Sample from the “Kindness Reminder” emails - Physical Affection

People used to laugh at me when I would arrive at the assisted
living and dementia unit to visit my aunt and my dad. They both
were in wheelchairs but that didn’t mean they didn’t get their
hugs. I would straddle the wheelchair, bend my knees so I was
almost sitting on their laps and then put my arms around them.
When people are in wheelchairs or in bed, we tend to stop touching
them. For some people, physical touch is the most comforting and
healing way to receive love. You will get a lot out
of this too because when you hug someone, you get hugged right back.

You don’t have to hug like I did but make sure you are giving them
some physical affection. People are very lonely and isolated when
they become dependent on a chair or a bed. So, sit and hold their
hand. Put your arm around their shoulder. Pat them on the back.
Even if it is just a hug from the side, make the effort to connect
with them physically. For some people, crawling into bed and
embracing them works well too. If your loved one doesn’t like to
be touched, then of course, don’t do this.

IF you would like more ideas for how to stay in contact with your loved ones,
sign up for the “Kindness Reminder” free weekly email on the top right side of my blog at Kindethics.com

Have a kind and respectful day.

Are you treating your loved one like a “Third Party Patient”?

When you take your loved one to the doctor’s office, are you making sure that you are keeping the person with diminished capacity involved in the office visit? Too often, the doctor starts talking to the patient’s family or caregiver and forgets that the patient is in the room. Or sometimes we forget that our loved one is still here and begin to make all of their decisions for them. This is what is called, “Making the person a third party patient.” It is seems like the patient has become invisible.

I know this has happened in my family. Many times, my dad’s doctor would ask me in front of my dad, “How is your dad feeling today?” Then I would say, “I don’t know, ask him.” Or when I would take my aunt, who was in a wheelchair, out for lunch, people would say to me, “What would your aunt like to eat?” And once again I would say, “I don’t know, ask her.” We have to remind people that our loved one is still here. Even if the person has lost some of their ability to think and communicate, that doesn’t mean that he or she shouldn’t be included. Yes, the person with diminished capacity will not be making the final decisions about medical treatment choices, but the individual can still voice his or her opinion.

I know that it may not be easy and it may take more time, but we need to keep the person included. The person deserves our attention and our effort. Face the patient, ask the person questions and be patient when waiting for the answer. Explain to the person what will be happening to him or her in language that can be understood. It is important to include the person for as long as possible and when it is safe to have them have a voice in the decisions.

Have a kind and respectful day.

Stopping the “Third Party Patient” problem.

When a person with diminished capacity comes in for an office visit, do you remember to include the person in the conversation or do you take the easy way and just talk to the patient’s family or caregiver? Unfortunately, sometimes we forget that patient is still there and allow the caregiver to speak for them. This is what is called, “Making the person a third party patient.” The patient losses his or her own voice and becomes invisible to the healthcare professional and the caregiver.

I know this has happened in my family. Many times, my dad’s doctor would ask me in front of my dad, “How is your dad feeling today?” Then I would say, “I don’t know, ask him.” Or when I would take my aunt, who was in a wheelchair, out for lunch, people would say to me, “What would your aunt like to eat?” And once again I would say, “I don’t know, ask her.” We have to remind people that our loved one is still here. Even if the person has lost some of their ability to think and communicate, that doesn’t mean that he or she shouldn’t be included. Yes, the person with diminished capacity will not be making the final decisions about medical treatment choices, but the individual can still voice his or her opinion.

I know that it may not be easy and it may take more time, but we need to keep the person included. The person deserves our attention and our effort. Face the patient, ask the person questions and be patient when waiting for the answer. Explain to the person what will be happening to him or her in language that can be understood. It is important to include the person for as long as possible and when it is safe to have them have a voice in the decisions.

Have a kind and respectful day.

When your loved one said to do everything, but everything isn’t possible

Dear Viki,

My father said he wanted everything done but I can’t bear to watch his suffering. It seems like he keeps getting these terrible treatment, but nothing works. The doctor keeps asking me if I think it is time to put him on hospice but I promised my dad that I would make sure the doctor didn’t give up on him. My dad is the type of person who would never give in or give up. I feel like I am supposed to do what he says, but isn’t there ever a time when I should just say, “Enough”?

I am so sorry you are in this difficult position. It must be so difficult trying to balance doing the right thing for your dad with trying to respect his wishes. The first thing I would suggest is to make sure you get better pain management for your dad. He shouldn’t be suffering while he fights his disease. Ask for a referral to a palliative care doctor. This type of doctor can help you with the healing of your dad’s suffering and get the symptoms under control.

Secondly, what you are experiencing is moral distress. This is when you are doing the right thing but it feels so wrong. I would be suffering like you if I was in your situation. For some people, there is tremendous value in the fight to the end. Not giving up is more important than the hardships that are faced along the way. But this can put a tremendous burden on the person having to make the decisions and to witness the results of these choices. One of the most difficult situations is when the person asks us to advocate for things we don’t agree with. The thing you have to realize is that this is your dad’s life and health. This is how autonomy works. People have the right to make bad decisions. And you have to be brave enough to do right by your dad.

The answer to your question:

Here are your obligations. Since your dad told you that he wanted to fight to the end, then that is what you should try to do. But that doesn’t mean you have to keep choosing to do things that don’t work. If the treatments are only causing suffering and are not helping your dad, then you are not obligated to continue with that plan. You are supposed to fight for the medical options that will actually benefit him. Talk to the doctor and tell him it is time for a new plan for your father. Anytime a plan stops working, we have to face it and make a new plan. If there is nothing new that the doctor can offer, then that is when you can say enough. And now your work begins as you advocate to get him the best end of life care that you can. Change the “do everything” that you have been focused on during the fighting process into a “do everything” to fight for a pain-free and peaceful death. Don’t think of this as giving up, think of this as fighting for a new goal.

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