My mom moved in with us a little under a month ago. She drove herself here, she walked in on her own, and she's been rapidly declining since. We've been aware of a steady decline, but we thought she was just really tired. She went out of town the weekend before she moved in. When she returned to the Metroplex, she expended all of her energy packing and preparing to move. Then she moved, and while she didn't personally do any lifting, she'd reached the point physically that doing too much of anything was taxing. Even though she was directing her moving helpers, doing that all day long was exhausting for her. Then, instead of spending the rest of her weekend hours resting, she did some unpacking. The following Monday, she had chemotherapy -- additionally exhausting -- then spent all of the next week working with her house helper to get the rest of the boxes emptied.
When all was said and done, she was absolutely worn out, and we thought that fatigue explained the changes we were seeing in her. We don't go out and do too much these days anyway, but in an effort to help her recover, we made it a point to stay close to home, but even with rest, she's continued to decline. Two weekends ago, we were able to leave her here at the house for a couple of hours while James and I took the kids to do some grocery shopping, and she was ornery enough to argue with me about something silly. By this past weekend, she'd reached a shocking level of immobility and couldn't be left alone at the house at all, the volume of her voice has decreased dramatically, and her speech is so unclear that it sounds like she's chewing on a bag of marbles. Yesterday morning, she could drink from a straw. This morning, she couldn't. By today, Wednesday, she can hardly be left to walk from room to room without a strong adult physically assisting her, keeping her and her walker from taking a spill. Even with constant companionship, she's fallen so hard and fast so many times today (and over the last few days), if she doesn't break something soon, I'll be shocked.
We knew that she would change here. We all knew she would die here, she would go through the process of dying here. It's not a surprise that she's changing, but it is a surprise just how quickly things are moving, especially since the scan she had a month ago seemed so good. She's so very different this month than she was when we went to Disneyworld in April. She's in such bad shape, there's no way we could take that trip now. The rapid pace of things make things so, so difficult. All the changes we've seen in this short amount of time is honestly stunning.
It's hard to be one of the "sandwich generation," simultaneously caring for both parent and child. Today, I had to make calls about homeschool co-op and home health care. I spoke to both an orthodontist nurse and an oncology nurse. I had to assist both my toddler and my mother in the restroom. I gathered my mother up off the ground after a fall just as I gathered up my little ones. It's difficult personally to both observe and adjust to the changes in Mom. It's challenging to walk my children through the changes, explaining to them what's going on with Nanny's health when I don't even understand. It's heartbreaking to sit with my still young mother and hold her hand as I explain to her that there is likely little that can be done now, this is probably the way things are going to be from here on, and that there's a very good chance we'll have to hire that hospice care agency pretty soon. It's hard to do it all alone.
Today, as I spent yet another hour talking to the insurance company about medical equipment, Mom made her way into the restroom without calling for me to help keep her upright. (She's fiercely hanging on to her independence, even if it means she's putting herself in danger.) I'd just been debating needs vs. coverage with the insurance liaison, explaining the physical changes observed in this short time, and defending a new request for hospital tables and portable ramps. I explained to the liason that she's falling now with some degree of regularity, several times a day now, and right in the middle of our conversation, we both heard a loud crash. Mom's leg muscles failed, and she fell so hard and fast, she destroyed the metal toilet paper holder before crashing to the hard tile floor and becoming trapped between the wall and the toilet. I tossed the phone to the side, lifted her out of her prison, and helped her finish her business before getting her safely back to her bed. It's difficult to watch her decline, to watch her struggle, to watch her hurt herself. In her heart, she's so strong and brave, but I know she's heartbroken having to rely so heavily on me. There's a certain sad look in her eyes every time I pick her up off the ground. And she apologizes so frequently, no matter how many times I tell her it is my honor and joy to serve her in this way.
