Caregiving for 54-year-old Quadriplegic Mom


Caregiving for 54-year-old Quadriplegic Mom

“Caregiving is killing me” is a statement that becomes more literal to me every day, unfortunately, although I recognize that’s a morose introduction. I wish I could be more helpful to people (some days I do alright with inspiration) but right I am just in survival mode. I apologize.

I’m 35 years old. When I was 29 my 54-year-old mother had an accident that left her a quadriplegic. We have been caregiving for her at home since that time. In that entire time, we have only been able to keep two PSS caregivers for longer than a week, one who has been with us from the beginning and one who stole my mother’s medications and ended up with a felony charge. It is me, my 90-year-old grandmother and my mother’s boyfriend sharing this job.

My grandmother is a work horse even at 90 years old and my mother’s boyfriend does a lot, but has been a severe alcoholic for 25 years, so he is limited. The one PSS caregiver that we have only works 5 hours a day/3-4 days a week. So, needless to say, I do 24-hour caregiving.

My mom needs to be transferred to do a bowel program, beginning with administering morning meds at 6 am. Then at 9 we stretch her for an hour, then bed bath, then dressing wounds, (which are new this year), then dressing, then transfer to the chair, then repositioning, then setting up her table and iPad and then spending the entire afternoon feeding her and picking things up if they get dropped. Because she cannot regulate her own body temperature, we adjust the thermostat all day. Then we figure out something for dinner, (often my grandmother’s responsibility) and then at around 8 pm after she has eaten dinner, I get mom back to bed and stretch her for another hour and get her positioned for the night. I have to stay awake to give her the last meds at midnight. Although to be honest, I am a night person anyway and because midnight to 2 am is my only time to myself, I take advantage of it.

Up until 6 months ago, I was working at a restaurant between 2 pm and 9 ish three to four days a week in addition, but we have had so many doctors’ appointments lately that even that became impractical. She had a spinal cord stimulator implanted for pain management. I drive back and forth to Boston from Maine for these appointments. Every Monday we go to a wound care specialist. Then this week I took her to Boston for her Botox injections and brace clinic. Today I take her to a respiratory doctor. We see the PCP, we see gastroenterologists, we see a pain clinic, a wound care specialist once a week, we see respiratory doctors, physiatrists, doctors for osteo health, specialists at Spaulding Rehab in Boston, the brace clinic, wheelchair clinic, outpatient physical and occupational therapy from time to time and of course, ER visits at least every other month.

At this point, we are all so burned out that we are all miserable. I have a boyfriend by the grace of God. We have been dating for two years and we have spent literally six nights together in two years. Total. I can’t leave this house. I’m 35 and I gave up my career, (I have a master’s degree and was working at a university in Arizona in study abroad coordination – nothing major, but I enjoyed it). I have probably given up my chance to start my own family. I decided many years ago I wanted to live in the south west, so in addition, in order to move back to New England, I gave up my house and everything that I loved, (hiking, biking, canyoneering, cave diving, climbing, kayaking, red rocks, big mountains, dry heat, clean air, peace and quiet, room to move around). I hate the northeast now. I hate the cold. I hate the gray. I’ve been bucking up for 6 years now, but I am getting really sick of it.

After her accident, we had a few years where we were doing pretty well. My mother is beautiful, witty, kind and the center of the room. She just always had the indescribably quality that draws people to you. But about one year ago her health took a bad turn. She now has unbelievable pain. Most days I just watch her writhe in agony with her eyes rolled back in her head. She begs me to help, but there’s nothing I can do besides try to move her and shove medications into her. She lost 60 pounds. She cannot breathe well because her body is so compressed so almost every moment is a struggle. Every day she truly believes she is dying, so in addition to everything else, we have to say our goodbyes over and over. We are in a state of constant high alert. We have baby monitors on at night, so even if we fall asleep for a few hours, we still get woken up if her catheter isn’t working or if she’s uncomfortable.

This has been way beyond what we can manage for about a year. I have chronic headaches that create an irritation in my left eye. I developed a stress related bladder condition that makes the tissue inflamed so that it hurts to go to the bathroom and I have a chronic pain in my lower abdomen. Recently I’ve developed I shallow cough that nobody can diagnose and I’ve had 3 chest x-rays since her accident because of severe pain my chest that turns out to be stress. Just in the last week I’ve developed something respiratory without cold symptoms. Again with the chest pain. I went to the walk in yesterday, but nobody ever knows how to help since most everything seems to be stress.

