They Won’t Listen!

Dear Denise:

Where to begin… My mother-in-law was recently diagnosed with ALS; she is approx. 75 years old (none of us know her real age, this should provide a good hint to where the rest of this is going). She has four daughters (one in Florida, the rest here in Indianapolis) and one son and lives in her home with her husband who can get around fairly well. The family dynamics are too detailed to get into but suffice it to say that this woman has been very proud and very private for years. There are things her children don’t know and she wants to keep it that way. She is particular about where things go and how things are kept and is not very happy that her children and there going through her things and trying to clean the home. She is now at the stage where she can not communicate and has problems drooling. The children are not really close due to various reasons and so, you can only imagine the difficulty that is presented once decisions needed to be made.

There seems to me (keep in mind I am viewing things from an observation standpoint) that the family is having difficulties in dealing with the illness and so they have decided to focus on the care of the house to try and “help out”. The son is a policeman, working two jobs and has very little spare time; he is also separated from his wife (me). The eldest daughter is in Florida and is the most responsible. The next daughter is retired, wants to take charge but can’t handle things; the middle daughter is somewhat estranged but helps and the youngest daughter helps with restrictions (i.e. doesn’t do floors, refrigerators, toilets, etc.). The family has focused on a “schedule” for things to be done including the cooking of meals. I provided my husband with information on a geriatric care specialist with St. Vincent Hospital in Indianapolis and this person was very familiar with the disease and the stages of progression. She stated that it was necessary to have flexibility in the care program due to the progressive nature of the disease; needless to say, no one has a medical background. My husband even provided this info to the other siblings as well as information on the best foods to prevent chocking but no one replies to this information. They are upset with him because he works from 10:00 a.m. to 2:00 p.m. cutting hair and from 2:45 to 10:45 p.m. as a State Trooper. His weekends are not free because he works at the shop and has to do this to take care of his obligations. His concern is that his parents receive proper care not just a clean house. It is as if his sisters feel that by cleaning house and cooking meals, adequate care is being provided yet all the while, she continues to deteriorate. The sister in Florida is in agreement that an assessment and care plan needs to be done but none of his sisters ever responded to the information he sent. When he tells them about his schedule it is as if they can’t hear him and all the while they go on cooking and cleaning and that is all. The youngest daughter has held on to a DVD about the disease and won’t look at it because “she is afraid”. I feel they are all afraid to face reality and yet what can be done to cause them to “snap out of it?” I stress again that no one is medically qualified and at this point there is contention because the son can not contribute to care as much as the others which is frustrating for him because he wants to contribute in ways that he feels counts which is appropriate care, not just a band aid. They are focusing on good things but to me, not the right things. A speech and physical therapist comes to the home but my concern is that the meals cooked, without knowledge of the disease, could cause her to choke. How do you bring family members together and help them to focus on appropriate care rather than just trying so hard to be “good children” for appearances sake and to soothe their on consciences? They never even acknowledged the information they were sent on foods that prevent choking. I am at the point of telling them that if she chokes and dies, it could be one of them to blame for refusing to open there eyes and face reality. It is as if they are totally oblivious to what is really needed. Any advice would be appreciated. Thank you.

Hello,

I can appreciate that you are trying your best to help and that you have your mother-in-law’s best interest in mind.

From reading your note, though, I get the feeling that there’s lots of directing, but very little communication. Directing is a one-way street that often leads to dead-ends; communicating leads to greater understanding between two or more parties. When parties communicate, they ask questions to avoid assumptions, check in to see how each other is doing, concentrate on listening, share their appreciation for each other, and commit to working out conflicts in a diplomatic way.

It sounds like your sisters-in-law also are doing their best under really trying circumstances. Their mother has a devastating disease; watching her deteriorate before their eyes must be heart-breaking. They’re providing a clean and structured household for your mother-in-law, something, it sounds like, that your mother-in-law values greatly. In addition, they have called in help from professionals, who have developed a care plan that works best for your mother-in-law. It sounds like you’ve researched the disease, which is great, because it gives you a good overview. However, the speech and physical therapist will know your mother-in-law’s care needs best.

I guess I can’t help but think that perhaps this is really about your changing place in the family, that your separation from your husband does change who you are in the family–and that can hurt. It sounds like you would like to help (and you were trying to help by sharing information about choking). It’s been my experience that the best way to help is to call the sisters-in-law, tell them how much you want to help and then ask them how you can. Then, follow their guide. Again, it’s about communicating, rather than directing. I would imagine once they see that you want to help, rather than criticize them (I would imagine that they take your information as a criticism of the care they are working hard to provide), your reception from them will be much different.

Most important, you won’t say anything that you’ll regret later.

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Tags: changes, communication, conflict