ever provided hospice nursing to your own loved one?

  1. 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
  2. Visit leesonlpn profile page

    About leesonlpn

    Joined: Apr '01; Posts: 278; Likes: 7
    licensed practical nurse on a CSU/Medical floor


  3. by   Agnus
    Please, contact a hospic. They provide as much or more care for the care giver as for the patient and you are in great need of care.
  4. by   joyflnoyz
    We had in home hospice care for my father in law... it was the most wonderful experience!
    Support with physical care(as much or little as family desires), supplies, sprirtual , even volunteer visitors. Hospice located a man who loved baseball as much as Dad did!
    we also used Hospice with my grandmother.. my dad didn't want people around much, and didn't take full advantage, but that's my dad..more of a loner.
    Please, don't go it all alone..the stress is incredible, emotions run wild, the physical care takes a toll. Hospice is there for family as well as the patient, and is a wonderful resource!
  5. by   aus nurse
    Hugs to you (((((((((((((leesonlpn))))))))))))))))))

    I can't imagine the enormous feelings you must be having. I have never been in your situation, but have nursed many dying people. My best advice mirrors joy and angus....contact home hospice. You both need support for this amazing time...and having nurses come in to share your hubby's cares will also allow you time to simply be his wife.

    Please lean on us for support. I am sorry this is happening to you both. There is no rhyme or reason to this life. :kiss
  6. by   mario_ragucci
    My dad. Only about 2 weeks, with the whole family. It is a shock. You'll be shocked. Can't really prepare. What your doing is the best and love will always be in your heart and mind. I loved reading your post. More power to you.
  7. by   happthearts
    Personally I would call in Hospice as it is free that way you can remain the wife and he can vent when he wants to someone else and won't feel like a burden to you. I know my husband who is a DR and I have discussed this many a time theirs no way either one of us would do it alone. This way you can still help. But won't get overwhelmed doing it. You could take off while they were there doing care and go to the store or get a quick bite.

    Also hospice offers help for all the family members including mental health which everybody needs at a time like this without the feeling they are draining there family and friends .
    My last job was in home health taking care of a lady who was dying the daughters and I both felt it was the way they could remain the daughters She died at peace and it was so wonderful at home with her daughters and her cat and me at her side.

    So sorry to hear about your husband being so ill

  8. by   renerian
    I feel so bad for you. I am sending you a cyber hug..........Yes I have taken care of my father and grandmother while they were in hospice care both less than one year apart. My father was horrible to care for as he probably had brain mets and was meaner than a skunk which was not his normal personality. My grandmother was just heartbreaking. My sister and brother took turns with my mom, giving 24 hour care until it got to hard and my brother and sister, neither are in health care, could not take it so my mom and I did all the 24 hour shifts. I had to quit my part time job, then my full time job to care for him. Used all my savings to live on. I would not change a thing. You being there for your husband will take all your love and energy. Can you take an extended LOA? Money was there for me so I was lucky. Take advantage of all that hospice has, volunteers for your respite or to spend time with your husband if he wants that, spritual support, social workers can help you both get things in order, nursing, nutritional support or therapy or home care aides. They also offer bereavement to you as a grieving wife. AGain my heart goes out to you my friend. God bless you in your journey.

  9. by   renerian
    Sometimes his blood sugars will fluctuate widely so I would just keep an eye on that.......I know you do. I noticed you are on a leave. Definately call hospice. I have been a hospice volunteer for over 10 years. I also sit on a the hospice fundraising committee where my husband is the director..................

    my email is susanrene@msn.com if you need someone to vent to.............

    Also hospice covers the medications related to his terminal diagnosis. Ie) MS, ativan or whatever he needs.........so if you are paying for it and we all know MS is very expensive it can save you some money. They also covers DME like a hospital bed.

    Hugs again,

  10. by   NRSKarenRN
    I too have cared for family.

    Took care of maternal grandfather with Lung CA with mets to Brain in 1981 after he moved into my parent's home. Parents refused hospice. An LPN, I was in my Junior year of BSN program We have 3 1/2 months of memories to look back on.

