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Finding Balance

by on September 4, 2016

                                                                    Finding Balance

                                                                  by Marco M. Pardi

“The open mind never acts: when we have done our utmost to arrive at a reasonable conclusion, we still…must close our minds for the moment with a snap, and act dogmatically on our conclusions.” George Bernard Shaw. 1912

All comments welcome.  To those readers who have been hesitant to comment, please be assured you may do so freely. In recent days several new people have signed on as followers, enabling them to comment freely, and it is hoped they will. All previous posts are open for comment by clicking on “uncategorized”. Reader participation keeps this site vibrant. MMP

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Some of the articles I’ve written may seem vaguely relevant, even somewhat interesting to the large readership this column has.  Others perhaps not so.  But this piece affects or will affect most if not all readers.

When the time comes for a family to gather and agree to relocating a declining family member into a care facility my experience in a variety of forms tells me there likely will be an unsettling adjustment not necessarily for the family member being relocated but for the family in coming to terms with the consequences of their decision. 

Those who have followed or studied the changes in home demographics since WWII have seen the decline of multi-generation households in favor of single, nuclear family homes.  Largely in response to the changing nature of American employment and the subsequent need for mobility as the work force kept pace with relocation or elimination of work sites, this shift left the older, retired generation in homes they neither needed or could maintain.  But what to do when those older family members, now without a supportive household, became unable to care for themselves?

Enter the retirement homes, the “old folks” homes, the nursing homes and homes with various other euphemistic but signal titles for Last Stop on the Journey.  The individual names of these establishments conjure various images, but one of my favorites was “Autumn Leaves”, as in dying leaves falling from the Tree of Life.  Was I the only one who saw that?

I’m willing to consider that my views may be jaded by early experience.  As the 1950’s were, thankfully, gasping their last I worked in an ambulance service/funeral home (the conflict of interest was overlooked then).  So, I was involved in taking patients in the front door, and out the back door of these places.       

Invariably, one’s first impression on entering is formed amidst the dense, wet stench of old urine. Certain now we are in the right place we wheel the gurney into the patient reception area to obtain the room and bed assignment.  Our part is done once we’ve transferred the patient onto the bed.  A few moments outside will clear the sinuses, if not the memories.

But those memories include glimpses of the dayroom, planted with people-like ragamuffin topiaries in wheelchairs slumped against tray tables, the only safeguard between them and the floor.  The endless television soap opera programming is obviously more for the staff than the patients, most of whom seem unconcerned or unaware of the angst and melodrama being played out for them to the accompaniment of music soundtracks designed to shorten their tenure at this stop. Occasionally we saw “physical therapists”, interns from the nearby university, going through the motions in the dayroom with the same naive enthusiasm as new flight attendants before take-off: “…and in the event of a water landing….”.  Audience interest seemed about the same.

When a patient “checked out” we brought the gurney in through the rear, wrapped the departed in a sheet and covered him/her with a blanket for the exit.  Though we hoped to avoid visitors, that was rarely a problem.

In the 1970’s I placed students in my advanced Death & Dying classes with patients in nursing homes, hospitals and private homes.  Hospices were as yet quite uncommon.  Checking on students and patients I walked from room to room in nursing homes.  An old woman stopped me, saying, “You’re not a visitor. Visitors stand in the hall to talk to their people. They leave at the first opportunity and don’t talk to anyone else.” This got me thinking about my own family experience.  My mother and maternal grandmother lived together since we came to the U.S. after WWII.  In the mid 1960’s my grandmother went headlong into a dangerous form of dementia, sneaking into my mother’s room at night and beating her with her cane. The family doctor eventually prevailed on my mother to “put her in a home”, which she did.

