The View from the Other Side of the Bed: The Family Member

About how I viewed things during a time when a family member was critically ill.

The View from the Other Side of the Bed: The Family Member

In November of 2016, my mother-in-law suffered a hemorrhagic stroke. She had already suffered an ischemic stroke six months prior and had been started on Plavix to prevent another ischemic event.

We were under the belief that she suffered the bleed first then experienced a fall in the shower area of their apartment; the reason being is that she didn't remember the fall or ever performing the tasks associated with her bathing routine and she was not wet. I was called to their downstairs apartment in our house by my wife who found her mother confused and almost incoherent.

When we realized that there was something wrong, we took her to the nearest hospital that was less than five minutes away from our house. It was only after the CT scan that we realized the severity of her situation. With the CT scan showing a 2 cm hemorrhage in her brain, she started to experience not only slurred speech, but increasing somnolence along with nausea and vomiting which we found later had contributed to an aspiration pneumonia.

The decision was made to transfer my mother-in-law to a higher echelon of care by way of life flight; although the hospital we were at did a great job of stabilizing her, she needed to be at a place where comprehensive neurological evaluation and treatment were available. The following hours which stretched into days proved to be very difficult for my family as my mother in law underwent emergency surgery to remove the hemorrhage and blood clot. She was on a ventilator, a feeding tube, a urethral catheter and a fecal incontinence container for a number of days.

In those number of days, the power of attorney for healthcare or POA, who is my wife, was faced with the difficult decisions that were to be made by any POA should the patient not regain consciousness or regain a limited fraction of their cognitive and/or functional abilities. She was faced with the decision of withdrawing life support if my mother-in-law did not improve within the two week time frame typically given for ventilated patients. During this time my mother-in-law did not begin to regain consciousness. As the day drew near for that decision to be realized, we walked into the ICU only to realize that my mother-in-law, on that morning, started to not only regain consciousness, but she was following simple commands. We were quite relieved to say the least.

In the following weeks came the work of assessing her neural status, weaning her off the ventilator and assessing her swallowing after the endotracheal tube was out. It was naturally determined that she needed a Peg tube, extensive rehab for speech as well as occupational and physical therapy.

My mother-in-law is now in an extended care facility where she is still working to recover while receiving physical and occupational therapy. She has progressed in her swallowing and has been started and advanced in her diet to a dental soft; it will be soon that she may be able to have the Peg tube removed. We are keeping her in the extended care facility until she can improve to the point that she can consistently assist with her activities of daily living of which she is continuing to make tremendous strides by the week.

As this whole ordeal has been trying on the entire extended family, there are certain lessons that have been learned that I believe are worth sharing to all both those that are in the nursing profession as well as for those that are family members of those who are struggling with health issues. The first is that the person who is left in charge for making the decisions for health care of the patient, whether the POA or the next of kin, need all the support that can be given them as not only the burden of the responsibility of making life or death decisions can be overwhelming so can the consequences of those decisions as well. The second thing to give note to is that for those in the nursing profession, it means the world to not only the patient but the family as well when the nurse explains what is going on with the prognosis, treatment and care of a loved one; the nurses where my mother-in-law were following the incident were not only competent and caring, but seasoned sensitivity with the truth in their sharing of information about my mother-in-law. The last thing to consider is that it is never too late to consider long term care insurance; this is especially true for those of us that are middle-aged and approaching those years in which long term care may be a viable alternative to fund long term care.

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justjamesthenurse

About justjamesthenurse, BSN, RN

24 years nursing experience. Varied experience in ICU, cardiology as well as writing for various journals and continuing education.

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Specializes in NICU, PICU, PCVICU and peds oncology.

My experience began on the other side of the bed, with my son being critically ill in the PICU for several weeks when he was 5. The details of that situation can be found in a number of my other posts so I won't elaborate here. What I want to say is that there definitely is an art to communicating the reality of a patient's condition and the likely outcome. Because I work in pediatrics, most of the discussions I have are with parents, which is very much like speaking with the person holding a POA. They're making choices and decisions for someone they love and are responsible for. If we don't give them the benefit of our education and experience, we make it very hard for them to feel confident they're doing the right thing. As difficult as it is to tell someone their mother/father/child/whomever is unlikely to make a meaningful recovery, the sooner that possibility is made real for them, the better. That way, realistic expectations can be set and unpleasant surprises are minimized. Having said that, sometimes people will simply refuse to believe what you say. But it still should be said.

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Specializes in Specializes in L/D, newborn, GYN, LTC, Dialysis.

I am so sorry for all your family has been through. How harrowing! Glad you felt the nursing care was top notch.

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Specializes in Family Nurse Practitioner.

You pretty much summed up my job daily. Palliative Care provides support, pain/symptom management, and care coordination. We take all the specialty pieces and put that into the big picture for the family. It can be overwhelming with specialists all coming in but only handling their organ (puzzle piece). The challenge is getting the physicians to consult us so we can help from step one. We are not Hospice although we definitely do refer to them.

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I always thought that palliative care was tied into or was part of hospice. Our family in the last 2 years have lost my mil to an ischemic stroke and 3 other aunts from different ailments. We found my mil in the garage where she had laid for at least 5-6 hours. Won't go into details but it was obvious that she wasn't going to make it. The doctors for days would not tell the family that this was going to be it. Different doctors came in to talk about their body part and a very arrogant doctor came in and put an ng tube in for feeding. We needed to have someone state the obvious and put it into a big picture. Since I am an rn I tried to fill everybody in on what's happening but it's not my place to tell them that she was going to die. Same thing happened with other aunts. I think the doctors must just be giving the family a few days until they break the news? But in the meantime, for example, p.t. came in to do therapy on my aunt that died the next day. Said no one told them it was dced. It just made everyone think that things were not coordinated very well. I have left out a lot of details but my point is that I think every critical care patient needs a coordinator to put all the pieces together for the family so that they can make an informed decision they can live with. Having some doctors come in and give encouraging information and then other doctors coming in with discouraging news has families on an emotional roller coaster.

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Specializes in Gastrointestinal Nursing.

Yes, being on the other side of the bed is very difficult. I try to remember the angst that family is going through trying to make the right decision for their family member. It is never easy, and trying to do what is best and making everyone happy is impossible. Thanks for your article

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This is why I hate plavix and elloquis. They are deemed such a great alternative to Coumadin when in fact, they are worse. There is no reversal agent, so when somebody falls and starts bleeding, it's harder to get a hold of.

The FDA should have never have let dangerous blood thinners on the market without reversal agents to go with it. We see the effects of this everyday in my facility.

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