A lesson in caregiving

Three years ago, my wife had her right knee replaced. A couple of weeks ago, she had the other knee replaced. She was in a lot of chronic pain before the surgery. Now that she’s recovering, she’s in a more chronic pain, but it’s the kind that results from having a joint of metal and plastic melded to her femur and tibia.

This also means for a couple of weeks now I’ve been largely her sole caregiver; hence I’ve had a hard time finding the time to post. There’s lots of physical therapy she is supposed to do three times a day but often can’t manage. At least initially this meant that I did a lot of her joint movement for her. It also means sticking pillows under her knees and elevating her legs on an incline. Also there’s lots of icepacks to wrap around the new joint, blankets to drape over her and pillows to adjust.

There’s lots of other stuff to do for her too: shoes to put on her and tediously getting her pants on. I make all the meals and clean up afterward too. I have a myriad of other chores that she would normally do, including laundry and feeding our cats twice a day. I help her shower, dry off, put her underwear on and push in chairs so that she can get seated properly to eat. There’s a water bottle she persistently wants full of ice. And if I find some spare minutes, there will likely lots of ad-hoc calls for more aid.

I can usually work in a walk if she is stable, elevated and has an ice pack on the joint. I also use this time to dash to various stores so we don’t starve. Being her sole caregiver, I can’t be too careful. I use an N95 mask whenever I am in public indoor spaces.

If I were 25 it probably would be less of a deal. But I am 65. Three years ago I went through the same thing. While it was a lot of hassle then I don’t recall it affecting me as much. Her first day home was particularly exhausting. My back hurt badly and I felt run ragged since I’d been hopping for almost fourteen hours. Part of it is that there seemed more to do and there was more pain this time. But it’s also that on some level I must be declining a bit.

The pandemic didn’t help. Through it all I’ve managed to get plenty of aerobic exercise (walking four miles or so a day) but no weight training as I don’t own any weights. I let my YMCA membership lapse and it’s still lapsed as I’m still leery of catching covid-19 there, which I’ve somehow still avoided.

So this post is probably a bit whiny as we are thankfully retired. It’s good to have the time to take care of her, but it’s really a job for younger people. Thank goodness she’s partnered. Otherwise she’d be weeks in a nursing home.

In spite of the hassle of taking care of her, it’s done with love. But it’s also a reeducation in real life and the reality of hard work. I’m astonished by how much work is involved and there’s lots of things she can do by herself. I’m trying to imagine taking care of her if she had Alzheimer’s, for example. There are lots of caregivers doing work like this, and I’m guessing that this work multiplied by at least three.

And yet caregivers, when they are employed, make astonishingly poor wages. They are in chronic high demand but that’s not enough to provide them with a true living wage. The work is tiring, tiresome, demanding, often ad-hoc and frequently frustrating. It can be so persistent and exhausting that it’s unclear if you could get a caregiver regardless of the wages paid.

My wife is improving but there are good days and bad. She can do more things for herself. She manages her medication, and she has quite a list that needs coordinating. I’m not sure I could keep track of them all or administer them properly. Yesterday she had a major complication. Her knee improved but her calf was swollen and hot to the touch. The physical therapist had her get an ultrasound at our local hospital. They found a blood clot behind her knee and she’s now on a blood thinner. Hopefully it will improve. She’s close to moving from her walker to a cane, which would be a big improvement.

So many of us sneer at people who are caregivers. It’s like they’re only good enough to be a caregiver. My reality is that it’s one of the hardest jobs you will ever have. Caregivers deserve a living wage, not to mention our admiration and courage. If you don’t believe me, there’s a good chance you will find out one of these days. It’s not for the faint of heart.

Caregiver Guilt

My 84-year-old mother was released six days ago from Holy Cross Hospital. We now have a name for her condition: congestive heart failure. Basically her heart has been repeatedly damaged. Her heart can no longer pump enough blood to the body’s other organs. This causes blood returning to the heart to back up, which causes congestion of fluids in her tissues. The condition can be treated but it cannot be cured. Some medicines help to mitigate some of the symptoms. She tires easily but cannot sleep for very long.

She was released from the hospital but she did not go home. Instead she went to a nursing home in her retirement community called Renaissance Gardens. It’s a lovely place but it still feels like a hospital. She has a room to herself on the fifth floor. She goes to physical and occupational therapy in the mornings. She complains about the terrible food. She had suffered significant hearing loss so the TV holds no allure to her anymore. Her sight isn’t great either. My Dad visits her a couple times a day but mostly she is alone. She feels lonely and forgotten.

It could be worse. My sister Teri flew up all the way from Florida to spend the weekend with her. Even before the accident she’s been blessed with sons and daughters who have come to visit her in their new apartment in suburban Maryland. We’re a spread out family so it’s no minor matter for most of us to visit her. I’m sure she appreciates the time we can spend with her but it is apparently not enough. She wants companionship all the time because she is scared and lonely.

