A Life of Care Giving – Becoming an Enlightened Caregiver

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I just read this blog at caregiving.com. I was struck by it for several reasons. Firstly, because I felt the pain the writer and the family is going through, secondly because of Denise’s generous response (as I was reading, I tried to think of how I would respond) and finally by contrast to my family situation.

Mom is 84 years old with vascular dementia, my brother is 58 years old and Down’s syndrome. 6 years ago I decided to return to the USA after living in Belgium for 10 years (I could have spent the rest of my life there quite willingly) because my wife had died several years before. My older sister lived some 800 miles away and was busy hurrying up to retirement. My younger sister lived only 24 miles away but she had family commitments. I jumped in willingly (I always jump into the fire) knowing that Mom was losing the capacity to living alone (Dad died 9 years earlier). But that’s just the beginning of the story . . .

I found this story today:

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.Caregiving.com, Apr 2009

(You should read the whole article particularly for Denise’s response.)

This is how we have tackled our conflicting interests . . .

I began immediately to include my younger sister in what was happening by creating a Monday evening meal invitation. I would cook, we’d all eat and share stories and spend the evening laughing as often and as loud as we could. Shortly after this became a standard, we began calling our older sister so she could share in the fun.

Mom was turning 80 that year and we decided to put together a video with interviews of people who where significant in her life. This took us to the 4 corners of the East Coast including Florida. While there my older sister began looking for real estate for her retirement (she had always wanted to take care of Mom when she could retire). She made an appointment with an agent and I told her that I would like to go with her. We met up at the Atlanta airport and traveled onto Melbourne together. I proposed to her that we buy something together, large enough to accommodate the 4 of us. She was up for the challenge

We spent 2 days busily running from one development to the next defining what kind of house we wanted (this was done on the fly). After a dozen or so places and one seemed a possibility, but there was some things which were problematic. We kept looking and just as it was time for the agent to take us back to the airport, she took us to one last place. It was the model home where a sales agency had been selling the homes for this builder. It had not been on the market because there was nothing to replace it. We got there, perfect layout overlooking a 5 acre lake/marsh/bird reserve. This picture was perfect, but the home was not for sale. Damn! We went outside while our agent talked to the saleslady and when she caught up with us she said the house ha just been put on the market. We both turned on a dime to run back inside, placed our offer and now we live here in great comfort and splendor.

To sum this up, my older sister was offered a job, within a week, paying her more money, that allowed her to work out of her home.  We now call our younger sister on Monday evenings (as well as a Saturday brunch) “loao” as loudly and as often as we can.

I offer this post in contrast only to point out how great the synergy of communications can be.