caring for sick

[anglefire]

Anyway I have been caring for a man with throat cancer who had a total laryngectomy.  Right now he is unable to speak.  He has other health issues too. In the beginning I would talk to his sister about his health and trying to get her involved with his care all I wanted her to do is help in taking him to drs appts. At first she was reluctant but I explained that family should be involved with medical decisions it was an act of congress but she caved in.  The gentleman finally had surgery and was in the hospital for 6 weeks.  He had one set-back after an other.  Then his sister calls me and asks if I will take care of him once he returns home if not I will have to move out and she will get someone else.  I told her that I would because most people can't stomach trach care.  The man got drift of that conversation and was upset with his sister.  I have been caring for him for 3 years prior and he doesn't want someone else.  I do not get paid for caring for him every time I do his trach care and look him in the eyes he is smiling.  I know deep in his heart he is thankful.  God bless him.  Since he has been home not once has his sister or brother called to ask how he is doing or does he need anything or come by to visit.  So very sad.  My own grown daughters are concerned about him.  I certainly hope that if I ever get seriously ill my own doesn't treat me this way.  I wished his sister would come by for a visit so I could get some alone time but one day that might happen.  I am sorry if I have vented and don't want to offend anyone but I just had to get this out.  I can't believe or understand some people that are self centered unbelievable.  I asked his sister one day about visiting him in the hospital she said oh no I have a nail appt.  Anyway sorry I am just stressed and need to offer it up to God.

[Era Might]

Here's a book that might be helpful to you, "Dying Is Not Death" by Lee Hoinacki:

http://www.amazon.com/Dying-Not-Death-Lee-Hoinacki/dp/159752879X

From one of the reviews:

"[T]o be human is to work out and practice one's own art of suffering," Lee Hoinacki writes in his most recent book. "But the medical system substitutes mechanical and drug fixes for the continual struggle needed to exercise an art." Through moving stories about how people close to him - his father, his brother, and his long-time friend Ivan Illich - faced suffering and death, Hoinacki illuminates ways in which this forgotten art can be practiced even in the modern technological world. To those who struggled to understand why Illich insisted on living with a great tumor on his cheek - what he simply referred to as "my bump," he helps us to grasp his (and Hoinacki's) rejection of the pursuit of health as a modern fetish preventing us from being fully alive. Weaving together narrative and interpretation based upon Catholic faith, Hoinacki shows how living, suffering, and dying are all one.

How can one attempt to live as a human being in a world dominated by the medicalization of existence? "The one action clearly open to me is to say 'NO,'" Hoinacki tells us. "No, I will not obey. I will not make myself compatible with the program. This may be a necessary absolute today to begin to live humanly, and to the degree possible, autonomously and virtuously." To those who aspire to living as an art - even if a largely lost one - Dying is Not Death is a beacon that shows a way through the dense technological systems of modern existence.

[AccountDeleted]

It must be incredibly frustrating to be in your situation and have to face the apparent negligence of the family for this man. The reason I use apparent is that, once again, we really don't know what's going on inside another person and it would add to your peace of mind (and be a calming influence on the old man as well) if you could try to let this go emotionally and just offer it up in prayer as you said. God works in interesting ways and it might be that one or another of his family do finally start to come around, but even if this never happens, hold them in your thoughts and prayers as well.

I have 6 brothers and 2 sisters and we have always considered ourselves a close family, even though most of us live continents apart these days. We have had two significant deaths in our family over time - my mother and my father - 20 years apart. Each time, everyone went through a lot of pain and suffering and each individual handled it differently for each parent. During my mother's illness (cancer) and death, many of us lived together in the same house to be able to care for her non-stop. You can imagine the added strains and stresses this put on us all. One sister had a year old baby, the other was just about to give birth (and she did only two weeks before our mother died). My sister's partners naturally felt the strain of being around our side of the family all the time, and those brothers who lived overseas came for visits with their families but the expense and effort of getting to Australia from Asia or the US with small children in tow put even more strains on everyone (including the kids, who wanted to enjoy their trip, in the face of a dying grandmother!). After my mother died, we all separated and many of us didn't speak to each for years after that because we needed to heal from all the emotional drama that we had been through.

