Near the end, but how to judge how long? Six days, six weeks, six years it's so hard!

This was posted in May. I wonder how his wife is doing. I wasn't able to find any additional posts by klh4uni. I hope he was able to get some help.

My LO is still alive, though, sleeping more and more. Now, almost completely bed bound, no speech and in semi conscious state, but, still eating some. She has lost one-half her body weight from when she went on hospice 18 months ago. and is around 75 pounds. (Height 5"5). Every day, I wonder how much more she can take.

Having gone through a prolonged period of diminishing health with both parents, I can tell you that you should contact your local hospice organization. Our county has one but there are also private hospice organizations, as well. It was my experience that both types are remimbursed fully by Medicare so you or your wife should not pay one cent, regardless of your income level. Please reach out to them and they will come out and assess the situation immediately, as well as provide health care providers to stop by and also provide pain medication as needed. I am sorry for your and your wife's situation, but based on your description and my personal experience, there are only very few months, weeks or days remaining. God bless you both. May you find strength in knowing that you have provided for your wife as best you could and that she knows that.

I know what you’re going through and it’s difficult to say the least. We were aware of Moms dementia for about 10 years, however, when she got to the stage you describe, it was only a matter of a few weeks. It’s very difficult to watch when they stop eating, but this is part of the body’s death process. Take courage in knowing you are doing the very best for your wife. Pray for strength, wisdom and compassion. Call Hospice if you haven’t already. You need their help and experience. You’re a good man. And a good husband.

I am assuming you are doing palliative care now, with hospice? If not, that is certainly what should be happening. You are correct in not being able to guess whether it is 6 days or 6 weeks. There is no way of knowing. But I think that you do know that there are not 6 years, and unlikely to be 6 months. I think the fact that you had this unusual response (and it WAS unusual, as an RN I can assure you) to whole brain radiation of an ovarian metastasis to the brain, makes you feel that it is impossible to predict. But I would bet on a daily basis you know which way this is going. Hospice will not prolong agony and will give both of you extra support. I wish you so much luck. I cannot even begin to imagine how difficult this has been, is, and will be.

It's the hardest thing in the world waiting and watching a loved one die. I sat by my mom's side for 14 days in hospice, day and night. For some reason, she kept hanging on and hanging on. Every time I'd leave the room, I'd tell her (even though she was unconscious with medication) that I was leaving. I watched her body morph into "death" which was excruciating. On Christmas day, I held her, sang her favorite song, brushed her hair back and told her it was okay to go. I told her she was going to a beautiful place and we'd all be okay. She died a few seconds later with tears running down her face.

Please stay strong and do whatever your heart tells you to do. I got lectured from an Aunt and her two daughters for "not letting my mom go" by staying with her. I wouldn't change anything as I was by my mom's side the entire time. Where else would I be? She was not alone and I don't regret that decision for a minute. I know you will do whatever you feel is right. I'm saying prayers for you.

There is a hospice publication called 'Death and Dying' which is a small pamphlet that describes the body process of dying, it's symptoms and what you can expect.  I have found it to be very helpful and to the point.  Timing is different for everyone, much of which is dependent on one's will to live and fight to be here.
You can download the pamphlet or ask a hospice provider for a pamphlet.   It sounds like a hospice evaluation is in order.  My Mom has been on home hospice care since before COVID began, and although she has dementia, there are days when she will wake up, wash and dress herself, and say she's ready for her breakfast!  Most other days, she has no idea what day it is or as she always asks, 'what am I supposed to be doing?'  We take it one day at a time and try to interact with her and make her life as comfortable as we can.  We have five dogs who she adores and they bring a smile to her every day, they are great therapy.  This isn't an easy process for anyone going through it.

