Those of you that follow me know that I have been spending most of my energy and time with my dear friend that is nearing the end of her battle with cancer. Read Beating the Odds to learn more about Pam, my miracle friend. Since my last post, my friend has suffered a seizure that has increased her memory loss and made it even harder for her to communicate her needs.
I am no stranger to death, as I have been with several people as they entered their final days, but never to this extent. As someone who suffers from several chronic conditions (MS, Psoriatic Arthritis, Degenerative Disc Disease, and Fibromyalgia), I find myself in a unique position of understanding and having empathy for much of my friend’s physical pain, emotional turmoil, and mental misfires. I know what it is like to be consumed with physical pain. I know the emotional struggle of allowing people to care for me and the frustration over not being capable of doing simple tasks myself. I know what it is like to not have my brain and mouth working together, to know what I want to say and not be capable of verbally expressing it. Since most people that are physically up to the task of helping out when a friend or family member is suffering from a severe flare or nearing the end of their lives haven’t experienced anything that I mentioned above, I find they are clueless in how to communicate with people in this situation or are truly unaware of what they really need. One purpose for writing this post is to educate those who have never gone through something similar on how to really make us comfortable and give us peace. My other reason for writing this post is so that people like me or those facing pain filled end days can prepare our friends and family. There is much to share and this is just the beginning of a series of topics relating to end days and flares that I will be sharing with you in the future. With that said, the subject of this post is the importance of listening and knowing when or when not to speak.
When suffering through a severe flare or terminal illness that attacks both the body and mind, putting together a coherent sentence or even verbalizing one simple word can be torture for your loved one. Sometimes, we say the opposite of what we mean. We are not always aware that we are doing this. We become overly frustrated and upset with ourselves when we do recognize it. Because of this please do not ask us to explain what we are saying. It is not possible to explain what we want when our brain and mouth aren’t working together! Pressing us for answers will only lead to more turmoil. Stress causes our pain levels to escalate, which in turn makes thinking even more difficult. It is not uncommon for people in this position to blurt out words that make no sense at all. When this happens it is better to look for physical signals that the patient is giving rather than what they are verbalizing. Case in point: One afternoon Pam asked her husband and I for a glass of water. We handed her the cup that she had been drinking out of up until now without complaints. She pushed it aside and said that wasn’t what she wanted, she insisted that she wanted REAL water. So we filled a new cup with her favorite bottled water. Once again she insisted that the cup didn’t contain REAL water. We tried tap water and water from the refrigerator dispenser, all wrong…. Tears filled her eyes as she begged us for REAL water…. To lighten the mood, I suggested that outside of having her husband dig a well in the backyard, this water was as real as she was going to get. She giggled, then again stated that she wanted REAL water. Then it hit me! It wasn’t water that she wanted! But I had no clue as to what it was that she did want. As soon as I mentioned my theory to her husband, he began asking about other beverages. She was confused and continued to insist on REAL water. I asked what other beverages were available that she normally likes. He went to the kitchen and came back with a glass of apple juice. Pam smelled it, took a sip, and with a smile exclaimed “Finally, REAL water!”.
When consumed with pain the brain can only be pushed so far. Later as I looked back on the water conversation I remembered that each time said she wanted REAL water, she was also pointing out the window. What was outside the window? A tree! No it wasn’t an apple tree, but if I had been paying attention to what she was pointing at I probably would have gotten the clue that it was juice that she really wanted much sooner.
Sometimes people in these situations blurt out something that makes no sense at all. An older woman might announce that she doesn’t want to have another baby when asked if they want their nails painted. When comments like this are made the best thing to do is to play along. My reply to this was to smile and agree that I didn’t want to have any more babies either! This made my friend smile and allowed us to move past this bizarre thought. There have been times when others have pressed her by asking what she meant by that. This causes my friend more frustration, more pain, and not to mention embarrassment. Unless what the patient is stating is a request that is related to pain, hunger, or thirst, LET IT GO! And even if it is in relation to pain, hunger, or thirst, be aware of body and facial language. The other day I knew that my friend was requesting a quilt from the end of her bed because I listened to her body language and not her words. She verbalized that she wanted the green thing, yet was pointing at the quilt that had only specks of green. I knew I gave her what she had requested by the smile and thank you that she was able to get past her lips.
While extremely frustrating for friends and family providing care, it is important to not express your frustration to the person in need. It will cause them shut you out, to fear speaking to you, and create unneeded stress and pain when you are around. Be sure to vent your frustration with someone else and do so where the patient will not hear your complaints.
While spending time with the patient, follow their lead. This means do not go over with the intent to entertain or converse with them when they are not that frame of mind. When Pam is sitting upright and her face is not tense from pain, I know that she and I will spend most of our time talking. If she is lying down, or if her face displays her pain, I know that very few words will be shared. Some afternoons are spent laughing and talking. Other afternoons are spent watching her favorite channel HGTV and occasionally one of us shares a comment or two. Then there are the days when we just lie on the bed together holding hands, watching TV, and neither one of us utters a word. I cherish all of these moments with her, no matter what type of day it turns out to be. I don’t worry about what she is thinking or if there is something that I want to tell her. Why not? Because it is not about ME! My visits are about her. Keeping her comfortable, offering her peace, a hug, a smile, or a giggle when needed. My visits are to give her husband a break, a chance to get out of the house or to take a nap.
The most important thing a friend or family member can do is to NOT force conversations. If their body language isn’t clear, ask one or two questions. Their answers should clearly indicate the level of thinking and conversation that they are currently capable of. Also don’t expect every visit or moment of a visit to be the same. It is normal to go from wanting to speak to not without notice. Don’t assume that just because the patient isn’t up for a conversation at the beginning of your visit that they won’t be in a few hours and vice versa. Know that sometimes the best conversations are silent. The light touch of your hand expresses your love and compassion better than any words when the brain is overloaded. Sometimes just having someone in the same room is all the comfort that is needed. Never feel that you are wasting your time when no words are spoken. Just like my friend, when I am in the middle of a severe flare I find it comforting to know that there are people around. People that won’t inflict more pain upon my body by forcing me to speak when my brain isn’t cooperating.
If you have a terminal condition or suffer from chronic conditions that cause your brain to misfire, especially during severe flares, be sure to share this post with the friends and family that you expect to be caring for you. While you may feel uncomfortable expressing your wishes now, just think about how much harder it will be when you are not fully capable of doing so. Don’t wait and start preparing your support team now!
Wishing you a day filled with gentle hugs and smiles,
Tagged: arthritis, cancer, chronic illness, chronic pain, degenerative disc disease, fibro, fibromyalgia, final days, health, invisible disabilities, mental-health, MS, psoriatic arthritis, severe flare, spoonie, spoonies