    When my mother-in law was hospitalized in Sept 1989 and continued to decline despite best treatment, I realized it was in her best interest to stop transfusions (bone marrow depression nine years post chemo for Ovarian CA) and bring her to her own home to die. Made arrangements on a Thursday, had her home with IV Dilaudid, low airloss bed by Friday afternoon and 24 hr nurses (required in those days of free flow pumps). Moved in with 1 and 3 1/2 yo sons. Nancy died Monday AM 3 days later ---first time pain free in years. Had a chance to cuddle with each grandson in bed with her. Wasn't a lot of time, but well worth it. Hospice was to start that day. I was working with a Hospice program at this time, as IV VN so had more experience.

    This past December, Nana, sittting in her WC regal as a Queen, celebrated 93rd birthday on 12/11. Appeared to have had CVA on 12/20, aphaseic, combative and total care. I discussed the situation with my parents, and we called in Hospice. I knew she had only few days to weeks and wanted to bring her to my home but parents elected inpatient Hospice unit due to my mothers poor health. She died 10 days later.

    My heart goes out to you and I also send ((((HUG ffrom PA)))) to you. Hospice can help add validation and advice on how to best care for your husband. It is different when YOU are the loved one: wife, parent, child....than being the nurse. Having cared for many patients with colon CA with mets to liver along with diabetes, I can say that they often need changes in medication to titrate for best effect. Hospice's bag of tricks can be very helpful and comforting that you are doing things for HIS best interest and not just for your sake. If hospice not available, I hope visiting nursing is in your area. Good luck and PM me if advice/venting/brainstorming needed.
  11. by   Hooligan
    I have no advice to offer...only my prayers and thoughts...please know that they'll be with you.

  12. by   shabookitty
    leeson...a big hug to you and your family. turn to us when you need support...hospice is great. My family used them when my grandmother was ill with cervical cancer. They gave helpful advice. My prayers are with you.
  13. by   colleen10
    Hello Lesson,

    Please know that my thoughts and prayers go out to you, your husband and the rest of your family during this time.

    I think you are very brave.

    I watched my step-mother care for her elderly and dying father. She got a LOA per the "Family Act" and cared for him for the maximum amount of time allowed, 3 months. Then once her 3 months were up one of her 5 other siblings was to care for him for the next 3 and so on, and so on. But he only lasted another week after being switched to her sisters care.

    My step-mum moved in with him and took care of him 24 hours a day 5 days a week during the week and a sibling would take her place on the weekends. It was an extremely trying and emotional time for not only her but my dad and the rest of her family. But it was also a rewarding experience for her too as she knew she was providing the very best care possible to him.

    I think the best advice given here is to contact a hospice care center and check into all the services they provide for not only your husband but also yourself. For you to give your husband the best care possible you need to be as physically and emotionally healthy as you can be and I think they will be able to help you with this. Also, my step-mum found that upon taking care of her father his health deteriorated more rapidly than anyone had thought and taking care of him became much more involved sooner, rather than later. It would have been easier for her to check into hospice services, etc. ASAP in the beginning rather than waiting a while and when things became tougher to handle and it was harder to make time to talk to someone about services and options.

    Please also remember to be open to your family, friends and your children if you have some. Let them help you when they offer it. It's not just important for you to have some help and not have to go this alone but it is also important for those that love you and your husband to feel that they are doing something productive.

    Despite the sacrifices that my step-mum made in taking care of her father I think some of her siblings were jealous that she ended up being the only one that took care of him.

    Best wishes and sincere prayers to you and yours,

  14. by   MollyMo
    leeson, the best suggestion is to contact hospice. They will work with you and will help you take care of your husband. You will not be set aside for them to assume total care. We used hospice when my brother was dying from AIDS. I was still a student at the time, but the hospice RN and aide took alot of their cues from me and my mom. They were very professional and caring of my brother and supportive of the rest of us. You must remember to take care of yourself in the middle of all this. God Bless you and your husband and give you peace.