When I was 8 during the last few months of my mom’s life, she is usually bed ridden and sickly. She used to write in a diary and apologize for being weak and for being a burden to the family. She had no will to live and attempted suicide 3 times.
Last year, during the last few months of my dad’s life, he is also bed ridden and sickly. The difference is, he pretended that he is strong and claims that “he will heal gracefully and make amends”. He believed that he will be healed and stay strong while delegating all his possessions to us. Abit ironic. Til the day he died, he was strong and never once apologized for being weak.
It took me a year for me to understand what the fuck was going on. I was caged in pain and I punished myself again and again. I finally believed that I am weak (I used to think I m the master of the universe :p) and be miserable. It wasn’t a state that I could bounce back up. After all, my dad couldn’t bounce back up from my mom’s death til the day he died. I thought that it is natural for me to be this way.
I realized that all the actions he did is to show me that I do not have to be weak. Despite making mistakes and doing wrong to others, we do not have to sink in despair. We can be strong with grace and face whatever there is to come with courage. I guess what I was lacking until then was courage. Thru his actions, I found courage to move on and to stop inflicting pain on myself.
Few days later, I broke my ankle. Both bones were broken and I was in immeasurable pain. I will take 6 weeks to heal and I was comforted that KY was with me all the way. After my surgery and a few days into the recovery period, I felt what my parents both felt during the last days of their lives and I figured that, I might as well learn from this experience.
This is a careful observation during the darkest days of my recovery period and also from my studies during the last days of my dad’s life. It is not written to offend anyone for their actions or lack of actions as I am also just beginning to understand this whole process. I hope that this article will help anyone who needs to take care of their loved ones who is bed ridden or sick and wants to give the most optimum care for their loved ones.
#1 Why do bed ridden people still want to get up and walk?
You may have experienced this before, where a sick person would just get up and walk eventhough this very action may endanger their current health or even be fatal. Then you will see their loved ones scolding them, demanding a reason why they walk when they are in pain or sick.
Sick people walk and get up eventhough it is painful just to show that they are not helpless. They do not want to be a burden and depend on people for all their little actions like sitting up or going to the bathroom, that’s why people remodel their houses and adapt them specifically for these sort of people, they make the house more spacious and install stands so these people can move by themselves and do other activities like going to the bathroom so these are also redesigned for this with more space, well designed and with Marble Top Vanity Units so is comfortable for anyone that may need to use it. They get up because all they see is ceilings and more ceilings everyday, get this right.. sick people lie in bed in a certain position. The position is the most comfortable for them, inflicting the less pain. To be confined to this position for hours, if not days and weeks is enough to induce insanity to anyone. We get up because we want to function just like we did before we got sick.
To deal with this, I feel that the best is to support them to wherever that they want to go. Even if it is down the stairs. Humans have a need to travel and move and some people like to travel light, that’s why projects as this Kickstarter backpack really help them take everything they need with them, taking care of this will ensure that their mental health stays positive.
#2 Read between the lines
Often, bed ridden patients would tell their loved ones to do their thing and that they will be fine alone. As healthy beings, we are not used to changing the course of our close ones’ lives just because of our health’s sake. We still want you to go to work and meet your friends but in the same way, we are also not prepared to deal with situations when we are alone.
They might even joke and put on a straight and happy face to prove that they are ok. Every human’s pain is his own, it is not something that anyone else can feel or share. Pain can be hidden or masked. The actions that may trigger this behaviour is when you tell the patient that “you need to go to the supermarket first, need to see to your children first”. To prevent ourselves from stopping you from your regular lifestyle, we will put on a brave front because we are not entirely selfish.
I believe that the best way to deal with this is to directly tell the patient that “you will be back soon in approx. 13 minutes”. This does not include any other factors of your life that the patient may feel that is more important then their well being. It doesn’t matter how good you say this to your loved one, they will eventually figure out that you need to do something else, it’s inevitable. This is one of the main reasons why family members end up deciding to look for a home care facility to prevent the patient from feeling such loneliness which usually triggers depression.
#3 Stress inducing agents
The environment surrounding your loved one that you are taking care of has to be scrutinized. All stress inducing agents has to be removed temporarily. A simple example, loud and aggressive pets that love to jump on their owners have to be confined. Extreme stimulation of the five senses have to be avoided too, like loud noises, spicy food at unnatural temperatures, sharp objects, overly bright lights or flickering lights and any strong smelling objects. The patient needs to rest and the environment needs to allow him to have this chance to do so.
The difficult part in this process is that usually, most stress inducing agents are people. There are certain people that can agitate or make your patient feel depressed or angry. The key is to minimize stress on the sick person’s mental health. If you can’t do anything about this, then you must be more aware and protect the patient from people like these. Sometimes, things meant to be a joke can be harsh on the patient.
