We found a wide spectrum of experiences. Some described a tremendous amount of assistance from health care providers, and a relatively easy experience; others did not receive or were unaware of resources to support them.

Caregivers often suffered emotionally and physically when providing care to loved ones at home, or when the illness was prolonged. Several resources were identified including hospice and home care, and nursing home care. Those who had provided care to a loved one felt that assistance with care is always needed. Many stated that having cared for someone, they would never choose to burden their own family with care for themselves when they were dying. Death was a relief for many caregivers when illness and disability were prolonged.

There were several issues which were prominent:

1. Communication and decision-making

• "He would say, 'Am I going to make it?' He wanted someone to be honest, and no one was, including the doctors. And he probably had a lot he wanted to say, but no one was listening."
• "I think what they do is they do give you false hope originally."

• "To know what the disease is going to entail; suffering, length of time."
• "How can I best provide for what her needs are going to be as they change as the disease changes over the next months or weeks or however long it takes."
• "A little counseling preparing you for what death is going to be like. It is going to be hard to read this really short little book, but this is what death is going to be like, and this is the burnout factor you are going to have; and this is some of the pain; and this is who you can talk to."

• "It is important that it is the patient's decision; patient and family.... I think it is important that the patient have a say and their medical team doesn't wind up making decisions for the patient."
• "Giving all the options and letting me know how each one comes out. I make the decision but just give me all of the information....along with the doctors helping too."
• "She would say, 'well you're the doctor. You tell me what I should do.' But they never would. They made her choose."

• "If I were in that position I would hope I would have the nerve to stop eating and drinking and terminate my life."
• "She had the opportunity to be in control of what was going to happen or what was happening. She would have the time to work her own way through things, and let us work our way through it together. That was the most positive part of it."

2. Several different kinds of support are needed.

• "Some sort of training he probably could have so he would feel more adequate and feels he is doing a better job and can be more helpful to his wife at this point."
• "I had to learn all about the feeding tubes. You feel a little uncomfortable."
• "I would rather have someone come and do it while I was there giving love. But I didn't want to have to do all the super-nursey things. I did, and I am pleased and proud."
• "If someone with medical training could come into the house periodically, whatever that would be, that would be a big help."
• "I also want to know what to do in the case of an emergency. Who to turn to? What facilities are available?"

• "I would have wanted to have someone come in who is competent so I would have some breathing room, so I think I could be a more effective caregiver; not being locked in all the time."
• "Hospice alone, for me, was a blessing to take the weight off my shoulders. Let alone to know, as P said, that she had company when I couldn't be there."

• "I am angry. I am scared. And I am really worried about P. I am also worried about my children and closure. I am feeling that I have things I need to do. I shouldn't be in the hospital. I should be doing them, but yet I am sick. I am a burden, and I am just totally overwhelmed with the whole thing."

• "To have someone I could talk to, to monitor by own feelings, my own doubts, my own fears, and other issues that can come up and deal with them."

3. Family were distressed by their loved one's suffering.

• "I would have stopped the poking and the prodding of her a lot earlier. It got to the point that she was getting so bruised before she went to the nursing home that we finally asked that the nursing staff at the hospital if they could give her pain medication in liquid instead of... because she would cry and she would tell us how much it hurt because she was so with it."
• "He asked why I was crying, and I told him it was because I couldn't stand to see him in pain. I was thinking at that point that there is no need for him to be in pain."

4. Access to timely assistance is crucial.

• "He was throwing up so much blood that I couldn't get the morphine in him. At 9:00 in the morning I called them up, and the secretary said, 'I'm sorry, but they are on retreat today.' I said, I'm sorry, but I need to talk to someone. I wanted my husband to have a morphine drip because I could not get any morphine in him or the Ativan. So I did get to talk to L, and she said that she would take care of it. I waited a couple of hours, and I called again. She finally came at 4:00 in the afternoon, and my husband died an hour and a half later. I never forgave myself because I let him down. That is the worst part for me right now, is that I feel like I let him down."
• "I value that time with my brother before he died more than anything and being able to provide the care in my home for him. I would also say the availability of the medical staff and the clergy, and Hospice. They were there."
• "On Saturday morning when he could not take his meds I called his nurse, and they beeped her and she came from wherever she was and brought the morphine pump. She said that this is the point where we're at, where we have to control his pain."
• "We were required to come to the hospital to have them say, 'oh, you have cancer, still. And now we will give you your pain medication.' She had to actually come in, be seen and have it reaffirmed that she was dying before she was given the medication. It made her so angry that she dumped the system. She said that she would get a local doctor that would allow her husband to go to the pharmacy to pick up the medications."
• "Another thing I had was the pager number for the doctor; so if we ever got into trouble we could get a hold of him and talk to him."
• "The weak point was right at the hospital. We just didn't have this connection like several of you with the doctor. There were all kinds of doctors, and to get to someone to find out answers was very difficult at times."

5. Serious illness and dying imposes significant financial burden on individuals and their families.

• "One of the biggest problems that people who are ill, very ill have is medical cost. I think handling insurances and having people go through all of the paperwork and all the provider stuff can be really very difficult."
• "A lot of people think that because your loved one has died that so did all the bills. Little do they know that if you just live on Medicare you are leaving a lot for the family later. So, we are still dealing with that. The government took mom's check right away."

6. Support for grief and anger is needed, often for a long time following the death of a loved one.

• "I am still dealing with it now. It hasn't been that long, but I guess I have to pick up my pieces and try to get over my anger of not having anybody to help me through it."
• "The support group with the VNA. I went to that. But after so long of always handling everything and keeping everything OK on the outside and falling apart when you are alone on the inside, visiting with somebody for six weeks for an hour and a half, it wasn't long enough."