Thank you to families

Who am I kidding when I think God has a plan for me to help families deal with dementia.  I learn much more from the families than I think I give to them.  After returning from vacation, I was reminded of 2 daughters of residents that taught me so much about being a long distance caregiver.  Terri was one of the first daughters that I got to know when I started at the assisted living.  She lives in Nevada, on the other side of the country.  But that did not stop her from doing lots of research and finding local resources to help her dad maintain as much functioning as possible.  She sent me a copy of the book "Creating Moments of Joy" by Jolene Brackey.   What an indispensable resource.  It is so easy during a loved one's decline as the illness progresses to think about all the losses.  This book reminds us to celebrate the skills and abilities that remain.

The daughter that I have been closest to and learned so much from was Sharon.  Her mother used to refer to her as her handicapped daughter.  Sharon might have been impaired mobility wise, but she is anything but handicapped.  She lived on the east coast, again thousands of miles away from her mother.  But she too researched and was so creative in coming up with ways to stay in touch with her mother and to encourage the skills that remain.  I have found myself using the same strategies Sharon used with her mother.  Well, probably because my mother reminds me so much of her mother.  From the artistic talents to the obsession with her pet cat.  So I bought my mom the abstract coloring books.  Actually, I got one for myself as well.  Since I am likely 3rd generation, I'd like to do what I can to keep what I've got.  This week I decided I was going to buy some pretty note cards and send a card once a week.  I remember the conversation I had with Sharon about how the note card is a tangible reminder of communication.  Although I call my parents every weekend, the phone conversation falls in the short term memory and so is more likely to be forgotten.

I sure hope I am helpful to families.  But I know the families have taught me so much.  I'm thankful to be able to use their lessons for my own family as well as the residents in my care.

Vacation

We have just returned from our annual vacation with the family.  My parents purchased a time share condo.  Each year, as many of us as are able get together for a week.  This year all three children and our spouses were able to get together with my parents.  I think everyone knows it was a priority to get together this year because it may well be the last we are able.  We went to Crossville, Tennessee.  We had been there 2 years before.  It was here that we first started noticing problems.  That year, Mom could not remember where the silverware was kept time after time after time.  This year there were some pretty distinct differences.

Even though we had been to my parents in May for a couple days, I did not realize physically how impaired Mom has become.  She says they walk a mile every day.  I don't believe it.  After a block or two of walking, she was needing to find somewhere to sit down and rest.  When we went to their house in May, she said the same thing but Dad corrected her that they missed 3 days out of the week that week.  My husband noticed that this trip Dad did not disagree with anything she was saying.  Dad is fiercely independent and so its hard to say, has he done research and realizes there is no point in correcting her, it is out of a sense of wanting to protect her dignity.  Doesn't really matter why, but it is good to see that he has discovered how best to respond.

Dad was very emotional.  Not all the time, but certainly more than is usual for him.  The first day was a disaster.  My sister in law wanted to go to some local caves.  When we got there, I recommended that Mom and I stay at the gift shop while the rest of the group went on the tour.  Between the uneven terrain and the dim light, ( I didn't know physically how impaired she was at that time), I did not think it was a good idea.  Dad was pretty insistent.  He had talked to the gift shop worker who said we could avoid the most strenuous part of the tour by waiting at a certain point for the group to return.  I deferred to my father's decision.  I don't want to be a bossy,  know it all and try to take over their lives.  It was a disaster.  I was right.  Mom has always had poor vision.  Some of the new research talks about how changes in visual perception are some of the early signs of dementia.  So it's hard to say which was the cause, but Mom could not navigate the uneven terrain in the dim light.  We made it through.  But after that, Dad became much more directive of Mom, holding her hand to guide her when we went walking anywhere.  Another time I hate being right.

Ever the counselor, I had brought along a no-win or lose game to play.  The object was to share stories, memories and personal reflections.  It was a good time, but Mom had a hard time following even the directions to move her playing piece along the path.  It was while playing the game that I saw Dad tear up several times and his voice crack.  I have just subscribed to a blog called "Watching the Lights Go Out" written by a man who has been diagnosed with Alzheimer's Disease.  It is such a blessing that he is willing to share his insights and experiences to help others understand what it is like.  I can only imagine what my father is feeling, watching the woman he married 50+ years ago become less and less.

