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I don't really have a question, I just have been preoccupied with thoughts of "is my husband dying?" The last few weeks he has had many symptoms that seem to go with stage 4 or stage 5, kidney disease. We know he was in stage 3 a year ago. He doesn't want/can't due to his weakness and sickness go to the doctor. I respect that. I asked if he wanted to get a home lab visit as we have done that in the past, but he didn't seem to want to. He has already decided when he gets to stage 5, he will not be getting dialysis. He just wants to be at home and I agree and want him to be as comfortable as possible. I asked him if he would rather not know what a lab workup would show. He said he just thinks he has "a bug". I guess it is me that wants the info. I thought if we knew, we might be able to talk about hospice care or something to make him more comfortable. He is always in a lot of pain, bowel problems, itching, sleeping or drowsy all the time, variable urine output, weird blood pressures, less appetite. He has been in very poor health and mostly in bed for the last 5 years after multiple strokes. He is diabetic and has other health issues too.And like many, has a poor diet and doesn't have energy to take care of himself as he should. Bless his heart because he has all these years kept a faith that the Lord is going to heal him, and I know that too. Just don't know how or when. He has really fought hard to keep living even though he has been so miserable.

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It is good that you want to respect his wishes, but does he understand how much your not knowing is hurting you? Every day “could” be the day his body fails; that anxiety can be debilitating. You shouldn’t have to face that alone and unsupervised at home. It is for Your mental health that he needs those tests and to get hospice. If he is still mentally sound, you should be able to get him to understand. It’s one thing if you had no idea he was sick or had pre-existing conditions but since you both know he is failing, it’s not right to keep “flying blind”. I understand ambulances and hospitals aren’t happy places but the trauma of seeing your loved one seize up from organ failure at some random point isn’t going to make his passing any easier or comfortable. Please get help. If he loves you, he will forgive you. Also he won’t have to feel alone if he has a support group like this for his condition. You can actually find those thru a dialysis center like DaVita or Fresenius. My father is on dialysis and trust me that support online can help. Everyone truly does face DEATH alone in their own way, but that doesn’t mean you live in a vacuum and face this by yourselves.
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Thank you all for your responses. I too want to get him evaluated, but there is nothing wrong with his mind and he prefers to wait for now.I have to respect that. I know it would require an ambulance and that is a whole scene we have gone through too many times, he hates it, understandably. (The hospital). He is sleeping a lot this weekend. I need not to sit here and cry and wonder what is going to happen, but just live in this day. He seems comfortable enough at the moment. It does help just to post here and hear from others who have been through it. I also feel it would be best to know what is going on, so that if it is time for hospice we can get that care. He knows that I think it is his kidneys. He might come around to wanting to get evaluated. He said this morning that he feels so alone in this, not that he doesn't know I am here for him and we have been happy together; but just that whatever is happening to him is a journey that is a solo one. I get that. Just as my journey of losing him is a solo one. I just want him to be comfortable and not suffer.
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Whatever his decision about dialysis (and I couldn't agree more with his decision; I am a retired RN who has written directly into my Advanced Directive that I will not accept artificially administered feedings or dialysis, even temporarily) he needs the lab tests and the MD visit. Call the office to find ways and means to arrange this. You can then call in Hospice if the diagnosis/prognosis gives him fewer than 6 months to live. Hospice cannot be ordered without the MD. The MD cannot have information on which to make his prognosis of six months or fewer without lab work. The MD may tell you to arrange 9ll and ambulance to ER simply to get these tests done.
I wish you good luck. I am so sorry you are both going through this.
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Call his doctor and ask him to make a referral for a home hospice consult.
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AlvaDeer Apr 2021
He will need MD referral for Hospice. Almost certainly.
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If your husband is not wanting any further treatment, and is experiencing all those various symptoms, then I would say that it's time to get hospice involved in his care. They can tell you how far along in his disease they believe he is in, and will try and make him as comfortable as they can. They will also cover any needed equipment, such as hospital bed, oxygen concentrator etc., along with any needed supplies and medications, all covered 100% under your husbands Medicare.

My husband was under hospice care in our home, and completely bedridden for the last 22 months of his life. He too fought hard to keep living.
I believe that God heals some on this side of heaven, and others when they're finally with Him in paradise, and we that are left behind to carry on, must accept whatever the outcome of our LO's journey is. I pray that God will give you peace and strength for whatever yours, and your husbands journey may look like. God bless you.
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