General discomfort: | You just feel miserable, it feels like a sort of flue, you don’t fancy doing anything, you only want to lie in bed |
Tired: | I hardly can do anything, it is nearly impossible to explain it in words, I never imagined a person could be so tired |
Weakness: | My right leg is to weakened, it is not safe to stand and so for weeks I lie in my bed all the time and only come out for the latrine chair |
Not sleeping well: | There is the noise at night on the streets, ambulances passing by, and this screaming neighbor woman, who keeps the whole neighborhood awake |
Pain: | I have pain all day, it occupies my mind, there is little distraction |
Loss of appetite: | I can hardly any more enjoy the taste of food, I long for the flavor of a fine stew |
Thirst: | My mouth is dry, I need to drink, but this makes me nauseous |
Smelling unpleasant: | I hate this urine smell |
Changed appearance: | I used to be vain, now I have become so thin, I find it ugly looking at my neck |
Impaired mental clarity: | I think about something, and then it’s gone, I find that stupid, for instance when I am one my way to fetch something |
Concentration loss: | My mind loses its way, I find this unpleasant |
Memory loss: | I used to remember all by mind, because I am illiterate |
Feel tense: | I try to control it, for the children |
Feel depressed: | This depressed mood in itself is unpleasant; at the same time it grows, because my daughter is doing less well |
Feel anxious: | I feel afraid for what will come and worry about how things will go on for my wife |
Shortness of breath: | Even with only slight activity I have a sort of hyperventilation, which makes me anxious |
Coughing: | When in public, than this phlegm comes out in my handkerchief, it’s very annoying |
Obstruction to swallow food: | I need to feed myself to prevent becoming even more weakened, but the passage of food is deranged |
Obstruction to swallow fluid: | I swallow, but it doesn’t pass, it makes me retch |
Nausea | I am nauseous continuously, I feel completely fed up with it |
Vomiting: | When I sit at the table, it suddenly comes up and I need to run for the bathroom |
Constipation: | It hurts and is strenuous |
Diarrhea: | You are dining out in a hotel and then you continuously need to go to the toilet |
Intestinal cramps: | These cramps are painful, it is very unpleasant |
Incontinence of urine: | X (no high scores in ultimate interview) |
Incontinence of feces: | It is filthy |
Hiccups: | It comes sudden and unexpected, it makes me feel uncivilized and ashamed |
Pressure ulcers: | It is annoying |
Itch: | You keep on scratching |
Skin metastasis: | In my neck, after radiotherapy it turned yellow, with an unpleasant look, it smells |
Paralyzed limbs: | I can’t do anything, my left leg is paralyzed and my arm is forceless |
Impaired coordination: | These unpredictable cramps and shaking of an arm or a leg, I cannot stop it |
Incomprehensible speech: | I cannot communicate by telephone, people don’t understand what I am saying |
Impaired comprehension of speech: | It makes me feel stupid |
Dizziness: | Sometimes it is frightening, one time it happened when my alarm-button was out of reach and it took a whole long time before anybody entered and took notice |
Impaired sight: | It annoys me so much, it is caused by the medication |
Impaired hearing: | If some people talk at the same time I cannot differentiate what is being said |
Impaired working capacity: | I am already counted out in society |
Impaired in routine daily activities: | I am not the crying type, but this week I suddenly started crying |
Impaired leisure activities: | I used to go out, make bus trips, I miss it, but absolutely can’t do it anymore. And I can’t any more receive people at my home, I am to exhausted |
Need help with housekeeping: | Being young and not capable to function independently, it feels so unnatural |
Need help with self-care: | I don’t want these young maidens of the home care service, it makes me feel ashamed |
Pedridden: | More and more you are drawn to that bed, it makes you realize you are deteriorating |
Restricted sexual functioning: | Widower: I feel rejected by my present partner, there is no intimacy, it is so cold |
Not satisfied with own self: | I just left my wife, she had done nothing wrong, life than takes a course, leaving impossible to restore the situation |
Lived a life with little purpose: | With my first wife everything was fine, the last years I miss love and tenderness |
Experienced little success in life: | I would have liked to be at a somewhat higher level in society, for instance I would have liked to study, I would do it differently if I could do it again |
Little happiness with family/close ones: | I would have preferred things to be different, I haven’t seen my children for 18 years |
Trouble accepting situation: | I can no longer play Chopin, or make a drawing |
Negative thoughts or worrying: | I would have liked to do things differently, at night it appears in my dreams |
Feelings of guilt: | I feel guilt I wanted to divorce from my wife the other year, she is the one who makes I am still living now, she does everything for me |
Feel worthless: | There is no more appreciation, people talk about you and not with you |
Feel lonely: | One has cancer, it is not contagious, but people pass by less frequently |
Feel hopeless: | This is not what I want |
No longer feel the same person: | Is this the same body? Yet I have to manage with it, which causes me trouble |
Feel tired of life: | I prefer it to be over as soon as possible, I used to be very active and independent and now I am totally passive and dependant |
Feel dependant of others: | Ones individuality is lost, one has no more privacy |
Feeling loss of control of life: | Tears in the eyes, gives no answer |
Feeling a nuisance to others: | In relation to being so dependant I now easily tend to think “Oh, just leave it” |
Feel unimportant to others: | My daughter, she is very sick and I can’t do anything for her |
Impossible to do important things: | I used to daily visit my wife in a nursing-home, I can’t do it any longer |
Not supported sufficiently by close ones: | The physical support is O.K., but there is emotional shortage |
Lonely (important people absent): | I have one son, he does not visit me |
Feelings of shame: | I have these outburst directed at my own person, which I find alarming, than this tic of my jaw appears and I wonder whether I can appear this way in church |
Relatives consider your suffering severe: | It makes it difficult to start a conversation |
Unsatisfactory contact with close ones: | They don’t keep stand up to their promises, for instance my daughter promises to visit me next week, I look forward to see her and then she shows up 1,5 years later |
Insufficient availability of care: | I find the home care miserable |
Fear of future suffering: | I feel short of breath, I am afraid to suffocate |
Fear losing strength to bear the suffering: | To die, would it be painful? |
Personal additions of missing aspects: | The hospice refused me last week, they considered me too good and advised a nursing home |