In my own spiritual journey I am trying to focus on being content in what ever circumstance I'm in, to be grateful for the blessings I have and to concentrate on thankfulness.  So I tuck this vacation into that category.  I'm thankful my brothers understand how important this vacation was and took the time to be a part of it.  I'm thankful we were able to have this time together to talk about experiences of the past.  I'm thankful for the love between my parents and that my dad gets it, no matter how he has come to the realization.  I'm thankful for my own husband who took his vacation time to be with me and support me in such an important moment in time.

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.

Unfinished Business

This week, one situation brings to mind 2 thoughts.  Ever since reading the book "1000 Gifts" by Anna Voskamp, I've tried to cultivate an attitude of gratitude for the many blessings I have that get overlooked.  The research says doing so makes people happier.  As devastating as the diagnosis of dementia is, there are blessings if you look for them.

I worked for 4 years in the hospice field.  Not my calling, but as with everything God has placed in my life, a valuable learning experience.  I learned that knowing your time on earth is short allows you to take care of unfinished business sometimes.  A gift those who die without warning don't have.  So one of the things I hear my mom express regret about is the break in the relationship between her and her only sibling, her brother.  Now the reason for the break is obvious.  He was a jerk and trying to grab more than his share of the fruits of my grandparents lives.  Yet I can only imagine what it must feel like to be estranged from the one other person in the world that is your blood family.  So here I identify gift #1- my brothers and I have good relationships.

Pretty much out of the blue, my middle brother gets the opportunity to make contact with our uncle in a way where my brother can try to negotiate reconciliation if possible, without subjecting our mother to more emotional heartbreak.  Gift #2 & #3- God works in mysterious ways, but His ways are perfect.  This brother has the right skills to be the person to handle this contact and the opportunity was presented to him.  So he will pursue contact and see if reconciliation is an option.  That, of course, would be gift #4, but we will have to wait to see what happens.  Gift #5, having the opportunity while she is still able to resolve what might be unfinished business.  It occurs to me as I write this that we would all be wise to take note.  Not everyone has the opportunity to know their time might be short.  We would all be wise to look for areas of unfinished business in our own lives and work to resolve them if possible.  Secondly, I better take note and work to do all I can to make sure I keep a good relationship with my own brothers.  Thank you God for sharing your wisdom with my and for sharing it in little bits that my finite mind can comprehend at one time.

Hero of the week

What one milestone signals the reaching of adulthood more than getting your driver's license?  I would say nothing.  No wonder telling an elder they should no longer drive is such a cause for relationship problems and  self concept problems for the elder.  And how dare the whipper snapper whose diapers you changed dare now try to tell you what you should or should not do.  I have seen over the years how this one topic has been a root of serious relationship problems between a parent and a child.

So my hat is off this week to the doctors with the courage to be the ones to tell an elder they should not drive.  About a month ago, my mother's doctor told her she should not be driving.  After the psychological testing was complete, she told my mother in no uncertain terms she should no longer drive.  My mother thinks it is related to her stroke and she thinks it is not permanent.  And there is no point in telling her it is permanent.  All that matters is that she knows at this point in time she should not drive.  My mother was somewhat taken aback at how "stern" the doctor was in making her point.  Good for her!  I explained to my mother how you could stand to lose everything you had worked for in your life if you don't take the doctor's determination seriously.  Fortunately my mother follows the advice of the experts.

Over the years I have seen how much more difficult it is for a man to give up driving.  The loss of independence, of being strong & self sufficient is extremely hard on the self concept of men.  This week I had a new resident go out driving 2 days in a row and get lost.  Thank you, thank you, thank you to his doctor who immediately made the decision for the family and the resident that he should no longer drive.  In the past, I've seen so many doctors opt out of that discussion, saying it is a family matter.  Thank you to these 2 doctors who have the courage to do what is right, not only for the patient but for the community and ease the burden for the family.  There are enough difficult decisions for the family to make.  Thank you for being on the team and "taking the heat" for this very serious, very important issue.