Friend's Dad is Dying of Emphysema...
September 16, 2013 6:37 PM   Subscribe

My friend's dad is dying of emphysema. I'm not sure what stage he's in. I don't think he's ready to die yet, but he's not in good shape at all...

What makes situation even worse is that he's self-destructive (drinking heavily, against his doctors orders and not always taking his medication). It's been really hard on her.

I was wondering if anyone here could recommend any helpful literature or resources for people dying of emphysema or for people taking care of a dying/self-destructive parent.

I really appreciate your time. Thank you.
posted by ifranzen to Health & Fitness (12 answers total)
I don't know off hand, but I recommend finding a hospice or a hospice worker in your area. Maybe your friend's dad's doctor can direct you to one?
posted by Leontine at 7:21 PM on September 16, 2013 [1 favorite]

Seconding Leontine's comment. If your friend can talk with someone who works with dying people it will make things much, much better. She can check with hospice facilities or go to a local hospital and speak with a grief counselor - if there's any cost at all, it will be minimal, and it will do a world of good. If her Dad is dying soon or slowly, her relationship with him will be improved many times over when they can communicate better and that's what the counseling will help with.

Please help her find a counselor as soon as possible, because it's important, especially since she's focused on his "self-destructive" behavior - that's an exercise in futility that can only cause more grief than is necessary. By the time a person is as sick as her father is, there's really not much point in trying to change his lifestyle - this is what she needs to understand and accept so she can spend what time he has left just enjoying him without trying to "fix" him. You're a good friend for trying to help.

Very sorry for your friend and her Dad. I hope he gets hospice care because they'll make his death much easier.
posted by aryma at 7:57 PM on September 16, 2013 [3 favorites]

Is she his primary caretaker? Is he living at home with her? Is he able to get around on his own, get out of bed, etc?

Is he on oxygen? She needs to understand how the oxygen works and what dangerous conditions it can create. For example you can't use petroleum-based personal care products (many skin lotions, lip balms etc) if you're using oxygen, because they can cause a fire. She should read and understand all the safety info, especially if her dad may not be able to internalize them. She should also learn how to adjust the flow of oxygen if it's needed, and other maintenance stuff about the oxygen system.

Home hospice is really great and they can answer a lot of questions like this. It usually gives you access to a 24-hour nursing phone line, among other help (the 24 hr nursing line is great because if something really scary happens, she can call them instead of calling 911, which means much less chance of unwanted medical interventions). When the person is really close to death, hospice can help the caregiver know what to expect, and how to handle it. Often a person is eligible for hospice if their doctor will sign a thing saying there is no reasonable hope of curing their underlying disease, and they have under 6 months (or some similar number) to live.

If she is the main decisionmaker/caretaker, she may want to be thinking about discussing end-of-life documents like: living will/DNR orders; powers of attorney/health care proxy; getting practical info like where his will is stored, passwords to key accounts, keys, anything like that; where and how does he want to be buried/other funeral plans, does she have the contact info for people that should be notified (far-flung relatives, his old friends).

These things are awful to face, and I'm so sorry she is facing them.
posted by LobsterMitten at 8:07 PM on September 16, 2013

When a loved one of mine was dying of the same thing, a difficult part was trying to figure out whether they were feeling poorly due to lung function problems, or something else, and hence when to call the ambulance. In case your friend's father doesn't already have one, these days you can buy a pulse oximeter, which measures the oxygen saturation level in the blood which can be an indicator of how serious breathing problems are, for a few bucks at many pharmacies.
posted by XMLicious at 8:08 PM on September 16, 2013 [1 favorite]

Also, if he can get into hospice care, they have social workers who can help walk him or her through a lot of the paperworky end of life stuff as well as the emotional stuff.
posted by LobsterMitten at 8:17 PM on September 16, 2013

people taking care of a dying/self-destructive parent

Check into hospice care sooner, rather than later. Hospice doesn't have to be moving to a special facility, there are also hospice workers who do home visits.

Caregiver support groups and al-anon might also be helpful.

Nearly all the resources your friend can use will be local to them, in addition to the above look for an "area council on aging", meals on wheels, hospital social workers, volunteer organizations that provide help with cleaning and transportation. Some states have programs that pay a family member to be a caregiver in certain situations.
posted by yohko at 9:31 PM on September 16, 2013

My father-in-law has had two strokes in the last two months. While he is doing physical and speech therapy, my husband and his mother met with hospice care last week to discuss end-of-life planning. My better half has been emotionally wrecked with the thought of his dad passing. It was a great comfort to my grieving husband to learn what hospice care would mean for his dad when it is needed, as far as taking care of all comforts at home and granting his father dignity and companionship in his remaining time. This can include anxiety and other medication to help ease suffering that your friend's dad may currently be self-medicating. If you can find hospice caregivers in your area, I strongly recommend looking into it, as much for your friend as for your friend's dad.
posted by Blazecock Pileon at 9:36 PM on September 16, 2013

Response by poster: Is she his primary caretaker? Is he living at home with her? Is he able to get around on his own, get out of bed, etc? Is he on oxygen?

