I believe the best placement of a hospital bed in your home is in the living area near a window and with a TV. Sick people want to feel that they are still "part of the world" and if they are stuck in a bedroom, all they can feel is alone.

Shirts that open in the front are good as are T-shirts that are cut up the back to the circular neck ring. Easy to slip on and easy to reach in for bandage changes and the like.

A handheld shower nozzle is a must for patients who sit on a shower stool to bathe.

Near the end when food doesn't taste very good at all, forget about nutrition rules and just give them what they want to eat. Often it is just one item, not a meal. Such things may be applesauce, ice cream, coffee, etc. Let them eat whatever they want.

I have to share one funny moment. Funny, but not funny. When the time came for a catheter to be inserted and the bag to hang on the side of the bed, I asked the Hospice nurse if I should get a pan to place right under the bag, on the floor just in case the bag might leak. He said, "Oh,no. I've never had a bag to leak." A few hours later there was a puddle of urine on my brand new laminate floor. The bag had a hole in it. The nurse said he had never in his career had a urine bag to leak. After I cleaned it up, we had a little chuckle about it. But I sure hated my brand new floor to be inaugurated in such a manner.

I lost my husband, Frank, almost 3 yrs. ago after 2 years of fighting leukemia. He was 72 when he was diagnosed(2006), and we had been married almost 49 years. To me, the greatest lesson in being a care-
giver was learning to take one day at a time. Learning this lesson happened years previously, when he had a terrible time of illness in 2001-02.

In 2001 we had not spent much time in hospitals, and I didn't know I would soon be on the road to getting an "RN degree by default." Frank was diagnosed with renal (kidney) insufficiency and needed a stent in his renal artery. There was a mishap during the surgery in which the artery was nicked, and the sac around his kidney filled with blood. This began a long, miserable road of "domino-effect catastrophes" that kept us in the hospital most of the next 5 mo. [I am not condemning VA hospitals , but this was in a VA hospital, and I'm sure the renal artery surgery was done by a med student. You have heard the saying "that's why they call it practicing medicine" -- no one told us students did surgery there until after all this happened.] Lesson No. 2 - don't have surgery at a VA hospital if you can do otherwise. After that awful day, he spent 11 days in ICU and was very ill. All that was followed by development of 2 bleeding ulcers which called for more surgery. That operation removed part of his stomach and re-structured the greater part of his digestive system. He lost 80 lb. and was extremely weak. He had an open wound on his side where a tube had been inserted, and could not eat or drink for several wks. (in order for healing to take place). I had to learn to hook up "bags" of the nutritional supplement to a portable pump that sent the "food" into a port in his neck. We had a checklist, and he watched me like a hawk when we did this about every other day. (We were at home during most of the time he was on IV feeding)

Our faith in God helped us cope -- I couldn't look past "today" for it seemed he would not live until tomorrow. While recovering from all this, he suffered a heart attack while in the hospital. I was numb at that point. Rooms in that hospital were semi-private, and most of the time some other patient & all their family were there with their phone ringing etc. There were many scans, x-rays, tests, etc. - but answers were never provided. A maddening situation to be in . He finally was home for more than 2 weeks, and at Christmas we went to visit relatives in another part of our state. While there, he suffered another heart attack, went to a non-VA hospital there, and had quadruple bypass surgery. It was a blessing from God that we were near that hospital; it had wonderful heart surgeons and he received excellent care. Despite the many problems he suffered in later years, none were related to his heart! I had to stay at his sister's house 3 weeks instead of the planned 2 days.

He gradually regained strength and weight and we could go on short trips and do "normal things" again. He was never back to his pre-VA health, of course, but at least disaster eluded us and that was good. He began to look like the "old Frank" most of the time, but I was always watching with my "nurse's eye" for any sign of illness. We never darkened the door of the VA again - and he had regular checkups every few months with other physicians. In Sept., 2006 he went for a "routine" physical and all was fine until the dr. looked at the bloodwork results. After more tests, the dreaded news came: "You have leukemia, come to the hospital this afternoon - for 30 days." We were stunned; devastated. How could this be? AFTER ALL HE HAD SUFFERED - after all I had endured while he suffered! So began 2 years of chemo, blood and platelet transfusions, weekly injections for red blood cells, weeks in the hospital many times,

