How to help pt's and family members cope

Jenneu · Apr 9, 2005

chemo has failed. I find that simply saying "I'm so sorry" is what works for me, along with some eye contact. I also found that it is the patient oftentimes who has to comfort family and friends who are so upset about the prognosis that they don't really get a chance to deal with it. So I do a lot of listening since there is no pressure for the patient to have to comfort me.

J

JessicaInOr · Apr 11, 2005

Hi all,
I'm a cardiac nurse, so I have a decent background on what to say and what not to say to patients and their families as they are dealing with difficult diagnoses.
However, I am now in somewhat of a different situation. I am dating a man whose mother has cancer and has not responded well to chemo (currently she is taking part in a clinical trial). Prognosis not really known at this time. To make a long story short, the family doesn't seem to be handling the situation all too well (emotionally). Is there any practical advice you can give to me on how to help/what to say? My boyfriend is a constant ball of anger. Nothing I say seems to be right... Adding to the situation is that this is a long-distance relationship. So "just being there" and "helping around the house" aren't always possibilities.
Are there any tricks of the trade you've discovered when helping patients or family members deal with a diagnosis?
Thanks so much.

I fully understand what you are saying but honestly, from my POV I don't think there is anything you can do or say.

Sometimes I have found that the only thing I would be able to do to help someone is to fix the problem. With some dxs there is nothing you can do to fix it. Nothing changes reality and one thing I think people in all professions forget is that family members go through the first four of the five stages of death. The patient finally comes to terms with it and they are able to come to the point of acceptance. Loved ones rarely honestly come to accept it. They are hoping for cures and miracles long after the patient has come to terms with reality.

I'm dealing with this regarding my own Dad right now. He got his 'supposed' clean bill of health a couple of months ago but I knew in my heart that wasn't true. I know the signs, then there is also the infamous nurses intuition. I knew he wasn't going to be fit as a fiddle (as his idiot doc said) and I was correct.

Just this morning they finally came clean with him. He has four months, at best.

I'm honestly not trying to be mean or pissy here. But there is nothing anyone could say to me that would make me feel better right now. Nada, nothing. I need to go through my stuff and then things will work out. But the point is, I need my time and space. I need to be angry or whatever I feel. I suspect your b/f is the same. He needs to go through what he needs to go through. He needs the time and space. If he is angry, just let him be angry and don't take it personally if he happens to direct it your way. He really doesn't mean it. But when someone we love is dying not only do we each deal with it in our own way, we tend to want to find blame. The docs, the nurses, the family members, genes, something... anything. Then we change gears and react differently.

As for the ball of anger... lem'me tell you! I relate to that!! I am SOOOO angry right now I feel like I could put my fist through a wall. I could ... I don't know, I am just very mad right now. Not at any one person, I'm just angry. I treat people and make people better every bloody day and today I know there isn't a darn thing in the world I can do for my very own Dad. I'm so angry I just sit and burst out in tears for no reason.

Give him time. Give him space. If he blurts out something inappropriate, consider that he's just plain angry and that's okay. You might even catch him picking fights. Just try to grit your teeth and let him have his anger.

You know, there is a special bond between a daughter and her Dad. I think the same holds true for a mother and son. When you are an adult and your parents turn to you for something, you are happy that you are an adult and can do something for them for a change. With cancer, there just isn't anything. You feel so hopeless and stupid as a child with a parent who has CA. There is nothing to do and that adds to the anger.

If you can do it, hang in there and don't return his anger. If he pushes you away, he really doesn't mean it. He just needs to be angry for a bit. You know, I really think part of the problem with your b/f and people like me is that we don't know what to feel. How the heck do you deal with this? There is nothing nice or easy about any of this.

Above all else, just remember the anger really isn't about you. While it might be directed at you, that is because you are a safe enough person to direct that anger.

My apologies... I am rambling. If nothing else please take this from this post. If anger is directed your way, it really isn't YOU he is angry with. Instead he trusts you not to return the favor.

suehp · Apr 19, 2005

AzMichelle I am so sorry to hear about your Dad (((((hugs))))), and Anne07 I think Azmichelle has said all that needs to be said too, (((((hugs))))) to you too...

Grief manifests itself in so many different ways for everyone and I suppose the best tool you can have is to listen...

I have had a phone call this evening to say my Aunty is very poorly and it is a matter of time (see the thread "cant find the Primary") - and why am I on here you ask?? - well basically I am in denial that she is poorly, I am also angry that my uncle doesnt want visitors so I cant even get to say goodbye....my emotions are very raw at the moment and I dread the phone going....

