For anyone who has ever had a dying friend or relative but are not the primary caregiver, there are, or should be some basic rules about visiting at all, and rules to follow during the visit.
When relatives and friends come in and take over – temporarily trying to help . . . of course the patient and family are going to try and be polite and not say anything. At first it might even seem like welcome help. But it often leaves the patient shaken and exhausted and the household and caregivers all topsy-turvey.
Acknowledging to oneself that who they are visiting is going to die – would be a good thing. During a visit, we should not pretend or talk like in a day or two the patient is going to be ‘fine’. Actually the patient will be fine, dead but fine. It is a normal ‘fine’ end of life.
Embrace it. Consider yourself fortunate that your dying friend is giving you the gift of witnessing the death experience. It could be very beneficial.
It is okay to not feel completely miserable during this time too. I wished relatives a good trip back home and the aunt took offense. “How can it be a good trip? We just saw her to say goodbye!”
I backed up a little, “Okay well then Just don’t get in a wreck.”
This is the natural end to life, it is sad and our friends and loved ones will be missed, but how much negativity and suffering there is surrounding the situation is up to us. Whether we are visiting, or it is our turn,
I was a caretaker and along with the husband of my best friend we have been working for weeks to make everything quiet and comfortable and do only what will benefit his wife, our patient. Wherever possible we will do what our patient wants and can participate in, even if it is not particularly beneficial [like having the TV on for hours].
We understand that she has in operable cancer and is in the final stages we know nothing can be done except to kept her as comfortable as possible until the end comes.
In all situations, Doctors suck.
First a doctor told our patient that if she didn’t eat, she would starve to death. That made her fearful of “starving to death”
She would ask for food, or even a sip of milk, saying “I don’t want to starve to death” – and then she would promptly spend the next half hour vomiting bile.
Okay, it is true on a very basic level that if you don’t eat, you will starve to death, but a doctor should be able to think beyond the very basic.
She is not starving to death, she is dying of cancer, and it is a normal part of the process. She does not need one more thing to worry about, or distract her from whatever important spiritual work or just plain old thinking that she needs to be doing.
Then the invasion of the first relatives.
An uncle and aunt that the patient hasn’t seen in 40 years drove across three states to visit. But they don’t visit – they move in. and they told our patient that they were coming and didn’t show up when they said they would, and didn’t call. This worried her greatly and even spawned some wild nightmares.
The patient cannot eat, cannot even taste food without nausea, and they get take out the first day. How rude was it to sit around a dying patient who can’t eat – and eat takeout that used to be the patient’s favorite?
The next day the food situation was even worse. They cooked a meal! This house was rented only a few months ago when the patient became ill and they needed more room for hospital beds and equipment. A meal had never been cooked there before, supplies weren’t available and they didn’t even know if the dishwasher worked. [we found out it didn’t, the hard way and had another mess to clean up.]
The patient can’t eat; the husband didn’t really feel like eating, but did trying to be polite. I ate some out of sight of the patient, [because it was really good!] but not out of smell of the patient, and the relations sat next to her hospital bed on the couch.
If I were the patient I would have sat and cried with all that food so close and I couldn’t eat it.
They teased her about wanting her to get up and go with them, about taking her out to eat. They had her confused and thinking she actually could do it if the two men could lift her into her wheelchair. It reminded her of things she wanted to do and increased the feelings of wanting to cling to things that she can’t do now and will never do again.
The husband didn’t want me to cook for him either, although I offered when I first got there. He didn’t want the trouble or the mess or to even go shopping for a bunch of food that he didn’t want in his house. I understood completely and really felt the same way. We hadn’t spoke of cooking again, and just fended for ourselves with a sandwich. No mess, and no familiar smells of cooking for the patient to have to endure.
As the relatives were taking out suitcases to leave, then came the invasion of the family’s friends, with FOUR children that are of no relation to the patient and don’t even belong to the friend who brought them.
That visit came just as the relatives were finally leaving on the third day and our patient was exhausted. I had just put my computer in my usual place after the relations left so I could see when our patient was awake and needed something. I had gone back in the kitchen [still where I could see our patient’s bed to wash all the dirty pots and skillets that our meal had created and the chef had left for me. Had to unload the dishwasher and do it all by hand, which I would have done anyway, since I have never used a dishwasher.
The friend and kids came in like a whirlwind and moved all my computer and reading stuff back on the kitchen counter, trying to childproof the house where no children lived. She said “I’m moving this, but the kids know they aren’t supposed to touch anything.”