We trusted God and prayed for healing. However, the Bible teaches that we must pray "thy will be done." So we prayed, "if it is your will, Lord...." please grant healing. He did have several months of remission -- his hair came back, he gained weight, could ride the mower & drive the car. So encouraging. The odds were not good at his age, and the dr. told us this up front. At the end of 2007, remission was over. Our 50th anniversary was in Dec., 2007, and on Sunday before he had to return to the hospital for weeks, we had a wonderful celebration. It is a cherished memory; he was very happy that day and looked so well. He lived 8 months after that and they were hard months. I feel like all that I learned during the "VA days" helped me cope with the leukemia and his gradual decline. He was a wonderful patient always -- never complained. He died at home, very peacefully. I was by his side. For months, I felt life had no purpose. I had taken care of him for so long, I didn't know what to do. I am 73 now; still in our home and thankful to be here. I have learned to count my blessings no matter what else is happening. There is always something to be grateful for.

I'm sure this is more information that you ever wanted to know. I have tried to condense it as much as possible!
Doye

Listen to what the patient wants. My husband was a people person. He had many friends. He wanted visits from his friends, so I let them come over whenever he was up for it. Yes they may have tierd him out a little, but they also gladden his heart. There were about twenty friends and family at the house when he passed at it was somehow a moving experience. Also I agree with the bed in the living area and allowing them to eat whatever they want. My Phil ate nothing but pumpkin bread and banana bread for 3 weeks. Let others help with thethe everyday things so you don't burn out. People want to help let them.

I found out that, if they're able, give your loved one opportunity to move about on their own, safely, of course. A few times, Frances realized that she was getting worse and couldn't do certain tings anymore, and that was hard for both of us. She knew I was there for her and had her best interest at heart.

There is a lot to caregiving that just happens as things progress. I agree, bed in living room near window. Pets on bed whenever able. Try to stay one step ahead of needs...which is not always possible. I worked 40hrs. A week until the 23rd of May. Jeff passed on the 11th of june. I would get up early give him his mess, make him some coffee, which I had to hold as his hands no lingered worked,then help him use the urinal. Then would get ready for work. Before i left for the day I would set up his food. He had a feeding tube and a pump. My oldest daughter would come over and stay until I came home. Our last five months were like that. Depending on the illness learn early. Jeff could no longer talk so frequently we struggled to understand what he wanted. Get help sooner than I did. Good luck with your book.

I learned that Hospice care does not mean imminent death. I asked for help way too late and only had hospice for one day. Before that, I was trying to do everything myself and I wouldn't admit it was too much to handle. My daughters helped off and on during the day, but I was still going to work and leaving Mike alone to sleep for a few hours. The nurse couldn't believe I hadn't taken family leave, and she told me he couldn't be left alone anymore and that I needed to take the leave. Then he died the next night. So my advice is to call Hospice early.

One of the best things we did immeadiately after the diagnosis( Lung Cancer Stage 3B) was to join support groups at the local Wellness Center. My husband joined the Survivors group, I joined the Caregivers. I learned from other's experience and most importantly, realized by listening to some of the other caregivers, how special my marriage was.

Now, I wish I had belonged to more than one group, specifically another on line as the days you cannot leave your loved one are the days you need the support the most.

Also, as someone else said, 'you become RN by default", we also become case manager but my recommendation is become the case manager proactively, not reactively--- The health care system is massive and too often, administrative mistakes are made/not corrected unless you, the caregiver/case manager notice and ring the bell.

I would love to hear your tips and advice as a caregiver too. Would you mind sharing?

One of the best things we did immeadiately after the diagnosis( Lung Cancer Stage 3B) was to join support groups at the local Wellness Center. My husband joined the Survivors group, I joined the Caregivers. I learned from other's experience and most importantly, realized by listening to some of the other caregivers, how special my marriage was.

Now, I wish I had belonged to more than one group, specifically another on line as the days you cannot leave your loved one are the days you need the support the most.

Also, as someone else said, 'you become RN by default", we also become case manager but my recommendation is become the case manager proactively, not reactively--- The health care system is massive and too often, administrative mistakes are made/not corrected unless you, the caregiver/case manager notice and ring the bell.

I would love to hear your tips and advice as a caregiver too. Would you mind sharing?

