My Beautiful Mess

Taking care of loved one is one of the most beautiful and hardest things you’ll do. Here is what I learned as a hospice caregiver.

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In 2021, my father died from congestive heart failure. I’ve wanted to write about it, but wasn’t emotionally ready until now. My father had a heart attack back in 2003. Ever since then, he was limited physically, but that didn’t mean he lived a limited life. My dad had a big personality. He was very outgoing and loved making friends and having parties. He absolutely loved music. It was a huge part of my dad’s life as a choir director and former band member.

But in late 2019, we noticed a decline in my dad. His edema started to really become problematic. He went through a series of procedures and medications to control it, but during 2020 it started to worsen. Every time they extracted the water through a plural tap, it would come right back within a few months. In June of 2020, the cardiologist told me that my dad was in the final stages of congestive heart failure. He explained that no one could predict how long that final stage would last, only that it would eventually become unmanageable until his heart gave out. Eventually during 2021, the time in between pleural taps got shorter and shorter. It was awful to watch my dad essentially drown to death from the edema.

You May Be Ready for it Before Your Loved One Is

Several people told me that people can be resistant to hospice. Hospice, also referred to as palliative care or end-of-life care is associated with dying and so your loved one may reject the help initially. They may feel like entering hospice is “giving up.” They may even feel hopeless or find it hard to accept that their life is coming to an end.

Several nurses told me that families often wait too long to get hospice. Hospice isnt just for the final days or weeks, rather it can be for the final months even the last couple of years. It is essentially for when no more can be done to heal your loved one and now it is just about making them comfortable.

In 2021, my dad officially entered hospice. He too was very resistant to it initially because it was hard for him to face the truth. Who could blame him? It’s important to remember that hospice patients need time to process and grieve their own life too. Ultimately, you may have to be honest with them and tell them that its not just help for them. It is also help for you.

You Will Be the Hospice Nurse

One thing I didn’t know about hospice is that you will be doing a lot of the heavy lifting. I suppose I assumed that hospice nurses would take over care for my dad. That’s not what hospice is. Rather, they are there to teach you how to properly care for someone at the end of their life. The nurses come a few times a week and keep an eye on the both of you. They check to make sure that there is enough medication, supplies and equipment.

The main bulk of the caregiving is going to fall on your shoulders. You will need to be monitoring the day to day needs of your loved one, emptying his or her catheter, administering medications, dressing wounds, etc.

Hospice will provide you with the equipment and things you need, including emotional support. But the bulk of the work will fall on your plate. Try to remember that it is a blessing to be able to spend these last moments with your loved one.

A Family Affair

One thing I did not understand was how many people it takes to care for a loved one. Perhaps that isn’t always the case for some families, but it certainly felt that way for us. There were times when my dad couldn’t get to a bathroom on his own and so it took my brothers and my husband to pick him up and help him walk.

Every family member ran errands and took care of household chores for him. My dad had big shoes to fill. It took every member of our immediate family to make sure that my dad’s needs were met. There were many times I felt totally overwhelmed, not just because of all his medical needs but because of all the other household needs that needed to be done like managing finances, getting groceries, picking up medications and other things. If you have the ability, enlist all the help you can.

If you have just started caregiving my advice is to enlist the help of anyone who offers. Even if it is just offering you an hour or two to get away or bringing a meal. You will need all the help you can get. Don’t be prideful. Accept the help.

Your Life is on Hold

While someone is dying, your life will be on hold as a caregiver. For us, everything was put on hold because my dad needed us. My brother delayed a much needed surgery for more than a year because my dad relied on his help. During the last two months of his life, I had to come back to San Antonio even though I had moved away because I was a stay at home mom and I was the only one who could be with him during the day.

During that time my life was completely on hold. At one point, I was the one managing all his medications and therapies and so I felt as if I couldn’t even go to the store. The one time I went out with my niece, my mother immediately called me back. I wasn’t even able to homeschool because my father’s care was 24/7 and took all my time and energy. It was very hard to be separated from my husband all those weeks, but I’m glad I was able to do that for my daddy.

I absolutely don’t regret sacrificing these things. I was so honored to do this for my dad. But ultimately, when you are a caregiver, everything gets put on hold. Your plans, big events, vacations, it all gets pushed aside to deal with the care. It won’t be forever. That is both good and bad news. One day, you’ll get your freedom back, but it will come with mourning and grief.

Their Life Is In Your Hands

One thing I was not prepared for was that you have the pressure of someone’s life in your hands. When my dad started to take morphine, it would make him sleep for hours. Consequently, his blood sugar would drop. I would test it while he was asleep. Often it would drop dangerously low. I’d have to bring it up with glucose or orange juice. Many times I would wake up in the middle of the night to regulate his blood sugar. I knew if I didn’t that his blood sugar would drop and he was in danger of diabetic coma. Even my brother noticed I was sustaining my dad’s life. My siblings and mom realized he might have died sooner because they didn’t know to do this.

One time I confided in one of the hospice nurses that it was getting harder to get my dad to swallow pills and that it was sometimes hard to get him to eat. I also said that it was getting harder to control his blood sugar regardless of his diet. They very gently told me that there would come a time where he would not be able to take medicine or eat. They also told me that in the end, his blood sugar might be uncontrollable regardless of what I did.

