Instructions not Included When it Comes to Caregiving: By Dr. De Leon

Don’t dwell on the disease. Value the moments, the pearls of wisdom, their smile, their humor.” St. Elizabeth

     Caregiving is not for the faint of heart. I have had to be the caregiver for two of the people I love, my grandmother and father. Although the experience was extremely rewarding, I was left completely emotionally and physically spent when it was all said and done. Being a caregiver requires inner fortitude, perseverance and above all a great deal of love. Love for that person you are providing care for is the only thing at times that drives you and keeps you from losing your wits.  In dealing with my loved ones as a caregiver, I had my moments of frustration as many of you have in taking care of your own loved ones who suffer from chronic illnesses like PD. The problems usually arise from thinking we know what is best for them which may be in opposition of what they think is best for them.   Just because they are physically handicapped this does not mean they are mentally handicapped hence conflict ensues. This is entirely different when taking care of someone whose faculties have diminished as in those with dementia, we must then be the voice of reason. But when someone is still able to make decisions although in our opinion are not the wisest we have to find compromise to respect their wishes, keep their dignity, and maintain their safety.

So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath)?

This question is extremely complicated of when to override their needs and desires for safety sake?

For example, my dad was very frail and getting extremely weak in addition he had fallen twice; yet, he insisted in continuing to use a walker instead of wheel chair. This entire scenario only made me cringe expecting to hear the sound of broken bones at a moment’s notice. Despite my better judgment as a doctor, I had to respect his wishes.

It is important not to fall into a trap as a caregiver of assuming what the person with PD needs. It is best to ask your loved ones their wishes. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather as a truly caring individual.

So here are some tips I learned in providing care:

Learn to compromise– avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence … instead of forcing the wheelchair in the case of my dad, I explained my concern for him of falling again and breaking a hip and ending in the hospital. Then let them decide based on the information.

Learn to reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones. But, as his bones were extremely frail and he was very weak any small insignificant injury even a simple bump from sliding off the bed could result in a hip or wrist fracture. However, if he did not wish to use the wheelchair, then we had to device another plan to maintain his safety. He agreed with this, he was then instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to sit at side of bed if reclining for few minutes rather than jumping up from laying (although  this was emphasized more for theoretically purposes just so that he  would remember to take it easy because in all honesty he could not jump anywhere when movements  were extremely slow, deliberate and  laborious). These recommendations can be used for anyone with mobility issues especially if getting orthostatic, dizzy and at risk of falling.  I instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he did slip it would be easier for me or my mom to catch or lift him up.

Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to the daily needs of my dad, I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place?  Are Wills done?  Over see funeral arrangements if dealing with end stage disease? Are other legal documents in order? Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, or contemplating placing loved one in a nursing home. Sometimes our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things done.

Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one.  At times, it is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They can help provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (I.e. help find a sitter/respite care). When I was caring for my grandmother who had end stage Parkinson’s she would at times get very belligerent and accuse me of holding her hostage since she was bed bound. Being a neurologist, I knew this was part of her illness I knew how to treat and did not bother me. However, when I was at the office and at the hospital having to deal with PD patients all day who were hallucinating and belligerent then come home to same scenario sometimes was a bit overwhelming. It was nice to have friends to talk to and even place her in respite care for a week so that I could decompress. Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills, understanding, and putting oneself in the shoes of the person living with PD. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. A simple kiss, hug, brush of the hair or hand, and even smile can go a long way!

The same rules apply for the caregiver; find someone who is willing to listen to your story. This simple act can allow you as a caregiver an outlet to relieve your own stress and open the door of communication and a way for you to ask for assistance in the area of specific need.

Lastly, learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally. After all, we are all social beings most of us even the shyest of us thrive when we are bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get yourself the caregiver out of a routine. Planning social gatherings with and without the person you are proving care for will help to diminish the risk of  depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation in both patients and caregivers alike. The outings or get together will also help to remind those involved of their unique talents and gifts and bring closer together as a couple or family. One activity my grandmother always enjoyed was painting. So we would paint as a family. This was always fun and made us forget for a bit about the struggles we each faced on a daily basis. This is fairly cheap to buy paints, brushes and canvas at a place like Hobby Lobby. Now they even have coloring books for adults but even children’s coloring books are fun to do as a group. Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected “ice cream” run, my dad loved this or whatever their favorite activity may be; in my dad’s case fishing (even if it’s just in bucket or fish tank because he got too sick to go outdoors fishing as he would have liked).