I know this is a difficult/impossible question to answer, but no doctors have given us any sort of life expectancy and we feel so unsure of what the future might hold. So I am hoping that maybe someone here can shed some light on their own experiences with family members in similar situations to my grandmother. Here is some info about her current condition:
-82 years old
-Diagnosed with Congestive Heart Failure about a year ago and put on oxygen. Currently she is at 2 liters during the day and 5 at night. She swells pretty bad periodically but we can usually get it to go down with fluid retention and increasing her diuretic.
-Diagnosed with Afib almost a year ago. Went back in forth from sinus rhythm to afib, had an unsuccessful cardioversion, and has been in constant afib for about 4 months now with heart rates often as low as the 30s and as high as the 150s.
-Has chronic bleeding issues so she isn’t able to be on blood thinners to reduce the risk of stroke with the afib. So about a month ago she had a Left Atrial Appendage Closure procedure which was successful.
-Has heart valve issues. Doctors considered a valve surgery (one they were thinking about was a Mitral valve clip) but decided there were too many valves that needed fixed and she wasn’t strong enough for multiple surgeries. They said she probably wouldn’t live more than 2-3 years just based on alone.
-She lives at a nursing home. She lived with me and my mom and we took care of her until recently when she became immobile. She only gets out of bed via hoyer lift, and only when the nurses “force” her to. Her immobility is partially due to a painful condition she has (Polymyalgia Rheumatica) and partially because she is stubborn and decided to quiet physical therapy a couple months ago. She had been walking (with a walker) until about 5 months ago. Even with them putting her in the wheelchair to sit for a few hours every day, she is currently getting bed sores.
-Over the past 2 months or so she has become pretty confused which is brand new for her. Examples of her confusion: thinks it’s the middle of the night during the day even when she’s looking at the sun outside, gets frustrated at her nurses because she thinks she’s home and they are "barging in" on her, thinks the things on TV are happening in real life, etc. However, none of the nurses/social workers/speech therapists seem too concerned about anything like Alzheimers because she is always able to answer their standard questions/tests correctly. Maybe it is caused by one of the new medications she is on but it doesn’t seem to be improving.
-She is depressed and doesn’t have much will to live. Before she got confused, she would say things like “I hope Jesus takes me home soon, I am so miserable and have no dignity left” but now she doesn’t say things like that anymore, either because she barely talks now or maybe because she thinks she is back home?
-Has sleep apnea and uses a CPAP at night. This has been an issue lately due to the aforementioned confusion which causes her to remove the cpap in the middle of the night (which has her oxygen bled into it). We monitor her o2 levels remotely from home and call the nursing home 2-3 times each night when it drops to have them go put the CPAP back on her.
So she seems to be in pretty rough shape, but at the same time her vitals are pretty steady right now and her nurses and doctors are kind of going on like usual (for example, scheduling appointments for 6 months from now when we kind of feel like she won't still be with us by then). Again, I know this is a pretty difficult question to answer, we just want to be emotionally prepared. We also have put our whole life on hold to spend nearly 24/7 with her in what we kind of believe to be the end of her life, but we will have to return to work, etc. at some point if this end of life process could last years. So we are hoping for comparable stories, opinions, etc.
Thank you so much for reading this far.
It's been a few days so I don't know if you're still checking this thread, but thought I'd weigh in and maybe add to the helpful advice already given.
I'm so sorry for this agonizing time with your beloved grandmother. I still mourn the loss of mine after decades; they are very special people in our lives.
I'm a retired Hospice RN and would say that your grandma would qualify, given the number of co-morbidities she's diagnosed with. There is some flexibility in the 6 month timeline and unless she improves, she'd continue to qualify.
Hospice would be of benefit in a few ways. You may be able to get a better assessment of her longevity from the nurses, esp if they're seasoned in the care provided. One gets a sense of a client's overall condition and at the least, you'd have RNs to talk with you about the changes they see. You may be able to delay your vigil just by having the more frequent nursing visits and reports from them. They could aid greatly in alleviating your grandmother's pain; that's always a primary goal of palliative care and that would be an emotional comfort for yourself and your mom.
One thing that most people don't know is that MDs tend to over-prognosticate by a factor of ten, meaning that one may say she has 10 months when it's truly only 1. Hospice nurses do tend to be more realistic.
I wonder about her being placed in her WC for 'a few hours a day.' With skin breakdown, that length of time should be limited to no more than 2 hours, and same with any positioning in bed. More frequent position changes are of benefit for every bodily function and may also serve to ease grandma's pain. I have to wonder why the nurses at the desk are not monitoring the O2 levels and why you're having to call them to report CPAP malfunction. I'd speak to the DON about this because it's a nursing, not family responsibility.
