No Time to Care
Caregiving is a very lonely responsibility. If you have ever been a caregiver, you understand what I mean. All caregivers have probably experienced that feeling of being alone when the smoke clears. The initial burst of enthusiastic help is over. Everyone has returned to their normal lives except you. As the dust settles and the smoke clears to the immediate crisis, you stand alone ready to pick up the pieces of whatever broke this time, keeping up a brave front for all to see.
We are One
Each caregiver’s situation is unique to that person and circumstance. Some caregivers have minimal responsibilities focusing on consultation and backup care. Others, like me, find that the needs of the one receiving care are so significant that our lives merge. The Bible says a husband and wife shall become one. Lynn and I could serve as supporting evidence for that passage. We could not be more “one” unless I donated body parts to him. At times, it feels as though my life no longer exists separate from Lynn’s.
Everything that happens to him affects me and vice versa. I assist him in accomplishing most of his daily life functions. Since Lynn cannot help with any of his care, each action taken requires my assistance.
- Lynn must be fed every meal and assisted with drinking beverages.
- He requires assistance with bowel and bladder management.
- Careful personal hygiene with meticulous skin care is essential daily.
ADL Applies to Both
All activities of daily living (ADLs) performed must be completed by both of us. Therefore, what takes most people maybe an hour a day to accomplish takes me three. An hour for him, an hour for me, and an accumulative of one dedicated to the overall process. Multiple the impact of triple time on everything I do all day, and it makes for a long day.
By the time all these daily chores are complete, he’s tired (and so am I). He falls asleep to restore his strength before continuing his day. I keep going like the EveryReady Bunny. I have housework to do, bills to pay, meals to prepare, laundry, groceries, a website I’m creating for caregivers, and so much more that I’m overwhelmed with “to dos.”
Primary “To Do” List
In any given day, my primary “to do” list might include
- Preventative skin care or treat skin break down
- Assistance with daily exercise routines if mobility impairment is an issue
- Set up and administer respiratory therapy treatments and clean equipment afterward if needed
- Prepare and deliver dietary supplements
- Manage medication and evaluate for possible side effects
- Help with whatever type of entertainment (changing the TV channel for him repeatedly) requested
- Provide general care and comfort throughout the day (scratch this itch, move that arm, cover that hand, etc.)
- Answer emails, conduct banking and make phone calls
- Provide emotional support
While I don’t perform each task daily, some I must do more than one time per day depending on the situation. Each situation is unique.
As you can imagine, keeping up with all these activities is quite challenging and rarely is achievable. I never finish my work; therefore, I’m always exhausted from just trying to keep up. There is no time left over to enjoy life going on around us. Like many caregivers, my world narrows to one focus, and it’s not me. It’s Lynn—what must I do to keep him healthy and safe, so we don’t head back to the hospital.
Each day begins with a “to do” list. The list could easily be about a thousand items long before I ever roll out of bed. The weight of it makes me not want to open my eyes when I awaken. Therefore, I have to set priorities for the day, assigning each duty a place of urgency for getting handled. When possible, I eliminated those in the lowest category from the list.
I do what I can just to keep my head above the water line slowly rising threatening to drown me and take over my life. It’s tempting just to let it and see what happens, but on the other hand, I know it’s just another fight. I struggle not to give into depression.
Along with the fatigue, depression, and constant need to keep going is social isolation. I have no time for anyone but Lynn. I don’t have time to socialize; not even a quick text, phone call. If someone posts something on Facebook, I may be able to comment with a one-liner while I wait on his tea or food to heat but don’t look for me to initiate a conversation.
What I have found is that as I began to drown in caregiving duties, it was like I was left floating in the ocean alone heading out to sea in choppy waves. I could see my friends and family on the shore waving; wishing us well, periodically encouraging cards or text messages but no one got in a boat to help pull us ashore after the first year or two if we became stranded. After the first couple of years of crisis after crisis, Lynn’s hospitalizations did not seem to raise the same sense of concern as in the earlier years. Friends made offers to “let me know if you need anything” but no concrete suggestions on how they would help. I was nearly always alone. I didn’t want visitors to entertain but to run errands, bring me a meal, stay with him so I could shower or have someone stop by for a hug or pray would have helped my spirit.
Others Hurt, Too
What hurts now, too, is that I’ve discovered that my isolation and focus on Lynn has resulted in others thinking I don’t care about them. I was told recently I did not show appreciation for what others did for me or show that I wanted people to come to my home. When I explored how I was giving that impression, they shared the following examples:
- I stay by Lynn’s side rather than sitting with others I have not seen in a long time to engage them in conversation
- I wait to get Lynn ready to participate in events until the last minute, so he’s late joining the group
- I disappear with Lynn for very long periods
- I don’t show appreciation when they pick up the slack for me or accommodate our limits.
- I don’t acknowledge that their lives are stressful too.
- They are making sacrifices on our behalf.
I had become so self-absorbed in my world of pain and hardship that I had forgotten that others I loved were suffering, too. I have to remember that others of my family and friends suffer different types of pain and need encouragement also. I have to try harder not to neglect them or step on their emotions.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC and has been reposted with permission.