Hello, I posted back in January and a lot has happened since. My mom is on hospice for 20 months now. CHF, COPD, and multiple other issues. 20 months ago, they told us at the hospital she had 4-8 weeks to live and suggested hospice. So that is what we did.
Here is what has recently happened:
2/27/23 I get called saying her limbs are already cold, she is not responsive when trying to wake her, etc. etc. They told me she has begun actively transitioning. 24 hours later? Wide awake asking for her favorite foods having no idea what they were talking about.
3/11/23 Starts seeing things that are not there and thinking she has gone places she has not. Two days later, realizes she was mistaken and thought it was weird. Keeps living like normal and "improving" from super low BP.
4/7/23 All week was acting weird. Seeing and hearing incorrect things, mean, nasty, making accusations (reminded me of when we were young as she was untreated bipolar/borderline and was very mean growing up.) Then Saturday morning 4/8/23 could not be woken up, congestions that was audible and BP was the scary lowest/ ICU level. They called me and said (one week ago today!!) she would be gone within 24 hours based on her vitals and condition. To come say goodbye.
Here we are 4/15/23. She is wide awake, eating, laughing, talking, asking to go outside which we did. I have been there every single day for hours for the last week straight. She is totally back to normal again.
Mind you, we have had what they call "episodes" of her going totally out/unable to wake up, audible congestion, high heart rate, etc. This was in 9/2021, 4/2022 and 12/2022 and back then said, "we cannot really tell which way this is going." Never until this year did, they tell me twice she was actively dying and to come say goodbye.
Has anyone else experienced these seemingly regular rallies?! It is exhausting. Emotionally and just every way I am so tired. I have no more I can say or do that I have not already with her. I am finally ready to let her go. I can finally see how bad her quality of life is. She cannot use her legs at all, one arm works, she is in bed all the time. Yet, she is not ready to go. I have so much respect for our Souls purpose. So, while part of me understands when it is not your time it is not, and when it is it is. It is just all this back and forth that I am handling poorly. I do not *want* my mom to die. I want her to be healthy and pull a wild miracle out of the air, start walking with help from PT, go to assisted living and live her life. We all know that is not happening. She gets worse and worse after each of these "episodes”, and I am losing my mind. I sure hope someone else gets this because I feel crazy... I barely work (I am self-employed), talk to friends, etc. I just shut down and cannot seem to DO much when this happens. I have a therapist. I have a support group I just went to last week that meets Mondays. I have people. Just nothing feels right. I am hesitant to post but chose to anyway. People can be so wonderful, and others just see the surface and judge. I will take my chances and hope someone else reading this has been there. Thanks for reading.
You want it to be over but you don't because you know the finality when she finally does die.
Yet the anticipatioary grief is far worse because you don't get to fully grieve when she rallies but you also may have some guilt of feeling relief that it's finally happening and then it doesn't and your back in this seemingly endless loop.
You've said your goodbyes enough for three or four lifetimes already.
Now its time for you to start living your life while mom transitions from life to death in her bodies own time. Which could be tomorrow or weeks or even months from now.
And it's perfectly OK and normal for you to want mom to die and finally be at peace.
Sounds like mom has some "unfinished business"
Have you talked to her at times when she is "back to normal"? It would be interesting to see what she says.
I can understand how this can be upsetting. And yeah, you don't "want" your mom to die but I am sure that the stress of this is not doing you any good. Particularly given what you mentioned about what was probably a rough childhood.
Support Groups are great.
Keep talking to your therapist.
((hugs)) hang in there.
We didn't have quite such wild ups and downs as you've had, but it was indeed a rollercoaster of health crises for her and emotions for us.
You've said your goodbyes, so I'd say to feel free not to jump when the next crisis call comes if you don't feel up to it. It won't matter whether to rush to her bedside yet again. Do what's best for you now.
My emotions have been put through the wringer. I too wish she could be back to being with her walker and I pick her up from AL. I don't welcome her death but the suffering is so difficult. She was dropped at her previous facility and both femurs were broken. Then she developed a serious bedsore which she still has.
Her hospice nurse does feel this is the end since she is no longer eating. I wish you peace. I know how terribly difficult this all is.
My Dad mid 90s had long wanted to go. He was rational, and he had had a lovely life, and was well satisfied-- but like many patients I had cared for he was simply exhausted, and longed for what he called "the long nap". During end of his life he became enamored of sleep; I find myself at 80 understanding that.
My Mom was a fighter all her life and she was determined to keep on, but suffering for it. She had a stack of library books she still wished to finish, and my strongest memory was "What they Carried" (about Viet Nam) at the top of the stack. She was in and out of infection upon infection, bladder, lungs, and bad CHF. I was so relieved for her when she was able to go. But she did some real rallies such as you are seeing now.
For my brother it was a diagnosis of probable early Lewy's he didn't want to face down the reality of decline with. And he was "saved from it" by sepsis from a tiny sore on his shin.
