Practical Tips For Caring for the Terminally Ill

Recently, my church has been involved in caring for someone who has cancer and a brain injury. This has stretched us all in the Community House and is very stressful, especially when he makes choices that is bringing him quickly closer to death. Not everyone will have hospice to care for them. And most of us will find ourselves needing to care for a parent, friend or other family member who has no one else to care for them. Having the experience of caring for someone waiting for death is not just for saints, but is a common human experience, full of grief and perhaps some satisfaction.

Sylvia LaFrance is a friend of our community, and has spent years in caring for the terminally ill. This is a letter she wrote to her dautgher in 2000, who asked for advice when the daughter needed to care for a terminally ill man. I found it to be chock full of helpful tips, so I pass it on to you.

Dear Sarah Jo,

Well, you don't ask my advice often, but the questions you do ask are doozies. I have worked in the field of care giving for thirteen years now and I don't know what I know. I'll do my best to give you something to work with, in this time of sadness, challenge, and liberation.

I'm sending you a whole stack of books. All of which I have called on at one time or another in my care giver role. Start practical. Read the books on the physical care giving first and get comfortable with the fact that you will be touching "your patient". He will become progressively weaker and disoriented, so it is important that early on you establish trust with him. Be "the one" who he can always count on to give him straight answers to his questions. Don't take any guff, and don't back down if it is in his best interest. But keep in mind, your part of this is to pray daily for wisdom and a kind spirit. He will be going through extremes of emotion and bodily defugelties that he has never known before. You will be the one to be there when everyone else has gone home and he doesn't have to be on good behavior anymore.

Next read Elizabeth Kubler-Ross's books On Death and Dying and Death ~ The Final Stage of Growth. Both will give you tools you will be able to use. The rest of the books might be interesting reading while you are just hanging out and he's napping or whatever. I was never bored being a caregiver, but I always made sure I had some good books on hand to read. There is something quite philosophical about being with terminally ill people. There is no avoiding the question of life ending and what happens next. It will be a period of great growth for you that will give you a rounding out of personality that comes with great responsibility.

On this touching thing, for me it was the way I could convey many things that words just didn't seem to cover. Start small, a pat on the shoulder. I took care of Michael, a gay man, for almost five weeks before he would let me touch him, I persisted in the small touch. I knew we had arrived as patient and caregiver when one day, in the kitchen, he dropped his pants and said, "Look at this thing on my butt, it hurts, and I don't know what it is." I looked at his butt, there was a red thing, I got some Neosporin and rubbed it on. He pulled up his pants and from that time on he would let me do anything to him without embarrassment. I had to wait until he was ready, and realized I was the best physical ally he had.

The nursing part of the situation includes keeping the bed clean and tight. But, when making the bed, put a pleat in the bedding about a foot from the foot of the bed, it makes room for the feet and doesn't create what they call "drop toe". Keep the surrounding area as orderly as possible, given all the stuff you have to bring in. If possible keep a next room for storage and keep the bedside area as everyday real as you can. There is a lot to be said for him having familiar things around him. Books, even if he doesn't read them, if he is a reader, can bring comfort. Pictures of his loved ones. A flower in a jar. You know what I mean.

It is paramount that he and his surroundings be as clean as possible. Bathe him daily. If you need to shave him, use a hot towel and soak the whiskers for a minute or so while you assemble a basin, shave cream, a washcloth and a new razor. Use the washcloth to hold the skin taut, and shave with short strokes in the direction the hair grows. Use aftershave, and tell him how good he smells. At first you may need to stand outside a cracked bathroom door while he showers. Big rule is that you NEVER leave a patient unattended in a water situation. Clean bedding. Being sick leaves people feeling "unclean" and the better things feel and smell, the less that feeling can play itself out.

Always have a choice of things to drink, fresh, at his bedside. Keep meals simple and small. Just keep attractive snacks at hand. He may eat a pudding, when he would just push away a full meal. Keep in mind that cancer cells thrive on Vitamin C. There may be nausea. Root beer is my best cure for that one. If you run into this let his Doctor know right away, there are some medications that address that. Zofran is the best I ever had for Christina, $40 a pill, but quite effective.

Follow his lead if the suggestion is made about chemo. Only he knows what he is willing to tolerate. It would possibly make more days, but what of the quality of those days. Would I want to spend my last days on earth with poison in my system that made me throw up a lot and made my hair fall out. Consider dignity.

