People suffering with Severe or Very Severe ME cannot survive without a caregiver ("carer" in the UK and elsewhere). Usually a family member starts out as the only caregiver. But the family member quickly becomes overwhelmed under the weight of responsibility caring for someone with the double curse of Severe ME:
Too helpless to care for their own basic needs
Plus suffering terribly with myriad unbearable symptoms
Caring for someone with one of these would not be as hard to manage. In terrible pain but can care for themselves, or totally helpless, but can enjoy a conversation, watch TV, eat normal meals. The double curse creates a catastrophe of overwork and stress for the caregiver.
When I brought my son to live with me he was 32 and had just been diagnosed with ME. But years without a diagnosis, and harmful advice from ignorant doctors, had condemned him to crashes from overexertion time and again, so his ME was Severe when he was finally diagnosed. He quickly declined all the way to Very Severe within months of moving in with me and I became utterly overwhelmed.
It wasn't until after 24/7 care for my bed-bound son in constant pain and distress sent me to Urgent Care with chest pains—and my own diagnosis of a life-threatening disease—that I learned there is such a thing as a paid “caregiver,” and that it was possible to have help. If you're overwhelmed like I was, get support and time for yourself with a caregiver.
Below is a message from one of our caregivers. I hope her compassion and care for my son and our family will help you embrace the concept of letting someone come into your home and help you.
It took us a long time to find the two women who now help me care for James, but it was worth the effort to find our gems. I asked Erin to write about her experience caring for James, but also to share the steps she takes to give James a bed bath, since I have never done it. My son is too shy for me to bathe him.
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From Erin…
When you cut your finger, you clean the wound and put a band aid on it. When you have a headache, you are often told to take some Tylenol. If the doctor diagnoses you with cholelithiasis, you are scheduled for a cholecystectomy.
Simple, right? What about the illnesses and symptoms that are not physically seen, hard to describe, but yet debilitating? The medical field is forever evolving and changing, trying to improve the health of people around the world. Quite often you hear ads for new clinical trials, new medications used to cure and treat the sick. But, when you live with an illness so complex such as ME/CFS, it is not as simple as swallowing a Tylenol, or just taking a nap to restore your energy.
My name is Erin Drew. I am a Certified Nursing Assistant (CNA), a nursing student, a mother, and a Caregiver. I have been working with Mr. James Strazza since September 2020. Before meeting James, I had never heard of ME/CFS. At that time I was working with a home health agency, and I just picked up this case because it was closer to home. I didn’t think anything of it. I have worked with so many people, so many different levels of care needed. Little did I know, this would be the most interesting client I had ever met. I am thankful for that day. I often tell James and his mother that they are stuck with me now, I’m invested in James’s journey, and I am along for the ride.
The day I walked into James’s home, I was met by his mother, Miss Galen. She welcomed me with a warm smile, very excited I was there. She was eager to tell me all about James. She sat me down and pulled out a binder. I was a bit confused, but I was interested in learning all about her son. She explained to me that her son had a rare condition, and that I would have to be very specific when dealing with him. She rattled off the name of his diagnosis, and to this day I cannot remember how to pronounce it unless I look it up.
I learned that James is extremely hypersensitive. He has what he calls ‘brain crashes’, where his brain feels like it’s on fire. He had a seizure from the dog barking too close to his room (the dog had to go live with a friend for several months), he has gotten very sick from foods that are seasoned and tasty, he has to live in the dark because the light is just too much for him to handle, he was completely bed bound, and barely able to physically move. And then she said: You cannot talk to James, only listen.
As Miss Galen sat there telling me about her son, I felt intimidated. I felt nervous. What had I gotten myself into? I didn’t think this would be the job for me. What if I mess up, what if I hurt him, what if he doesn’t WANT me to help him? Am I being rude if he talks to me and I just look at him? What if he asks me a question, should I respond or just stand quiet? I was not sure how to even approach this client, it was a whole different ball game.
But I decided to stay, and the journey began. I first learned the foods James liked. He would only eat a select few meals. So Miss Galen showed me how to make his:
hummus toast
pasta with fresh basil, lemon and parmesan cheese
hot tea
waters to drink (had to be warmed for 20 seconds and add salt)
And a few other things like his sweet potato on the side, or his zucchini. James could not have seasonings, spices, gluten, dairy, or really much of anything. She then showed me his medications and supplements that he would take daily. And showed me that they would communicate through text, or she would listen out for his bell to ring. He has a call button, and if he pushes it, it will ring to the kitchen and her room, this means he needs something.
That day, I only walked into James’s room long enough for me to wave hello, and let James see my face and say hello. I remember when I walked into his room, I could barely see. I was so nervous, I didn’t want to make noise or breathe too hard.
James had met a few caregivers before me, and it did not go too well. They didn’t seem to understand the circumstances around his illness. James is not the typical client that is on the roster of a home health agency, which consists of mainly the geriatric population. James is in his early 30’s (we are the same age) and although he is bedridden and needs a caregiver to be able to manage life, he also needs to feel comfortable with the person providing care for him. He texted Miss Galen and approved of me helping him. That put me at ease a little. So, I continued to come. And I’m glad I did.