So it does come eventually to waiting for release if we are "lucky" enough to live long. Perhaps that is the ONLY mercy in seeing the suffering. Because THEY are ready, often. And we are ready to let them go.
I am sorry you stand witness to suffering, but we cling to life, and our hearts, our lungs, our kidneys TRY hard to preserve it any way they can.
As a nurse I know our patients teach us what predictions are. Pretty much nonsense. Or an "educated guess". And it's why all medical personnel hate the question "How long does she have". Because they haven't a clue of the answer and are tired of being wrong!
See if you can detach and distance a bit. I don't mean for you to love your mother less, but to love yourself more. You need care too. I doubt anything you are doing is helping or hurting your mother in any way but it is affecting you. So choose wisely - to look after yourself. (((((hugs))))) I know this is very hard.
My road with my mom has been interesting and some close to me do not understand why I would be here for her after all she did to us growing up. Including finally running away with a man half her age and finally calling (2 weeks later) to say she had enough of us. I had just turned 16 and it was awful. 3 years later the young man dumped her - complete with getting someone else pregnant and marrying her. Thus her suicide attempts and breakdown that she never came back from happened. At 19 I became the mom and her the daughter and it has been that way now for 25 years. I know in my heart she deserves a person. I am her "person" and I know she did the best she could with her severe mental health issues and extreme abuse including molestation from her own father and she did not get help for that. The my dad was abusive to her and us physically. The gal had such a tough life. So I am thankful I can *see* her. Her true Spirit and heart. Despite her awful and I mean awful behavior to us kids growing up and even now. I See her and I always have. I am hurting now though from trying to fix, wait, etc. and will do my best moving forward to take care of myself.
I will not jump at the next call, but I know I will go. My fear is all these inadvertent "crying wolf" medical calls one day I may get so jaded I do not go and it will be the time she actually passes. I am not willing to risk that, but the emotional turmoil, frantic feelings, isolation, etc. I have been doing need to go.
Thank you again for listening, for your comments, thoughts, and well wishes. It is deeply appreciated.
Above is a link to an Agingcare article on the subject of rallying at end of life.
Its a difficult situation you're in, for certain. I was convinced my mother would live to be 100 but she wound up passing at 95 only 2 months after hospice came on board. It was unexpected, too. She just felt tired and got into bed one morning, became semi comatose, and passed peacefully one week later. I felt relief more than any other emotion bc her dementia was advanced and wreaking havoc with her quality of life as well as mine.
Best of luck to you
Losing my mom left a hole in my heart and a level of loss that only compares to losing a child. While you cannot change current events, you can and must learn how to cope and carry on.
https://grief.com/the-five-stages-of-grief/
Different scenario of course, but my mom has these quick seizures where she blinks in and out…to the point of being non responsive, and then…she’s back and chatting again! This has happened no less than a dozen times over the past two years. I don’t count them any more.
I’m praying that one of these seizures takes her out, then feel very sad at the thought of her passing, and guilt for wishing this long road reached its destination. Anti seizure meds are keeping her less seized up- but for what ? To pass in a worse way, declining to the point of aspiration pneumonia? This is utter madness. I want peace for ALL of us.
For me I did pretty okay until I got feverishly covid and during it she had another seizure, this time the paramedics calling me yelling about her blood pressure being 60-something over 20-something. Then she rallied right back! At that point my stress went Ka-bang.
I truly feel insane over this. All the self care in the world hasn’t cleared my head yet. So I really really thank you for posting your story! It’s a huge help that someone else out there gets it’.
Big hug to you!!!!
She wants assurance it's ok to let mom go
Let me tell you when you watch a mom or anyone w no quality of life it's a blessing to have them go. My mom still thinks I'm gonna go w her i think, rather selfish, or she's too far gone to think of her 67 yr old child! Sometimes i think I'll go first, sometimes i wish i would rather than deal w the guilt put upon me.
This may be boring to read.
My experience with my mother (now 96 years old living with me for 5+ years) started 3 years ago when she broke her hip in January 2020.
While she/we (I stayed there with her for 8 days) were still in the hospital she said to me "I'm dying", which immediately threw me into a state of grief and crying. This took place as I was leaving to run home and take a shower.
That only lasted until I returned from home a couple hours later to find her once again enjoying the attention of the hospital staff.
Then in December 2021 we both got Covid and I was told that she was going to die within 48 hours. So again I thought that it was time, and my two children came over (we did not go to the hospital) in tears to tell her they love her and say goodbye.
Grief, sadness, sickness was the flavor of the week.
Amazingly, she recovered and once again she was able to return to her baseline. After that, I had her assessed for physical therapy, home health and palliative care.
Then last month, she developed an upper respiratory infection (brought in by a sitter who said it was allergies) and she rapidly plummeted into labored breathing and low O2 saturation within 24 hours. A PCP gave her an antibiotic. At that point, I was able to have her very quickly transitioned to hospice care which provided Oxygen, nebulizer treatments. (She did not go the hospital.)
