How to deal with never-ending ups and downs with Grandma?

The ups and downs happened with my grandmother too. It would seem to be the end, but when my sister would come from across the country to say goodbye to her, Grandma would bounce back into almost full recovery. I think somewhere in her she thought we needed her and kept reviving herself for us. My sister had come so often that when Grandma finally did die in her sleep one morning, my sister didn't even think she should be at the funeral, perhaps afraid Grandma would bounce out of the casket.

Don't worry. When you do really lose your grandmother, and even more as time passes and you remember earlier years more clearly than you do this horrible phase in her life, you will miss her just as much as the tenderest soul could do.

I sympathise with your feelings about the way your uncle and the caregiver talk to you about this rollercoaster. I remember my aunt telling me that I mustn't think Uncle Henry's dying was so terrible, he was very old and tired and missed my auntie; and all I could think (didn't say!) was "er, yes, obviously?" But, she and I'm sure your family and friends too are partly comforting themselves and partly aiming to prepare you - whether you need them to or not.

Knowing whether you really do need to rush to her bedside this time is simply impossible. No experienced hospice nurse, no palliative care specialist, will ever agree to give the family that kind of prediction. So. So as not to have your nerves racked constantly, the thing to do is plan for yourself a schedule of visits, and stick to it unless something *really* exceptional happens.

When you visit your grandmother, check off that you have said what you need to say and spent time with her that you want to spend. If that happens to be just when she passes, or a few days before, or three weeks before, will not matter. You don't have to spell it out to your uncle, but it is not mandatory for you to be there when your grandmother passes away. You can let what happens, happen.

I understand how you feel. For the past 10+ years my father thinks he is at death's door at least once a week. He runs to the ER almost as often. I am total desensitized to the entire process. I am sure one of these days he will be right but I can't jump for the 1465 trial runs for that event.

I am suffering this horrible roller coaster now. My mother is 94 and has been in nursing home for two years. She has severe dementia, speaks only an occasional word, doesn't recognize family members and is bed-ridden (never walked after hip fracture 2 years ago).

Suddenly three weeks ago my sister texted that Mom was being taken to Emergency Room. She was in a coma and unresponsive. The nursing home staff THEN told my sister Mom hadn't eaten for several days. ER discovered she had a UTI which had progressed to septic shock (cause of coma). She had also suffered another myocardial infarction (had one on New Year's Day). She had acute kidney failure due to the shock. She was in ICU for 5 days and finally started opening her eyes but looked like "nobody home." Her doctor told my sister that Mom would not survive. Sent her back to nursing home for "comfort care" only. Sepsis-associated encephalopathy had killed the brain cells she had left.

My sister is her healthcare proxy and makes all decisions about her care. At first, she was in denial and sent glowing reports about Mom "doing great", "eating" and "smiling". She sent me photos on cellphone that contradicted everything my sister said. Mom looked gravely ill. She was unable to turn over in bed. Her face was frozen in a contorted grimace. Four days later my sister called crying uncontrollably. She found Mom with a panicked look on face and my sister discovered Mom had a bunch of food pocketed in her cheek and was choking. The staff then told my sister that Mom was not able to swallow since back from hospital. They were trying to feed her "baby food" with spoon but Mom would push food into cheek like a squirrel because not able to swallow. We (my sisters and I) decided that feeding Mom was making her choke and very uncomfortable so asked nursing home to quit forcing her to eat. She still had an IV from hospital because not able to drink water. They wanted to start tube feeding but Advanced Directive was clear about no tube feeding. We asked them to remove IV because artificial hydration was also not to be used. My sister had to sign papers to get IV removed and forbid tube feeding. Nursing home continued to force spoon feeding stating they "were not allowed to deny food." Also, forcing her to swallow blood pressure pills. Why on earth does a dying person need to take pills for hypertension?

It has been three weeks now and Mom still lingers. She sleeps most of the time. Doesn't appear to be in distress. She is alert one day, eyes open and responds to soft touch. Then deep asleep the next. She has been without meaningful food 18 days and without IV five days. She is down to 70 pounds but still lingers. Then yesterday my sister joyfully texted that Mom was eating ice cream. My heart sank. They are just prolonging her life which is of no quality whatsoever. Why would they feed her at all? Now we restart the vigil.

I live 1200 miles away and not able to go to her beside for indefinite period of time. I cannot trust the reports I get from sister as they are so inconceivable. She reported one day that Mom recognized her and called her by name (not for two years). That she took in a photo album and Mom was enjoying viewing it with her.

Mom's personal MD was shocked to learn Mom was still alive LAST WEEK. How long can this continue?

I am thinking I will make a selfie video to tell Mom I love her but can't stop crying. This is a horrific experience. My sister vasilates from optimism that Mom is better to "another bad day." Mom will go when she is ready. I have no other explanation. I sent her a small CD boombox with 2 soothing music CDs. Music is suppoed to be comforting to the dying. But my sister doesn't take it to Mom. Says it would interfere with roommate's TV watching. Growing tension among us. The stress is overwhelming us all. This is not the dignified death we imagined for Mom.

