ever provided hospice nursing to your own loved one? - page 2

I have been a nurse for 22 years. My husband has just been given 3 months to live. He is 47 years old. He had a bowel resection for his colon cancer in January. He completed 6 hellish months of chemo... Read More

  1. by   swmbo2000
    leesonlpn, you have been given lots of very good advice here from others. I would certainly endorse the advice about Palliative Care/Hospice.

    I spent a great deal of time (weeks at a time) living with my sister and her family as she lived through the terminal stages of breast cancer. This experience was fraught with powerful emotions and states of being: joy, suffering, loss, empowerment, frustration, hope, depression, laugher. My sister's dying was greatly affected by the added burden of her husband's alcoholism and the stressful family dynamics that resulted from this. She had been very sick for at least four years, first of all with Chronic Lymphocytic Leukemia (treated with a bone marrow transplant) and then with breast cancer that was discovered a year after the BMT and that had probably been present at the time of the BMT. Although she and I talked freely and openly about her imminent death, her husband and 2 teenaged sons remained in denial until almost the very end and she spent a lot of her precious time and energy 'protecting' them from having to face losing her.

    As you can probably tell from the little I have told about my experience, it was very hard for me to be objective. Actually, it was impossible. And I think that it is impossible for most people. This is a dearly loved person who is dying, you can't respond the way you do in a professional way to your patients. It is certainly possible to provide excellent care yourself and to do it in a way that is beneficial to both of you, but you do need an objective person to help you make decisions. Take GOOD care of yourself. You need MORE rest and exercise, BETTER nutrition, GREATER support than you normally do. This is one of the most stressful things you will ever do in your whole life. And because you have no idea how long it will be, you need to carefully manage your resources so that they will see you through it. You can get support from many sources too, including family, friends, co-workers, neighbours, and online forums. They all help.

    You have my most sincere good wishes. I would be happy to communicate with you via email too, if you would like. swmbo@ns.sympatico.ca.

  2. by   renerian
    Everyones stories are so moving. I hope this helps you decide what to do about your husband. God bless you both......

  3. by   Rosanna931
    Just to let everyone know that I have found a nurse to interact with online. Thank you very much
  4. by   Sleepyeyes
    (((((leeson & hubby)))))

    I really can't add any advice, just support--we're here for you.
  5. by   micro
    My 'heart' and thoughts go out to all of you that have had to care for someone dear/family/significant personally to you.
    That is an entire level of caring, than even we do in nursing.........there is no seperation, no optional detachment.........
    I have not had that experience, thus far in life......so I can only appreciate the "toll" that it took and takes on you......
    I do know it is hard to see someone 'dear' sick and not be able to change anything.........

    my 'love' to you all
  6. by   Scavenger'sWife
    I was touched by your story and the stories others here have shared. Please know that my thoughts and prayers are with you and your husband as well as the rest of your family.

    I also agree that Hospice care is wonderful and is what you need now. I worked for my facility's Hospice unit for 1.5 years. It was the most fulfilling "job"/calling I have ever done. Hospice will provide meds, DME, etc. as well as help with your husband's psychological/spiritual needs. The social workers and the pastors involved in Hospice are exceptional. The volunteers and nurses' aides free you to "be there" for your husband and for yourself, as YOU need some assistance as well. This way you can be a wife to your husband, and not worry about being a nurse. Please call them if you have not already done so.

    My brother was in Hospice when he had brain CA. He lived in a different city from me and the rest of my familt (mom and 2 sisters). So Hospice was a Godsend. At the end of his life, his Hospice nurses had become treasured and loved as a part of our family. When Jim was dying and comatose, we all were with him and took turns sitting with him. The Hospice nurses had shown us how to give his morphine injections (at the time, I was not a nurse but because I had always said I wanted to be one, everyone kind of leaned on me - the nurses spent a lot of time teaching me things I wanted/needed to know). I was privileged to be present and the one sitting with my dear brother when he died. It could have never been this loving and simple if it were not for Hospice. He died peacefully, w/o pain and in his own bed.