Again I drank a steaming cup of grief and sadness.
And. Once again, she has recovered beautifully and is back to her baseline.
I'll now be keeping her under Hospice care as long as she qualifies.
The emotional whiplash is takes a toll, doesn't it?
(((Hugs))) to everyone here who is standing strong while being buffeted by the mental, emotional and physical stress of caregiving.
What I would do in your situation is tell the healthcare staff that all the back and forth is damaging your health and you are concerned about the negative effects. And do not call you again to come say goodbye. Each time you see her tell her goodbye in your heart. She’s just as likely to pass when they aren’t looking anyway.
Decide you don’t care what they think. Try to work on accepting that her time will come when it comes and nobody here controls it. Take care of yourself.
What I would recommend is that you get a close family member or friend to assist whenever possible to visit your mom while you take a mini break & don't feel guilty! I have found for me, if I go more than 2 weeks without a break, I feel tired, down, & sometimes a bit disgusted.
When you have these mini breaks, whether it is overnight, a few hours a day, concentrate on what you like doing for yourself. Go see a movie, concert, shopping, visit a antique shop, go dancing, etc. Whatever you like doing!
This has helped me so much! It makes me feel revitalized and renewed. Of course prayer and meditation and listening to inspirational music helps too! Try this advice and you will feel so much better!
Finally, I would not allow myself to believe this may be her final day, despite the prognosis the health care staff & doctors are giving you. She's already made up in her mind to fight back & stay alive, so don't allow this to keep you emotionally drained.
Laugh a lot, take of yourself & change your perspective! Take care!
Have you said everything you needed to say to her?
Then I’d leave the moment of death in God’s hands, or nature’s if you will…a precise moment not within the control of family. Our terminally ill cousin, for example, passed in her sleep while family were sleeping in other rooms so in the end, at her moment, there was no hand holding or final final goodbyes.
Meanwhile, I've been sick for several months -- direct relation to exhaustion, sadness, fear of the financial future, trying to take care of everything. I'm 20 years younger but I feel pretty sure that I will die before he does (he's 93!) AND that my terrible depression is turning my life into an energyless kind of hell. I have to work hard just to get up and do a little bit of anything.
I also don't want him to die -- I want him to continue living without dementia, which will never happen. But he has a constitution of iron. He seems to get over things that should kill him. We don't have hospice so my situation is not quite like yours; he hasn't been given a diagnosis of impending death yet. But he too has been having "episodes" when it seemed he was heading out -- then he recovers and seems to love being alive.
Anyway, this is not exactly what you are experiencing, but I think I can say my feelings, shutting down, etc. are very much like yours. So come on over and we'll sit together and stare wordlessly into space.
3 years ago, my then-86 year old father had an exacerbation of COPD and CHF, simultaneously while being diagnosed for the first time. In other words, he was declining during previous month, but refused to go to hospital. Finally, we are in the ER and I get the question, "intubate him or he will die", what do you want to do? in the pressure of the moment, we made decision to intubate.
While in ICU, we were repeatedly told that his organism is just not functioning as it should and he will most likely not make it once removed from tube. We had Hospice come and talk to me. Honestly, I felt really lost and a bit pressured to sign him up for hospice.
In brief, we had the chord removed and went the rehab route. He has lived , pretty much problem free for 3 more years with the help of cpap mask (initially), oxygen (initially), different regimens of pills. It is only now, 4 years later that the signs are beginning to show themselves again and we will be transitioning to hospice.
I suppose, you can't really know how an individual's organism will react. As some of the comments are saying, it's the uncertainly of what's next and what will the day bring that annoys the most.
At this point, father has lost his voice because he has lung cancer that's impeding on his right vocal chord. So, all bets are off and it's a matter of time...
How much time? the doc said ,in these cases, a matter of months. But, we've been there before at his veritable death bed in ICU. So, we just keep plucking along.
Hang in there.
When a person has a terminal illness with no treatment options left what would be the point in that person suffering for sometimes months with indescrible pain before god says OK it's now Tuesday April 25th at 8:02 am so they can now die, but not a second before?
The reality is death for many is a long and drawn out process. Its messed up and no supernatural being is at the helm picking your death date. If they were then one can assume they also chose the way you were going to die too.
Sorry i know you mean well with the whole god decides when we die thing but it drives me crazy and I had to vent.
My mom said that she could never let go of his hand because he would have run away from her and run in front of a car without giving it a second thought.
He survived drug overdoses quite a few times.
He had been in hospice facilities and discharged.
Sometimes, I still can’t believe that his lifestyle finally caught up to him because he was a cat with nine lives.
I firmly believe that when our number is up, we will go. When it isn’t, we aren’t going anywhere no matter what the circumstances are!
not a person, but we went through what you are going through with a cat with liver numbers through the roof. The vet gave us a week. She lasted 2 1/2 years to the disbelief of the vet. We had days I thought were her last to only have her normal the next day.