My Mom has been in and out of the hospital for the past 40 years and I feel so bad but I have started to become numb about it. After her husband passed 7 years ago each hospital visit turned into her getting worse and worse in her daily life. She is now in hospice care and can go up and down in one day. 

I flew home to take care of her and she expects me to stay there, leave my husband and take care of her indefinitely. I finally left after a month of being away from my husband and she makes me feel guilty for leaving her at her time of need.  

I told her I have watched you like this for 40 years. You may last a week or another 15 years. I am in a hard place Mom, I can't just abandon my marriage but I want to help you too. 

She does need 24 hour care now since she can barely do anything for herself. I feel so bad for not having compassion on this woman who was my best friend for many years. Yet all she does is bosses me around, get this, do that and oh how I am doing it all wrong and gets angry with me for missing my husband. She expects me back in a week.

It emotional drainage that I think comes upon us. Never having a sense a freedom, always expecting to drop everything to attend to their needs. Feeling the pressure of being a bad person because YOU are not there. The guilt is real and then more guilt for not caring like you know you should because they just wear you out.

I'm in my early 40s and dealing with the same exact issue. My grandmother is 91, has a severely enlarged heart, a host of other health issues related to being elderly and sedentary, but she continues hanging on. She survived pneumonia which is an incredible feat for a person her age, and has been in and out of the hospital almost monthly. It's extremely nerve wracking to be told every other month "this is it" and getting stern calls from my father about immediately jumping on a plane to go see her. Don't get me wrong, I love and care for her (just as I'm sure you do your Grandma) but I have a job and responsibilities plus the expense of all these last-minute emergency trips is starting to really add up!

My best advice is to simply offer your heartfelt consolation and send her your love but you simply can't run to see her every time they say her time has come. I just had to have the same conversation last night. My grandmother called everyone and said her goodbyes. Turns out she's just got a UTI and is dehydrated...

Best of luck to you!

P.S. Personally, I feel it's morbid and in bad taste to just go and sit around waiting for the person to pass. Sure, if you're the person's primary caregiver, it's not something you can control. As far as everyone else in the family, even if they have the financial means and ability to hang around, I just wouldn't feel comfortable doing so, myself.

I think we do become desensitized in a sense in order to survive. It happens. We care deep down but it's hard and we can't invest all of our energy into their lives.

I am so sorry you are going through this but to say I 100% understand and relate is an understatement. I read all the replies and it’s like you are all living my life and YOU GET IT!!!

My my mother is 84 and has been ‘dying’ for 5 years. She never been in great health and has never taken great care of herself and when she went into heart failure and had quadruple bypass 5 years ago I was certain this ‘was it’. I spent 2 months visiting her in the hospital almost every day, 4 months visiting her in rehab 3-5 days a week because I could not imagine her recovering and I wanted to have that time with her at ‘the end’.

well she recovered, moved into assisted living and she still chugging along 5 years later with end stage copd and CHF on O2 24/7 and so may trips to the hospital I lost track. Pulmonologist says there is literally nothing else he can give her - she is on every steroid and breathing treatment available (monthly close before insurance is over $2000 - but her phenomenal insurance pays all!) but she gets a respirating infection, they pump her full of more meds and she bounces back. Not to the level as before but the decline is painfully slow.

i love my mother and will be devastated when she goes but she’s now cranky and demanding and unable to have a true conversation with as she’s living 40 years in the past most days so I kind of feel like I’ve already ‘lost’ my mom.

all this to say - I get it. I have a husband, 3 children, a stressful corporate job and my own life and I’m increasing numb to the health scares and literally wait to get ‘the call’.

Hazel, that reply about having to pass on your uncle's message so that your father's altered his travel plans?

No, you don't have to pass on the message, not at all; and you certainly don't have to endorse the message. If uncle wants to tell your father that this is definitely it, uncle can do the telling. And you can reserve judgement.

Boy! - just realised how silly I'm going to look if this actually IS "it"! Whatever happens, I hope that your grandmother is comfortable and has peace of mind.

I am in the same situation. My 89 yo mother was diagnosed with stage 3b lung cancer and the tumor was pushing on her bronchial tubes. She went into the hospital the week she was supposed to start her palliative radiation treatments. We thought that was it. After the radiation was over, she got better. She can do her own laundry and fix her own food now. She is now off of oxygen, but still on hospice.

She has started having a lot of afib incidents in the last 2 weeks. Multiple daily events. She has much better lung capacity as well. She is demanding, OCD and passive aggressive. We (me, brother and sister) are exhausted. I am her primary caregiver. Some days are great others, I think it is towards the end. I am conflicted. She will probably still be around in two years. LOL

Tomorrow is her CT scan to see how the radiation did and if it has spread.