I was away for all of the 1960’s, visiting my mother’s home only infrequently.  Through phone calls and the very occasional visits I learned my mother was driving the 40 mile round trip to see her mother in the nursing home at least once a week.  While I would never characterize their relationship as loving, these visits nonetheless seemed to take a heavy toll even above my mother’s lifelong search for any story she felt might bring her sympathy.  As these episodes came to dominate every conversation, I asked my mother two questions: 1. Are there any indications (grandmother) is emerging from her severe dementia?  And, 2., Do you have any reason to feel she is not being well cared for?  The answer to each question was No.

I’m sure the reader can anticipate my answer.  Reduce your visits to once every two weeks, determine if this change is noticed, and determine if there is any apparent decline in facility support for her. If not, consider going to once every three weeks, and so on, until you reach your comfort level. My concern here was for the mentally competent person, not the person in irretrievable decline. I also felt there was an unaddressed issue of guilt over having put her mother in the facility and continuous and frequent visits impeded the ability to deal with that guilt.

Twenty years later my mother was in the same condition, formally diagnosed with Alzheimer’s and I had her put into the “memory unit” of an assisted living facility. While the assisted living industry had made great strides beyond the nursing home model, I ascertained in consultation with her doctor that she was unresponsive to the drugs available at the time.  He and I also ascertained that she apparently had no idea at all who I was. On that basis, and being some 650 miles away, I limited my visits to every few months and spent more time in support of my brother who, living quite near her, was visiting her regularly. She did know him, but his visits set off erratic and highly emotional outbursts which upset everyone and were, according to nursing staff, not at all typical of her everyday situation.

My approach may seem Draconian to some, but I feel it was appropriate given a situation in which the patient’s mind is apparently irretrievably gone.  But what about the mentally competent person who has simply lost the interest and/or the ability to properly and safely function alone?

I’m currently involved, albeit tangentially, in three of these situations.  None, as yet, includes “memory care”. The facilities, averaging more than $70,000.00 per year out of pocket, offer full maid service, daily medication supervision and a variety of social activities including three quite good meals per day. In each case the person’s nearby children take turns visiting.  Their siblings who live quite distant fly or drive in periodically to “take a turn”. Yet, the resentment against those distant siblings who are retired and easily able to travel is noticeable. And, since the facilities have come to expect someone to be there daily there is a marked decline in support activity such as laundry and room cleaning.

I have suggested, carefully in each case, that daily or even every other day visits, which mean many hours and usually meals taken in the dining room with the person, are working against the best interests of the person. The facilities have clearly begun leaving routine duties to the visitors.  The many hours spent with visitors are hours lost to participation in group activities which would develop a sense of a new community in the person.  The meals taken in the facility dining room discourage other residents from sitting with the person and developing friendships.  The daily phone calls encourage the person to stay in their room, isolated from others.  In other words, the person is neither in or out of the facility; they are parked somewhere on the threshold and it should be obvious to all involved there is no going back to “the old days”.

I can well understand the feelings that leaving someone – even for a reasonable while – is neglecting or “dumping” someone.  At the same time I remain convinced that daily hovering, a several year pattern in one case, is directly against the best interest of the person who needs to move forward into a new social setting and new relationships.

I hope no one drags up that “tough love” crap.  This isn’t about being punitive – “It’s for your own good”, it’s about recognizing that everyone’s feelings must be understood.  Where familial feelings are apparently mostly or totally absent, such as in severe dementia, the focus must be on why otherwise competent people continue to subject themselves to an intolerable situation.  Where physical impairment necessitates assisted living for an otherwise competent individual that individual must be allowed to “move in” to and benefit from the community of which they are now nominally a part.

Makes sense to me.  Of course, I’ve received the “You’re awfully clinical” assessment before, and don’t doubt there will be more.  But if I ever find myself in need of such a change the very last thing I want to do is be a source of distress among those I care for. I would hope to encourage healthy and productive balance even if I could not always achieve it alone.        

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25 Comments
  1. Ray Rivers permalink

    Well said Marco – regardless the feelings of guilt one may experience leaving a parent or other relative in a nursing home, we each must make the best of what fortunes deals us – and depending on the person’d situation that may well be the best compromise. This is a tough subject and we should al be thankful you can share your thoughts for us to digest.