If you are taking care of your loved one, chances are you already know all the stress inducing agents in your patient’s surroundings and it is best if you can minimize them.
When you are sick, there are certain actions that you will not be able to do. Simple actions like sneezing or coughing will cause you pain. Luxurious actions like digging your nose and cleaning your ears will not be as easy as before. Acts that we deem disgusting are actually necessary for our body to function. And if you are used to plucking your eyebrows, waxing your hair and certain cleanliness acts, you will not be able to do all of those as well.
When you are bed ridden, you have to put up with sleeping on food crumbs, hair, skin flakes and dirt on your bed. If you are lucky, maybe someone will wipe and clean your body. Maybe even clean the bed but thats not going to happen often due to the fact that you may take up to an hour to clean up cuz of pain and immobility.
If you are taking care of your loved one, there is a big chance that you will know the cleanliness habits of the patient and you can make a cleaning regime that suits the patient. If you overclean your patient, it will be uncomfortable and tiring for your patient. So just keep things moderate and comfortable.
#5 Why do sick people keep resting after moving for a bit?
Human body are very efficient in the way it is built, by god or evolution. Once any organ or limbs malfunction or shut down, the rest of the body works harder when it comes to any movement. Let’s not forget that the body is also working very hard to repair all the injuries and fight off any viruses in the body. Muscles that are seldom used are now strained and stressed when it comes to moving.
Hence, just walking a few steps to the living room or to the toilet can be extremely tiring, if not painful for the person. There may be times that the patient will just stand still and hold on to something just to chill for a bit. You should not rush the patient when it comes to times like this. Patience is the key for situations like these.
#6 Averaging misery
The relationship between the patient and the loved one that is taking care of the patient is a unique one. If you are taking care of your loved one, it is impossible for you to be patient and gentle all the time. People make mistakes and you have your life too. You may not be having a great mood all the time. However, sacrificing 30% of your time, health and energy to take care of your loved ones will ensure that his misery will lessen by at least 10%.
However, you must always be aware that the patient knows of all the trouble you are going thru and the sacrifices that you make. Often not, the patient loves you more than you know of and he also knows that the sickness or injury is his fault but he cannot make any amends at the moment. All he can do is just let his body heal as quickly as possible.
Hence, the easiest method would be to increase the patient’s social activities by allowing guests and visitors to collectively give support to the patient. However, most patients take a long time to heal and visitors flow will cease after a week or two. At this time, the patient will be very vulnerable and it is a good thing to introduce new people to the patient from time to time.
#7 Jokes are not funny
Sometimes when things happen, we are in denial and try to laugh it away. We may assume that another’s pain is not there and the injury or sickness is not that serious. We may even joke about it and not take them seriously. It is not funny.
Never assume that the patient is faking the pain. In fact you should be thinking if the patient is faking that it is NOT painful. Saying hurtful things and brushing their thoughts aside are cruel. Of course, if you try to be funny and take their crutches away from them, it is not a laughing matter. In fact, putting things that they need out of their reach just a little is the worst. Sick people cannot fend for themselves and if you leave the floor wet and be inconsiderate about their comfort, it can cause fatal accidents.
Many patients pretend that they are in less pain so as not to worry the people around them but certain folks take this for granted and assume that they can function just like normal.
#8 Drugs, cigarettes, Sex and Alcohol
If the patient is an active user of any of the four above then the healing process is slower. The four of them are anti-depressants which make the patient dependant on them as time goes. When they are bed ridden, the body goes thru a withdrawal period from the drugs, alcohol, Rick and Morty pipes cigarettes and sex that they had been having. Withdrawal symptoms add on to the current symptoms of the disease, sickness or injuries and make the patient more miserable.
For patients who are active in sex or physical touch, they will be restless and longing for physical reassurance. They are after all, used to hold or hug someone in sleep every night. It’s not like I am suggesting any kinky stuff but a bit of spooning wouldn’t hurt. 🙂 They can really put the patient at ease. I remember my dad used to ask if I would hold his hand or hold him to sleep when he was bed ridden. Don’t take this lightly, everybody’s need is different. Certain patients need to be reassured verbally where else some are just fine with company.
#9 Hallucinations and Memory Loss
Medicines that have a side effect of creating hallucinations to the patient can be greatly disturbing to the people around him. The patient may not know what is happening and feel relieved of their pain but immediate family around them will be alarmed by what the patient is saying. What they say can make no sense and even be of paranormal stuff, they may speak of the past and sound like it is happening in the present. This is the price they have to pay for their pain to be relieved. In more aggravating cases, however it can also mean that the patient’s brain is shutting down.
