Jumping to the Wrong Conclusions

On Grey’s Anatomy the other night, there was a family of three siblings waiting for their mother’s death. They seemed rather inconvenienced and one kept asking, “How soon will she die because I have a plane to catch?” At first the characters and the audience all thought, “How insensitive, how uncaring.” But as the scene and story progressed, the audience realized that we had jumped to conclusions. This was a devoted family that been flying in every time their loved one was at death’s door for a few years. And they had said their goodbyes and grieved, over and over again. They weren’t insensitive, they were exhausted. And at this point they thought they were just going through the motions one more time and she would recover. One sibling even said, “We love her and want to be with her when she dies.” And when the woman did die, the three siblings, sat down with her, cried and asked if they could spend more time with her before the body was taken away.

In watching this, I am reminded how easily we jump to conclusions about other people. We judge them before learning more about the situation. We assume the worst. I have been guilty of expecting the worst out of someone. I have learned to give people the benefit of the doubt. When I encounter someone who is being difficult or uncaring or rude, I remember that I don’t know what just happened in their life. Maybe they just found out that they have cancer or they just found out their spouse has filed for divorce. We just don’t know. So I ask, “Is there anything I can do to help? Is there anything I need to understand?”

I have also been guilty of being the overwhelmed caregiver who starts to care a little less. I hope that the nurses understood that caregiving is a long journey. And that when I visited my aunt, and could only bear to stay a few minutes instead of my usual longer visit, that they didn’t judge me but were compassionate. I hope they didn’t whisper behind my back. But, I don’t know. As healthcare professionals, we have to start from compassion and work from there.

Caregiver Burnout – You need to ask for help

I totally get what you are going through. I was a caregiver for many family members for many, many years. Sometimes I could manage just fine. But sometimes I was overwhelmed, exhausted and unappreciated.  I admire people who can take care of those who are sick or elderly or dying. But I also know it comes at a cost to the person doing the caregiving. So, let’s talk about some of the signs of caregiver stress and then discuss some ways you can ask for help. (Help is out there even if your family won’t help you.)

Signs of caregiver stress and burnout:

• Caregiver burnout is a state of physical, emotional and mental exhaustion

• Fatigue, stress, anxiety, and depression

• Accompanied by a change in attitude – from positive and caring to negative and unconcerned

Why do caregivers burnout?

• Don’t get the help they need, or if they are doing more than they are able, physically or financially

• May become ill themselves

• May feel guilty if they spend time on themselves

• May have to quit job to stay home

• May go bankrupt, both financially and emotionally

But there is another problem. By the time you need extra caregiving help, you are too tired, emotionally fatigued or depressed yourself to ask for help. You have to get a support team in place early on so you don’t have to get to your breaking point.

You may also be suffering from caregiver grief. Your loved one is not the person they used to be and you miss the way things used to be. Or the death of your loved one may be approaching and you are already grieving. This is called anticipatory grief and it is normal. There are grief support groups both online and in your community. If there are local groups you would like me to list on my resource page, let me know.

Help is on the way. There are people and organizations trained to help people in distress. The first person to ask is the patient’s primary doctor. Now you will have two possible reactions from the doctor. One may say, “I can’t help you with what is going on at home, or two, “I can order some home health support to get you through this crisis.” Now the doctor won’t be able to send in someone to take over for you, but they can order a visiting nurse, medical equipment, or someone to help.

Another person you can turn to is your local hospital’s social worker. This is a person who already knows what resources are available in your town and can give you a list of people you could call. There are also free organizations in most communities such as meals on wheels, dial a ride and volunteers with groups such as the American Cancer Society. You can also contact is your local senior center who may be able to provide services.

Have a kind and respectful day.

Got a question?  Ask Viki.  <!–coldform–>

How do I get my loved one on Hospice?

Viki,

How do I get my husband into hospice? He has cancer which has spread everywhere and his pain is not being managed. I have heard about hospice but I don’t know who to call. What can I do?

I am so glad you asked. To get a patient on hospice, a doctor has to make the referral to the local medical hospice. You have to ask your husband’s doctor, and it could be any of his doctors, to call hospice and set it up. Some doctors are not willing to put their patient on hospice because they don’t want to give up trying to save your loved one. So if your husband’s doctor won’t put him on hospice, ask another doctor you know. An ER doctor can also put someone on hospice.

After the doctor calls hospice, the hospice representative will call you later that day or the next morning. A social worker and a nurse will both be coming out to see your husband within 24 hours. They will evaluate what needs your husband has and what your family may need. If your husband qualifies for hospice, you will start receiving visits from other hospice staff, deliveries of medical supplies such as hospital beds, oxygen or bedside commodes. You will also be receiving medications to have available to take care of his pain and other symptoms. And the good news is that none of this will cost you anything.

The nurse will teach you about the new medicines and there is a 24 hour hotline you can call if his symptoms change and you need help. Every patient is different. What your husband will need may be very different that what my Dad needed. The good thing about hospice is that as patient’s health needs change, they can adapt the plan and continue to provide comfort for your loved one.

It may be overwhelming for the first few days as so many caregivers will be coming and going as they make sure your husband is well taken care of. Unfortunately, you do lose some privacy which takes some time to get used to. Don’t worry though, after a while you will get to know the hospice team and they will become your trusted friends. Most people find hospice to be a huge comfort to them as they can know that their loved one won’t be suffering.

Got a question? Ask Viki.

Family as Stakeholder

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder?

Each of these terms comes with assumptions about the family’s role in the healthcare setting.

If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice.

You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder? Each of these terms comes with assumptions about the family’s role in the healthcare setting. If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice. You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.

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