I have a 47-year-old daughter, severely disabled, both physically and mentally, with cerebral palsy. She is beautiful, has a bright smile, and loves Cookie Monster and Oscar. I cared for her at home until she was 24, then she went to live in a wonderful facility three hours away. I have visited her most every week since then. I know and love the people who care so well for her. She was able to have a life full of activities I couldn’t provide her with the medical care I can’t provide.
I have not been able to visit since March, except two times through a window and once briefly in her room. The residence has done an excellent job of keeping COVID-19 at bay. But my daughter has lost significant weight because she refuses to eat much, however hard the staff tries. She also has developed a pressure sore due to her thinness and has been on bed rest for a lot of the time.
But even as I know she is well cared for by the staff, I don’t know what to do with all the pain of thinking of her lying in bed day after day without me visiting. She doesn’t understand why I don’t come anymore or anything about the pandemic. After 47 years, everything about this just keeps getting harder. I’m seeking spiritual support and trying to fill my life with positive things, but I still cry several times a day. I feel like I’m either failing spiritually or emotionally, and yet I feel powerless to care for her until at least a vaccine is available.
I ask God to first ease her burden and then mine, but it never goes all away and is a constant pain to deal with. This must be the “bitter cup” that doesn’t go away and must be drunk. It’s been so long and so painful, how do I live with it? Where do I put the pain so I can deal with it? It’s been exhausting for decades and now the pandemic has made it almost unbearable. What can I do with this pain and sadness, so it doesn’t overwhelm me all the time?
Her father left me and our children almost 30 years ago, so I’ve mostly been alone to carry the responsibility of her. I married a good man who helps me as much as he can but isn’t really an emotional person – he admits it – so I cry alone. My grown children see my pain but don’t know what to do about it. I’ve always been the one taking care of my daughter, and they think I can handle it.
I’m touched by the beautiful relationship between you and your daughter that you’ve carefully nurtured for almost a half century. It’s painful to witness another example of how this global pandemic is impacting individual lives. This tragic interruption is clearly impacting both of you and I’m grateful you reached out for support to help alleviate your suffering.
As we enter the winter months and experience even more restrictions on our social connections, we all need each other now more than ever. This pandemic has disrupted virtually every routine and relationship, requiring constant pivoting and creativity to preserve our mental and physical health. I can only imagine how many ways you’ve already tried to adapt to the changing protocols at your daughter’s care facility.
While I don’t want to oversimplify your previous efforts or minimize the complexity of their safety protocols, I do want to encourage you to not give up on trying to get in front of her in person or virtually so she knows you’re still there for her. I don’t know what this will look like, but I see how important it is for both of you to maintain regular contact.
If she was able to thrive for the past 20-plus years with only a weekly visit from you, I can’t help but wonder what it would take to send the signal that you’re still there for her. It truly breaks my heart to hear how confused and stressed she must be losing her critical lifeline of support from her mother.
I would hope that these wonderful caregivers would keep working with you to help her experience your presence and love in a tangible way while still protecting her safety. The challenge, of course, is that the isolation is already appears to be having a punishing impact on her physical safety.
I recognize you’ve likely explored countless options to reconnect with your daughter, as no one is more committed or motivated to finding a solution to this separation than you. However, if you’re going about this alone without revealing your high level of distress to decision-makers, you might be missing out on potential accommodations they could offer. You don’t have to be rude or aggressive as you advocate, but you can press them to seek more creative solutions to this distance.
At a minimum, I hope you’ve already shared the research with her facility administrators on the impact of isolation on physical health. The pandemic and resultant quarantine has spotlighted the very real impact of isolation on our physical and mental health. You and your daughter are suffering the effects of this, and it’s important to make sure the discussion doesn’t only include protecting her physical health from COVID-19.
You mentioned that this has caused you to wonder if you’re failing spiritually or emotionally. I can imagine that this is one of the few times in your life that you’ve not been able to eventually break through wall of opposition that’s been placed in your path. It sounds like you’ve overcome tremendous odds and have been resourceful and courageous in protecting yourself and your family from many challenges.
Please remember that your suffering isn’t a personal failure. You’re up against very real barriers that we’re all trying to understand and resolve, so it’s understandable for you to wonder if you’re failing.
This is an important time to step into a new level of openness and vulnerability that perhaps you’ve not needed in the past. You are clearly a woman of tremendous capacity. Others have watched you handle challenges and have likely assumed you were doing just fine.
However, you’re currently struggling right now and need emotional and logistical reinforcements. In the same way you’re hurting for the loneliness your daughter is experiencing, it’s also important to tend to the emotional isolation you’re experiencing as you quietly suffer around others who could come to your aid.
You’ve been thrown into caregiver roles your entire life and it’s likely a big part of your personal identity. It can be hard to allow others to truly see how much you’re suffering. It’s also common for caretakers to assume others don’t have the capacity to care for them. For example, you might write someone off (such as your current husband) as unemotional because you aren’t giving them much material to work with except your silent tears.
This is a time for you and everyone around you to stretch emotionally to offer you the support you’re desperately needing. Connect to the common humanity that’s all around you by letting others, especially your husband and children, know how much pain you’re experiencing. They may not be able to change any circumstances, but you at least won’t be alone with the actual pain you’re feeling.
You have tremendous depth and capacity, but we’re all completely defenseless against emotional isolation, so that’s one area you can’t solve privately on your own. You’ve made tremendous sacrifices to get your daughter the care and support she needs, and I hear how tired you are. The way forward may not include many adjustments to this very challenging trial, but expanding your circle of deep emotional support with loved ones can help you in ways you can’t help yourself.