When I became Daddy’s full-time in-home caregiver, I was totally inexperienced. In many ways, I had no idea what I was doing; talk about on-the-job training! As in many areas of life, hindsight is 20/20. If only I had known then, what I know now. The story of my caregiving days is not over, but I think it is a good time to stop and share some of the lessons I learned along the way. I could not have loved Daddy more, but here are some things I would do differently to enhance the caregiving experience for Dad, my family and me.

Respite. Look up respite in the dictionary and you will read:  a short period of rest or relief from something difficult or unpleasant; a short delay permitted before an unpleasant obligation is met or a punishment is carried out.

Let me make it clear that I do not consider caregiving to be unpleasant and certainly not a punishment! Sometimes difficult, yes. I much prefer the synonyms listed in the thesaurus to the actual definition: rest, break, breathing space, interval, intermission, interlude, recess, lull, pause, time out; relief, relaxation, repose; informal breather, letup. 

Lovely words, they are…description of a perfect respite. If you have been involved in caregiving any length of time, you are sure to have heard that word numerous times. Rightly so. Every caregiver needs respite and it should not be considered an option. I mention it first because without regular time away from caregiving responsibilities, the situation can become overwhelming. Extended family members were more than willing to help when I asked. In addition to occasional days and evenings, having one week-end off each month to devote to my husband, children and grandchildren and take a break from responsibilities prepared me to be a more patient and attentive caregiver. The intervals probably saved me from burnout. A reasonable and flexible schedule for respite should be coordinated from the beginning; don’t wait two years like I did.

The basics. Nothing is more basic to caregiving than loving the care recipient (that’s why we call them our loved ones).And although love does cover a multitude of sins, it does not teach you how to properly give a bed bath, provide incontinence care, or position in bed to prevent skin shearing. (If you don’t know what that means, you should look it up.) While attending nursing school after daddy’s death, I often wished I had been more knowledgeable of the fundamentals when I was taking care of him. He would have been more comfortable and I would have been more efficient. Take the time (I know, time is a precious commodity) to hone your skills. If you have a friend who has had experience as a caregiver or is a nurse or nursing assistant, ask them to teach you. Some communities offer classes through organizations that assist elders. And of course, there is a lot of information available online and in books. Spending a little time learning to provide great care will save you time and stress in the long run. Doing research on the disease or condition that affects your loved one will also serve you well. 

Journal.  I do wish I had kept a better record of my caregiving days. While memories pressed between the pages of my mind provide lovely reminiscences, they fade with time. If only I had written accounts of certain experiences – such as the Sunday, a year before he died, that Daddy lost consciousness in his Sunday school class and later talked about seeing Jesus; or noted specific information that only Daddy could provide. Again, a caregiver’s schedule does not often afford free time to write extensive journal entries; but only five minutes at the end of each day would have provided a treasured memoir. Another reason to consider keeping a journal: research has shown that journaling has numerous benefits for caregivers including stress reduction and anger deflection. It is cathartic to write – rather than shout – angry words.

Photos. Taking photos was not one of my priorities when there were so many other duties to complete.I have only a few photos of Daddy that were taken during the caregiving days. We did, of course, record special occasions such as his 90^th birthday celebration, but I missed many everyday opportunities such as Daddy riding on the carousal at the park or visiting with his younger brother, J.C., at the home place in Liberty. The photo I treasure most is one of Daddy cuddling with my three oldest granddaughters in his bed, taken just two days before he went home to Heaven. After taking the picture, when I began lifting the girls out of the bed, Daddy kept his hands tightly clenched around them and grinned, as if to say, “Just a little longer.” I complied. Soon he was drifting off to sleep and did not wake up again until just before Jesus gave the call to come home. The memories are dear; the photos make them more so. 

Support Group. My caregiving journey was well underway before it occurred to me that I might need a travel guide. As a mother (not to mention, wife) I had some experience caring for the sick: but full-time round-the-clock care for someone who is experiencing the changes brought on by dementia can be like running out of gas on a lonely country road – or running off the road. I had been traveling down the caregiving road for a while before I decided to seek guidance and encouragement from others who had been or were still on the same path – a support group. 