Mthr hung on for a very long time with her really advanced dementia. She started on hospice at the beginning of stage 7 a/b in Sept and was not completely dependent (feeding necessary) until November. By January she'd gotten below 90 lbs. February she was below 80 lbs. It was not until May that she finally passed, below 70 lbs, and only because I remembered the advanced directive called for no antibiotics. It was hard on everyone to see her go like that, with just tylenol for fever and allowing a bacteria to kill her, but she was a medical professional and knew what she was signing. I know she would have been miserable had she developed multiple bedsores and had to live with them for years with a feeding tube and other interventions. I did not hear her speak after Jan, 4 mos before she died.

It isn’t going to be too long-when my MIL. Did all of these things she was shutting down. Soon They will no longer communicate and things will seem semi comatose a few weeks before she died my MIL was calling for her mom-her mom had died when she was four!
hospice should be telling you what to expect! Are your moms extremities ever so faintly starting to ‘mottle’? That’s a two weeks maybe less sign. But I am not professional-again I say ask hospice how you can prepare for what’s coming. Will the body be picked up at home? Is it ok to just sponge her mouth? I can say so much more but please you NEED some answers from those who deal with this often.

So many people going through similar circumstances. And so am I with my mother. She was diagnosed with ALZ soon after my father died two years ago. Her symptoms had previously been "hidden" because of her involvment with my father's care-taking in a nursing home for many, many years. It took a good year for my sister and I to get through all of the red tape and get Ma into an Assisted Living Facility, this past October. She was still going out with us and while very confused and calling us several times a day and night, she was still active. As so many of the stories go, she fell anyway, broke her hip, the Sunday before Christmas. The medication and situation - surgery, rehab/skilled nursing facility, knocked her ALZ into overdrive and while she was still not walking in January/February when we got her back to her ALF, she was "ok". Then, COVID hit the area. We weren't allowed to go see her. She didn't really understand talking to us through the windows and no longer understood how to use the phone. The first weekend in May, the ALF director called us to go in, geared up, get the hospice team in, and move Ma's room to the front of the building so we could go in, again, geared up, to visit daily. It really helped the first week but since then, she's been declining and seems to be about where your wife is. There is a thickener the hospice team can use for her liquids and it will help for a while but yes, this id "the end" though nobody can say exactly when. Believe me, we've asked. The teams were surprised Ma has lasted this long. We are hoping for the best case scenario where she just falls asleep one last time and doesn't wake again. She's certainly had "a life" and while this ALZ is most undignified, we just want the best for her through the end. All we can do, I'm afraid, is be there and fell better for having been there. I feel for you. I will remember you too are going through this as we are. ♥♥♥

As so many others have said, hospice is what's needed now. I haven't seen it clearly stated that Medicare pays for it in home 100%.

Please check Yelp in your area for reviews on hospice providers and call today. Doctor needs to prescribe it.

Hi I am now a believer that it is unpredictable. My mom was in the hospital and the doctors were saying she was doing well with her vitals. I did not agree and called hospice to bring my mom to my home. Hospice said my mom had at least 3 weeks. The second day my mom was at my home still taking her meds and drinking ,speaking full sentences said "I am going to die tomorrow." All the professionals told me she can not know this and be so alert.
The next day I was how I usually was in taking care of her. Then at 11:00 am after taking her meds and speaking with me, she passed.
I know hindsight is 20 20 but I wish I had believed her. I would have had this time to be saying goodbye, instead I was so shocked, it was like I was in a trance. My point is sometimes no one knows.

I am in the same situation with my mother, who has lung cancer (Stage 3 diagnosed in Nov 2018) and metastasis to the brain, which we found in Nov 2019. SInce then, she did Gamma Knife and nothing else. She is in hospice at home since February 2020 but still speaks, eats well, and is mostly alert. She does have moments of bad memory and cannot really walk anymore without assistance, and with assistance it is difficult.
I can tell you that her doctors have not been able to give me a time frame. It could be weeks or months, they say, which is not helpful. When she was first diagnosed, they told us 3 months. A year and a half later, here we are. A couple of months ago they told us weeks. And here we are. They really have no idea. They just keep telling me to take it one day at a time. So I don't think that even speaking with a doctor will give you a clear time frame.