    I, too, extend my sorrow, my support, my love, and my prayers. I would be most happy to e-mail with you if you ever need to vent, ask questions, etc. My address is regnursein99@yahoo.com

    Keep us informed. God Bless. Debby
  7. by   pickledpepperRN
    Absolutely get help from Hospice.
    I cared for my Dad. The nurses, social worker, and other caregivers were so helpful.
    It was possible to be objective, you are his wife not his nurse.
    I was daughter. My Dad did gain an understanding of nursing he had never had before.
    Although I was in my 50s my adult relationship with my Dad was enriched.
    The Hospice RN was always available so I did not have to learn this specialty.

    All my best at this trying time
  8. by   ktwlpn
    Originally posted by leesonlpn
    I have been a nurse for 22 years. My husband has just been given 3 months to live. He is 47 years old. He had a bowel resection for his colon cancer in January. He completed 6 hellish months of chemo with 5FU. All that time the ca was spreading to his liver, which now houses mutiple large tumors. I plan to care for him at home. I have left work in order to do this with an LOA. So far so good, but I know things will get very difficult. Right now he sleeps most of the day, his blood sugars are on the high side.(He has also been a diabetic for 35 years.)I am wondering if any nurse has provided such care to their dying loved one, is it difficult to be objective, I am looking for suggestions for the long road ahead of us. Thank you kindly
    Ohh-I am so sorry-I have been wondering how things were going for you both....So far everyone has given good advice.I found the hospice nurses,cna's and volunteers invaluable-our nurse took care of me as much as she did my mother.It can be very hard to set limits with your patient when that patient is so close to you-and you do have to take care of your self,too-the hospice nurses can help with that.You will find that you can compartmentalize-you will do what needs to be done.....My advice to you is make sure you have someone who can be "the nurse" when the time comes - e you will need to focus on being a wife....I think hospice is a fantastic thing-it's the greatest gift you can give to a loved one-the gift of a good death...It is such hard work and you will get so tired physically and emotionally that you may find yourself wishing for it to be over-and then feel guilty for those feelings....but they are natural...I am surerthat you know that 3 months could be 3 weeks or even 6 months-prepare yourself for anything.....I will remember you both in my prayers...
  9. by   Rustyhammer
    I took care of my dad for around 4 months while he had cancer.
    I had hospice in there for awhile but fired them when they refused to give morphene via pump. He was unable to swallow and solutabs weren't controlling the pain. They told me it was better for my father to die with dignity and IV's did not fall into that catagory.
    I realize there are some tremendous hospice nurses out there who do a fine , wonderful job. I only wish I was able to find one at the time.
    I grew so close to my father during that time. He apologized to me for not spending more time with me when I was young and we were able to connect in a way I never thought possible.
    I am sad for you Leeson but I feel your strength and will attempt to pass some more your way.
    I'm here for you in any way you need me.
  10. by   rncountry
    I took care of my stepdaughter the last month of her life. I had been taking care of her as some respite, when she got ill and all tests showed no infection or other treatable disease process the decision was made to take her home. Samantha was 15 and had been born with mult. problems. She had severe scholosis and eventually her hip was actually resting against her rib cage. NO the care she had received prior had not been good. In any case this ended up putting so much pressure on her heart and lungs, which could not expand, that she went into resp. and heart failure. Taking care of Sam was difficult, but rewarding. My youngest son was only three and would go with me to her home, he used to sit on the bed with her and share his power rangers and blanket. No one else would he have shared with. He would lay down with her and stroke her hair, and things like that. He is now almost seven and still remembers Sam. I am grateful for him being able to spend time with her. I also felt that I was able to give something important to my husband. Sam's mother had not taken care of her well, not sure how much was an inablity, burnout from years of doing it and how much was simply the emotional shutdown. It was difficult to take care of Sam in the home of someone I truly dislike, but most of all it was difficult to watch her go through struggling for breath. The last two days I was able to give her Sub Q morphine, this eased her struggling. While doing the actual care for Sam I did well. I was able to simply take care of her to the best of my ability and not give in the emotionalism of it all, until the last day. I knew Sam had only a matter of a couple hours and her mother left the house to go get a video and some cigarettes. I was so angry with her! I still am, and it's been three and a half years. I was the one who held and rocked her as she quit breathing, while her mother stood at the bedside. I no longer have the white hot anger towards her mother that I used to have, but the feelings I had over this still linger to an extent.
