When My Job Becomes About Families as Well as Residents

I've talked for awhile about a resident I've had for several years whose dementia has now progressed to where she needs to move to the next level of care.  The family has been fabulous to work with the entire time she has lived with us and even as we plan for the next stage of her care.  I have had families who, for whatever reason, absolutely fight my assessment of the need for a different level of care.  Pretty much the entire time this resident has lived with us, her illness has had the slow, almost imperceptible decline.  So this week when there was an abrupt change, it took everyone by surprise.  Everyone had planned on an orderly, planned in advance transition.  And now we were looking at a much quicker move to the appropriate level of services.  As I was talking with the family about the new move date, I could hear, even over the phone, the sense of loss in the daughter in law's voice.  In my focus to be sure the resident's needs were met, I had for the moment, forgotten about the needs of the family.   I was reminded of another resident's daughter at this same juncture where she said to me, "This is no longer my mother.  This is a woman whose needs I am making sure are met, but it isn't my mother."  I was quickly reminded of the multitude of losses faced by families.  One of the losses is the extended family that our small, 16 bed assisted living has become.  The move itself signals many losses of the resident and of the person that she had been.  Although her body is still pretty healthy, the core of what makes each of us who we really are is gone from this resident.  In fact some of the symptoms as the disease progresses, paranoia, eating better with finger foods, the tearfulness are probably the exact opposite of who she was before the illness.

I see that on a very limited scale already with my mother.  The change in personality is much less now that she is taking the Aricept than it had been prior to starting the medication.  Yet I can see small changes that she is no longer who she once was.  As I mentioned before, the witty, highly intelligent, able to debate any topic characteristics are no longer there.  They have been replaced by obsession with the cats.  I'm always amazed at how intricately my past experiences have prepared me for where I am now.  That there can be any other explanation for this but a loving God who has a plan for my life is inconceivable.  And I'm reminded now of the many public speaking engagements I made while I worked for the mental health center.  One of the most requested topics is dealing with stress.  And one of the basic causes for depression is on-going stress over a prolonged period of time.  Exactly the situation so many families and caregivers face.

I am thankful for the wake up call on the phone the other day to remind me I am where I am not just to care for residents, but just as much for their families and loved ones.  I hope I can take my own advice as I begin the journey myself.  I hope my family will "hear" me as a professional with expertise to share and not as the child so that I can help my family as well as the families of my residents.

I wish it was like it used to be

"I wish it was like it used to be", she said with tears in her eyes.  One of the assisted living resident's dementia is progressing and she will have to move to another level of care soon.  Her family had talked with her about the move a couple days before.  She has had periods of tearfulness throughout her stay with us.  so it is hard to say whether she was speaking about the upcoming move, the loss of her husband, which we are not sure she actually understands, or where she is in her mind that has caused her to be  upset.

As a 16 bed assisted living, we trim every possible expense by having me do as much as I am able.  So most days find me running most of the day.  This was one of those times that I knew I had to stop and just listen. Also because we are only 16 beds, it is easy to get attached to our residents, especially someone who has been with you for several years.  Although I haven't yet read much about it, I like the premise of the Best Friends approach to dementia care.  So in that spirit, we just sat together.  I do where she was in her mind and she wasn't able to tell me.  But as a friend would do, we just sat together.  It's days like these that I love my job, yet find it very taxing.  Did I make a difference?  I don't know.  but I do know it was the right thing to do at the time.  And with such a daunting task, I guess that is the best I can hope for.

I wish it was like it used to be too.  I wish I was wrong about my mother.  I wish she was still the witty, well-read, debate a topic on a minute's notice person that raised me.  I wish she was still the caretaker and I was the care receiver.  But it's not.  Right or wrong, just or unfair, this is the hand we've been dealt.  I pray for the strength to move forward and continue to do the right thing, both at work and with my family.  But maybe I will take time now and again to remember how it used to be and to savor those memories.  Hopefully not to dwell on the loss, but to remember with thanks all I've been given.

The Face of Courage

She's been a volunteer at the assisted living for at least the 5 years that I've been there.  First, teaching Sunday School once a month.  Then for the past 2 years, playing the piano for sing along each week.  One day, the leader of the Sunday School group comes to me.  He asks me to keep an eye on this teacher.  She seems to have been having trouble with her memory lately and they are concerned about her.  This past week, I half listen to the Sunday School lesson as I work in the office on the computer.  She says to the residents, "I'm going to be forgetting things so I have started writing things down".  What? I listen more closely.  "They tell me as the disease progresses, I will forget things.  I could ask God why me, but I'm not going to do that.  None of us knows what tomorrow may bring.  I will keep on what I can for as long as I can for the Lord."  All this is said with the same smile on her face as when she shows us her latest photo or art project.

I don't know that I could do what she is doing.  I don't know how I am going to handle my mother's illness, much less what I would do if told I had dementia.  This is the face of true courage.  Moving forward in spite of circumstances, vowing to do your best for as long as you can.  This is a true hero and I vow to recognize these heroes when I have the chance.  Because none of us knows what tomorrow may bring.