Please get signed up with hospice! it will help you so much, they are angels on earth! They have so much to offer your loved one and yourself too! They can help you get some rest among other things

My sister was the same. The end for her came when she could no longer swallow pureed food, meds or fluids. The body can only last so long without fluids and she was nine days without until she passed away. Take care.

Imho, you should speak to her physician and her oncologist.

My Mom lost more that 30% of her body weight at the residence that she is in and they told me that, from there, it could be three months till she passes. I don't think that is going to happen, but then they wanted to put her into hospice because of the weight loss. She was denied by Medicare because she was too vocal. They tried a second time which was a month later. Still didn't qualify. They told me that probably in another month. Hospice did their evaluation and they were the ones that told me Mom didn't qualify.

My advice? Look into Hospice as they have a very good hold on what exactly is happening with your wife and how long she still has to life. You probably can talk with her doctor for a name or number. My understanding is, if they accept her into Hospice, they tend to her and some of her needs which will give you some relief.

Hope you look into it.

@jcubed821....
Secretions are what I use to describe saliva.
Much of the swallowing reflex is absent and the body does not usually recognize thin fluids as something to swallow so often they are inhaled and go to the lungs (aspiration pneumonia is a potential problem)
And much of the secretions gather in the back of the throat and cause a gurgling sound. Often the first thing one tries to do is remove the secretions with a swab and that can cause gagging or worse vomiting.

Talk with her oncologist and primary care doctor about your concerns. They can give you a prognosis and somewhat of a time line. It may be helpful to have them prescribe hospice care - which is usually covered by insurance - to provide you with extra help. An aide can be with her during the night so you can get some sleep. An aide can also help with hygiene, toileting, and feeding.

Nobody knows exactly when a person will pass. If your wife if not eating or drinking enough and losing weight, those habits are not compatible with maintaining life. In my father-in-law's case it was about 2 months. He did not eat or drink enough to maintain life. His organs slowly failed and he died peacefully in his sleep.

I guess a good place to start is to have a discussion with her primary care physician regarding her current condition and prognosis. Have you talked with the physician regarding hospice care? I'm thinking that this may be a viable caregiving option as it will provide you and she with additional support. I feel that you need to be cared for too. After all, you need to take break to care for yourself and a hospice volunteer could be invaluable. Hospice also allows for a respite stay for her in a facility so that you can get some rest. In regards to the change in sleeping, is she waking by any chance because she is in pain or needs repositioning? I know with the pandemic, services may be administered differently, but I would investigate. It is so important to care for yourself during this time. After all, if you are not in a good place, it makes a difficult situation even more difficult. Do you have any family or friends to help? Church members? Or are you able to hire privately for evenings/overnight maybe a couple of times per week? It does sound as if her body is shutting down with the increase in sleeping and the decrease in food intake. However, none of us are God so it is unpredictable.

Lots of good answers about how to care for her, but to keep steady, you need to care for you too. That's an important consideration. It's a tortuous waiting game. I experienced it with my MIL and my husband. I learned to do the simple things like breathe, go outside, and other things to keep my mind steady. And I found each day that I prayed about giving them the space to navigate this transition. That it's about making space for that person to find their way, because we really can'thelp them with that. Only support them from the side with love and understanding. It's like they're walking in a field or maze, gradually finding their way. And then each of them died when we caregivers were literally looking away from them for a few moments.

Tare care of yourself so you can continue to be that support for your wife. And recognize and honor the grief you must be feeling as well. I found talking to the hospice social worker was enormously helpful.

sounds like she’s dying. from my experience which sounds similar to your experience it took a total of 2 months and then it happened. So, think <3 months. Let us know.
Okay, now that I read your response to someone it looks like she ate well last night, but that was my experience in the beginning of the decline, though my person did not eat as much as yours did. If hospice is saying <6 months I can go with that. The key is when they don’t eat anymore...more delusions/illusions, can’t swallow, maybe sores forming. I can’t say imperative enough, make sure hospice is involved so they make the transition for her as comfortable as possible. I didn’t know the signs of death either and she only received 2 days of comfort in her passing. I regret this now.