I never considered how disturbing it is to watch your loved one stop eating. In my dad’s final days, his eating became irregular. At one point I offered him some food and he pushed it away. Later on, he asked me if he had eaten. I’m sure he felt his blood sugar low. I asked him if he wanted to try again. He said yes. But as soon as I offered food again, he turned his face away. It was distressing in the final days when he could no longer take medication or take food anymore. When they get close to the end you feel completely powerless and helpless. They are dying and you can’t do anything about it.

You’ll Want it to Be Over

I think one of the things that surprised me is that I wanted it to be over – not because I wanted my father gone, but for many other reasons. First, it was harder than I ever imagined to watch the person you love, suffer. My father who had once been an active, fun loving man, became serious and perpetually irritable. Since he was completely bedridden, he had no quality of life. I watched all the joy disappear from him a little at a time. I think that was the hardest aspect about all of it.

My father was a huge music lover. There wasn’t a genre or era of music that he didn’t love. Music was a huge part of his life. From having his own high school band in the 1960’s to being a choir director for many years at church, my dad hated silence. He had music on all the time as if he had a soundtrack to his life. In his final months, I offered to play him some music. He refused. He couldn’t listen to music. I suppose it hurt him too much. It reminded him of a life he would never have again. This crushed me.

I found myself wanting it to be over because it was hard watching him suffer and also because we were all exhausted. I never knew how physically taxing it was to take care of someone who is dying. The longer you do it, the more tired you are. The longer you do it, the less they can do for themselves and so as you grow tired the demands increase. Of course as soon as they are gone, you’d do anything to have them back. In fact, you may find yourself months afterwards wishing you had them back even if it meant taking care of them again. Your grieving self may be tempted to bargain with God that you’d do it forever if you could only have them back. These feelings are all normal stages of grieving.

Metabolic Changes Are Disturbing

Something I didn’t know was many of the end-of-life changes are downright disturbing. During the final days of life, metabolic changes occur which can affect the cognitive function of your loved one. They may hallucinate, speak to dead loved ones, and lose touch with reality.

Hospice nurses referred to it as “changing.” I had no idea what they meant, but the night that happened, it was obvious. All of a sudden, my father stopped making sense. He began to ramble non-sense even though he had always been coherent before that. He believed he could get up and walk even though he hadn’t walked in months. My father began to call out for people he loved, like a friend of ours who lives overseas and my husband who was back in Houston.

It was very disturbing to watch my dad in those final moments lose coherency. Its troubling because you worry their confusion may cause them fear. Towards the end we noticed that my father’s skin looked strange – ashy, blotchy, scale-like. When we asked the nurse she told us to remember that the skin is an organ and it was starting to shut down down to conserve energy for the heart and the lungs. The end of life signs can be upsetting to watch.

They Are Grieving Too

I think one of the hardest things I witnessed was watching my dad grieve his own life. We were trying to make some room for medical supplies and he told me to throw out his music books. “I’ll never lead a choir again, ” he said somberly. One day my dad told me about one of the biggest regrets of his life, his early relationship with my older brother. Even though the relationship had been repaired, he still harbored regret decades later. Don’t be surprised if your loved one needs to confess secrets to you. Even if they are shocking, try your best to just listen and be reassuring.

Your loved one may be quiet. People who are dying spend time quietly introspecting. They may worry how much time they have left or what will happen when they are gone. After my dad passed, I found a notecard in his desk. It was heartbreaking. He had written down all things he thought he would miss. They may have anxiety or depression – even have panic attacks. This is normal as they prepare to say goodbye.

It Prepares You

More than ever, I understand God’s purpose in caregiving. I think caregiving prepares you to let go of your loved one. If we had it our way, we’d never let go of a person we loved. But watching your loved one suffer, makes your selfishness take a back seat. You don’t want them to leave, but your mercy and compassion takes the driver seat. Taking care of your loved one helps you to accept their mortality.

It also makes you more selfless through sacrificial love. Caregiving takes our love beyond empty words. Caregiving is love in action. Death will come for us all and seeing your loved one die can cause you to want to set affairs in order. I think it also helps you to consider your own mortality. I know during that time, it caused me to focus on things that really mattered and also helped me to let go of things that didn’t matter in eternity.

No One Can Tell You How Long

When we were in this season with my dad, one thing we wanted to know was how long he would be with us. Certainly you understand that any day could be the last, but it is nerve wracking not to know if you have months, weeks or days. Even my dad said to my mom, “I wonder how much time I have left.” My mom just smiled and said ” I wonder the same thing about myself honey.” Indeed we asked the nurses many times how much time we had but they did not want to give us an answer.

As much as you may want to know how long your loved one will be here, no one can tell you. Not even the hospice nurses. What I can tell you in that natural death is like a ceiling fan coming to a stop. It slows and slows until it comes to a complete stop. There were times when we thought my dad would not last then he would have a good day that would make us think he could linger for a long time.

A hospice nurse gave a great analogy of a rollercoaster going down. There would be high humps and valleys. Each hump would be lower than the last one and so would each valley, all the while trending downward until they come to a stop.

Final Encouragement

Thank you for reading this post. If you are currently going through end of life care with a loved one, I’m so very sorry you are going through this. I want to tell you that you arent’ alone. If you are struggling as a caregiver, ask for help. Most states have caregiver resources and support. Don’t hesitate to tell your hospice nurse than you need to talk if you need to. They can put you in touch with counselors and support groups. Grieving is a process and it often begins before your loved one has passed. Be patient with yourself and give yourself time to grieve.