For those chronic illness patients who have a family member as a part-time or full-time caregiver, it is a relief to know that your care is in the hands of someone who knows you and has your best interests at heart. But sometimes it can be stressful to think of the added mental and physical workload that is now resting on the shoulders of your loved one.
I do not have a caregiver. I am fortunate to be living independently and can manage my own finances, engage in volunteer activities, manage my medicines, get a lot of exercise and prepare my meals without help. But there are some occasions where I need to have the support of friends and family members. I am familiar with the nagging feeling in my mind about whether I am asking too much, always concerned that am putting a strain on those in my extended support network.
So what should we as chronic illness patients do if we think that the burden on a loved one is so heavy that we are worried it will overwhelm them, or even cause harm to them? First, I would advise that we take a step back and make sure that we are using the correct yardstick to measure the loved one’s capabilities and capacities.
What I mean by this is that I think it is normal to think of our own limitations and transfer them to others. For example, my shortness of breath and fatigue mean that I am now unable to keep up the pace that I set 7 years ago, and there are a number of activities I can no longer easily perform. But just because I tire out quickly doesn’t mean that my loved one labors under the same challenges. If there are no apparent health and well-being issues, and if your loved one tells you that they can handle the support that they are offering, then believe them and let it go.
But what if your caregiver does have some physical or emotional limitations, even those that could eventually ruin their health or threaten to shorten their life span? This is the time to gently bring up your concern, which really is two-fold when you think about it.
First, if your loved one becomes incapacitated, then you will not only have to find someone to care for your needs – you might need to find someone to help care for your loved ones needs as well. Sometimes it is a practical argument can alert the caregiver to the financial tightrope he or she is walking on – if it is expensive to provide assistance to one patient with chronic illness, how much will it cost to take care of two patients with chronic illness?
Second, your loved one is caring for you because he or she dearly loves you, does not wat to see you suffer, and can’t imagine a life without you. Well you might consider asking your loved one to step into your shoes. Very calmly but firmly reinforce how you would feel exactly the same way if caring for you should cause your loved one to suffer a life-threatening condition - or even to leave this earth earlier than planned? .
At this point offer to help your loved one brainstorm to come up with a tweak to your care that would allow him or her to have a break (physically or mentally) that would spare ruining or totally tanking your loved one’s health. Maybe it is having someone come in and take care of you for a while so that there is a well-deserved break from the stress of caregiving. Maybe it is consulting with your doctors to determine if there are pieces of equipment or care-giving techniques that would ease or even alleviate physical burdens.
What if you are not the chronic illness patient, but another friend or family member who is concerned for the caregiver? How do you communicate that you are concerned both for the patient and the caregiver? My first word of advice is that you should be very careful in how you express your thoughts. The chronic illness patient is already feeling like a burden, and if it looks like you are concerned that the care is hurting someone else, then the guilt feelings will just grow.
As for the caregiver, that is a hard conversation to have as well. You see, the caregiver’s stamina is already challenged by being responsible for the well-being of two people, including one who has a lot of medical issues to navigate. You have to proceed as though you are walking on eggshells when you broach the topic of getting help because the caregiver is going to feel like “I’m doing the best that I can, but all you have for me is criticism?” In my own life, I have seen some well-meaning people giving well meaning but maybe tone deaf advice to a caregiver, and seeing the hurt look in the caregiver’s eyes.
Sometimes the answer seems so logical to those of us looking in from the outside, those of us who aren’t there everyday and watching the dynamic between the caregiver and the patient, and those of us who do not know the depth and long-standing strength of the relationship between these two parties. It may seem logical for us that the answer is to hire additional help. But do you know whether the couple has the monetary resources to finance this?
Or maybe it seems rational to proceed to put the patient in a facility where professionals will care for him or her. But again, do you know if the couple has the funds to afford this expense? Do you know if the caregiver will be able to bear the loss of no longer having the patient at home? Even if the patient has medical issues, if the couple has been together for many years, how do you replace their laugh, their habits that have become part of your life, their touch and their conversation? While it is true that ultimately the caregiver may have to make the decision to place the patient in a facility that has programs and resources to better care for the patient, it is up to the caregiver to come to this decision. What the caregiver needs from you is support, not commentary on a life that you are not living.
Do not forget that caregiving does not end when a patient is in a care facility. The caregiver remains a very important advocate who is regularly at the facility and making sure that the needs of the patient are being effectively and compassionately addressed, and in many cases will be responsible for making sure that bills are paid and for getting the patient to medical appointments outside the facility. This person may also have power of attorney and life instructions on behalf of the patient.
Maybe the advocate is not under the burden of physically taking care of a patient who is not present (for example, regularly lifting the patient in and out of bed, feeding and bathing them, making sure they have the require medication, etc.) But the burden of the mental stress that comes with monitoring the loved one’s care, finances and well-being can be just as debilitating.
So how can you help the on-site caregiver as well as the caregiver who is performing as the patient’s off-site advocate? Because a large portion of the population that will receive caregiving are in their senior years, one of the best resources I have found to provide tips/guidance for patients and caregiver is the American Association for Retirees, also known as AARP. In a January 26, 2017 article on the AARP website helps us to understand that help is best provided through what you say – and don’t say – to the caregiver/advocate. The article is entitled “Taboo to Caregivers – 11 Things to Never Say to a Caregiver”. The author of this article, Amy Goyer, is an expert on this topic, having been involved in family caregiving for 35 years.
The tips concentrate highlight using positive feedback rather than suggestions, focusing on the fact that each caregiving situation is unique, and not minimizing the emotional and physical impact on the caregiver with awkward statements and comparisons. I think each tip is excellent and I would encourage reading this article before having a serious conversation with a caregiver. But I think tip number 8 is worth repeating here:
The value in this is recognizing that you are trying to help the caregiver – not make them create tasks and goals for you to achieve.
A final thought is that visiting with the caregiver and the patient once may not seem like lifting a heavy burden. But what I have found in dealing with caregivers and advocates for family members is that the viewpoint of person who checks in periodically but doesn’t see the situation on a daily basis is a Godsend. This is because the caregiver can lose objectivity in that they see the patient each day or fairly regularly. So any slippage in the condition of the patient might not be noticeable because you can become accustomed to the gradual decline. To the periodic visitor, it will stick out like a sore thumb. You can then give gentle yet insightful feedback to the caregiver that might cause them to consult doctors about treatment options, or maybe seek new methods of support.
In closing, the most important thing to remember is support should never make the caregiver feel guilty, or overwhelmed, or patronized. Support should encourage the caregiver, provide some respite from stress, relieve anxiety and provide an opportunity to oversee their own health and well-being – and to let the caregiver know that he or she is loved or cared for as well.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.