    Thanks

    • Thanks so much, Ray. Your comments encourage me to feel we can interact on tough subjects on this site. Thanks for being part of this. Marco

  2. Ray Rivers permalink

    I commented – thanks for the article – I still have feelings of guilt about my father. This helps.

    Ray

    Ray Z. Rivers 445 Mountsberg Rd., Campbellville ON L0P 1B0 Home and Mobile – 905-659-2069 rayzrivers@gmail.com

    • Thank you, Ray. Through your music and your newspaper column you demonstrate insights into feelings from which we all benefit. Marco

  3. Much of what you say about letting a patient develop relationships when placed in a home makes sense, but that was not my experience. I worked as a pharmacist’s assistant for 8 years. Every day it was my job to get the prescriptions ready and deliver to them to the nearby Medicaid nursing home. These were all patients with no resources, care paid for by the government. In those 8 years there were very few visitors. Initially, I was rather shocked at a few elderly women who sat outside the front doors and would offer sex in exchange for cigarettes. In 8 years, I never got used to the smell. I was nauseous every day I left. I learned the patients to avoid so desperate for human contact would grab your arm and it would require assistance to get away. They would hold you and scream if you tried to free yourself. There were two-three patients I formed relationships with and I enjoyed my interactions. There was a very handsome 20 year old, head injury (motorcycle wreck) patient. He was paralyzed and appeared to have no functioning. He would be brought out in a wheelchair each day then returned to his room in the evening. I would always touch his hand and tell him good morning. I would always see what seemed to me was slight movement in his first two fingers. The staff would tell me I might see slight movement but he was not aware of anything. I kept it up for 2 years until his death. I wondered how this beautiful young adult didn’t have a soul in the world who cared for him or to visit. Most of the patients were in wheel chairs. Even if they could walk, most were confined to chairs to reduce falls. Those not confined walked the halls doing the familiar Haldol/Thorazine shuffle. There was one patient that was my favorite, Bea. She was so lovely and graceful. She had a tonic she was given twice a day to help increase her appetite. She would sip it like it was a fine glass of wine, and I would sit and talk with her. All her family were gone. She never had children. It broke my heart someone so lovely, this would be the end of their life. Bea had a Christmas present for me every year. Those presents meant more to me than any expensive gift I have ever gotten. It hurts my heart to think of the sacrifices she made to make those purchases to show me and a few others her appreciation.

    Thanks for your article, which provided me this walk down memory lane. Those family members who have anyone visiting any length of time, are lucky, even if it means the person’s daily routine is disrupted and causes a change in behavior. My dental hygienist takes two vacations a year to fly to California to see her mother with Alzheimer’s. She has no idea who she is. I asked her why when it didn’t do a thing for her mother. She told me, “I don’t do it for my mother, I do it for me.” I get it.

    • Thank you so much, Mary. Your memories were in far more detail, and sadness than most of mine. I imagine those experiences were deeply influential in shaping the person you are. I did see some patients – did not know their financial status – who apparently had no visitors while I was choosing patients for my students. And, one did engage me in conversation each time I came. I will never forget the day the nursing supervisor walked up to us, told her to shut up, and told me in front of the woman she was insane.

      There is a balance to all this, and each of us has to find it. Again, very sincere thanks. Marco.

      • P.S. Mary, you are quite accurate in your depiction of subsidized nursing homes. My focus in integrating incoming patients/residents was on For Profit Assisted Living centers. I should have been more clear. Thanks, Marco

  4. It was clear to me the centers you were talking about were private pay. In Gainesville there are two rehabilitation centers. One if you have basic Medicare or Medicaid. The other for top level insurance. They are night and day. One is dark, and the patients have looks of hopelessness. The other is like a spa, light & colorful. The food is first rate. People are happy and engaged in their recovery. I have wondered why both couldn’t be alike. I think it is more than just the money. There is almost an undercurrent people on welfare should be subjected to punishment.