First thing, not 20 seconds after she said it, one of them not only touched but picked up the husbands cell phone, opened it and pushed buttons.
I had to dry my hands of the dishwater [still cleaning up after the meal attack] and go tell the ‘dear little germ factory’ to put the cell phone down since the adult wasn’t watching them. After I said something, she only scolded the other kids for not watching the offending child.
Our patient told her friend that she hadn’t been able to eat anything – and she really missed it, her friend said ‘well aren’t THEY giving you something for your nutritional needs?’
Our patient didn’t know what to say.
Now! Please understand – SHE HAS NO NUTRITIONAL NEEDS. She is dying – no nutrition needed anymore.
During a visit to a dying person, let’s try thinking about this logically and not do or even say anything that will only make her suffer more!
As I think about it, ‘fortunately’, in this situation, even tube feeding wouldn’t keep her alive any longer. At least my friend is safe from that.
But I pray for the many patients in hospitals or nursing homes where the family is leaving their care totally up to the doctor.
I saw many patients in nursing homes, whose family and friends never visited. Those patients with every joint turned solid with arthritis seemed to suffer the most. Even a jaw bone clenched so tightly and frozen that the teeth were wearing off and cutting into exposed gums was common. They are in constant pain – always in a cold sweat – unable to move any part of the body – and their bodies are not locked in a comfortable position. IT isn’t like sleeping beauty all layed out on a soft couch waiting for a prince’s kiss.
One elderly patient, I remember the most had one leg drawn up to her chest and the other out straight, toes pulled up, one hand frozen in time – in an open position, the other a clenched fist, the fingernails still growing into the palm and forced to endure more excruciating pain as the nurses tried to force her hand open just enough to trim her nails.
There were only two position where she could be placed with many pillows, and still have her face exposed to air so as not to suffocate, and she had huge cavernous bedsores that she couldn’t be positioned off of. She couldn’t speak except to whimper deep in her throat when moved or touched, or when her toes, knees or elbows got banged into the bedrails. She couldn’t move any part of her body even a little except her eyes which were always wet with tears. And she was only one – just in the one nursing center, there were many being forced to endure such suffering.
I digress, but mention it – because at the time I was helping to care for them, this old person and others in similar shape had been kept alive for 8 – 16 years in this condition with intravenous fluids and being fed through a tube through their nose. HOW MUCH WORSE COULD HELL BE?
At this point in my friend’s life, she doesn’t need food anymore. I don’t know about anyone else, but I personally pray for stomach cancer and hospice care. The hospice organization and all of its staff have been wonderful in this situation.
When one vital part of a person’s body shuts down, why do we insist on keeping the rest of the body alive and the person in hell instead of letting them follow the natural course of the death process?
My mother’s heart was beyond repair, two heart doctors said so, but I still had to fight with a kidney doctor and hospital administration for 2 months to take her off of the dialysis machine and respirator.
Why did they want to keep her alive as long as possible? So they could keep billing insurance – that’s why.
Hospital staff went against my mother’s living will and resuscitated her, by ‘mistake’ 3 times that I know of. When I complained, an administrator said if they were going to error, they would rather error on the side of ‘life’.
What about the quality of life?
When I demanded to take advantage of my being my mother’s power of attorney, staff insisted my mother was of sound mind. I took an administrator to her room. And my mom thought the dialysis machine was a BBQ and we would be having pork ribs, and she also thought there were puppies on her bed.
They finally agreed to order hospice care after I had been relentlessly requesting it for 2 months. My mother suffered for two months more than necessary, because no one followed the ‘rules’ or the orders she paid a lawyer to put in place before she got sick.
The kidney doctor stood in the hallway and yelled at me, “She can go to hospice, but they will take all the rest of her money!”
I still don’t know what he was thinking. Hospice would take less than he and the hospital did and Mom had no money anyway. Her best friend paid for her cremation, because I had no money either.
No one is a bad guy in these situations, except the heath care system, doctors, hospitals and insurance companies.
But there are no bad relatives or friends who want to visit. And I don’t mean to give anyone that idea. A visit is always better than putting someone in a rest home and leaving it up to doctors who want more insurance money. I am just saying to try and see the situation clearly and don’t say or do things; even trying to help, that the patient may find upsetting or will make the caregivers more work.
I dread when anyone comes over except the hospice nurses. You never know what fool thing someone else is going to say or do in these situations.
I need to go clean up the trash the dear children left and the mess the adults left still before our patient wakes up again if possible.
I hope this is of benefit to someone someday.