By the time I got back to the liaison, I was in tears from the whole experience. When I picked the phone up again, she asked me, "Who helps you? Do you have family helping you?" Nope, no I don't. My mom's friend Cheryl is our biggest support, but other than that, it's really just us. All of our relatives live elsewhere, and they all have their own lives to live. It's cool, though. There's no obligation to show up here and to help out. Even if they were interested in helping, a few of my family members would come with so much of their own personal drama that it's a relief to me that they're far away. I'll lift Mom off the ground all by myself a hundred times a day just to avoid dealing with that brand of nonsense. I think what troubles me the most is that it seems so many of her friends (coworkers, church pals, CR sponsees, etc.) and relatives -- people she's always considered herself close to, people she's sacrificed for -- are so consumed with their lives that they don't even attempt to bother with brief visit or a short phone call. They're all just gone, not willing to deal with her dying, and that's what bothers me the most. It's that sort of thoughtless, careless, selfish behavior that I find myself having to check my heart about. Every part of this experience is work, and as in most hard situations, most of the works seems to be internal.
Though her isolation is frustrating, it's not entirely unexpected. I read On Death and Dying and Leaning Into Sharp Points before she moved in with us, and both authors prepare caregivers for this kind of isolation. The surprise again is just that it happened so fast. Writer Paul Kalina quoting hospice documentary filmmaker Jen Peedom writes, "'By and large, Western culture doesn't have processes for dealing with death... There's a funeral and then... after a month, friends expect you to get on with it and then avoid you [if you don't]. I think that we are afraid of death; it makes us feel uncomfortable and confronted and we're not given the support and structure.'" It would just be nice if there were more opportunities for respite and support. It would be even nicer if she didn't have cancer and we didn't have to deal with this at all. Alas, she does, and this is now our combined journey.
I'm taking comfort in God's word, knowing our family has taken on His charge to care for my Mom as her time on this Earth comes to a close. As we continue walking in obedience, I know He will continue to provide us with all we need whether it be supernatural strength, abundant grace, or durable medical equipment. Above all, may we honor Him as we continue to show mercy to one another here.
"And behold, a lawyer stood up to put him to the test, saying, 'Teacher, what shall I do to inherit eternal life?' [Jesus] said to him, 'What is written in the Law? How do you read it?' And he answered, 'You shall love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind, and your neighbor as yourself.' And he said to him, 'You have answered correctly; do this, and you will live.' But he, desiring to justify himself, said to Jesus, 'And who is my neighbor?' Jesus replied, 'A man was going down from Jerusalem to Jericho, and he fell among robbers, who stripped him and beat him and departed, leaving him half dead. Now by chance a priest was going down that road, and when he saw him he passed by on the other side. So likewise a Levite, when he came to the place and saw him, passed by on the other side. But a Samaritan, as he journeyed, came to where he was, and when he saw him, he had compassion. He went to him and bound up his wounds, pouring on oil and wine. Then he set him on his own animal and brought him to an inn and took care of him. And the next day he took out two denarii and gave them to the innkeeper, saying, ‘Take care of him, and whatever more you spend, I will repay you when I come back.’ Which of these three, do you think, proved to be a neighbor to the man who fell among the robbers?' He said, 'The one who showed him mercy.' And Jesus said to him, 'You go, and do likewise.'" -- Parable of the Good Samaritan, Luke 10:25-37 ESV
"Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world. My brothers, show no partiality as you hold the faith in our Lord Jesus Christ, the Lord of glory. For if a man wearing a gold ring and fine clothing comes into your assembly, and a poor man in shabby clothing also comes in, and if you pay attention to the one who wears the fine clothing and say, 'You sit here in a good place,' while you say to the poor man, 'You stand over there,' or, 'Sit down at my feet,' have you not then made distinctions among yourselves and become judges with evil thoughts? Listen, my beloved brothers, has not God chosen those who are poor in the world to be rich in faith and heirs of the kingdom, which he has promised to those who love him? But you have dishonored the poor man. Are not the rich the ones who oppress you, and the ones who drag you into court? Are they not the ones who blaspheme the honorable name by which you were called? If you really fulfill the royal law according to the Scripture, 'You shall love your neighbor as yourself,' you are doing well. But if you show partiality, you are committing sin and are convicted by the law as transgressors. For whoever keeps the whole law but fails in one point has become accountable for all of it." -- James 1:27, 2:1-10