Part of your role, as a caregiver, is to regulate the company he has. Not who he can see, and who he can't, but what is his strength and interest level in the person/persons coming to see him. I have seen a "Friends Night" one regular day a week work out well. You will be the one answering the phone, as a rule, and you need to ask him what he thinks. If he does not want to see the caller, for whatever his reasons are, you make gentle apologies and suggest a later time might be more suitable. i.e. "He had a really bad night last night, and I think he should rest today." You take responsibility for the turndown. They may not like you, but he will love you for it.

When there is company, try to keep the visits in keeping with short, sweet time together. Treat the company as honored guests, serve them coffee or whatever, make the atmosphere as social as possible. But if someone is droning on about their problems, call them aside and show them something. Change the subject. And if it continues, you can always say "I really hate to see you go, but it is time for his______ (whatever), and I'm afraid we are slaves to this darn schedule we have to keep. And just stand there beside them, with the expectation of them leaving, until they take the hint and go.

Try for as regular a schedule as possible, keep a calendar at the bedside with appointments, or upcoming events marked, and mark off the days as they pass. Illness can be disorienting and the more you can fix them in time and space, the more comfortable they will be. As time goes on, comment on the weather, or near holidays, observe the holidays. Just a small token, not a wholesale change their whole darn world thing.

Talking is one of your most important functions. It should be done with a positive, realistic tone. I don't know if he is a religious person, but if he is draw that into the conversation. Let him use it for strength. Talk about death as "the natural order of things". It is every bit as natural to die, as it is to be born. Ask him if he feels ready to go, or if he has unfinished business. If he does, help him to do whatever it takes to accomplish a sense of peace. If he is not a religious person, it is late in the day, and he has already made his choices. It is not a time to superimpose your beliefs on him. I have never seen anyone not respond positively to hearing someone was praying for them.

Let him reminisce about his life. If you can get him to talk and it seems appropriate, use a tape recorder to take down his stories so his family can have them someday. Have him talk to his grandchild who is about to be born. I would give anything to have had something like this from my Grandmother Sherrick, who I never got to know. I think the whole thing here is feeling out the situation and doing what is right for that person. Suggest things. If you get a positive response to something, do that. If not, don't bring it up again.

Be aware of comfort levels of light, sound, and heat. A too bright room can get wearing on someone who is trying to sleep/doze; a too dark room can be depressing on an ongoing basis. Day and night there should be some source of light in the room for orientation, if just a night-light. For heat, feel his feet; it's a good indicator of what his body is doing. A pair of white cotton socks can create overall comfort. Try to keep the bedding warm, but lightweight. You don't want to create pressure. For sound levels, do what is "normal" for him. TV, radio, stereo, etc., generally keep as low as possible, but not a muttering annoyance. If he wants quiet let him have it for intervals. Don't forget though that these six months or whatever is part of your life too. If you are in the kitchen and want some tunes. Go for it. Just never so loud as he needs to yell to get your attention. Check with Mary and see where she got Mom's caller she uses. It's a portable pushbutton that rings a doorbell, and the sound carries so you are not anchored to a room.

Transferring: You will need to learn how to transfer your patient in the right way, so as not to hurt him or you in the process. To get them out of a chair and into a wheel chair, you put the wheel chair at right angles to the chair and LOCK THE WHEEL CHAIR. You have your patient move forward on the chair. (If he can't do it himself put a pad, heavy weight cotton about a yard square with waterproof backing, under him before he sits, and use it to pull him straight forward to the edge of the chair using the pad to grip. You can also use this technique getting out of cars.) If you have an awkward person to move, get and use a gate belt. It's just a heavy woven belt you put around them and fasten into place, so you have something solid to hold onto. You lift straight up to a standing position, use a weightlifter stance with your legs doing the work and your back straight. Hold them as close as possible to your body, you are using your center of balance and not theirs. Plant your feet. Count. One-two-three-move. Make the transfers as smooth as possible. In getting someone in or out of the bathtub, you have them sit on the edge of the tub, put one of your feet on a non-skid place on the floor and plant the other on the back edge of the tub so you are stable. Then, back straight, you do your lift or controlled drop into the tub. When your person is wet, always use a towel or washcloth to grip them so they don't slip and fall. A transfer from the bed: Put wheelchair back even with top of bed. Remove side arm rest nearest the bed, LOCK THE CHAIR, and drop side rails as low as they go. If they are getting up, put bed higher than the chair. If they are returning to bed put bed lower than the chair. You always want gravity working for you. It's important that the person knows what is going on. Tell them every time you transfer what you are doing and what they can do to help. Ask them if they are ready, and wait for an answer.

