Caregiver Tips

Caregiver Tips

My name is Mary, Kris’s mom and Tiffany’s mother-in-law and live-in caregiver during this time. This list, to some extent, includes things I learned while I was a first responder, EMT, caregiver for my live-in in-laws, aka Mom & Dad, and helping, to some extent, while other friends cared for their parents.

First, deciding to be a caregiver can be a little frightening.

• Will you have the emotional strength, the medical knowledge, the outside support of family and medical professionals you will need?

• What kind of medical emergency situations could happen and how do you handle them?

• If the prognosis is less than optimistic, will you be able to hold on to your emotions so they don’t interfere with the care of your patient?

These can all be very real concerns that anyone contemplating being a caregiver needs to address ahead of time. For me, blessedly, there really wasn’t any time to consider any of the above as Tiffany was the closest thing to a daughter I’ll ever have, the mother to my granddaughter and the greatest blessing to my son so even if I worried a little about whether I could give her the kind of physical and emotional support she needed, there was no question that she would become my #1 priority for as long as she needed me. I think many other caregivers find themselves in similar situations.

As best you can, once you know what the immediate needs are, you move day to day and try to equip yourself with as much knowledge about the best form of care as possible. Dietary needs, medical needs re: drugs, bandages, medical appointments will need to addressed and adjusted dependent on the patient’s day to day pain and needs. It might all seem so basic: give physical care and emotional support and all will be well, but …be prepared. No matter how good the care is, things such as infections, drug interactions, depression of the patient, frustrations of the patient, fears the patient has, which are very real regarding upcoming chemo or surgery, can all blend together to make you question whether your care is adequate or not. At the end of a tough day, you need to make sure you have someone you can talk to be it a friend or spouse. In my case it was Kert, ​followed always by a long talk with God asking for wisdom and strength for me and healing for her, then prayers for Kris and Bean. My faith grew so much stronger and I learned to hold more to God’s promises and to know that he would work all things for good.

It is imperative to accompany the patient to doctor appointments and procedures whenever possible. Ask as many questions as you think are pertinent to their care and write down as much as you can so you can remember later. Never feel embarrassed to ask questions like “Who should we call if there is a fever or unexplained pain?”, “Is there a chance their drugs are causing ________(whatever)?” Never assume one doctor’s office knows everything the other Drs. are doing. If labs or tests were ordered, ask if they received the results because it doesn’t always happen like it should; or one Dr. isn’t aware of tests another Dr. ordered. In other words, you or the patient need to be an active advocate when it comes to their care. If things occur at home that bring up a concern, write it down immediately and if need be call the doctor’s office or send an email.

You will need a break from time to time. You need to make sure you eat well, get enough sleep, get some fresh air even if it’s just a trip to the grocery store – get out of the house! It would be ideal if the caregiver could have a day off every 3 days to recoup physically and emotionally, but unless other family or friends are willing and able to step up, that’s not always possible. If friends want to come visit and the patient wants their visit, make the arrangements but try to leave them to visit privately. You need some space and let’s face it, if they are with you all the time they just might need a break from you! We were blessed with many people from her church who brought meals and that was such a nice meal option especially on days when there was patient care, laundry, after school child care, etc.

As a caregiver, try not to take some things personally. That’s not so easy when it’s a loved one because you feel so emotionally attached. Recognize how hard their diagnosis is to them and how life altering it is to them from a personal standpoint. They may spend time crying, time questioning why they have to go through this, may refuse to eat, may have panic attacks. These are all natural responses to the end of their lives as they knew them and to the uncertainty of their future. ​However, as a caregiver you also need to recognize how much their sadness and frustrations will affect you. There will be times when they are in the throws of depression that you will feel so helpless you will want to retreat and have a good cry. But as the caregiver that may not be an option. You will need to find some alone time and someone you can share your sadness with and let the tears fall and cleanse your spirit. Also recognize that no matter how much you desire for them to have hope and a positive attitude, you can only encourage them and provide a shoulder for them to lean on. Ultimately, they will need to work through the struggle with your support and love and the care and wisdom of their doctors.

Many practical things are somewhat a given:

• Have a list of all meds handy at all times with an extra copy should an ambulance need to be called.
• Have a clear understanding of what symptoms trigger a need to call the doctor or ambulance.
• Keep a “to go” bag ready with medical info (folder) and insurance cards etc.
• If you will be expected to change bandages or treat wounds, ask for hands on training at the hospital or from the visiting nurse.
• If at any point you’re not sure exactly what to do, never just wing it, seek professional advice/opinion.
• Whatever you do – do it because you want to and do it to the best of your ability. For example, when caring for Kert’s parents it was sometimes difficult because with Mom, no matter how much was done for her, she wasn’t happy. It took me a while to realize her inability to do what she’d always done when she wanted to make her resent having to accept the help even though she asked for it.