My husband was diagnosed with stage IV lung and bone cancer and lived 8 months with all the treatment his body could stand. He remained very upbeat and never got down, at least in front of me. He did not want to discuss anything to do with death except for a few times and that was ok as that's how he wanted to deal with it. He wanted things to be as "normal" as possible under the circumstances. He wanted his hospital bed in the bedroom so he could have privacy or quiet time when he wanted it or when the pain was worse. He had a TV, lap top, and we brought in a recliner and extra chairs. Family & friends visited in the bedroom. One thing I regret was discontinuing eating sugar, but it was his choice. My husband really loved sweets. In some of the material from the oncologist, it said sugar made cancer grow faster. So he decided to discontinue eating anything with sugar. Our mind set was still thinking along the lines of getting better even though we knew that wasn't going to happen. In hindsight, in his situation it probably made no difference and he should have had me fixing those pancakes, cookies, and cakes he loved. Now it breaks my heart he didn't get to enjoy these things. One thing that came to mind was the meds. The number of meds became overwhelming, 17 of them and most more than one time a day. I used a legal piece of paper and made a form with the date, name of med, times it needed to be given and blocks to check off when I gave it to him. I made copies of the forms and used one each day to make sure I gave him his meds correctly. This really helped me. It is so true we become RN's and case managers by default. I wrote everything down on a legal pad, who I called on what date and what was said. I couldn't rely on my memory at all during that time. He thanked me many times for taking care of him which broke my heart. I'd tell him he didn't need to thank me, I wouldn't have it any other way. Take care, Sandra

For two days now I've tried to write here. But my eyes won't let me, everytime I start to type I start crying. But I do have a story.

One time between hospital stays and Gena was at home. She had been in the bed and couldn't get out of it. I had went out side for something and when I came back in I heard her crying as soon as I came in the house. I ran to the bed room and there she was on the toilet crying. She had made her way off the bed and some how got on the toilet. I thought she had hurt herself getting there. I asked her what had happened and she looked at me with the sadest face cry and said I CAN'T WIPE MY B**T. (this was a first for her and me) I just smiled at her and said thats ok and did my job without even thinking about it. This was the beginning of my long journey of being my Gena's caregiver. Still today I would do it again.

If possible, join a caregiver support group. Most of the time your local hospital will have them.

Let the person make their own decisions and allow them to think what they want to. If they believe they are going to beat their illness and keep living, stoke that fire. Give them a sense of control and dignity.

A shower chair and hand held shower nozzle is a must. Allow them to take care of their own personal hygiene routines, unless they cannot do it for themselves. Don't push yourself on them, but allow them to decide if they want you to do it for them. One of the worse things is making an ill person feel helpless.

First thing I did when G was diagnosed was to learn EVERYTHING I could about his desease (liver). I devoured anything i could get my hands on, so I knew what could, or would happen, so I'd know the signs and how to deal with it. If it hadn't been for that, when he developed Ascites, he never would have known to get to the doctor NOW.

Also, I agree with the hand held shower, bed in the living area, and SPOILING them with all the love that you can give! It's the BEST medicine of all!

We were very good at keeping records of tests, bloodwork etc., too. There are sometimes SO MANY different doctors that you can get so confused with one telling you one thing, and another telling you somthing completely different, as from our experience, the docs rarely talked to each other!

there were many double testings that we prevented, and many unneeded meds that were doubled!

I am hlping to care for my MIL now, and am seeing the very same thing. I guess the best advice is to beas educated as you can,and be their advocate! It's the best thing you can do for someone you love!

My husband died 7 years ago. He was at home except for the last 2 weeks he lived. Those months before he died were the hardest I've ever dealth with but I wouldn't change a thing. We had time to come to terms with his illness and end result. WE talked a lot about, well, whatever he wanted to. I think the most important thing is to listen and remember and cherish that time together. I still remember that it had been weeks since he'd eaten anything and one day he suddenly said he was hungry for a balogna sandwhich! As soon as I could, I got to the store and got that balogna and made that sandwhich. It was the last thing he ever ate but he really enjoyed it.

AS hard as it is, you must take care of yourself. Never turn down the offer of a loved one to come and sit with them while you go out even for a 1/2 hour. Just to get out among the 'normal' things in life. Also when they sleep, you sleep.

Mostly, just cherish your time together.

Becky