Tips for disabled people--how NOT to drive away friends and visitors

[razz]

Tammy, is there a way for visitors and volunteers to handle those privacy issues that Rachel raised.

I know when you have rushed professional caregivers come in regularly asking about your BM, your vitals, stripping you down to bathe you, change the sheets or clothes, eventually the line between what is private and what is public breaks down. It becomes almost all that is discussed with little interest in the person.

How can the volunteers address their discomfort at this breakdown of normal barriers when they come in?

Freshstart may have some good ideas as a hospice nurse as well.

[Rachel]

Razz, just looking at this issue from the perspective of how the line between public and private gets blurred in a hospital setting or in a situation where there are a lot of nurses coming and going throughout the week is enlightening for me.

[Tammy]

If the person starts to show you their skin, wound, etc and you don't want to see it just say no thanks and cover your eyes or physically turn your back until they are covered again. Just like you would in any other situation. And if you don't mind, then look at what they're showing you.

[freshstart]

Rachel - this person needs a therapist - you were there so this person used you in that role. Their suffering is difficult, and your reaction is normal as you were feeling their pain via empathy.

This is a tough situation. But the sick person needs somebody to listen. The key is for the visitor to realize how small the sick person's world is becoming as they are stuck at home all alone with their pain.

I'm a psychiatric nurse. I am in situations like this all the time wirh patients. I've learned to listen and be present with them, without over identifying with their pain to where it feels like it's my own pain.

These situations cause us to recognize our own mortality in the suffering of others. It is a difficult thing, and I understand how it can be traumatizing.

However, if the sick person feels like they can only talk about happy stuff and can not be honest about their suffering, then the tables are turned and the purpose of the visit has become for the comfort of the visitor. The reason we visit the sick is to comfort them. Which means we might feel discomfort and pain in the process.

I'm rambling ... Just trying to shed some light. From 20 years of sitting with people in their pain.

Perhaps visiting the sick is a gift that some people have and some don't. Perhaps you should not have to take your turn in this. Your trauma is not good either.

ITA with what Tammy has said, wonderfully put. Hospice puts people through 5 8hr days of training to learn how to deal with all of the things you listed. I can't imagine doing it without training. The world becomes so small for a dying person, especially one who is suffering. Sometimes they can no longer muster up the energy to ask about you or no longer have the social graces not to complain. They are no longer reading the paper, they don't watch tv, they stop asking about their grandkids and cannot make small talk about Trump's latest actions. Remember they are doing the work of the dying and one of the steps necessary is to start to separate yourself from this world and focus on the next, or whatever their belief system is. So being so focused on the physical is normal. But add in mental illness and it's a recipe for disaster for an untrained volunteer.

It is totally ok to not be up for this with these type of patients. I saw many a co-worker have the souls sucked out of them til they had nothing left to give.

As far as private things go, I agree with the above. If you can, acknowledging the ravages their body has gone through is helpful to the person. Male patients would show me their stick figure legs and wink and say, "like my sexy legs?", when inside they were distraught that things had come to this point and they were in a lot of psychic pain.

[freshstart]

this is totally different when you are visiting your true friends who are disabled but not in a life threatening or very serious way. As a disabled person, I am pleased if a friend asks but after a short response, my disability is the LAST thing I want to talk about.

for visiting the sick who are not your friends, I believe training is necessary