No one can say how long, but there are signs of changes and with having spent so very much time with your loved one, you will see these changes. Pls make sure that her wishes and that of your family are known so that no heroics are implemented. That's another area that Hospice care ensures.
I wish you solace and peace during this very difficult time.
My mother lived seven years with A-fib and CHF, so those won't necessarily kill her soon. My mom didn't have the other issues you listed, nor was she on O2, so it's hard to know how long she might last.
Contrary to what was stated above, hospice doesn't remove all medications. Yes, they keep the patient comfortable at the end, but they don't send them to the finish line by withdrawing their meds either. My mom was on all her meds until a couple of weeks before she died when it was clear they were no longer working. She was on hospice for almost eight months in total, and I made the decision to use hospice when I decided we were going to treat her ailments in her nursing home because we were done with the trauma of hospitals.
Regarding dementia - I think the standard questions are really lacking in their ability to recognize different types of cognitive decline.
I can understand her not having much if any will to live. Not to be too blunt, but her life is not much of a life at this point.
I agree with midkid re getting a hospice evaluation. Though the human body is an amazing and confusing machine, her condition does sound pretty touch and go from what I know. If I were her, I'd want to be able to leave the suffering behind and would not want it artificially extended.
Your family has been great supporting her. She's very lucky to have you all. But you're right that you will have to carry on with your lives. Grandma could live another year or two - or 2 days. There is really no way to know, until is gets obviously close and not even then sometimes. Make peace with the fact that you've already gone above and beyond what many would do. I'm sure grandma wouldn't want everyone putting their lives on hold for an undetermined amount of time.
Best of luck.
I think you're right about the testing for Dementia. They ask a few questions like date of birth and then move on, but her confusion and memory loss is more short term and situational.
You are right that she doesn't have good quality of life. It's so hard to see her in pain and depressed. It's just hard to know what to do because the only "life saving" measures/meds we are giving currently is oxygen and diuretics, both of which we have been told would cause an agonizing death if taken away. So I'm not sure what hospice could do to help her, but it is probably worth reaching out to them anyway.
Thank you for the kind words!
I suggest you get a hospice evaluation for grandma. The RNs at hospice have a very good idea of how long an elder has left to live, and it sounds like she'd be an excellent candidate NOW for hospice. Once she's on board, the RN can give you a better idea of how long s/he thinks grandma has left to live and when she enters the active dying stage, too. You'll definitely have to go back to work, too, because even as sick as she seems to be, the human spirit is very strong and can go on for a lot longer than it seems possible TO go on for. My uncle George will be 102 soon and he seems to be getting weaker by the day, falling and sleeping more and more, yet his spirit is still strong. Hospice just called yesterday saying it looked like he was approaching the end of his life, and he rallied yet again. Only God knows when his time will actually come.
In my mother's case, she was doing fine, albeit declining steadily for the last year of her life. She went to bed one day on a Tuesday, saying she was tired, and went into a semi-comatose state. Her ankles and calves had been very swollen for a few days prior, indicating her CHF was getting worse, and she was VERY short of breath, even worse than usual. Mom never woke up fully again, and she passed away one week later. Her heart gave out, is what happened, finally, after years of the afib and CHF and pulmonary hypertension taking their toll. But right up until that day she went to bed, she was schmoozing it up in the activity room with her friends at the Memory Care ALF.
Wishing you the best of luck with a sad and difficult situation with grandma. I wish her peace and no pain as she approaches the end of her life here on earth.
As I mentioned to Midkid58, we haven't contacted hospice since she hasn't been giving 6 months or less to live yet which is aparently a requirement. But maybe they are flexible on that kind of thing.
Thank you for the well wishes.
Once my mom showed increased fatigue and a real lack of interest in life..she only lived a few more weeks.
HOWEVER, no one can give you an answer, because no one really knows. Just mentally and spiritually prepare yourself and make sure you are on good terms with her. It sounds as if she really has no will left to live, and who could blame her? She has zero QOL at this point.
Mom passed with a bunch of Drs appts and tests scheduled for later this year. It doesn't mean anything. When she was ready and her body was 'done' she passed away.
You may want to look into Hospice at this point. This will minimally keep mom comfortable and out of pain. But all her 'other meds' will be discontinued. (To the best of my knowledge).
One of the greatest gifts we can give our LO's is to let them go in peace and without stress and fuss.
Good Luck to you. Take care of yourself in this time.
We have considered looking into hospice, but from what we've heard you have to have a diagnosis that indicates you will only live 6 months or less which she hasn't been given. May be worth checking into further though.
Thanks again.