    • It would be wonderful if you could find the time, take the time to blog about your experiences. I actually find it amazing that you have come through so many experiences as the person you are. Too often I’ve seen other outcomes.

      I agree. There does seem to be a strong stigma attached to people on assistance, and that stigma even extends to the workers who provide the services for them – which is odd. I saw lots of that in public health. “Oh, you work in public health”, like you are unqualified to find respectable work.

    • p.s. Here’s a link to a related problem.

      Anti-LGBT Bias in Retirement Homes: ‘It Was Like They Had Bubonic Plague’

  5. Thanks for the encouragement to blog. I have too many relatives who are very talented writers for me to have the confidence to put pen to paper, or is it text to monitor now? I too am amazed how my life turned out.
    I knew nothing about the LGBT issues in nursing homes. It makes sense. One would hope once you reach a certain age, issues like these are no longer important. Very interesting article. The link didn’t take me to the article. I think this is the link. Am going to see if this link let’s you choose it and takes you to the article.

    https://www.theguardian.com/world/2016/sep/04/lgbt-retirement-home-discrimination-lawsuit-chicago

    • Yes, the link you sent works. And, it’s the article I tried to send.

      Please do consider starting to write. It gets easier and better. WordPress offers a free account, although I pay a nominal amount for this one.

  6. Gary permalink

    Thanks for this posting Marco. My mother has dementia and is in one of these assisted living facilities. I live quite far from her so I only visit about once a month. My sister and two brothers also see her on separate occasions as well. I know 3 minutes after I walk out the door she will not remember that I came, but she does live in the moments when I am there. She has a good sense of humour and the visits are enjoyable.

    • Thank you, Gary. Of course, whatever expression of empathy I would extend to you and your family would just not do it for me, or for you. But I am glad you found this worthwhile. And more so, I’m glad you, as a whole family, have a situation which is enjoyable in those moments you have together and which, hopefully, will remain so as time goes on. Marco

  7. Jessica Smith permalink

    I grabbed to hook on this one.

    I totally get what is being conveyed in this post, and I laughed a couple of times. I so like that Marco, thank you.

    Yet there are a whole lot of people who don’t even get close to feeling “guilty” for leaving a loved one in a “center” of some kind. It takes money and sometimes a lot of it. Many, if not most simply cannot afford the luxury. (It seems your post may only ring in the ears of a small majority).

    On top of that there isn’t enough geographic space in the US, outside of the family unit, and/or the building of more memory care facilities, to house the demographic needs of the the up and coming aging baby boomer generation. This lack is creating a big issue for our country in many many areas.

    What happens when there isn’t enough money or resources available to take care of aging loved one let alone feel guilty about their decline and, in some cases, their vast and very specific needs?

    I know my two sisters and I together could not afford $70,000. a year to house our aging mother if that need arrived anywhere in the near future.

    Things are very complicated as you so visually express in your posts.

    It takes a broader perspective and attitude to see things differently. Sounds simple. It’s actually so simple that it’s almost impossible. I’m not complaining, judging or settling. I just know that feelings, thoughts, habits and conditioning derail almost everything we beings do especially when it comes to dealing with that familial unit.

    Always in gracious appreciation,
    Jessica

    • Thank you, Jessica. Each of the comments raised a multitude of perspectives and issues and yours most certainly deserve further and deeper thought and consideration. I agree with you 100%; we as a nation are heading for a crisis of major proportions in this area. And you precisely capture it when you say “things are so simple that it’s almost impossible”. But, as you well know, attempts at national conversations break down quickly along rigid ideological lines.

      I’m quite certain I speak for many, if not all, when I express my gratitude that you put these issues and thoughts before us. Thank you, Marco.

