Is mom at the end?
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.
16 Answers
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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.
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.
When mom stops eating and drinking altogether, she will usually be at her end and may last a week or 2.
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.
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.