I can't give you advice because you're in a really really tough situation. But I can pray for you--and I will!!!!!!!!!!!!!

Can 3 hospice care workers live in the home? That way, they stay quaranteened since they do not leave. May cost more money but worth it.

I neglected to mention that hospice is being utilized. The hospice nurse and the CNA believe less than six months. I just wonder since her vitals are good, oxygen 98%, blood pressure 105/60, which is very normal for her. Pulse is normal, etc. I would like to use inpatient hospice but I'm not sure that is covered since she is basically not in any pain and her needs are pretty much being met in the home. Although she fell out of the hospital bed last night and we had to have the fire department help get her back to bed. It is just a struggle and other options for support seem at times limited.

Her food intake is reasonable considering she is bedridden all day. Yesterday, for example, two scrambled eggs, a protein chocolate malt, and 4-5 bites of a chicken pot pie. Probably 1,000 calories. We are using Thick it for water now to make it easier to swallow.

Look for a Hospice publication, or perhaps find one online, that specifically and concretely describes "what to expect at the end."
It discusses eating, sleeping/waking, responsiveness, color of skin etc. Very helpful in dealing with each day.

One of the responses below suggests Hospice. A doctor will have to certify that she is eligible, but most doctors will do this. Neither you nor her doctor can know how much longer she will live. Make the necessary changes now so that you can tolerate your life. It's not easy caring for someone who needs everything done for her. Talk to a social worker to find out what help is available for you. You may also want to talk to an attorney specializing in elder issues and long term care.

It is hard having a bedridden patient at home. There isn’t really anything you can do but follow the advice of the doctor and your own instincts. Sorry you are experiencing this and sorry she is experiencing it too. I am assuming hospice is coming in? If not maybe get them as a 2nd layer of care to check on her. They see so much and will know more about her timeframe and comfort measures for her. Good luck to you.

This is so difficult. My mom passed away in February and I had many of the same questions you have now. Here comes some free advise. I was so tired that I called hospice and requested an evaluation. I knew that I needed more help. I asked for respite care. I found out that she could go into their hospice for 24 hour care. I realized that I could not deliver the level of care she needed. She would get 24 hour care and I would get a rest. It worked out that she got the care and I got the respite and she passed away. Although I knew the end was near, I was in no shape to have her die at home. She had received excellent care in my home for 6 years which I provided. When the time came, hospice really helped me. I will always donate time and money to their cause. I did check out several hospices and found a good one. Some are for profit and some are non profit. Work with your doctor and come up with a plan. Please do not try to do all of this by yourself. I tried but things worked out when I got help for both of us.

The basic answer to your question of "How long" before death, is that it is very hard to know. Some answers below have given indications, If she stops eating and drinking, that is a clear sign that death is near, possibly days or a week. This would not be painful for her, as she would slip away peacefully, unless there is some kind of intervention from the cancer.

The sleep pattern is challenging, but not surprising. There are clinical studies that suggest that people with dementia take more sleep in order to lessen the effects of the tangles and Tau deposits in the brain. The long sleeps do not stop the tangles and Tau deposits forming, but they seem to minimise their impacts.

My wife of 57 years, now 10 years into Alzheimer's has been in bed now at home for the past 22 months. In September 2018 we all thought she was dieing, but she rallied and and has still retained the ability to communicate to a considerable extent. A local hospice has given very helpful advice. What she eats and drinks is very important. We find that coconut water with Kafir works well, and aim for 1,000 ml per day. Food needs to be mashed up so that it does not require too much chewing. We have considerable help from local Home Instead CAREGivers, which gives me space to do other activities.

It is not easy, but if possible care at home is certainly the safest and best option at this time, when care homes and nursing homes are so threatened by Covid-19. However, you need to set up a life style that is viable for you as well as your wife. Small changes can make a big difference.

Prayers and hope for the future, which remains unknown.

Call hospice.