Medicines that causes this are meant to deal with great pain and this usually does not bode well for the patient. Making serious conversations with the patient at this point is useless as the patient will not be able to process the information. At this moment in time, the people taking care of the patient can opt to stop the medication for a short moment to enable conversations to occur and goodbyes to be said.
You also have to take note that in this period of time, the patient is not himself and you are not to take what he say seriously, no matter how depressing or angry they may seem as the drugs had them in control.
#10 Making the patient happy each day
There is a very simple trick to make patients happy. I still remember how happy I was when KY brought me my Rubik’s Cube when I was bed ridden. Having my favourite toy comforts me and lets me know that I am near to home. This includes toys, gadgets, books and knick knacks that the patient used to play with when they are healthy.
Usually, at this point diet is of importance but there may be requests for favourite foods. You have to note that by being medicated, all food tastes differently and the patient’s favourite food may taste totally horrid. However, a bite will comfort the patient a lot.
The patient may also have certain habits like braiding their hair or grooming their pet. Giving them the chance to do so will make them happy as well. New gifts like clothes and presents are good only if they can be used immediately. If the patient were given a gift that they cannot use in their current state, they may feel like that are not healthy enough to do certain things.
There is really no incentive in treating patients good, especially if the bed ridden duration ends in a coffin. Harsh to say, but it really all depends on how much you love the patient. This can give you courage in making him comfortable and happy.
#11 Signs of the end
Last of all, I will share all the signs of death when it approaches anyone. Human die from sickness, injury and old age. But in the end, the signs of organs shutting down are the same. This is not meant to be depressing but to be helpful. You may skip this section if you are not ready for it.
Patient in discomfort can’t perform tasks on their own and cannot be comfortable in certain positions. They may have difficulty holding their temper and controlling their emotions due to their new found knowledge of their sickness, injury and health.
As they approach death, they sleep more and seem more tired as their bodies try their best to repair the injuries and fend off viruses. They also eat lesser and lesser due to the medication causing their taste buds to change and their appetite to decrease. Ensuring that they have food that they love to eat is a better chance than making them go on a healthy diet which is strange and new to them.
Wounds and infections refuse to heal. The immune system is already weak from fighting the disease and could not deal with minor wounds and infections which causes them to aggravate. Thus, it is important that any dangerous objects be kept away from the patient.
Certain parts of the body swell up and body colour tone changes. This can mark the shutting down of an organ within the patient’s body. Once this happen, they patient will sleep more and more. They will also have apnea or difficulty breathing. Waking up the patient gets more and more difficult.
The patient also undergo a change in breathing pattern. It becomes more and more irregular with a period of non-breathing in between. This period gets longer and longer. Soon he will be breathing with a mouth wide open and request for more oxygen.
Urine and bowel discharges are inconsistent and coloured unnaturally. Due to the appetite and diet change combined with the toxins that the liver is trying to filter, discharges will be different and inconsistent. Make sure that the patient take in as many fluids as possible, though he may not be able to take them as much as before.
In the later stages, the patient will not be able to feel the tips of their toes or fingers, claiming that they are not there or they are numb. To check this, pinch a fingertip. Blood should rush back as normal but if the person is approaching death, it feels cold and gives a bluish tinge.
A few hours before the patient leave, you will hear a rattling sound in his chest and the patient will have difficulty keeping the lower jaw up. This is the sign of goodbye.
this is very informative for sure, and hopefully the situations on the last few bits will not show up for a long time from now.
ya if it show up I wouldn’t handle it any better than I did before.
i agree with KY. and it is imperative for carers to understand how depressing it is for a patient to become bed-ridden or feeling helpless and not being able to do what they used to be capable of on a day-to-day basis. and it is true, stress-inducing agents are more often than not from a human source. pretty comprehensive article =)
High five on the human stress inducer. 😀
my eyes welled up as I read this. I took care of my bed-ridden dad during his final months of battle with cancer. There were days I was SO tired and cranky, I wish I hadn’t been so. But I’m sure papa understands. I am lucky I didn’t hear/see that final sign, altho we knew he was leaving, hands cold, sleeping all the time. His last words to me were “I love you darling” 3 days before he died. Sometimes simple things make very sick people happy. Because of the hot conditions of HKL, he was sweaty all the time, and his palms had a sour smell. I used to pump some hospital hand disinfectant on a piece of tissue and wipe it on his hands, and he’d be happily sniffing it, saying “nice smell”. Do what little things you can, while you can. He/she will appreciate it.
I m sorry to hear that. My story is everybit as chaotic as yours. I actually said goodbye to my dad when he was hallucinating so he missed the goodbye in the end. It was sad. There were times he was alert and requested for a hug or for some comforting words. Those times he was greeted with anger n frustration. At that time we were all hands full trying to minimize our own trauma and miss out on that. It would be correct to say that I knew alot but did nothing with the knowledge. It took me a long time to forgive myself.