She wants to be back in her apartment. She was there for most of the day on Sunday because we took her there and could care for her. But we had to return her to the nursing home by the evening. She did not want to go back. She seemed scared that we were all leaving and going back to our normal lives. “But what will happen to me?” she kept asking us. She wanted to know what would be happening to her every hour of the day and night. She had arrived in the nursing home on a Friday afternoon. We didn’t know what her normal weekday schedule would be. But that wasn’t good enough for her. When will breakfast be delivered? When will I get my shower? When will therapy start? When will your Dad come to visit me? We did our best to get all the answers but there were lots of gaps. We even posted a schedule next to her bed. It seemed to calm her down a little. But she watches the clock carefully and gets anxious if anything happens a minute later than the scheduled time. Her underlying fear is I think that we will abandon her.

We explained if she could get back to where she was before the hospitalization that she can live at home again. But it looks like a long road. It took a week a year ago to reach that point. She has a lot less muscle mass now. She looks and is frail. I am not sure if she can reach that point. Time will tell.

Most of her conversation is naturally about her problems. It is hard for her to step outside her own life. She looks confused and scared. I hold her hand. I talk to her. I stroke her forehead. But it doesn’t seem to help much. She hates the whole nursing home business. She hates having a body that won’t do what she wants it to do. She hates not being able to do things on her schedule. She hates the waiting. She hates the loneliness. She snaps at her husband.

She is seriously depressed. She is on an antidepressant and has seen a visiting therapist. We cannot wait for the medicine to kick in but we know it is likely weeks away from having any potency. Perhaps it will help her feel better. But her underlying physical condition is unlikely to improve much. She has every reason in the world to be depressed. I would be depressed if I were in her condition.

Even if she can move back to the apartment she cannot resume independent living. In reality she hasn’t been capable of independent living for more than a year. Instead my father is her caregiver. The truth is that even before she moved that on many days she was not up to even assisted living. She could not bathe herself. She usually could not dress herself. She could not make their meals. Without my father she would either be in a nursing home or one of us would be her caregiver.

She thinks we should take care of her. She has a point. She took care of her own mother in the last years of her life. My mother’s story is a remarkable one in many ways. She tended to her mother 24 hours a day while taking care of a newborn baby, my sister Lee Ann. She had only her new husband to offer some modest relief after he came home from work. That was more than fifty years ago. My mother was the good and faithful daughter who did the dirty business with her parents that her other siblings wouldn’t. She wants to know, why shouldn’t we now do the same for her?

It is a question I have a hard time answering. It is a question that fills me with guilt. My mother not only gave me life but also cared and nurtured me into adulthood. I could respond that when she was more lucid several years ago she was adamant that when her time came that we gave our own families first priority. But she wasn’t scared then. Now she sees the reality of a nursing home. The nursing home may be clean. The staff may be competent. But they are not family. They cannot help her feel better.

And I’m not sure family can do that either. We are there trying to calm and distract her but not much works. Instead she very naturally draws us into her circle of anxiety and pain. She pushes primordial buttons of concern and guilt that also leave us anxious and enveloped in her miserable world. If we pull away it may be because we aren’t strong enough to endure it for too long.

And yes we do have our own families to take care of. And I have a family to feed and a wife to cherish. My drains still get clogged and I must still deal with the ant problem in the kitchen. And I also have this thing called a life. I enjoy surfing the web at night when I can. I enjoy blogging. I like to go out and see the occasional movie. I want to keep doing all these things, albeit not as frequently.

And yet my mother is now thirty miles away from me instead of six hundred. The psychic and real distance closes. In truth she is always on my mind. Yet I try to enjoy life. Last Saturday I enjoyed a 27-mile ride bike ride into Falls Church on the W&OD Trail. For a while anyhow I was able to clear my head. With my heart racing at over a hundred beats per minute for a couple hours I was able to revel in the feeling of being alive and healthy. But then it was over and the thoughts of my mother and her pain crowded around me again.

There is no escape from my feelings for her. We have a bond of love. All I can do is choose how deeply I want to ascend into her level of misery. I could potentially have her live in our house. I could cater to her and bring in nurse’s aides when I had to work. And that would turn me and my family turned upside down. But I could be the good son. Or I can pull back far enough so that I am not swept into her vortex. But I will always feel its pull.

For now staying at the edge of her vortex is my choice. But while I will mourn her loss when she has departed this earth I wonder if I shall berate myself for my selfish choice. I know I can choose to feel guilty or not. But the guilt is likely to cling to me regardless of my actions. It seems intrinsically woven into my nature.

There is no right or wrong way to respond to my mother. I know there are some problems that I cannot make go away, and there are some pains that no balms can soothe. These are some of those unfortunate facts of life. This is yet another strange black box both my mother and I must navigate through.

I see her again tomorrow afternoon. I am both anxious to be there for her and selfish enough on some level to wish I were not going at all. I hope it helps her and me but I am not that naive. I will just step gently into the vortex for a few hours before I pull myself very deliberately back.