Understanding the Mental and Physical Challenges Being Experienced by Caretakers of Brain Aneurysm Patients

Family caregivers of brain aneurysm patients face several mental and physical challenges. These challenges include feeling frustrated, being unaware of the distress they’re experiencing, needing professional help, experiencing a wide range of intense emotions, not having many outlets to express what they feel, difficulty sleeping, difficulty in understanding the situation, worrying about how to give the right kind of help, having to appear strong in front of the patient, being concerned about losing connection, experiencing guilt, feeling alone in spite of having a support group, and struggling with daily uncertainties.

1. Family caregivers can be frustrated and be unaware of the distress they’re experiencing

  • According to the Brain Aneurysm Foundation, “It is not unusual for a family member to experience emotional distress at any phase of the rehabilitation process. Often, the family member is unaware of the distress because the primary focus is always on the survivor’s needs.” Family caregivers may find it difficult to explore and express their own feelings if the brain aneurysm survivor is present.
  • According to the Joe Nikro Foundation, a foundation that helps brain aneurysm patients and caregivers, “One of the major issues surrounding carers is that of frustration. If your loved one is no longer responding to you or to other things in the way that they used to, if their attention wanders, if they fulfill tasks poorly, have mood swings, or simply grind you down with their needs, frustration swiftly mounts.”

2. They also need professional help

  • During a family crisis such as when a family member is being treated for a brain aneurysm, caregivers of brain aneurysm patients also need professional help.
  • A wife of a brain aneurysm patient shared, “At about the 6-month mark of my husband’s recovery, I could not stop crying. He did not know why and I could not tell him. It helped to get counseling and ultimately an antidepressant, because I have to carry us both and I needed help.”

3. During and immediately after the rehabilitation, family caregivers experience a wide range of emotions

  • Family caregivers of brain aneurysm survivors experience a wide range of intense emotions during as well as immediately after the aneurysm. These intense emotions include worry, fear, anger, shock, hopelessness, and frustration.
  • During the rehabilitation process, these intense emotions may continue to be present and may add to the caregiver’s suffering. Grief, depression, anger, and worry can pile up on top of the caregiver’s fragile emotions.
  • The caregiver might feel guilty and ignore their feelings because they are more concerned about taking good care of their loved one.

4. Family caregivers may not have many outlets to express what they feel

  • A daughter of someone who had a brain aneurysm expressed her sentiments in one of the support group forums of the Brain Aneurysm Foundation. She said, “Literally just need to get these words out and I don’t have many other outlets. My mom had a ruptured aneurysm 52 days ago. She’s in a different state and due to COVID restrictions in place at the hospital I can’t visit.”
  • Another family caregiver of a different brain aneurysm patient said, “I’m just so sad and wish I had someone here to talk to.”

5. They can have difficulty sleeping

  • That same daughter also said, “Some days seem hopeful, some days are the darkest I’ve known. I don’t understand what’s happening despite understanding what’s happening if that makes sense. I’ve seen my mother twice via FaceTime and she shows no recognition. She’s awake(ish) for a few minutes on a good day and I just want to know how to feel. Is she going to come out of this? Is she going to know who I am? I don’t expect an answer to any of these because I know no one knows but I hate this. I hate that I don’t sleep. I hate that this consumes me. I hate that my mom is lost.”

6. They struggle with understanding the situation

  • A child of a mother who had a brain aneurysm said, “The PT told me she was barely doing her therapies. They have heard her say very little. Others described her as lethargic and doing nothing. I am so perplexed after she had five consecutive days at the hospital where she was talking and responding to everything. I do not understand what is going on. Perhaps a result of a new medication? She just simply doesn’t want to talk to them? She’s depressed? Could she really have five consecutive days of small progress and then go back to nothing days after leaving the hospital? I am so very frustrated with this whole process.”
  • This daughter added, “How do I get someone to meet with us to go over her brain scan and explain it to us? We NEVER got an explanation of her injury or what her prognosis might be. I only had two conversations with the neurosurgeon. The first was the night of her aneurysm. We were able to talk to him in the ER and he explained the procedure he was going to do to put the drain in her brain. The second was maybe a week later, where he said that things were stable and no one really knows what the effects will be. He never indicated she couldn’t recover from it. I need someone to pull up her scan, sit me down, and say – see this? This is X part of her brain, which is responsible for X. The neurosurgeon who did her clipping was out of state since she was flown there. I need to find someone here (Georgia). Who do I talk to – a neurosurgeon, a neurologist… some other type??”

7. They are worried about how to give the right kind of help

  • That same family caregiver also said, “If I were to bring her home, how do I find a home care company that specializes in brain injuries? I did find one local, but they do not work Medicare, so they are not an option. Maybe I am just being stubborn, but I just don’t believe that she cannot get any better than where she is right now, especially after she was talking to us so recently. But I worry if I don’t get her the right kind of help, I will be dooming her to a life of nothing.”

8. They try to appear strong in front of the patient

  • A daughter of a father who has a brain aneurysm said, “I am trying to be as supportive to him that I can without just breaking down.”
  • As they are in the middle of the recovery process, this daughter also said, “I would do anything I could do to help him. I’m trying to stay strong for him and my boys, but I’m quietly falling apart. I’m so scared.”

9. Spousal caregivers are concerned that they may have lost connection with their spouse

  • A wife of someone who had a brain aneurysm said, “After 3.5 months in hospital, my husband has survived a stage 4 bleeding aneurysm, pneumonia, and bladder infection. I was told he had very little hope for survival from the surgeon but was put in long term care and is now medically stable. He is now sitting up 2 hours a day but has a bad bed wound. He shakes hands with people and gazes endlessly at his only son. I feel though friends and family don’t, that my hubby and I have lost connection even though I kiss and hug him and rub his body with cream every day. I won’t give up hope but think he maybe does not know me.”

10. Spousal caregivers experience guilt when a relative blames them for not letting go

  • That same wife also said, “I am now living with the guilt from my brother-in-law who believes I should have let my husband go, however when I ask him how he tells me that is my decision.”

11. They can still feel alone in spite of having a great support group

  • A husband of a brain aneurysm patient shared, “Being the responsible person beside the ill person is very difficult. I had a great support group in family and friends–the friends mostly because of church fellowship. But at times I still felt alone, because none of them were experiencing what I was.”

12. They struggle with the experience of uncertainty

  • One husband said, “My wife’s aneurysm experience was absolutely the most difficult time of my life. She has often said it was easy for her, because she was unaware of what was happening. She was unaware of almost everything for a month or more. Rehab was a big challenge, but even then she never experienced pain. So in an ironic way the caretaker may sometimes suffer as much or more than the victim of the injury. The caretaker has to observe everything, thinks about possibilities, is aware of what the doctors are doing to the patient (necessary, of course), and must live day in and day out with uncertainties.”
  • He also said, “Uncertainty is one of the hardest hurdles to handle.”
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