What To Do When the Caregiver Becomes Ill
The past several weeks have been a harsh reminder of what could happen when the person we depend on the most, our Parkinson's disease caregiver/partner, suddenly becomes ill. My husband of twenty years became severely incapacitated after a long series of unfortunate events which began with a flu shot.
Until this occurred, I truly had no idea the extent to which I relied on my spouse for day to day activities. Besides being the sole breadwinner, he is the backbone of my ability to maintain my independence.
As you can imagine my world turned upside down and made me realize that I am not as prepared, as I thought I was, in being able to take over his responsibilities while maintaining my current level of function and Parkinson's disease advocacy work.
Being a caregiver is time-consuming
It is difficult enough to be a caregiver, especially when you are suddenly thrust into this role. But the role becomes doubly precarious when it is the patient which now must assume this task.
When the person we love, who is also our care partner/giver, becomes unable to perform their duties, it is natural to feel a surge of adrenaline as we try to become the caregiver ourselves. We may feel we can do this forever, as I did. In the face of a medical emergency, my training kicked in automatically forgetting that just a few minutes prior I was having difficulty breathing due to pericarditis.
So it went, day in and day out. My needs became second hand, and all my energy was focused on my husband’s well-being. As I continued to play nurse and caring wife, I was astounded at my ability to keep going without faltering.
However, by week 4 I realized, rather my body realized, it had had enough.
Seek help for daily tasks
So, there we were, my husband and I, laying on each side of our bed unable to move. Me from stiffness and him from paresis. Yet, my job was only beginning because he was having persistent fevers and severe autonomic fluctuations.
While still in bed, I managed every 3 hours to roll over to check his temperature, blood pressure, and give him his meds. All the while I was trying to get some sleep myself and not forget my own scheduled medications.
As my energy dwindled and the lack of sleep began to take a toll on me, I realized it was time to get outside help. This meant having someone else oversee cooking, cleaning, and laundry.
Plan ahead for major health decisions
After, the third hospitalization into intensive care, it became clear that it was time to begin making long-term plans. This proved to be one of the most difficult and agonizing decisions for me because I was mentally, emotionally, and physically fatigued. Yet, I was still trying to care for my daughter, my mom, and my husband as well as myself.
One thing I learned throughout all this is that life-altering or permanent decisions should not be made in haste unless dealing with life and death situations. While you have time, think about making or updating your will. Make an advance directive spelling out your health wishes. Assign a medical proxy.
If you have children underage, choose a guardian for them one that will be reliable and truly ready to take on this responsibility. This will make it easier to take care of the caregiver and you if the time arises, especially in this pandemic.
Understand your finances
During this ordeal, I was reminded of how often, in most relationships, it is one spouse who handles all the finances. When that spouse is no longer able to things it can get dicey. I considered myself an informed person regarding the workings of our finances, yet I found myself having to relearn how to balance a checkbook. We as women tend to not be so involved in these matters, especially when we are the patients.
However, it behooves us to become finically savvy should we ever be the ones in charge if our carepartners/givers become ill. I highly recommend getting a copy of Women & Money: Owning the Power to Control your Destiny by Suze Orman. I had to pull mine out recently to refresh my knowledge.
When you are dealing with a crisis, you do not have time, energy, or a state of mind to deal with things like bills. I was fortunate that most of our recurrent bills are already automatically withdrawn because I rarely had time to check mail much less sit down to sort it and make payments.
Prioritize your self-care
Finally, I cannot underscore the importance of self-care which includes a good support team. Having a trusted friend to talk to on the phone or drop off a cup of flavored coffee can go a long way to boosting morale and help maintain sanity.
Equally imperative is making sure you do not skip meals or medicine. Do not be afraid to ask for help. Because when the caregiver is sick everyone around suffers, take it from me.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?