We have no other family. My mother was an only child. I’m an only child. I’ve only met my actual father once in person. My step-father, who we had sort of lost touch with anyway, called once while we were in the hospital in the beginning and never again. We are pretty alone in this. Just this week our EIM coordinator let us know that not a single agency in Maine is even TRYING to advertise or hire staff in our area anymore. Not one. Because the cost of living is so high where we are, nobody would be able to survive on what the agencies pay. So, there simply are no caregivers here. That seems to be true. But I had been led to believe that they were at least still trying to find PSS workers, but I guess they have literally given up. The costs of advertising and trying to staff here aren’t worth it to them. We advertise on our own, (I repost every month), but the response is sparse, (the pay is just very low). Still trying.

And mom is not the easiest person. She was a perfectionist before. At a doctor’s appointment last week she made me check a dozen small Sunchips bags to determine which one had the least air. If I pick out the pink shirt, she wants the gray shirt. If I pick out the gray shirt, she wants the purple fleece. Even when we’re not leaving the house we could never use non-sport socks with her sneakers, for example. She likes her food divided up, so if you accidentally get a pea and a carrot on the same fork, forget it.

When we drive somewhere, she INSISTS that I leave the wheelchair turned on so she can tilt backwards and relieve pressure. Sounds reasonable until you learn that she falls asleep and then drives the chair into the back of the driver’s seat, smashing her feet and leaving me to have to reach around while cruising down the highway to somehow turn it off or switch it to a mode where she can back up. But she will not let me leave the chair off. Just won’t. The one bed sore that she has was the result of wearing a diaper for too many days in a row with the hard elastic cutting into her skin. I warned her it was getting worse. I begged her to wear regular underwear. I begged and said it’s going through the skin now. But she refused. Simply refused. She had to wear a diaper. And now, for over a year I have been managing a bed sore that won’t heal because of location, re-dressing it every day, (sometimes multiple times a day) and weekly wound care visits at yet another hospital.

I used to be healthy. I guess I still kind of am. Besides drinking way too much and having depression and anxiety (that along with anger are really my only remaining personality traits), I still try to do yoga and workout. And there are some good things. Living at home has enabled me to build a tiny house on wheels in our backyard (not finished, but intended to be a caretaker’s lodge). I get paid (not much, but it’s something) for caregiving. This time is counting toward my student loan forgiveness program. And, I am getting to spend years with my mother and grandmother (and dog) that I might have missed.

But I have still been asking her to consider a nursing home for a year. She won’t. She starts crying and gets hysterical and says she can’t breathe, it will kill her, she’ll be dead in a week, how could we even consider it, we must be monsters, etc. This week – not being able to breathe myself – is the last straw. I’m not even sure a nursing home would take her at this point. BUT, I love my mother, which means I’ll probably never leave. One of us will eventually die. I don’t want to have to see her go to a facility. I really don’t want that for her sake and I will feel like a huge failure. But when is enough enough? I sincerely do not know.

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Rose, thank you so much for sharing your story. You have given so much to caring for your mother and I can tell you have been a huge blessing. You have good ideas and must have excellent Admin/Organizational skills to manage all the appointments. It tires me out just reading!! I know how I can pray for you... It's amazing that your time Caregiving can be counted toward student loan forgiveness, what an awesome idea!! I like the tiny house project. I see you as a successful Caregiver - amazing, actually. I look forward to learning more and hopefully you can blog more - you will find encouragement. Thank you again for sharing.


Hi Rose--Forgive me for my slow response! I've been thinking of your blog post all day.\r\n\r\nFirst, I'm so grateful you wrote to us. There's so much that happens and you take the hit on so many levels. It's an awful feeling to feel trapped and like you're losing life. \r\n\r\nSecond, please keep writing. We're here to receive your words and virtually support you. We understand and we know there's not an easy answer. And, that's one of the worst parts -- it's just not easy.\r\n\r\nWe so appreciate all that you are doing. Please keep writing to us.