Hi all
I posted this before but I didn't get any advise. Hopefully this time someone would be able to tell me if this is normal or if she is dying:
The doctor doesn't seem to be concerned about anything but the nursers are and requested a doctors health check to see if the doctor agrees about hospice care. The doctor didn't agree but this was 2 weeks ago and we can still see her deteriorating rapidly. She's 88, diagnosed with stage 4 kidney failure last month but further blood tests have been requested for next week. She also has liquid around her heart but it's 1cm and the specialist said they will worry once it goes over 1cm. They are also suspecting a possible copd based on an X-ray from about 10 years ago. When on antidepressants she was so much worse so they were stopped. The nurses also suggested oxygen therapy but doctor said she was fine. They also said to keep her comfortable and give her to eat what she likes instead of introducing a kidney failure diet. Doctor thinks her breathlessness is caused by the heart which we can't understand as breathlessness is part of kidney failure she also itches a lot. She had a heart specialist check her heart and she doesn't have a heart failure only a bit of artial fibrillation. He also said he is sure her breathlessness is caused by the kidneys. When she scratches the skin flakes off onto the sofa. She's pale and has sore skin under and around eyes. She's lost a lot of weight in the last 6 or so months. She says she isn't hungry but she does eat everything we give her. She's mobile and talks normally apart from getting many things wrong for example she believed she had two grandchildren she even knew their ages and names. She only has one. When she sleeps through the day and we check on her her eyes are slightly open as if she's staring at something but without focusing on anything. At other times the eyes are moving and we think she can see and hear us but she's asleep or comes round very quickly saying she wasn't sleeping. Sometimes we are not sure if she's alive then suddenly she opens her eyes and says hello. When watching tv she doesn't focus on it anymore as if it's not on. Last week she said a nurse came to collect her heart monitor off her chest and to see how she was feeling. No one came but the monitor was taken off in a way which another person would be able to take it off for her. As if someone has been to take it off. She was meant to keep it on for 24h so they could assess her artial fibrillation but it was taken off within about 6 and hidden VERY well. It took us half a day to find it. She could still remember the nurse the next day describing what she wore and that she used to come to check on her mother. This would have been about 50years ago and the nurse back then was retiring and living 200 miles away. I don't know if this was her hallucinating or if it was a Death Bed vision. She can't remember the nurse today. She normally sleeps through the night. But the other day in the morning she called my husband twice by his deseased fathers name ( on the day of his fathers funeral anniversary which she could not possibly remember) then she slept all day ( went to the toilet only twice that day) and at night she was up and dressed ready for breakfast or going to the toilet about 5-6 times. The next day she was lost in her bedroom and couldn't remember where the toilet was (it's next to her bedroom). She even went into our bedroom to look for somewhere to put her tights. She wanted to wash her lunch tray in the bathroom. That night we thought she died because she never came out of her bedroom all night until woken up in the morning. She hasn't done anything like this before or since. She was able to go all day without using the toilet much then not at all at night but she has now started to wake up at night and use the toilet, when she goes back in her bedroom she turns the light on and tries to dress to go to the kitchen for breakfast. She can't remember any of it when asked in the morning and is apologetic. Putting the clothes on makes her extremely breathless but she is able to do it very quickly. By the time we go to check what she's doing after using the toilet she's already coming out of the room dressed!
If you will look on the AgingCare website, there are hospices advertised which will be more than happy to answer your call. If the one you call serves your area, they will make an appointment to meet with you. If not, search the internet for one that serves your area.
Your mother is so close to the end, and she does not deserve the horrible pain of kidney failure. Please call *any* hospice or take her to the ER for end of life hospice evaluation.
You are always free to change doctors in the US. I am sorry you live in a country where you don't have this freedom.
Doctors are not gods and can make mistakes or have different priorities than our loved ones. When we refuse to be proactive, we receive less than ideal service. When we rely on excuses to justify our lack of action, we stagnate. But when we take the bull by the horns and refuse to take no for an answer, we get attention! If you must, take mom to the ER and get her pain relief!!
You have obviously not listened to any of the advice given here.
1 Get another Dr.
2 Call hospice and request an evaluation
3 Take her to the ER and have them contact hospice
Don't worry. The baby, she'll remember!
In your place, I would call hospice for an evaluation. If they think it is time and their doctor agrees based on evidence of her condition, then signing up for that can be very helpful. Not only will they look after the comfort of your mother, but they can be a source of information and encouragement for you. They answer their helpline phone 24 hours a day, so if something new is happening at 2:30 am you can call for advice on what to do. They can guide you about what to expect through the end-of-life process.
Come back and report how this is going for you. We learn from each other, and we care!
It sounds as though your mother has quite severe kidney failure and this is what is killing her. itching and flaking skin are all signs as is fluid retention which is probably causing the breathlessness. There is also lack of appetite and often nausea.
First of all find her another Dr, this one does not have her best interests at heart. You can contact Hospice yourself and they will come out and do an evaluation to see if she would qualify for theDr to sign up but hospice staff will put pressure to get that done.
As far as the breathlessness is concerned it is a very simple matter to check her oxygen level with a little instrument they put on your finger. Medicare will only pay for oxygen therapy if the level is 88 or less but it sounds as though she would be more comfortable with it assuming she will keep it one. If she is on hospice there will be no problem as they will supply it automatically at no cost.
I can not predict how close to death she is but i would guess within a few weeks.
The nurse she described could be a spiritual visitor. i do not use the word hallucination because I believe there is a big difference. These vision are not usually frightening or distressing in any way. Just trat it normally and don't try and dismiss it. Ask questions such as the nurses name or was she wearing her uniform. Treat it as if you believe it and let her talk.
There is such a big build up of bad chemicals in end stage kidney failure so it does affect the brain which accounts for the sleepiness and confusion. Before she finally passes she will probably become unconscious for a while. This is when you really need hospice so they can make sure that she has no distress and that she is passing urine normally and not retaining it. Again it is usual for urine production to be reduced with failing kidneys because so much fluid is being retained. Expect her to also have at least swollen legs and feet. if she was not showing signs of dementia before she began to decline she probably does not have it.