Caregiver Perspective: 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 function as one person most of the time, and aside from sharing organ donations, could not be closer. 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 skincare is essential daily
Triple time on everything I do
We both need to perform all activities of daily living (ADLs). 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 skincare 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.
Focused on how to keep Lynn healthy and safe
As you can imagine, keeping up with all these activities is quite challenging and rarely is achievable. I never finish my work; therefore, I always feel exhausted from trying to keep up. 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 set priorities for the day, assigning each duty a place of urgency. When possible, I eliminate those in the lowest category from the list.
I do what I can to keep my head above the waterline 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 in to 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.
I found that as I began to drown in caregiving duties, I felt like I was floating alone in the ocean heading out to sea. I could see my friends and family on the shore wishing us well, but the ropes tossed to us were out of our reach. After the first couple of years of crisis after crisis, Lynn's hospitalizations did not seem to raise the same sense of concern. The old standby, "let me know if you need anything," was always offered but no specifics provided-no one came to relieve me so I could get a shower, run home, or bring me clean clothes. Many days, a quick hug would have lifted my spirits as well.
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. When others go out of their way to do something for me, my verbal thank you does not show adequate appreciation. Furthermore, I do not acknowledge the sacrifices made on my behalf that allow me the privilege of sharing in activities I otherwise could not enjoy due to Lynn's medical condition. When I explored how I was giving that impression, they shared the following examples:
- Staying by Lynn’s side rather than sitting with others I have not seen in a long time to engage them in conversation
- Waiting to get Lynn ready to participate in events until the last minute, so he's late joining the group
- Disappearing with Lynn for very long periods
- Failing to show appreciation when they pick up the slack for me or accommodate our limits.
- Disregard for the stress, disappointments, and challenges they have in their lives.
- Lack of recognition for the sacrifices made on our behalf.
I became so self-absorbed in my world of pain and hardship that I forgot others I loved were suffering, too. While their pain and suffering may be of a different type, I must remember that it is just as real and important and that they need encouragement also. Going forward, I hope to be more aware of their needs and not let my physical and mental exhaustion interfere as much.
How well do people around you understand MS?