When my father died 20 years later, most of the brothers and sisters were scattered around the world, and their children were now grown. My father's second wife didn't really want any of us around but my father asked every day if any of his kids had been in contact. Very few had because our relationships with him were very strained over the years. It was a very uneasy time. Some of the siblings were uncomfortable being around the second wife (it was an acrimonious divorce) and others had issues with my father from childhood and his abandonment of my mother.

I know I felt very conflicted when my father died, and although I was asked to speak at the memorial service by his second wife, I was told by my siblings that she was terrified I would bring up old grievances in my speech (I didn't). She wanted a written copy of it to view beforehand but I told her I didn't have a copy. In fact, I didn't know myself what I would say until the night before the service. I had many emotional issues to deal with in my relationship with my father and the fact of his death set up a conflict in me. When my brother came back from Dad's place one day and told us that Dad was dead, I cried and while my brother hugged me, I kept saying, "We're orphans now." but at the same time I felt a deep sense of relief that he was gone from my life because of all the pain he had caused me and my mother and so many of my siblings. I can't explain it. 

My advice is simply this, love this man's children as much as you love him. It won't be as easy because his needs are obvious, and you may never know if they are truly in pain or just self-centered. But that doesn't matter. God knows. So, yes, offer it up to Him, and give the old man all the love and care that his family can't seem to give him. You can be their proxy. That's a beautiful gift for you. 

[CatherineM]

I saw a lot of this kind of stuff doing family law and see it now dealing with developmentally disabled young adults and the mentally ill. I don't understand it. One kid just wants to see his mom or dad and his siblings at Christmas and they can't bother to return his phone calls. One of my husband's friends with schizophrenia has just a brother who has told his children that his brother is dead. He won't visit his mom's house unless he knows his crazy brother won't be there. 

 

I suppose this this type of stuff has always been around, but I think the breakdown of the family has made it worse. That and our move towards being more self interested as people. We aren't learning to do service or pulling together for common goals anymore. 

[anglefire]

Thank you for all of your replies.  Last night was stressful.  Not only does this man have cancer he had a triple bypass and suffers from vasavagal which means his blood pressure drops and heart rate slows down and then he passes out followed by throwing up.  His sister told him that if he doesn't start doing physical therapy and if winds up in a wheelchair then she will be forced to put him in a nursing home because she is unable to care for him I jumped in and said no you won't.  Immediately he had a vasavagal incident.  I feel she does more harm than good.  Immediately she starts telling me all her medical problems and I told her it's not about you but him let's not forget this.  The objective is to get him back on his feet and healthy.  No more negativity is allowed.  I will not tolerate it.  I have known her for 20 years and she likes being the center.  All I am trying to do is help this dysfunctional family and to make this man happy and healthy.   I love this person in a special way and offer prayers for him.  Thanks again for letting me vent

 

[Lilllabettt]

I am so glad this man has you in his life, and that you are able to care for him. But with all due respect, you did not have to grow up with him in his "dysfunctional family." His sister is carrying a burden you can't know, no matter how long you've known her. 

One of my brothers has not spoken to me or anyone else in our family for years - He even got married last spring without telling anybody. I love him and miss him and would do anything to have him back. I and my other siblings are not responsible for what happened to all of us growing up. But we are a part of an experience of pain and damage, and for that reason, I think, my brother does not want anything to do with any of us.  I can't sit in judgment of that - my brother has to put his needs first, because for most of his life no one put his needs first.

Dealing with mentally ill people and dysfunctional family dynamics is difficult for most people, but ifs on a different level for those who have lived that experience with a particular person for the greater part of their lives. My belief is that most of these "mom abandoned at nursing home" stories are more complex than outside observers understand.  Interacting with someone who is sick is 100x more challenging when interaction with that person has been part of a lifelong pattern of pain and suffering.

God bless you for being there for this man, thank God you are there. Try to cut his sister some slack. 

 

[anglefire]

I have given her break after break.  How can you when someone is a control freak?  I have told her get counseling and that the people who caused her harm are deceased to try and let go of the past and move forward and to forgive those who caused harm.  They certainly can't hurt anyone anymore.  Again I don't want to get to involved with their family dynamics I really want whats best for him.