  8. Alex Matheson permalink

    Marco my parents both died before needing such accommodation, so I was spared those issues. But I like how you have tried to remove the temptation for guilt that people may feel. alex

    • Thank you, Alex. I’m quite certain with your great experience of so many cultures around the world you know just how complex this issue can become. Marco

  9. My Journey Out of Darkness permalink

    This is very thought provoking and I feel you have a very good point. When I worked for Hospice of the Western Reserve, many of my patients were in assisted living and nursing homes. My patient’s family members did come to see them but other residents never had visitors and I felt bad for them. I think we all must decide what is best for our family situation and adhere to that without worry of outside (or family) criticism. I believe that you are correct on the amount of visits for a those who are mentally competent. While here, we should make the most of our lives, which includes socializing with our peers. Visitors are necessary not only for the relationship between family members but to keep check on facility staff. Too many facilities cannot be trusted (I have had dealings with many in the Cleveland area).-Michelle

    I think that you are very pragmatic and you need to state your opinions even more! People can learn a lot from you!-John

    • Thank you, MJ & John. As you can see from the comments so far, there are many stories to tell and many perspectives to consider. Jessica is quite right in warning that this is a very large problem developing. .

      • My Journey Out of Darkness permalink

        Yes, it is a very large problem!

  10. When I was a young Girl Scout, our troop went each year to sing Christmas carols at the local “retirement home”. We weren’t encouraged to go inside the rooms, but would give our performance from the hallways. What I remember from those visits was how stark and sterile the rooms were then. If the “residents” had visitors, we didn’t see them.

    In the many years since then, several members of my family have made their living as home health workers, or workers (CNAs) in the current version of these facilities; not the best of such. I’ve heard horror stories, and ones that would break your heart. I suspect these places are marginally better than the one I visited as a child, but probably just as lonely.

    In the last few months of his life, my brother-in-law’s family made the decision to place his widowed father in an “assisted living” facility. I remember him as a robust man, and it breaks my heart to know that he was no longer able to live an independent life. To the good, while his children stayed in contact with him, their visits were limited by distance, leaving him to adapt to his surroundings. He made new friends, participated in the activities to the best of his abilities, and generally was able to actually live the rest of his life.

    Family taking care of family will always seem the best way, but it isn’t always possible, and especially in cases of physical or behavioral issues. In these cases, I believe that placing our loved ones in a facility better able to care for them is the best decision. Doing what’s right for everyone is the best kind of love there is.

    • Thank you, Rose. It can be a tough decision for many reasons. My brother fought hard to keep our mother at home, even considering modifying the home for a live-in caretaker. I actually tricked the two of them into an assessment at Shands Teaching Hospital where I was able to get my mother to express suicidal intentions in front of the staff. I called for the 72 hour Baker Act hold and got it. Her behavior during the hold clinched her disposition into a “memory unit”. Needless to say, there were familial tensions resulting from that.

      Obviously, I agree with your assessment of doing what’s right for everyone. Sometimes it takes others a while to see that..

  11. Michael E. Stamm permalink

    I got lucky, if that’s the word; my mother had dementia but died (30 months ago) before she quite got to the nursing home stage, and my father died just over a year ago of congestive heart failure (among other things); neither of them would have wanted such a fate. One of my very best friends died just over a week ago (cancer); her mother, for whom she was the main caregiver, is now in a local rehab facility and will soon be moved to a nursing home in Idaho; she’s almost 94 and in failing health. I was talking about this to another friend just today; this “system,” such as it is, is broken, costly though it is for most and lucrative though it is for some; we need to figure out how to do better. Unfortunately, I don’t see that there is a real “we” in that sense any more. Thanks for writing this, Marco; very clear and articulate as always.

    • Thank you, Mike. So often I’ve heard people say, “I don’t want to end up like that”. And, so often they do. I’ve certainly said it. I’ve spent all of my daughter’s 46 years building up an estate for her and her children. I could not bear to see any of that money drained away in this manner. But, you are so terribly right. The system has been allowed to cannibalize us and we must bring in major change. Marco

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