    I am grateful that I had an opportunity to do for Samantha what others did not. I grieved deeply when she died, able to let out pent up feelings that I had hidden while taking care of her. If I were to give any advice I would say don't try to be the professional while taking care of someone that you love. I think the grieving was harder and deeper because I had not allowed myself to grieve while providing her actual care. It was one of the toughest periods of my life, but I would do it all over again.
    I feel very sad for you, and pray that you will find that while this will be such a difficult time for you, that you will find the peace that I did by being able to give the skills and abilities that you have to someone who is vital to your life.
  11. by   RNConnieF
    lessonlpn, First, hugs to you. Second, get hospice in so that you have the support you are going to need. My sisters and brother and I took care of my father in a home hospice situation. I was an LPN student at the time, my sister was a doctor, Dad had esophageal CA with a trachoesophageal fistula, trach, PEG, and he had had his bladder removed 10 years earlier due to CA. My father chose his own time and his own way to die-he stopped all feeds and hydration through the PEG. He cooked us a big meal, said good bye to his sisters and brothers-in-law and kicked everyone out. He told us "You five no more" (I'm the oldest of 5) and laid down on the sofa to die. It took almost a full week but the 5 of us stayed with him 24/7 sleeping on the floor in front of him so he could see us every-time he opened his eyes. He refused to die on my birthday (10/25) asking over and over what the date was. (Funny, he never could remember my Bday when he was well.) He held on until 10/29/1995. He died with all of us with him holding his hand. I did his post mortum care. Strangely, I graduate from LPN school 10/29/1996. Hospice will support you, advocate for effective pain relief for you husband, and free you to do the things you want to do and need to do for you husband to make his death peaceful for him AND you. God Bless You.
  12. by   leesonlpn
    You all have been so encouraging and sensitive. That is what makes this site so heart warming. I had to take Brent to emerg today, 6 hour visit.(I knew some of the nurses on duty and they were very supportive. I haven't been at work for a month, so there were rumors already.(One did think he looked 60, when he is only 47. ) Brent has been having trouble sleeping at night. He sleeps continually during the day,though is difficult to arouse at times, and even then is slow to respond. I was worrying about hepatic encephalopathy. He also gets periods of dyspnea at night.. Says "I can't breathe" Sitting up of course helps, but pillows to elevate don't work as well unless in a hospital bed.. Our doctor is away for 6 days, family crisis, so I went to our walk-in clinic, and thankfully, one of our better gp's was on. Of course he didn't have any information to go on but what I told him a condensed version. Bear in mind, he is good, but has no bedside manner. When he would come to our floor the nurses would tense up because he is always so abrupt.But, through it all, I could see a very on the ball doctor. He ordered abd and chest xray, lft's etc. He didn't show up until four hours later, but he did come and was right up front.He took a while as he was doing phone calls to Brent's previous doctors in Kelowna (1 hour away) to get some information. He named four of the doctors he talked too; Brent's nephrologist, oncologist, other gp, and the internist. So, the doctor would admit Brent overnight, to see how things were, or he would adjust the hs sedation and diuretics and phone me tomorrow. He said what we decided would be the way.Brent wanted to come home, so we took that route. Of course all his liver enzymes were over the 1000 range, but his potassium was OK. His blood sugars this am were 30, and then didn't go below 10 at all. Anyway as the serax and ativan didn't do a thing, he ordered zoplicone(imovane) and we will see how it works. He gave him an extra 40mg of lasix po too. The best thing I bought was a second hand baby monitor. I can hear when he gets distressed, or is trying to get out of bed. He did have a spell a few minutes ago, and after resettling him, he is sleeping peaceably now. I try to separate wife from nurse, but at this point the border is not defined. I don't know about you, but I just can't stop thinking like a nurse. I am taking my combo role and with it will care for him best I can. Oh, you'll be happy to know this doctor who everyone thinks is so grumpy (he's young too), ordered the social worker to see me, which is the same one that works on my floor, and has put hospice, palliative care measures in the workings. Though I am ok now, I know that when I'll need more help, things will have already been put in motion. I will keep you kind souls updated if you wish. I think I am off to bed now. Have to tell him I love him for the hundredth time today.:kiss

    Linda Leeson
    Last edit by leesonlpn on Oct 26, '02
  13. by   renerian
    Please stop back periodically and let us know how your hubby is doing.........

    A big cyber hug,