You have given a beautiful description of what so many go through when a loved one goes through a slow end.
None of this is easy to watch. The family of such loved ones are often overwhelmed by emotions and at times do not and cannot make rational decsisions about end of life care.
You found that healing from a bad fracture took more out of you, made you more dependent on others and likley changed you.
Most people change for the better. Learning compassion, understanding and true patience as opposed to just saying one is patient.
Like so many we ignore the body of knowledge that is available regarding the difficult role of being a caregiver for a sick, inujred or dying loved one.
Thank you for sharing your lessons learned.
I trust you will turn less inward in time of crisis, stress or danger. No one can it all.
As humans few of us can rise to the occasion for every life crisis.
The tsumani/earthquake in Japan took control of many lives, ended many young and promising lives, and the recovery is still going on there.
Your recovery is ongoing. That healing bone will take one year to complete the process.
No matter what you do, your endurance and physical abilities will be diminished for that year.
What you endured with your father reminds of what my wife an I went through when her mother had a long good bye. Dementia took her from the family long before her body expired We wathced for several years as her ability to remember the names of her sons and daughters disappeared. The last year she rarely spoke, often she did not or could not acknowledge our presence.
May the peace and love of our Lord guide this day and my you benefit from your life lessons.
Thank you so much haze… I’ve seen relatives leaving, and some of the signs before they left… it is very sad and heart ached just to witness it.
Thanks for writing this article, it is very helpful and easy to understand, may God bless you and thank you for sharing!
Aptly written. Brings back the memories of a very stressful period. But we have to keep moving forward. Just remember to learn from the experience…
I’m going through the same with my mom. N when I can’t go out or hv to work I get very upset and angry. Then I feel guilty for feeling these things. . . Feel alone n lonely at times cos no one understands. Thanks for this article
hugs. stay strong 🙂
I think a Lot of people think they are alone. You aren’t. Why it is so hard for us to reach out and ask for help amazes me. Churches are a VERY good way to start. They have people who do respite work to give you a break. Also the county I live in likewise has this service. Please look into it and God Bless.
Thank you for writing this, Haze…
Thank you for sharing your experience with us.
I am right in the middle of a similar situation, having to take care of my bedridden mother. Hopefully she will recover back.
Hazel, thank you soooo much for your thoughts. I took care of both my parents before they died, however, they were not bedridden. My parents were like night and day. Mom was depressed; my dad so positive, just like the way he lived his life. I a now volunteering at a nursing home visiting patients who have little or no visitors. They seem content to just want to lay there and watch tv. I ask them what their interests are, could I read to them, etc.. with no luck. Ihave thought of taking my laptop in and seeing what they could do with that. If they enjoy anything about it, I may donate an old one to the nursing home for their use. You gave me some wonderful ideas and things to think about. It is a real labor of love to care for a bed-ridden parent, spouse, child. It can suck the life out of you. I think more people should offer to help out, even for a week so they can get some rest. What I think is odd is that once one child takes in the ailing parent, the rest are free to just “visit” and go on with their jobs, trips, plans, etc. It is hard not to get resentful, but you really can’t. My father would get very upset if he knew htere was he slightest tension between any of his five kids. Also, the elderly tend to say things without thinking, and they can be hurtful, and you can’t really “let them have it” like ou could a young person because they really aren’t aware ghey are hurting you and if you react it upsets them. I used to say to myself, why am I putting up with this abuse? But my parents took very good care of me as a child and I was not going to let them down when they got old. I think support groups are EXCELLENT! JUST TO KNOW you are not alone. Once again, a very very good article and I hope you will write more..
I discovered this blog post bookmarked and even i seriously enjoyed everything that I browse. will honestly save the application too plus experience ones own various several other threads soon after.
THANK FOR YOU INSPIRATIONAL SITE. I AM LOOKING AFTER MY WIFE WHO IS BEDRIDDEN FOR THE TWO AND A HALF YEARS AND IN CONSTANT PAIN. WHAT A MENTAL DRAINER TO HEAR HER COMPLAINING DAILY AND NO MEDICAL TREATMENT HELPS. WE ARE TAKING IT ONE DAY AT A TIME WITH GODS HELP.
THANK FOR YOU INSPIRATIONAL SITE. I AM LOOKING AFTER MY WIFE WHO IS BEDRIDDEN FOR THE TWO AND A HALF YEARS AND IN CONSTANT PAIN. WHAT A MENTAL DRAINER TO HEAR HER COMPLAINING DAILY AND NO MEDICAL TREATMENT HELPS. WE ARE TAKING IT ONE DAY AT A TIME WITH GODS HELP 😉 .