Yes, she is his primary care-giver at the moment although she receives some help from her sister.

I get the impression that he's barely mobile. He's still leaving the house for doctor's appointments so he is not entirely bed-bound but my friend says that he just watches T.V. all day.

I am not sure if he's on oxygen, but I don't think so, at least not yet.

Thank you all for your answers thus far, they are extremely helpful.
posted by ifranzen at 3:52 AM on September 17, 2013

I get the impression that he's barely mobile. He's still leaving the house for doctor's appointments so he is not entirely bed-bound but my friend says that he just watches T.V. all day.

I am not sure if he's on oxygen, but I don't think so, at least not yet.

I am a pulmonologist, and I wonder if you don't have a clear picture of what is going on.

Emphysema progresses slowly (particularly in former smokers) over many years, but may be punctuated by episodes of bad flare ups or pneumonias, which are potentially life threatening. Patients with end-stage emphysema almost uniformly require oxygen, and even at that point, depending on the frequency of exacerbations, patients can potentially live for many years with oxygen supplementation and appropriate medical care.

From the picture you paint, emphysema may only be one potentially controllable factor in his current condition, and addressing his alcoholism and other contributing factors (deconditioning, nutrition, other medical issues, depression?) to his decline might make a world of difference for him. Thinking through how to improve his quality of life really would benefit from incorporating the input of his doctors, who can provide more specific info on the severity of any medical conditions and their prognoses.
posted by drpynchon at 6:35 AM on September 17, 2013 [2 favorites]

Your friend may be enabling an alcoholic who also has emphysema. If that's the case, she's not his caretaker, she's co-dependant.

Al-Anon may be a good place to start, if nothing else, she will learn that adults will choose what they will choose and she doesn't have any control except what she's willing to do for her father.

If her father is living with emphysema, but is otherwise able to care for himself, she can decide not to be his caretaker. He can move into assisted living, or he can live on his own.

Your friend has choices, but she may be so overwhelmed right now that she can't see the forest for the trees.

So go to Al-Anon, perhaps you can go with her, and help her put her own oxygen mask on first.
posted by Ruthless Bunny at 7:55 AM on September 17, 2013

My mom, a 2-pack-a-day smoker for many years, died of emphysema a few years back. She made all the big decisions, and I think your friend's dad should too.

It's a really tough way to die, struggling for each breath. He's going soon. Let him go the way he wants.

Realize that he knows he will die soon, and don't deny the inevitable. Talk to him about what he needs to keep comfortable. In the abstract, it would be better for him to have medication for pain, but if he want's to spend his final month or so drunk, it's his choice.
posted by KRS at 12:36 PM on September 17, 2013

If he's not on oxygen, then as drpynchon says, it may be that he is not "that close" to dying - in other words, he may not be within a few weeks, may not be eligible for hospice, may even have years to go. (Who knows. But if *she* doesn't know, you could encourage her to find out.)

Does she go to his doctor appointments, so she can be sure he's reporting his symptoms to them properly and following through on what they order? Not getting enough oxygen would definitely make him have low energy and depression/dark moods, so she will want to keep on top of being sure he is using oxygen if he needs to.

It sounds like he is still strong enough to get around, use the bathroom etc on his own, which is great. If it gets to the point where he is no longer strong enough - she needs to know that a trained home health aide can help teach her how to do all the toileting/personal care stuff for him safely. (She can also learn to do that stuff by asking/observing nurses/PAs in the hospital, if he is hospitalized for a time.) It makes a big difference to learn the pro tricks of how to do that stuff, when he gets to that point.

If she is living with him and is the primary caregiver, she also needs to give herself permission to take breaks. If he needs 24 hr care, they should look into hiring someone like a home health aide to come in even for a few hours a day so she can get out of the house; it will make things much more survivable for her. She needs to think about her needs too, so that she can continue to do what needs to be done - it's a marathon, not a sprint, at this stage, and she should be sure she is taking care of herself. Friends like you can be a big help with this - also support groups in person or online, social workers assigned by hospice or hospital, etc can help too.
posted by LobsterMitten at 1:29 PM on September 17, 2013

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