I feel for both of you..(hugs) :kiss

JessicaInOr · May 29, 2005

AzMichelle I am so sorry to hear about your Dad (((((hugs))))), and Anne07 I think Azmichelle has said all that needs to be said too, (((((hugs))))) to you too...
Grief manifests itself in so many different ways for everyone and I suppose the best tool you can have is to listen...
I have had a phone call this evening to say my Aunty is very poorly and it is a matter of time (see the thread "cant find the Primary") - and why am I on here you ask?? - well basically I am in denial that she is poorly, I am also angry that my uncle doesnt want visitors so I cant even get to say goodbye....my emotions are very raw at the moment and I dread the phone going....
I feel for both of you..(hugs) :kiss

My Dad died 16 days after I wrote the post you replied to. So much for four months. :crying2:

The only peace I have from the entire ordeal was that when I flew home my Dad had a look of relief when I got there. His wife, my sister's evil stepmother really was trying to take care of him and she was absolutely doing her best. I don't fault her in the least. But she doesn't have the training and experience I do.

My Dad went from being a large, intelligent, executive type to a man wearing diapers and needing help with everything. He was humiliated and he felt he wasn't a man anymore. At first he was embarrassed and ashamed to have me help him with grooming, toileting, etc. His first reaction was that he was horrified that his youngest daughter would be changing his diapers.

After the first round of embarrassement he said he actually felt relieved, he was no longer embarrassed because suddenly having his grooming needs done was no longer painful. He looked at me and wide eyed ... he said I was really good at this stuff. Then he winked at me and told me he loved me.

He was quite surprised that having people take care of him didn't have to be painful. He said he wished he knew it could be this easy, he thought his wife was doing everything just right. I reminded him she was doing everything 'just right' but she didn't have years of experience doing these things and maybe I just have a few tips and secrets... nothing more.

It was such an unusual experience for me, I learned so much in those few days. The Saturday before he died he asked me how I was doing with all this, was I getting used to it? Was I accepting this new reality? I looked at him like he was nuts and said NO!!!! He smiled, put his hand on mine and said okay.

On Sunday he repeated the question and asked if I was getting used to what was going on. Again, I blurted out NO! This can't be happening, it's just happening too fast, no, I can't accept this. He smiled once again and said that was okay.

I got to thinking and realized I was being very unfair. How many times have we all had to gently tell a family member that maybe it is time to give the their loved one permission to go. Sometimes that's just what they need.

So on day #3 I approched my Dad and told him I had been thinking about this and maybe I was more prepared with this than I thought. After a great deal of thinking I realized that I was okay with this and if he needed to go, it was okay.

He looked at me like he always did, over his glasses, and he asked if I wasn't trying to fool my 'ol Pappy. Yep, that's exactly what I was trying to do.

I thought about it again and realized that sometimes you just have to love someone enough to let them go and that is what I told him. I told him that no, I would likely never be "okay" with this and I would never accept it but I did love him enough to let him go. Three hours later he died.

Coincidence? I really don't think so.

I couldn't fix what was happening but I could do other things for him. I was able to get his pain management changed to something that worked, I was able to help him with the basics of life and it didn't cause pain, I was able to give him some peace and comfort. What else matters at that point in time?

So Sue, we all have something to offer as family members. You'll find a way to do something to help your aunt. Maybe she won't know until after she dies but that's okay, it really is. People such as your uncle are just doing the best they can during a horrific time. Hindsight is always 20/20 for a reason. Thus, you have to do what you can before hindsight has the opportunity to kick in. If it helps any my Dad didn't want to see people. He didn't want them to remember him as he was. Many people that came to visit he didn't want to see them. It was too hard on him. People wanted to say their good bye's but they were unable because my Dad didn't want to say good bye. He wasn't ready himself! I have hunch people feel that I refused to let them see him but that wasn't true. He didn't want to see them. It wasn't because he didn't love them, it was because it was too hard for him.

The people he did want to see were people I wouldn't have thought he would want to see. A neighbor I grew up with. He's my age, he bought the house he grew up in from his parents. Bruce brought my Dad fried mushrooms, he and his son went hunting for them just for my Dad. It was the last bit of food he actually enjoyed. It was the hardest thing I have ever witnessed, people coming by to say their final goodbye's. They were saying good bye to my DAD!! MY Dad!! How could this be? It was so surreal.

But, it is finally over and I believe my Dad is at peace now. No more pain, no more anything bad. You know?

I'm so sorry you have to go through this but I have learned that you really don't know what is going on behind that closed door where your aunt is. Maybe it isn't fair, I don't know. But just keep her in your thoughts and your heart, maybe that's the only thing you can do.

Take care!

leslie :-D · May 29, 2005

((((michelle))))

you're right- during grief, shock, denial, bewilderment, there are no words that can comfort you or your loved one.

i'm so sorry about dad.

you did what any loving daughter would do- you cared for him, at his bedside, and cared for him w/much love & tenderness.

that was extremely courageous of you to give him permission to go.

as an old hospice nurse, i don't know how many times i've gently urged families to give permission to let them go as it's highly anxiety provoking for the patient.

on around thanksgiving of this past yr., my mom was dx'd with aml and died 4 weeks later. i spent so much time in va where she was and did all of her am care but she was in the icu and unconscious and on a vent. she would have been horrified to think i washed her but i had to ensure she was presentable looking. per my mom's dh, he basically had me make all medical decisions and i opted to stop all treatments since she was septic, a wbc under 10 w/a 104 temp- and if she did awaken (highly unlikely) she would have only had wks to live- her greatest fear in life was dying and my biggest fear was her awakening, even if it was a one in a million chance.

so much to the dismay of the 2 oncs, a mso4 drip was started, all vasopressors, abx, tpn were stopped and she was extubated.

i was bending over the side rail so the nurse and i scooted her over to one side of the bed and i crawled into bed right next to her. the morphine worked magically as she gently snored and i just held her close, kissing her face, stroking her hair and quietly talking to her. 55 minutes later she took her last breath.

i share this w/you because there was nothing anyone could say that was comforting. there were several loving gestures from all sorts of friends/family but still, not comforting.

the only thing that comforts me is that i was there for her,giving her everything humanly possible. i fought w/the md's about better pain mgmt..they were afraid of resp depression; i had to remind them she was on a damned vent and they could control the settings. so they compromised on a fentanyl patch with prn ativan. i fought for scheduled ativan- even though she was unconscious, her eyebrows would still knit together when i gave her mouth care- the docs fought me against the scheduled ativan as it could lower her bp- again i reminded them she was on dopamine so increase the damned dosage. with much determination, i got her comfortable. none of my siblings were there, just me.

so again, i will always thank God that i was there for mom for i believe it was He that provided me this opportunity to help my mother die in peace.

and that's what you did- what a gift.

and your dad knew what a gift he got when you were there with him.

pm me anytime. i can very much relate to your feelings.

with affection,

leslie

LydiaNN · May 29, 2005

The only thought that I have to add is that even though your bf may not find comfort in your presence (when you're together) and your communication (when you're apart), after his Mom is gone and he is working through his grief, he will remember that he had you to talk to and hold on to, It may seem that you can't do anything to help at this time of extreme sorrow and anger, but you are providing your bf with a sounding board and safe harbor that will mean the world to him later.

JessicaInOr · May 29, 2005

and that's what you did- what a gift.
and your dad knew what a gift he got when you were there with him.

Leslie...

The issue that really hit me was his gift to me. This is hard to explain but when I first went to do personal care he was absolutely horrified. He even said there was nothing he could think of that was more humiliating than Michelle, his youngest daughter helping him pee. He felt he had reached all new lows in his life. I understood what he was talking about, in a father/daughter relationship, well at least in ours, he felt it was his job to do for me, not my job to do for him.

I really wanted to tell him something but I knew he wouldn't understand so I didn't even bother but with all sincerity I have to say that it was truly an honor to take care of him. I'm not just saying that but I really felt it (and still do) because it *was* an honor. It's just something that is hard to put into words. He felt so bad that he couldn't even pee by himself. Between his prostate problems, being weak, and a host of other issues he needed help to urinate. I told him... Dad, I've been doing this for a long time. You'd be amazed at what I can do to help and never see a thing. Just give me a chance.

This caused so many problems with my sisters and their evil stepmother. (I don't claim her!) My Dad had a UTI previously and was still on Pyridium. When I went home his UTI was gone but he was still taking Pyridium tid. I asked why and he said he didn't know what it was for. The bottle said to take one three times daily so he was. There were lots of little issues like this and I started cleaning things up. I got rid of drugs he didn't need anymore. Then there was the issue of pain management. He was on Oxy C 20mg q8h and Vicodin 10/500 q4-6 prn for breakthrough pain. The drugs couldn't do much to help him if he couldn't keep them down. He was bleeding internally and about every 15-30 minutes he was vomiting about an ounce of black blood. He wasn't keeping the pain meds down. No wonder he was hurting! So I got his doc to write for Duragesic. Nobody thought to clean his dentures or mouth. The evil stepmother just handed him mouthwash daily. That's not enough. She wasn't being lazy... not by a long shot. She honestly was doing her best but that doesn't mean there wasn't room for improvement. The first time I brushed his dentures for him when he put them back in his mouth he sighed and said that was soooo much better.

Instead of realizing I was just doing little comfort care things my family decided I was just showing off and trying to make them look bad. Should I have let him be in pain and be dirty?? Would that have been better? Nothing I did was right. Obviously I had no care or concern for my Dad and his comfort, everything I did was just to show my family how stupid they are. They just make me so angry.

After he started feeling better he realized I was doing things that did make a difference. There were times he just wanted to be alone, he didn't want anyone around him. I respected that, the man was preparing to die for goodness sakes. Of course he would want some time alone. I gave him his cell phone and told him to call on the house phone if he needed anything. That way he didn't have to yell (which he couldn't do anyway) to get someone's attention. If he would call my sisters would go see what he wanted. If he wanted pain meds, for example, my sis would start to give him one and he would refuse. He told her to go get Mish (me), he wanted Mish to give him his meds. It had nothing in the world to do with anything my sis was doing wrong, he just knew that I knew his meds and after I changed things, he felt better. So of course my sisters were angry with me.

My Dad was in the military many many moons ago. He earned the right to have full honors at his funeral. He has told me for years he really wanted that. During the plans for the funeral I told the funeral guy I wanted military honors. My sisters and their stepmother veto'd that and refused. I asked why, the stepmonster said it wasn't necessary and she and my sisters had already decided they wouldn't do that. I explained quite clearly that I didn't care if my Dad was buried in a pine box or if he was buried in a sewer, they had the right to make any plans they wanted and I wouldn't fight them but he *was* getting military honors. This was actually a huge fight. The only thing my Dad asked for regarding his own funeral and they were refusing. He earned it and he would get it, period. I stood my ground and wouldn't budge. He ended up with a beautiful ceremony, a very pretty casket, and he did get military honors. Amazing that it took a battle to get it.

At the wake lots of people were getting up in front of the church and telling fond stories of my Dad. When it was my turn I told about what I wrote above in an earlier post about how I really believed he was waiting to die until we were all okay with this. He was waiting until we had a chance to accept what was happening. What kind of man does it take to endure suffering and pain in order to give his daughters more time to accept the reality of what was happening? I'll tell you, it takes a fine man! Later I was chastised because I was trying to turn the wake into something else, something where all the attention was focused on me. ???? No I wasn't, I was referring to what a huge heart my Dad had.

Before my Dad even died my sister was going through the house looking for financial papers and wills and such. She said she wanted to know what she was getting out of all this. What?? I couldn't believe she was doing this, he wasn't DEAD yet! Those days before he died were the last days Kim, my sis, would ever have to spend with her father. Instead when she was there the only thing she cared about was looking for financial papers. But those times were actually rare, instead of spending his final days with him all she wanted to do was to play with our great niece and nephews. She has a life time to spend with them, she had days left to spend with my Dad. I'm sure he realized what was happening, how sad he had to know that.

My Dad was quite wealthy. So now there is the estate to deal with. I'm in no hurry to get it done, I don't even care. Actually, I hate the whole process of estates. The attorney sent me some papers to sign to get things going and after I had them exactly one week my sisters were threatening to sue me if I did not sign them as they want their money and they want it now.

I have been reminded of why I just hate family. Honestly, I just can't stand them. I was also reminded of why I moved 1500 miles away 20 years ago, had I gone much farther west I would have had to leave the country. That's actually another issue I seriously considered 20 years ago.

I am fully aware that people grieve in different ways and I shouldn't be judging them but I can't help it. All they care about is money, to h*ll with my Dad, they want their stupid money.

Sorry for the rant, it's just that when I get to thinking about this whole thing it makes me so angry I can't quit writing!

JessicaInOr · May 29, 2005

...that was extremely courageous of you to give him permission to go.
as an old hospice nurse, i don't know how many times i've gently urged families to give permission to let them go as it's highly anxiety provoking for the patient.

I realized that the advice I have given others was very appropriate in my own case, it was the only thing to do for him at that point in time.

on around thanksgiving of this past yr., my mom was dx'd with aml and died 4 weeks later.

I am *so* sorry to hear this. I guess we both know how the other feels.

