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My mom has been in stage 7 for about 2 years now. For the last 2 years, she has been unable to walk on her own, speak (small words here and there and nods) feed herself, etc. She is unable to care for herself at all. She is at home with my dad and a daytime care giver and my brothers and I fill in during the nights and weekends with her care. She also has been on Hospice care for about a year now.4 weeks ago, mom started showing signs of declining more when she started throwing up, not wanting to eat as much, unable to urinate and her bowels not moving. The Hospice nurse told us that she most likely had 2 days to a couple weeks left. This surprised us all because she's been the same for so long. Mom has since that time seemed to be getting better. She's smiling more, eating more than normal (but still losing weight, it's just not sticking) and even acts more alert than usual at times. She still has a catheter in but her urine is still cloudy. Her bowels are moving on their on now without any help. She recently started hallucinating like she's seeing someone or something that we can't see. She is sleeping more now but it's a on and off thing. Some days she will sleep for 6 hours and some days she won't sleep at all during the day. It has been the craziest and most stressful 4 weeks of our lives and we are all so confused with this horrible disease. Dad will do anything to get her better and doesn't want to hear talk about her being at the end stage even from the hospice nurse a few weeks ago. He thinks he has nursed her back to where she was. She's not where she was 3 weeks ago, but she is definitely better. The nurse says mom is doing very good right now and isn't putting a time line on it anymore but she does think she's still in the declining stage. My questions is, does this sound like the end stage for our mom like the nurse suggested several weeks ago? Is this a rally? If it is, can a rally last for weeks or months or longer? We are enjoying these good days with mom but It's all confusing at this point.


Thank you for your response.

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The Hospice Nurse is the best person to know when its end of life.

Yes, they can rally. And once to a stage, Dementia does not reverse itself.

Mom may start having some swallowing problems. At this point food should be a consistency to be swallowed easier. When the body starts to shut down, Mom will probably not have an appetite. At this point trying to force food would only cause her problems because her body is no longer digesting it. As Dementia progresses part of the brain dies. Being at stage 7 probably means the Dementia has progressed to the section of the brain that controls the heart and lungs. When that part dies, so will Mom.

The problem I see here is Dad. He needs to realize that there is no coming back for Mom. If he doesn't her death is going to be really be hard on him. Most people have already grieved for the LO they have lost to Dementia way before the actual passing. The passing actually becomes a relief. They are no longer suffering. I would ask about grief counseling thru Hospice for Dad now. He needs to be able to say goodbye.
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VickyC Aug 31, 2020
Thank you for your response. Yes, dad is our main problem right now. 3 weeks ago when mom was at the point of days or weeks of passing (she was honestly that bad) we finally got him to realize it could be the end. We even talked about what's to come after. We told him that he was in good health and had many years left to enjoy. He cried and said he didn't want her to go, couldn't make it without her and would do everything and anything to keep her with him. We understand how he feels because they have been together for 67 years. Now that she is better, he says she could live for years like this and gets angry if we suggest over wise. Who would want that? My siblings and I have already lost our mom years ago. We love her so much but we know she can't go on like this forever and we don't want her to. It's taken such a toll on our dad and all of us to be honest. We would like to have whatever time we have left with our mom as a special time with her and not have to watch our dad do this. When mom is doing good, he's okay because that gives him hope, but when she's not having a good day, he's horrible. He gets angry and takes it out on us all. We can't enjoy the time with her because of how he's acting. Yes, he needs consulting and the nurse has tried to talk to him but he doesn't want to hear it. Deep inside he knows this disease will not get better, but he's still hanging on to ho
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It is quite impossible to judge these things with accuracy. Whatever time you have left you are making wonderful use of it, enjoying, as you say, the good days. You do understand that whether there are days, weeks or several months left, death is close. You may see some rallying, some days better than others, but there is no coming back to where she was, and I think that your family recognizes that and is bieng well prepared. So sorry for this loss coming to you. So glad you have help of hospice.
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VickyC Sep 4, 2020
Thank you AlbaDeer, hospice has been so good!
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My mom went in and out of decline for 19 months. I took care of her in my home and she was completely bedridden. It was very stressful and confusing, but I tried to make the best of any time I had with her, fresh flowers on her food tray and dresser, playing music she liked and putting framed photos of family on her dresser. Also had a urinary catheter among other problems. I would suggest checking for a UTI. Hospice was a huge help though most of the time it was up to me. I would take this one day at a time and check for a UTI, especially since she has a catheter. You are a wonderful caregiver to your mom. All the best, Katie22.
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VickyC Sep 4, 2020
Thank you Katie22!
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To the medical point....sounds like she has a urine or bladder infection. Cloudy urine isn’t normal and needs to be checked! This could explain the hallucinations and changes in moods. Catheters are terrible at promoting infectious bacteria. It can also be life threatening real fast if not caught and corrected! If she runs fever... take her to emergency room fast!! God bless...
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VickyC Sep 3, 2020
I checked with the hospice nurse and she said that she doesn't have a UTI. She will continue to monitor her since she has the catheter in. She seems to think her kidneys are in the failing stage.
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This is difficult and there is no way and no amount of talking that will help prepare him or make him admit he knows she is going to die. It gets especially difficult when she stops eating entirely and you really would have to either put a feeding tube in and let her go. Sounds like she was close to this before. If he is the decider of these things, he may opt to do anything and everything even if it really will not help. Some people do feel that any life at all is desirable. And your father might not see a path forward for him after she dies but he will once it happens.

My inlaws were together more than 70 years. She started declining while they were living at home and he supervised her as long as he could. She was 92 and he was 94 when they went into care together. Her dementia and refusal to stay put in chair or use walker led to a fall which led to a broken hip. Hip was repaired and bone healed but her mental and physical condition still declined. She really withdrew from him and she would not let him touch her which was really painful for him. He knew she was preparing to leave the world but it was still painful. His dementia had thankfully progressed to the point that he no longer made decisions for himself or for her and she had moved to a different cottage by the time she died.

