ever provided hospice nursing to your own loved one?

leesonlpn · Oct 25, 2002

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

renerian, BSN, RN · Oct 25, 2002

Please stop back periodically and let us know how your hubby is doing.........

A big cyber hug,

renerian

JAYNE DANCE · Oct 25, 2002

YOU AND YOUR HUBBY ARE IN MY THOUGHTS AND PRAYERS.......MAY GOD BLESS YOU, AND BE BY YOUR SIDE IN THESE UPCOMING MONTHS (((((((((LESSON AND HUBBY)))))))))))))

happthearts · Oct 25, 2002

Hugs to you and yours make sure you take care of your self also when you need too .

Happyhearts

ktwlpn, LPN · Oct 26, 2002

Originally posted by leesonlpn
Says "I can't breathe" Sitting up of course helps, but pillows to elevate don't work as well unless in a hospital bed.. >>>>>> In the USA many insurance plans will allow you to rent durable medical equipment-we were able to rent a hospital bed and bedside commode...An area nursing home GAVE me some long fitted sheets and good quilted rubber backed bed pads.Our American Cancer Society also provides some services-maybe similar organizations in Canada do,also..

happthearts · Jan 22, 2005

Yes I have done it and yes I have called hosipce in I think personally its diffrent with your family members .I did this for my MIL two months ago 2004 and my mom in 99 . But both times was smart enough to remain the Dear daughter and allow others to care for mom as well as MIL I arranged the care I help But wanted to remain the daughter and Dil Hospice was very good To let me interject thoughts and feelings help when needed .But this gave me the time, just to love them and be there for them as a loved one Not as a caregiver and not to feel they were burdening me .My Mom also felt she could confide in her nurses and caregivers about her fears without burdening me or worrying me . We became a total support system for them when they were dying.

Hospice is there for the living as well as the dead They will help you deal with all those little things so you won't get so burned out and overwhelmed

I refere alot to Vista care out here in Utah.

Hugs You have a hard road ahead :crying2:

Happy

Mystery5 · Jan 22, 2005

My husband died at age 52 from Lymphoma. I went through a hellish month long hospitalization, my youngest two children were 3 and 16 months, the hospital was over an hour away, his family was in Poland, my family is non-existant. Everything happened too fast for Hospice though, but his brother was here for a month until he died and his sister for 4 months.

I learned from my mistakes, and here is what I would do differently:

1) I would have asked for help from where ever I could get it, instead of being brave and stoic.

2) I would have sent his sister back to Poland after he died because difficult, self absorbed people are stressful to have around, not helpful.

3) I would have been more assertive with the medical personel.

4) After he died I should have closed our restaurant right away. Instead I kept it going for 6 months and was at the mercy of the employees.

5)I should have relaxed more with him when he was home. Instead I was frantically trying to pretend this wasn't really happening and that he would soon bounce back.

I'm so sorry that you're going through this, it's very very sad. :crying2: