Is this normal for someone with Alzheimer's or are these the signs of dying?

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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!

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As hard as it is to believe, some physicians are uncomfortable talking about death and dying, and will actually avoid the issue. They will dance around rather than being direct, and expect the patient or the family to connect the dots. Some doctors will not give a hospice referral because of that.
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Just to let you all know that mum is not in pain and thankfully never was. She's going into a nursing home tomorrow. The legs have gone back to normal apart from being thin. Thank you all for your replies and useful information
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What country do you live in where Hospice is not available 24/7?  Yes, you have to be referred medically  *eventually* - a doctor's certification after examining the facts - but you can self/family refer to *start* the process.

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!!
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Excuse me? I didn't come here to be told off by anyone like a naughty kid! It is a first working day since the weekend. You can't just change the doctor where I live. There was no one available today to speak to about this or request anything apart from being able to request a specialist nurse for evaluation. They are very busy on a Monday. Where we live you have to be referred to hospice you can't just ring up. This nurse coming should be able to do this. Do not assume that because I added to my comment that her legs have changed nothing is being done or that we don't care about her! Thank you
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Clearly the Dr thinks she is close to death which is probably the case from what you describe but that does not mean she does not need or deserve care which she obviously isn't getting.
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
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A nurse will come in a couple of days to asses her and hopefully refer her to hospice. I haven't checked her feet last week as often as I normally do. They only swell twice or three times before when she was on a water tablet for kidneys. The doctor also told us she should be drinking 6-8 glasses of water a day. This made her feet balloon so we reduced the amount ourselves. I helped her get back in bed today after she's been to the toilet. I was shocked to see her legs they were bony! I could see her tendons running up from the heels to the knees. Her feet and half her legs are purple now. Her feet have been bluish most days but not the legs. Whenever we mention anything to the doctor we are told to keep him updated but nothing happens. The blood test was cancelled because the doctor discharged her! We can't understand what the doctor is thinking. He told us he will arrange blood tests but it's been cancelled. We can only pray that this nurse who seems to be the only person realising the situation will come and refer her asap.
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I'll tell you a story. My great grandma passed when I was about 18 months old. 4 years ago, when my eldest became pregnant, she asked all of us "grandparents in waiting " to think about what we wanted to be called. With no hesitation, I said " Nona". I had no clue where that came from. I went to see my mom, 92, with dementia in her nursing home. She said " oh yes, Nona, that's what everyone called Mrs, C., your great grandma.

Don't worry. The baby, she'll remember!
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Thank you for all you answers I really appreciate it. It's so hard watching her deteriorate especially that we have a baby who she loves playing with. The baby loves her too and calls her nana. The baby won't remember her granddad as he passed suddenly last year which was such a shock and will probably not remember nana either. :(
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It sounds like her doctor is doing palliative care only. His attitude about what she should eat and having oxygen, etc. sounds like he doesn't expect her to recover. That seems reasonable with stage 4 cancer. Now the focus should be on her comfort. I am surprised he isn't recommending hospice.

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!
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There's nothing wrong with seeking a second opinion or finding a geriatric specialist. I can see how you might feel a hospice doc might be biased, but medicare also combs over the records before approving hospice care. Many docs do not realize what a blessing to the family it is to have hospice care in the 6 most before death. There is such a shock to everyone if death come suddenly, and if mom is judged to have only 6 most left, the transition is easier on everyone.
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