I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: RhondaQ on October 14, 2006, 07:24:05 PM
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I promised I'd check in whenever I could, so here we go...
Hospice nurse came to visit this week for the first time and will be returning now twice per week (Monday's and Thursday's) to see my father, check vitals, ask questions, etc. I'm so glad we acted quickly on this as they did need at least one day for paperwork and that took about 2 hours. Dad is in good spirits, in fact received meds for arthritis FINALLY so his shoulder joints don't bother him like they once did. His nurse is very friendly and professional and dad seems to like her, so this is good as well.
He's been off dialysis for over two weeks and not showing outward signs of any changes as of yet, but the nurse listened to his breathing and heartbeat and mentioned that she heard fluid in his chest. He takes Lasix, but it can't prevent the evitable I suppose. His confusion has gotten a little worse the past few days and he's complained of short-windedness and very weak in the knees, but still getting around with the support of his cane and appetite is good. It's still scary every morning when i get up and dad's still asleep. I worry until I see him up and moving about....ya' know? Who knows how much time he has left and the nurse hasn't given any clues, but did tell me that things are going to get worse as time progresses. They had a comfort kit delivered to our house and was told to refrigerate the meds (morphine, lorazepam, etc.). I remember when my mother received the same thing back in 1998 when hospice assisted us in those last days. My mom died of metastatic cancer that had gone from her right lung into the liver and she passed away at home as she had requested.
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The strangest thing for me right now is that I am finding myself almost avoiding my dad and he's right here in the house with me!! I spend time in the mornings over coffee having conversation, but as the day progresses i look for any excuse to immerse myself into the computer world....I guess it's my escape, but worry that once dad is gone I'm going to be beating myself up for not spending each and every minute with him. Is this wrong? I do know my neck, shoulders, base of my skull has been tight and hurting so bad due to stress. I wake up stressed, go to bed stressed and stay that way constantly. I need to get out of this house and plan to do so if even for two hours tomorrow. Not sure where I'm going or what I'm doing, but it's just not healthy to stay cooped up here day and night every day.
Okay, enough rambling. I don't have much to report but wanted to fill you in as I said I would do. Hope this finds you all well and in good spirits.
I appreciate all of your responses and support very, very much....
Many blessings, Rhonda
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Rhonda, thanks for updating us. I've been thinking a lot about you and your dad.
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Thank you Sara:) ::HUGS::
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Rhonda, it is hard to watch a loved one pass on. Does your Father know the Lord? I guess that gets complicated.....but I'm a Christian and to me that is what I wanted for my father. (Don't know if I got it done). I know the stress you feel. When they are finally gone you feel relief for a couple of days until you get rested up and then you wish they were here again to take care of. Yes, spend time with your father. Just hold his hand while he sleeps. You'll be glad you did. :wine;
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Thanks for the update. My thoughts are with you these coming days. :grouphug;
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Thanks for the update Rhonda, You are in our thoughts and prayers. :grouphug;
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Rhonda,
Don't beat yourself up for wanting to remember him as he was, and not as he is now. It's completely normal for you to be trying to escape seeing him in pain. My mother was desperately ill for months, and I remember how hard it was to be with her before she died. She had been such a vibrant person, it was really hard for all of us to deal with the way she was at the end. Focus on spending quality time, not quantity - play his favorite music or look at old photos. And take that time for yourself. Being the caregiver is a hard job. You said you were going to get out for a while, but didn't know where to go - can I offer a suggestion? Check the phone book for a local massage therapist or spa with a professional massuse. Even a half hour session would probably do wonders.
Hang in there.
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The first rule in palliative care for patients who have withdrawn from dialysis is to keep fluid off the lungs, since dying from fluid on the lungs can be extremely painful. Fluid removal is often done by making a small puncture in the back at the very base of each lung and letting the fluid out through a catheter (about the size of a straw) which is inserted. I have seen the procedure done several times and since it is performed under local anesthesia it is quite painless. It is also a simple enough procedure to be performed in the home, though I have only ever seen it done by physicians. The only discomfort patients experience is that sometimes afterwards they experience a few sharp pains in the lungs as the lungs adjust to their new, contracted volume. I hope there is a plan in place to have this treatment for your father, since even struggling with shortness of breath from fluid on the lungs can be quite stressful.
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I think the proper terminology is a mycardial window. to get the fluid off the heart and lungs.
