Things Every Caregiver Needs to Consider

Did Caregiving creep up on you?  You start with small chores - helping with some cleaning around the home, running errands and ensuring doctors appointments and follow ups are made.  You then find yourself in the throes of being involved in the day-to-day, that mom’s memory isn’t quite where it used to be or dad can’t get around the house as easily, and then it hits you - you’ve now committed to taking care of someone else.  

Sometimes an individual’s caregiving journey is a natural progression as their loved one ages, and other times it is triggered by a major health event - a heart attack, stroke, fall, or in my case, a disease diagnosis.   I didn’t realize what life was about to present for me once mom told me she had Parkinson’s Disease. As a degenerative neurological disease, changes happened slowly at first but then quickly progressed. I had entered into a totally new phase of life as caregiving had become my new normal.  It’s like an entry level position in a new career field - so many questions, things to learn and responsibilities to take on but without the training and mentorship; because if you don’t identify as a “caregiver” you won’t look for resources to help you navigate your new role. 

With demands on your time and—often more important—your emotions and family dynamics, taking care of a loved one isn’t easy, but knowing a few things about the process ahead of time, or earlier on in your journey, can make for smoother sailing down the road. Having cared for mom for the past nine years, here is some advice to help you make smart choices for your loved ones future needs and to better manage the challenges you may be facing now as a caregiver.

The first stages of caregiving are the most overwhelming and challenging as you are least informed about expectations and needs but here are questions to consider and re-evaluate as your loved one ages and/or the disease/disability progresses:

• Arm yourself with as much knowledge as possible about your loved one’s disease/disability - knowledge is power and allows you to ask better questions and make informed decisions.

• Are you confident with your loved one’s doctor or specialist?  Perhaps it’s time for a second opinion - a fresh pair of eyes and perspective.  
 
• What knowledge/skills will you need to be able to care for him or her? Where can you get trained to do the tasks required? (e.g. - feed, bathe, groom or dress someone, help them up from a fall properly)

• How does the disease progress and how will that affect your loved one’s ability to take care of him or herself?  

• Do you have the proper tools and products in place?  Identifying the current products you are using.  For example, if your loved one has incontinence like my mom does - are they being fitted in the proper products? Are you choosing based solely on price or do you have full knowledge and understanding of the importance of the product having the right fit and absorbency to avoid issues like leaking, odor and urinary tract infections?  

• What are the care needs now and what are they likely to be in the future?

• What is the financial situation?  Understanding and oftentimes taking over the finances is needed to prevent mistakes and have a grasp on all financial matters.  Additionally, there may be financial help available through social security, Medicaid and other resources. 

• What legal matters should you know about? Are you, or another family member your loved one’s Power of Attorney? Is there a living will in existence and when was the last time it was updated?  Advanced directives in place?  A release of information signed and filed with your loved one’s doctors?  

• Do you know what your loved ones healthcare wishes are?  

• Is long-term care a consideration and if so, what are your options and what can you do to prepare in advance should your loved one need professional care in the future?

And let’s not forget considerations for you, the Caregiver.  We often push our needs to the side and sacrifice our health/wellbeing for our loved one.  Understand that...

• You are not alone - there are 65 million caregivers worldwide.  Find online support groups and chat rooms or a local caregiver support group.  We all need someone to talk to who can truly empathize.  

• It’s ok to take a break - be it an hour or a mini vacation, stepping away from your caregiving role is vital in taking care of yourself so you can properly show up, and care for, your loved one. 

• Ask for help - recognize you can’t do it all, and that’s ok.  Asking for or taking friends/family members up on their offer is a necessity.

Caregiving has many challenges and also many rewards. But you need to honor your own needs as well as commit to caring for someone else. That’s the only way you will be able to sustain your patience and your caring and be successful over time. There are many things to learn and most caregivers are just “making it up” as they go along. Getting information and training will help you feel confident about the many tasks you perform. Information is available online, at disease-specific websites, through your medical providers, Area Agencies on Aging, some employee assistance programs, support groups, senior centers, and your community. 

Caregiving is a long and winding road filled with many twists, turns and unexpected events along the way so preparing for next stages, asking the right questions and recognizing the importance of respite and self-care will only help you better prepare for what is to come.