “spouse” mode after so much time spent being a caregiver. And it happened again when, for ALL of 2016 I was a caregiver, first helping him after his neck issues and then after playing nurse for three months following his cancer surgery. Because of all the health issues, he has limited movement. I give him a lot of credit for being able to learn to sleep on his back after years of being a side sleeper. I find that unless I am laying on my side with my head flat, I don’t sleep well at all. The first time George was able to “spoon” me in bed, I cried. I hadn’t realized how much I missed it until I had it back. It doesn’t happen much still to this day, but those few times it does I appreciate it. We do hold hands in public, when we take walks, and so on. There is a little bit of cuddle time. In my caregiver support meeting, it is clear that caregiving trumps spousal intimacy – although the act of caregiving is a form of intimacy…. Just not one that most other people experience. It is only in these meetings that I find that I have something in common with other people.
Sad reality – but cancer has become my life. When I’m home it’s there. When I’m not home, I’m still thinking about it. When I’m home, I yearn to get away sometimes – yet when I’m not home I feel drawn to being there.
My world as a caregiver finds me shrinking more and more into myself. I know that this is dangerous. I recognize the symptoms of depression coming over me. When I wrote a few weeks back that I was at a loss for words, I should have known that a dark time was coming, that I was on the cusp.
As we come to grips with the “what next” for George, I am finding it difficult to adjust to the new reality. Why? I am not so sure. Is it because the light at the end of the tunnel has taken a sudden shift?
We recently discovered that chemotherapy is being recommended. After four years of being told, “Chemo won’t work on this type of cancer” or “the chances of chemo having a positive effect is less than 15%” and “he doesn’t present as a sick person so why make him sick because then he won’t be able to fight when he needs to”… now things have taken a reverse course. What’s changed, I wonder. I don’t want George to be sick…. Is it for selfish reasons? Because the impact on me will be to isolate more as I will have to dig in my heels to do everything - - which really isn’t a change from what I’m doing now…. But George will be even more reliant on me to help do things for him. I don’t yet know what those may be but there will undoubtedly be more pressure on me to help him through.
I find myself thinking that this is the beginning of the end. I’ve read stories where chemotherapy takes people down - -- and then out. I’m sure there are success stories out there but their prevalence is not as great as the unsuccessful ones. I’ve already lost so much of George in the past four years - - will I lose even more of him now? It’s scary, for sure. Tomorrow we meet with the oncologist where we will likely talk about meeting with someone about “chemo education”, find out where we need to go to get a port inserted and then line up the chemo treatments. Tomorrow is the next phase of our cancer journey. I am scared. I am angry. I don’t want to go through this. I hate this. This is the truth about caregiving. Sometimes things just suck… but because we love our patients… we do what has to be done. I love George – and if he feels this is his best chance at an extension of life – I will do what I have to do for him. Even if I don’t agree. I am not the one fighting cancer. He is.
We have no good options in front of us. Nothing will cure what is going on. The chances of chemo slowing things down is still pretty low – but better than nothing I suppose. I still don’t have to like it. Do I?
I have made the decision to get professional help for dealing with this next part of the journey. I didn’t realize it would be as hard as it is. I want to believe I am strong and can do this on my own. But the truth is that I can’t. I am not as strong as people think I am. I am extremely vulnerable right now. I am not looking forward to this next phase of treatment. It makes me ill to think about it. I don’t like this feeling so I am going to get help to remedy it. The best thing I can do as a caregiver is to take care of that part of me that the outside world doesn’t see because I do not allow it. We have become good at showing only what we want others to see. Outside of our home we look just fine - for the most part. At home, it is different. No one knows exactly what goes on behind closed doors.
I am sharing this because I know there are others out there. There are others who need to know that everyone has their own limits on what they can withstand in a lifetime. And no one is immune to reaching the limits of their own abilities to handle things.
I need to work through this on my own terms, in my own way. I don’t want to talk about this with others right now. Not until I figure out what it is I need to work through. I don’t want your pity. I am tired of sad looks. I don’t want more advice. What I want is to be “normal” it that’s at all possible. (I’m not even sure I’d recognize normal.) If you are reading this and you happen to see me, find something to talk about that is totally unrelated to cancer. I find that anything that diverts my mind is actually helpful. That’s probably why I am enjoying audiobooks right now.
So, this is the truth about caregiving. It’s hard. It’s lonely. It’s frustrating. It’s exhausting. It’s time consuming. It takes over your life. It can drain you physically, emotionally, mentally. There have been times when I could physically feel George drawing strength from me, especially in those early days. Whether you are caregiving long or short term, for a spouse or other family member. It doesn’t matter what the issue is that your loved one has, it’s all similar in many ways.
Yet caregiving is what we, as spouses or other family members, are called to do. Marriage vows state “for better or worse”…. So you do your best to be the best caregiver you can be. When things get bad and you fall down, you reach down and strap your boots back on and get on with it. You don’t give in or give up. You dig in to your soul as deep as you can and give each day the best you’ve got to give. This is what love is all about. It doesn’t have to be perfect. I apologize if that’s the impression I’ve given all these years. Now you know my truth….