I think the best thing is to just present what is happening factually and explain why and leave it at that. You will never convince him and you don't need to. It is going to be hard for all of you. She may seem to rally but that is likely temporary; it could happen several times and she will never gain ground or get better. She cannot be allowed to suffer to remain alive for him and hopefully he will see that.

So sorry your family has to go thru this; we all know at least part of how hard it is.
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VickyC Sep 3, 2020
Thank you dogparkmomma. Your words are a comfort. We are taking it one day at a time right now. Dad just said last night "she's eating and drinking and doing so much better and I think she can make it a couple years like this", I just answer him with "Yes, it's wonderful that she's doing so well". It really is all I can say because if I try to prepare him for grayer days that we all know is coming, he doesn't want to hear it.
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If mom's urine is cloudy, please have a doctor evaluate her for a UTI. Antibiotics will clear that up and the need for a catheter. Infections can also cause hallucinations and bizarre thought processes.

When mom stops eating and drinking altogether, she will usually be at her end and may last a week or 2.
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VickyC Sep 3, 2020
I did check with the hospice nurse and she says that mom does not have a UTI and will continue to monitor her for that since she has a catheter in. She says that she believes her kidneys are failing.
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If her urine is cloudy, has she been checked for a UTI? Treating that could possibly give her more time. She's clearly failing to thrive, but it's good that she seems to be enjoying food even now. Once she loses interest in eating and drinking and begins to sleep more and more, it's generally a sign that her body is ready to stop fighting. It could also mean that she's taking a break before coming back for a little longer. We also kept mom at home with a caregiver during the day and took turns evenings and weekends.
Decline is never a straight line until the very end of the last stage. Typically the end for ALZ patients we were told is caused by 1) pneumonia, 2) sepsis or 3) inability to swallow. For mom, we fended off all bouts of infection, including UTIs and pneumonia until she could no longer swallow. At that time, she slept almost constantly and we kept her comfortable for the last 7 days until she slipped away.
My brother refused to discuss any of this and fought everything until the passed. Even when she stopped swallowing, he was wondering whether we shouldn't try to feed her with a tube; her Living Will was clear on that, so he reluctantly agreed to let nature take its course. A few months after she had passed he asked whether we had acted in her best interests or not by fighting each infection. I told him that I still honestly don't know the answer to that.
But the reality of what you choose to do is based on your mother and father's wishes in this regard. Hospice told us days as well, and mom lived another 8 months after that. The fact is that none of us truly knows until the very end. My brothers and I knew at the end. You just "know."
This is one of the most difficult things you may ever encounter emotionally. Watching someone you love slowly lose physical and mental capabilities as you can only provide comfort is torturing. There's no way to beat it and no way to win. You are fighting within continually for the pain to stop for both you and your loved one but you can't stand the thought of letting them go. I am so sorry that you and your family are experiencing this now.
Please know that while your experience is yours and yours alone, many of us have experienced something very similar. You are not alone. Please take care of yourself through this to the best of your ability, even though it may feel impossible.
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VickyC Sep 3, 2020
Wow, another 8 months? I just can't imagine mom living that long in her condition but dad seems to think so but really only God knows. I feel like your brother, is my father right now. I pray dad never mentions a feeding tube when that time comes and he will let her go. Dealing with him is so much more difficult than taking care of mom. Thank you for your words, they have been a comfort.
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I've been a caregiver for senior's with Alzheimer's/Dementia for over forty years. The one constant I've found that when they are ready to end their life journey - and that's their choice- they will simply slip away. In my mind, they are having talks with the Lord, they know he's preparing a home in Heaven for them. When he's ready, he will reach down his loving hand, and gather your loved one up. But, while you still have the opportunity, make sure she knows she's loved, hald her hands, touch her face, tell her all that's in your heart. Human touch is very important. When she goes, let her go with love, dignity, and grace. You will grieve, but do so with no regrets, no guilt. Do not waste time second guessing any decision you make - any choice you make is the right one at the time you make it. Prayers, hugs. May she rest in GOD'S loving arms for eternity.
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Only God knows when we are born and pass. My dad has literally been on death's door 3 times. Once he was on a ventilatior with kidney sepsis and he pulled through. He nearly died after a quadruple bi-pass and made it. (5 yrs ago) Once I watched him literally flat line on the table and 8 doctors revived him. We have been through a lot in 5 years. He recovered from pneumonia 3 weeks ago. God has a time for each one. She might be showing signs of death coming soon, but, really the end is in God's hands. Enjoy the small moments, her smiles etc.
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VickyC Sep 3, 2020
Thank you laurmay, we are enjoying every single smile we can get from her!
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My mom, 95 yrs old, on hospice for Alzheimer’s, died yesterday. She had clearly been declining - no eating, no drinking, bedridden, not speaking, keeping eyes shut, on morphine, and so on. I visited her yesterday, on a US holiday. There were no visitors, a skeleton staff, and no hospice nurse to be found.

I called hospice and threw a fit. The nurse said she would go right over to check on my mom and call me back. Nurse returned my call and said mom was resting comfortably with good bp, oxygen, and all vitals looked good. Nurse took time to explain that some patients plateau and seem almost like coma patients. Nurse told me that this state could last a week before active dying. Nurse spent some time talking about this plateau stage.

The point? Two hours later, nurse calls me again. OOPS..... I actually asked the nurse 3 times if she was sure.

Moral - who knows.
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Llamalover47 Sep 9, 2020
lakin1013: I am so sorry for your loss and I send condolences.
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