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Have you heard about the organization of Swiss doctors called Dignitas? For a very small fee they will provide a gentle and peaceful death for any terminally ill or suffering patient. This is also perfectly legal under Swiss laws for Swiss citizens and foreigners alike, which are thus more helpful than similar laws in the Netherlands, for example, which only allow assisted death for citizens of the country. If your father ever reaches a point where he regards continued life as mere pointless suffering, and of course the American medical profession cannot help him, Dignitas could come to the rescue.
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The first rule in palliative care for patients who have withdrawn from dialysis is to keep fluid off the lungs, since dying from fluid on the lungs can be extremely painful. Fluid removal is often done by making a small puncture in the back at the very base of each lung and letting the fluid out through a catheter (about the size of a straw) which is inserted. I have seen the procedure done several times and since it is performed under local anesthesia it is quite painless. It is also a simple enough procedure to be performed in the home, though I have only ever seen it done by physicians. The only discomfort patients experience is that sometimes afterwards they experience a few sharp pains in the lungs as the lungs adjust to their new, contracted volume. I hope there is a plan in place to have this treatment for your father, since even struggling with shortness of breath from fluid on the lungs can be quite stressful.
With kidney patients they just go through Ultrafiltration. Dialysis.... only no toxins removed just fluid. You only have to go through this when the fluid gets bad. Maybe once.
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Yes, my dad knows the Lord and in fact the Chaplain is coming on Thursday to provide encouragement and comfort. As far as Dignita goes, this is actually who we had when my mother was diagnosed with cancer. In Arizona there's a division of hospice that goes by the name Dignita and I'm sure that's who helped with mom as I still have their contact info around here somewhere. They were super!!! We have hospice of KC now and they are doing a great job for my dad as well. So far they've provided nursing, the chaplain called and will be visiting, social worker has been here once and called once today and we've had prescriptions delivered twice to the house through their pharmacy free of charge (medicare picks up this expense). They also provide a CNA should we need one to help with bathing, etc.
My dad still seems to be doing pretty well right now. His blood pressure yesterday was quite low at 98/40 and the nurse was troubled by the bottom number which indicated that he was not getting deep breaths and the fluid was building up in his chest. He's still on Lasix, but we're skipping his half blood pressure pill at night for now or until we hear otherwise.
More later:)
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I really appreciate you sharing this with us. But I want you to look after yourself as well. I understand the stress you yourself are going through. I looked after my father at home when he was going through kidney failure without dialysis. It is not at all easy, but at least I know he was not in pain. Please continue to keep us posted.
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Still thinking of you guys. :cuddle;
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When grumpy gramp decided to stop dialysis he quit all meds too.I was worried about pain but he had none.He was in constant pai when he was taking treatments and in spite of the meds they gave him it didn't help.We were really upset because the drs. couldn't offer any help.We had no one to come in but he was good until sunday when he dozed off and on all day and even talked to me a bit and then at 8 the next morning he just quit-----at home and the way he wanted it to be .I sat with him all night and as i said there was no pain --no trouble breathing--- his body just slowed more and more and quit.Now he is in a better ,more peaceful place and as much as we miss himm we never wished him back.Wife of gramp
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When grumpy gramp decided to stop dialysis he quit all meds too.I was worried about pain but he had none.He was in constant pai when he was taking treatments and in spite of the meds they gave him it didn't help.We were really upset because the drs. couldn't offer any help.We had no one to come in but he was good until sunday when he dozed off and on all day and even talked to me a bit and then at 8 the next morning he just quit-----at home and the way he wanted it to be .I sat with him all night and as i said there was no pain --no trouble breathing--- his body just slowed more and more and quit.Now he is in a better ,more peaceful place and as much as we miss himm we never wished him back.Wife of gramp
Thanks. That is very comforting to hear when you have someone who has kidney failure and is no longer being dialysed.
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When grumpy gramp decided to stop dialysis he quit all meds too.I was worried about pain but he had none.He was in constant pai when he was taking treatments and in spite of the meds they gave him it didn't help.We were really upset because the drs. couldn't offer any help.We had no one to come in but he was good until sunday when he dozed off and on all day and even talked to me a bit and then at 8 the next morning he just quit-----at home and the way he wanted it to be .I sat with him all night and as i said there was no pain --no trouble breathing--- his body just slowed more and more and quit.Now he is in a better ,more peaceful place and as much as we miss himm we never wished him back.Wife of gramp
Thank you for that note. It makes it easier on me that when the time comes I will just go to sleep.
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Peaceful and at home with no pain.
That's what we all wish for.
Thank you for sharing that with us.