In the beginning, James could not do anything for himself. So this is where we will start. I had to feed him (each spoonful), I had to hold his cup while he drank, I had to make sure to make as little noise as possible and navigate my way around in a dark room. James finally felt comfortable enough with me to allow me to assist him with using the ‘bathroom’. I would place the urinal between his legs and walk out. When he was done, he would ring the bell, I would come in, remove the urinal, pull up his boxers, and put his blanket back on him.
With time I learned how he likes his blankets tucked under him, and how he likes the pillow for his legs sitting in a certain spot so he can rest his leg on it, the little details of ‘James.’ Then he got to the point where he was comfortable enough to ask me to finally attempt a bed bath with him. It was a bit of a learning curve at first, but we then established a routine:
Get all materials needed BEFORE walking into the room: water basin, disposable wash cloths, 2 regular wash cloths, a hand towel, and disposable chucks pads.
Put a chair beside the bed and put the basin on it. Put the disposable washcloths in it.
I let him decide what we we’re washing that day. If a full body bath is too much, we could do: face and hands, upper body, or lower body.
I remove his blanket, and the clothing from the area we are washing. I put his noise cancelling head phones on him and an eye mask so I can turn the light on.
With the light on I lift his body and slide/tuck the pads under him to prevent water from getting on the bed.
I use the disposable wipes with a dab of unscented soap to wash the area, then use a clean regular washcloth to rinse. Then I pat the area dry with a hand towel (rubbing is too much friction for him).
I then turn the light off, take off his eye mask, put his blanket back on him, and leave the room while he is still undressed under the blanket.
When he is rested enough and able, he rings the bell and I go back in and put a clean t-shirt or boxers on him. Doing it right after the wash is just too much stimulation.
James will often ‘crash’ after getting washed. It’s rough, so we don’t get to do it often.
He has improved in some ways in the past 2 years. During mealtimes I am able to place his plate on his chest and he can feed himself. I can put water (only 4 ounces per cup) on his bedside table and he is able to lift it and drink it himself.
Bath time has changed a bit too. We are now able to wash from head to toe in one session, and sometimes even able to put clothes on after. James can now lift his arms while I am putting his t-shirt on him, and he can briefly lift his hips when I am pulling up his boxers. Although not often, I am now able to shave James’s beard when needed. And even his backside too, which makes cleaning up after a bowel movement easier.
I am able to have short, simple conversations with James now. As long as he is feeling good that day. Somedays he is in a ‘red zone’ and it’s back to square one. Red zone is the term he uses when he is super sensitive and in a crash or likely to have a brain crash easily.
With time, James and I have learned each other. I am thankful to be a part of his team, his journey. I cannot imagine living his life. James has not gotten out of his bed himself, for even a second, in three years. He has lived in the dark, with no entertainment, no peer interaction, no fun, no nothing for more than two years. He is now able to look at his phone for longer periods of time, so he explores social media. That is the extent of his social life. I am 34 years old, and at times I want to shut the world out and be alone. But James is also 34 and has no choice but to shut the world out and live every day completely alone.
James is so overlooked by the healthcare system. He has a diagnosis that is very much real, very complex, yet overlooked by so many. Not only does James live with this debilitating illness, he also suffers from anxiety and depression regarding his condition and his care. Solitude is used as a form of punishment for criminals, and studies have shown how traumatic this is for individuals. Yet, James has to live like this daily, with no answers to when or if he will get better. Not only does James suffer daily but imagine the strain on his mother. Miss Galen is his sole provider, his 24/7 caregiver, his lifeline. She cannot even leave her house unless I am there because someone has to be at the house with James at all times.
ME/CFS is REAL, and devastating. More light needs to be shed on these individuals and their families. They deserve it.
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In the US you can find caregivers on Care.com, but Medicare and Medicaid also provide for caregivers through participating agencies. I know many in the UK who have them. You can use something like the instructions below when posting an ad, requesting a caregiver/ carer, or as a handout to applicants you interview:
Responsibilities:
Care and support for X-year-old with severe neurological condition (Myalgic Encephalomyelitis aka severe ME/CFS).
Condition excludes physical exertion by patient. You will gently assist with any movement needed.
Caregiver must work to limit: noise, bright light, scents (lotions, hair products), animated actions, and unnecessary speaking.
A quiet, calm, caring demeanor is required at all times.
Duties include:
Household tasks, such as laundry, food preparation, light cleaning up.
Caring for the patient as needed – bed bath, clothing change, sheet change.
You will also respectfully, and as quietly as possible, support toileting needs. (select for patient's condition)
Emptying and washing out urinals
Changing adult diaper: cleaning gently, thoroughly, and without comments.
Toileting in the bed: use disposable bed pads under toileting area and clean up gently and thoroughly without comments.
Assistance using bedside commode. May need help to get on commode, may need help wiping.
Assistance walking (or using wheelchair) to bathroom. May need help wiping.
Assistance back into bed for recovery.