What its like to be a caregiver and how excuses are like butt holes and everyone has one.
This is my story. Not everyone has the same story. Not everyone has the same circumstances. This article is based off what I have seen and what I read and talked to others about.
If you are a full time caregiver then I hope you can relate.
If you know of someone who is a full time caregiver, maybe my story will help you understand what they are going through.
If your looking for a grammatically correct blog you came to wrong place.
Have you had a family member or loved one recently had a traumatic life alerting event? Are you trying to decide if you want to become a full time caregiver? This article is for you!
Hi my name is Tina, and I recently quit my job to become a full time caregiver to my father in law Richie who had a massive bilateral and lateral stroke that left him nonverbal, bedbound and lack of movement in the limbs.
I want to go through what it is like behind the scenes and tell you what most wont tell you. What its really like! The good, the bad and the ugly!
For updates on how Richie is doing click here.
The ugly truths about being a full time caregiver
Family and Friends
When you start out as a caregiver everyone will say "call me if you need anything" or "let me know what I can do" or "I'm always here for you if you need anything". Lets get real, if they actually do, its not for long. It becomes out of sight out of mind real quick.
I have learned that "call me if you need anything" translates too, "I am just saying that to look good". Friends that have been life long friends of the person become so distant, they only check up once a month and your lucky if you get that! If you are relying on friends and family, my advice is DONT! A day turns into a week, a week turns into a month, and month turns into MONTHS!
I know Richie has friends that he has bent over backwards for, done so much for, and they have only seem him a handful of times. That is being generous!
Excuses- I have learned that everyone has excuses! They are truly like butt holes, and everyone has them.
"I'm really busy, Ill try to stop by sometime this week" -Never happens
"I'm not feeling well, I don't want to get him/her sick" - Never shows up when they feel better
"Work has been crazy busy, I swear I'll try to be there next week" - Makes the same excuse the following week. If you wanted to make time, you would!
"I'm so busy today, I'll be over tomorrow" - Never shows up, its a week later if your lucky.
If you rely on these people who call themselves friends, or even family and they never show up, they never help out, or when they do its few and far between. Don't get your hopes up.
I have literally told Richie that someone was going to show up and they don't and all he does is wait up for them and then cries because they never pull through. I have learned that you just don't tell him and if they show up, they show up. If not, at least he never knew they were supposed too as bad as that sounds.
I mean does it hurt to show up for 15 mins? People will always make themselves look good and they wont be there when you need them.
No Sick days/ Sleep
Sometimes patients have insomnia. That means no sleep for you! I suggest if you can finically afford it, hire a private caregiver to help you out.
If your like me and can't afford it, well you better find an energy drink or keep your coffee bar stocked up! There has been times I had to go 48 hours with no sleep and no help.
Depending on the patient and what’s wrong, there are times when depression kicks in. Be ready to give pep talks often!
If you have no caregiver and you get sick, well I certainly pray for you!
One time I was up for 48 hours and heard crying and screaming for 28 hours off and on. There was another time I was up for 36 hours and heard crying for 18 hours. You know that saying “If you like your sleep, you better cherish it while you can”? Well that’s how it is around here. Especially when patients have PBA. If your loved one has a medicine routine you have to remember that there are times where you have to give meds every 2 to 4 hours. You’re lucky if it’s 4 to 8 hours. There are times when you have to set alarms and give medication and try and go back to sleep and hope that they do too.
Clean ups!
If you can’t handle cleaning poop, or rolling someone from side to side you should just throw it in now!
When you are a caregiver you have to clean poop. Yes it is not fun. But when you love someone you cannot let them sit in it. If your loved one is in the bed and you cannot move them to a shower you actually have to learn how to bathe them in the bed. Yes it can be done.
Did you ever think your nightly dinner talks now include do you know when their last bowel movement was? That becomes normal.
Urine output is also important. Changes in color, frequency and smell all play apart in a persons health. Monitoring that is important!
Bed bound and bed sores!
One of the biggest hurdles you have to get through is making sure that you’re constantly turning your patient. If they sit in one position for too long you can create bedsores. I suggest every 1-2 hours and using a wedge or pillows.
Financial burden
This is different from everyone. However it can definitely put a finical burden on you. Things add up quick. Not including all of the medical expenses that add up but all the little things you don't even think about. For example we now go through a box of trash bags in a few days. Insurance doesnt cover gloves. All of the medicine costs that insurance doesnt cover. Those are just a few examples. The costs add up quick!
If your anything like me, my house hold went from 2 incomes down to 1. So of course that has made things tough as well.
If you lucky enough to have a social worker, they should be able to point you into the direction of qualifying for some assistance.
The Good
Ok! So now we went over the ugly truths and behind the scenes. Let’s drive into the good parts!
Progress! There is nothing better then someone you love making progress!
Each milestone just brings you more joy then you could ever imagine. When someone says you will never be able to eat again and you pick up a spoon and eat mashed potatoes for the first time in 6 months, it feels good to see hard work and dedication pay off. It’s a joy in your heart that is unexplainable unless you are going through it.
Love!
There is nothing better then seeing your loved one happy and getting to spend time with them. You never know how long they have. Some people are terminally Ill and these are the moments that make their day. Remember that some patients feel that they don't have much to look forward for, so being able to spend quality time with them really makes their day.
Helpful Tips & Tricks
Join a group on Facebook or another platform to talk to other care givers going through the same thing as you. Sometimes it helps to vent and talk to others who understand what your going through. Because I can tell you from experience, if they are not there and haven't gone through it, they don't know how hard it truly is
Get in touch with your social worker if you have one. They can point you in the direction for assistance. Home care, supplies, food assistance, billing assistance, and much more. See what you qualify for.
Don't forget that YOU MATTER too! You wont be any good to the person your taking care of if you get sick. So make sure your taking care of yourself too.
When it gets tough walk away and cool down!
I hope you found this helpful. Thank you!
Richie's Go fund me link.
Richie before his stroke with his daughter in law Tina.
May God Bless You!
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