While we are on the subject, for a person to retain his self-respect, it is best to have him do for himself whatever he is capable of. Don't create an invalid. The time will come, and too soon, that he won't be capable, and that is the time to gradually absorb their responsibilities. You will know.

If a patient falls, shouldn't ever happen, but sometimes does. Check them out while they are still on the floor for breaks. If they are bigger than you are, get help to get them back up. While you wait, cover them and put a pillow under their head. Christina fell out of bed once and I called the Fire Department. They sent over some strapping lads and we were back in business. If you think you can handle it alone, remember the straight back and the solid stance. Falling can be traumatic for your patient. Be patient and soothing.

You need to ask him, while he's still got his head about him, if he has a will, a living will, someone with medical power of attorney. There are legal ramifications of what you are doing. A caregiver is legally bound to lay down their life for an infirm patient. If the house burns it is up to you to get them out. Have a plan for eventualities that would keep you safe in the process. More on this later if you have questions about what all this entails.

Don't try to take this all on as your own 24/7 project. Plan breaks for yourself. If necessary go through an agency and get relief as needed. You as primary care giver, have the right to interview, and pass on alternate care giving staff. If you need the help, contact Hospice. Their whole business is terminal care. They have many resources to draw on.

Medications: Keep detailed records of everything you do. Know the nature of the medications you are giving and be aware of whatever side effects might be connected with them. If in doubt, contact your guy's doctor, or your doctor's nurse is usually a good bet. Quicker response. Keep a daily journal of what you observe, and take your records with you to any Doctor appointments. Use the same rules of thumb that you use with your kids' medications. If something doesn't feel right, check it out. If you feel more or less of something is needed, let the Doctor know that too. Pain meds generally increase as time goes on. Keep in mind that with pain meds comes constipation; also keep records on bowel habits. This can be an area of major problems if not addressed. Rule of thumb, if they go more than three days without a BM contact the Doctor.

Get whatever tools you need to do your job. Beds: adjust to your working height when making them. Save your back everywhere you can. Keep handles from being exposed when not in use. It only takes one crack in the shins to teach you this lesson. A comfortable sleeping position in a hospital bed is the back slightly raised, and the foot also slightly raised. Position with pillows as needed so there is no strain on the joints. Keep the body fully supported without constriction or specific pressure to any part of the body. Be very aware of your patient's skin. Pressure sores can get ugly really quick. Anything red needs immediate attention! Keep the body lubricated with gentle massage on a regular basis. Keep patient turned at intervals. As weight is lost, this becomes increasingly important.

Generally when people are sick, they get a nasty taste in their mouths. It is very important that mouth care is done on a regular basis. Brushing teeth, and rinsing mouth with half mouthwash/half warm water keeps them comfortable. Having small hard candy at bedside is sometimes a good idea. I often use a new clean white washcloth, rinsed in very cold water to wipe out the mouth and tongue. Be careful for gag reflex. If you project any major dental problems, get them addressed while he is still well enough to benefit from them. You don't want abscessed teeth cropping up in the last couple of weeks and aggravating an already difficult situation.

Privacy: When you are handling naked people, keep in mind their right to privacy. Make sure all precautions are taken that they not be unnecessarily exposed and try to maintain a level of conversation that has nothing to do with their nakedness. I used to sing when showering my old ladies, so they knew what I was thinking, and they didn't feel leered at.

For yourself, dress comfortably and attractively as possible, wear light make-up, and a minimum of perfume. Sometimes people have real problems with smells. Wear quiet shoes. I'd hate to think I would spend my last days with someone drab and tired. Get as much sleep as you can while all this is going on. You will need it, as you are being the strong one, on whom many people will come to depend. Also, try to include your family in what is going on. This could be a valuable life lesson; they will look to you to see how you handle it. OK, this death thing, do we take it as what is, or do we freak out and struggle with it. The end is the same, but taken naturally can take the sting and the fear out of it. What we push away, we give strength to, and IT pushes back. No resistance, no fight. Acceptance in all things is the key.