BTW... I decided to start a new post. I didn't want to combine my thoughts on your experience with my previous rant.

i spent so much time in va where she was and did all of her am care

Ahhh, so you understand the 'honor' aspect of caring for a dying parent.

but she was in the icu and unconscious and on a vent. she would have been horrified to think i washed her but i had to ensure she was presentable looking. per my mom's dh, he basically had me make all medical decisions and i opted to stop all treatments since she was septic, a wbc under 10 w/a 104 temp- and if she did awaken (highly unlikely) she would have only had wks to live- her greatest fear in life was dying and my biggest fear was her awakening, even if it was a one in a million chance.
so much to the dismay of the 2 oncs, a mso4 drip was started, all vasopressors, abx, tpn were stopped and she was extubated.

I'm so sorry you had to experience that. That must have been very difficult but I applaud you for doing what was right for *her*. It's much harder to do what is right and let go vs. keeping someone alive so it will be easier on us.

i was bending over the side rail so the nurse and i scooted her over to one side of the bed and i crawled into bed right next to her. the morphine worked magically as she gently snored and i just held her close, kissing her face, stroking her hair and quietly talking to her. 55 minutes later she took her last breath.

(((HUGS)))

I have a question for you. I really wanted to do the same with my Dad but he was in a lot of pain and I was afraid I'd hurt him if I did that. Did it feel good to cuddle with your Mom one last time? You know, like when you were a kid? Or were you the one doing the comforting? I realize your Mom was well medicated but you know she had to know you were there for her. Human touch can reach beyond Morphine.

i share this w/you because there was nothing anyone could say that was comforting. there were several loving gestures from all sorts of friends/family but still, not comforting.

Very true. People sincerely try to be comforting at a time like that but there just isn't anything.

i fought w/the md's about better pain mgmt..they were afraid of resp depression; i had to remind them she was on a damned vent and they could control the settings. so they compromised on a fentanyl patch with prn ativan. i fought for scheduled ativan- even though she was unconscious, her eyebrows would still knit together when i gave her mouth care- the docs fought me against the scheduled ativan as it could lower her bp- again i reminded them she was on dopamine so increase the damned dosage. with much determination, i got her comfortable.

I don't understand this, I never have. Why is anyone concerned about a low BP in a dying person? Soon they will have no BP at all. This sounds just horrible and I know that but sometimes I hope these docs (and nurses for that matter) are refused pain meds someday when they are in that position. If pain is such a great thing, fine! Let them experience it and let those with compassion die in peace and pain free. It is sad that in this day and age dying people are denied pain management.

none of my siblings were there, just me.

I am so sorry for you. During times like this you need a little support. It's so hard to be in your position.

I have a firm belief in the old saying that what goes around, comes around. What we put out in this world returns to us. If we are mean spirited, heartless, creatures of a human being that is how we will be treated. I also have a firm belief that for the most part, how we treat others is how we will be treated when we are in that position.

pm me anytime. i can very much relate to your feelings.

And I offer the same. Matter of fact I will PM you with my email address. If you ever need anything, please feel free to write anytime.

(((More Hugs)))

leslie :-D · May 29, 2005

but michelle, me being the only sibling there, i realized immediately after mom died, is THAT was the gift from God.

had my other siblings been there, or even her dh (who was too distraught to be in the room w/her), i would have never have had the opportunity to be alone w/her and hold her as i did....

50 minutes after all txs stopped, i noticed on the monitor that all vs were steadily decreasing and 5 minutes later she was gone. i just stared at that monitor with the flat line and watching the flashing "asystole" when the nurse gently touched my shoulder. i got oob and still just stared, very shocky. then the tears just flowed and i kissed her beautiful face one last time.

so to answer your question, i was holding her, comforting her, loving her.

my dh who had been w/my stepdad said that when he was about to enter the room, he saw me in bed w/mom and it made him cry, that it was such a beautiful,beautiful picture of me holding and loving her. we needed that closure as our relationship had been volatile, but never hateful. and that was the gift that God gave me.....all part of His plan, for her and i to be together. so no, i do not begrudge my siblings. at first i did but working in hospice, i know too many family members that stay away because it's too painful.

and i know what you mean about the estate- makes me sick too.

one of my siblings brought up mom's estate and i said i couldn't care less.

sometimes people turn into vultures. and no one or nothing is going to change that. you just rise above it.

i remember when my grandfather died and we were all in nyc at his house.

my father said to take what you want and i sat there, watching my siblings claim this and that.

the only thing i took was his flannel shirt that he lived in- i could still smell him on the shirt. and for some reason, i took his expired bank card w/his signature. meanwhile my sisters have some lovely furniture pieces and good for them. but i refused to be a part of the vulture crowd.

so no michelle, i don't begrudge my siblings at all. if they were there, i would have never accomplished what i did, just my mom and me.

i only hope that she was aware of my presence as i held her during her final hour....

leslie xo