The turning point for me was the day I came home to find Daddy standing in the middle of his road. That day I sensed we were entering a new season of caregiving and I needed to talk to others who had been there before me. Soon I was attending monthly meetings at a local care facility with a lovely group of people who shared their advice, their hearts and sometimes their tears. Not only did I receive many good, practical ideas, but walking hand-in-hand with other caregivers at various stages of the journey was tremendously encouraging. I urge all caregivers to find a support group from the beginning; do not wait for a crisis. Enlist another family member or a friend to sit with your recipient so you can regularly attend the meetings.

Attitude. Defined as a way of thinking or feeling about someone or something that is reflected in a person’s behavior, attitude will make or break a successful caregiving arrangement. I have heard caregiving referred to not just as a burden, but a terrible burden. Having that negative outlook will certainly affect the way a person provides care. Initially, I viewed taking care of daddy as my responsibility. Within a short time, I began to understand what a challenging role I had accepted. With much prayer, I chose to consider it a blessing rather than a burden. One caregiver told me that she begins every day by thanking God for the privilege of taking care of her invalid husband. That is a great example to follow.

Quality time. Just because a person needs full-time care does not mean he or she should be relegated to inactivity. Anyone who is physically able to participate in family activities should be encouraged to do so. Try to avoid the lounge chair in front of the television all day syndrome. I think our family did a pretty good job in this category, although at first we had a mindset of family only for some activities and family + Daddy for others. Soon we realized it would benefit all of us to include Daddy in most of our regular comings and goings. Of course, there were occasions reserved just for Randy and me, some for us and the children, and others just for the children who were growing up or grown at this point and pursuing their own paths.

Plan special events that focus on the recipient’s interests. Ask, “What would you like to do?” and fulfill those desires when possible. Daddy, like me, really enjoyed those long rides in the country but his favorite activity was visiting his friends that were not able to visit him. If your recipient is homebound, let their friends know the best time to visit and make them feel welcome so they will return often. Visitors have a way of making an ordinary day feel special. You may even be able to arrange a simple meal or tea time for your loved one and a visitor to enjoy together. That will surely be considered a treat!

One needed gesture that always seemed sorely lacking in care facilities is physical touch. Lavish your loved one with affection. Hugs from babies and children are especially effective.

Those are the seven categories in which I would want to improve my caregiving competency the next-time around. Following are some responses from readers of my newspaper column when I asked them what they would do differently.

• I would have been more outspoken to other family members in asking for their assistance. Because I was the one who wanted to keep Mama at home, they assumed I would take all the responsibility.
• If my brother, sisters and I had helped out more, instead of hiring in-home aides, we would not have depleted my Dad’s savings. When he died, we didn’t even have money left for the funeral.
• The one thing I wish I had done differently was attend a support group or at least get to know and spend time with other caregivers. I felt so alone and there were so many situations in which I did not know what to do. Now I am offering advice and encouragement to my friend who has recently become her husband’s caregiver, and she says my support has made a big difference. At least I can give someone else the help I needed but didn’t get.
• After my husband’s stroke left him with mental deficiencies, I would correct his mistakes. Now I realize it’s much better to work with his abilities. When I’m driving and he says, “You’re going the wrong way,” I reply, “Do you think so? Let’s go this way and see what happens,” or a similar phrase that doesn’t upset him, instead of just blurting, “No, I’m not.”
• We put Mom in a nursing home and she was so miserable that her health and mental state declined. I brought her back home and she immediately began improving – especially her attitude. That was four years ago, and though my life revolves around taking care of her, I wouldn’t have it any other way.
• How I wish I had paid more attention to my mother when she repeatedly complained about the treatment she received from a certain staff person. She didn’t want me to say anything, because she thought it would only make matters worse. Then one day as I was walking down the hall, I heard the staff person talking to my mother in a very ugly way. I reported the situation immediately and the administration took appropriate action.
• Our decision to take care of my parents was the right one, but I wish we had moved them into our home instead of our moving into their house. Even though it’s larger and in some ways more convenient, all the changes were upsetting to our three teenage children – and you do need to consider everyone involved – not just the ones you are caring for. 
• When my husband was being dismissed from the hospital to rehab, I was told I had to choose a place that day, and being unprepared, I went by myself. It was a difficult experience and I ended up falling apart. It’s much better to have a support person with you to think of all the questions you can’t because of the emotional stress involved in such a big decision.
• Definitely, I would try to enjoy my role as my mother’s caregiver more, instead of complaining…I had her such a short time.

Make the most of your caregiving days. Both you and your recipient deserve the good times. When you come to the end of your journey, the memories of those good times will make the transition less painful.