Well, my darling brown eyed Sarah Jo, I don't know if this is what you had in mind when you called, but if there is anything I can do to help while all this is going on, just ask. This is a new journey for you, but one that you will never regret having taken.

I love you dearly every day.

Mom


P.S. One thing I neglected writing that I thought after the fact I should have is regarding the death itself.

The process of dying is one of the body shutting down. At the end there is a gradual cooling of the extremities and a mottling that occurs first in the feet and ankles, it is a sign to look for when the end is near. There is also a change of breathing that begins to sound like what they call a "death rattle". As I understand it, what the person is experiencing is similar to shock, there is a natural numbing, but frequently the caregivers response is to give more pain medication as a last ditch effort to "do" something.

In reality, the preparation on the caregiver's part should include making sure the person is as clean as possible, and that the bed itself is clean. Keep the persons mouth moist with a damp cloth; do not force liquids at this point. If they are aware, talk to them quietly and touch them, a hand on an arm - stroke them as a mother would a new baby. They are living the last moments of "their life". Pray silently for a quiet passage. Follow their lead, but be nurturing and hopeful. At some point you will go from talking to the body to talking to the spirit. There is something awesome about death. It brings you into an awareness of what life really is.

If there are other closer family present let (help if able) them do whatever is their custom. Sometimes there is a long wait that can get tedious, one of my ladies said she was never a religious person and thought it kind of phony to pretend on her last day, she wanted to hear Elvis Presley on her way out. Her family however was religious and there in force. Her husband and I put our heads together and I brought some Elvis gospel tapes from home that we played quietly in the background all day. It was perfect for her and them.

When the death occurs, let the family have a few minutes and then bring coffee or something cold to drink to another area, on the patio, the kitchen table or whatever. While they talk to each other, you clear out all the extra stuff in the area. Water glasses, meds, personal stuff, clothes, and clean off the tables. If small flowers are available, a small vase is a sweet touch. Flatten out the bed and arrange the body long, head on a pillow, take away all bedding except for a clean top sheet, which you will pull up to chin level and fold at top. The eyes dry out as death occurs, and if you cannot shut them, you may want to place a clean white folded washcloth over the eyes. Make sure the hair is combed for the last time together before the body is removed. You need space beside the bed for the gurney that the funeral home will bring to move the body. Make it easy on their staff by moving chairs or whatever out of the way between the bed and the door that will be used for removal.

Have the family come back in and spend whatever time they deem necessary for closure. Note the time of death when it occurs, and enter it in your nursing notes. Take another person with you and dispose of all medications in the toilet. Keep your reputation clean where it comes to meds. You need a witness to this disposal, just for your sake. If Hospice is involved in the case they will do this for you.

When things are quiet, call the funeral home, and ask if they will call the coroner. If they don't, you should have all numbers prepared ahead of time, and you should call them. Do not call 911!!! Any death called in to the police department has to be treated as a homicide, and a natural death has it's own procedure. Also call the Doctor and inform him of the time of death.

You may wait with the family, and sit with the body, or if you are more comfortable, start straightening from the back of the house forward. If it seems appropriate, you may want to prepare a light meal for the family. They appreciate not having to think about food, but as stressful as the situation is, they generally need something to eat before they get on with making their phone calls and contacting people. It calms the situation and makes life resume for them more naturally.

When the body is gone, gather all related laundry and start washing, drying and folding clothes and bedding, take out all trash properly bagged. Wipe down the hospital bed, and stack all medical equipment on or beside the bed. Do a once over lightly of the house, which will probably have visitors soon. Give all related nursing notes etc to the family, and ask them if there is anything else you can do for them. Keep a pot of coffee fresh. When you are done, then it is time for you.

Generally what I do is go home and take a long hot bath, get something hot to drink, and settle in with a paper and pen and put my thoughts on paper. Then get some sleep; you will be more tired than you can remember being in a very long time.

You may or may not attend the funeral or services for this person as you feel is appropriate. Generally it means a lot to the people who are left that you are there, and it is a time for them to say thank you, and they do. Many people fear death and they really appreciate someone else taking the responsibility for them. The strange thing is that once I had been there, I never saw death come as anything but a friend and a step forward to a new and better life of the spirit.