I’ll bet you wish you had seen hundreds of Wilson’s Phalaropes swimming in little circles at a dizzying rate of speed, a White-faced Ibis, lots of Black-necked Stilts, a bunch of cute little Semipalmated (not fully, but only semi-palmated) Plovers, very many American Avocets and Hudsonian Godwits, not to mention the White-rumped Sandpipers and the Scissortail Flycatcher — all this along with forty-eight more varieties of birds.

I got a day off yesterday, and so did Mary Ann!  We both had a great time.  I spent the day birding with an experienced birder, a new friend that I now call Bob, and Mary Ann spent most of the day with our Son, Micah.

Arranging a day off is no small task for a full time Caregiver.  Those routines that provide the structure to the day and provide assurance that everything that needs to be done gets done, are not easily explained to someone who does not do them on a daily basis.  To write down instructions for all the routines and appropriate responses to the variety of situations that might arise would be almost impossible.  It would read like the instruction manual for a computer program.

To have a day off, I needed to have enough confidence in Mary Ann’s safety and security that I could let go of any concern, relax and enjoy the day’s activities.  There are pills to be taken, a medicine patch to be replaced, a wound to be dressed, bathroom needs to be dealt with, food to be provided, a commode to be cleaned out, maybe a shower and/or hair washed.  There are endless possibilities for problems to arise, from falls to heart pain to fainting spells.

I was able to relax completely.  Here is why:  For the last years of my ministry, we had an agency provide a paid person to do Companion Care with Mary Ann for three hours from 6:45am to 9:45am on Sunday mornings.  That was a time that it was not appropriate to ask a Volunteer to serve.  We have used two agencies mainly.  One is called Comfort Keepers and the other Home Instead.  Both are very good.  The one we have used most recently is Home Instead.  For the last couple of years of ministry, Debbie came each Sunday morning.  She became very familiar with the morning routine, including shower and hair washing, dressing, taking meds, providing breakfast, cleaning the commode and dealing with the fainting spells should they happen.  Debbie was available yesterday for the early morning shift. The cost is about $16 per hour.  It is worth the sixty dollars that it will cost to have her there, to have a day off for both of us. (Home Instead: http://www.homeinstead.com/; Comfort Keepers: http://www.comfortkeepes.com/)

For the evening three hours, Margaret was willing to come.  She is a very good friend to Mary Ann, as well as the Parish Nurse for our Congregation.  She has all the skill and experience anyone could ask for.  She has taught nursing for decades and, while retired, still keeps active, serving on call as a home health nurse for a local hospital along with serving full time as Parish Nurse — volunteering her time in that role.

During part of the afternoon, until a virus laid her low, Edie was going to spend a few hours.  She is also a good friend to Mary Ann and has dealt with everything right up to calling the ambulance to take her to the hospital when it was needed.

The best part of all was that our Son, Micah, was able to come from 9:30am to 6:30pm to be with his Mom.  Our Daughter-in-Law, Becky, and Granddaughter, Chloe, were on a Girl Scout campout this weekend.  That freed the time for Micah to come.  For a Mom to have her adult Son to herself for a full day is a treat beyond description.  Micah always brings out the best in Mary Ann.  She was alert and able to communicate.  They talked on the phone with our Daughter, Lisa.  They played some Scrabble.  Needless to say, the game only went a two or three rounds, but Mary Ann managed to come up with some of the words on her own.  She used to be merciless in playing Scrabble with the Volunteers.  They knew they were in the presence of greatness.  Micah took her outside for a trek to the nearby park, looking at flowers and enjoying the weather as he wheeled her along.  They ate some leftovers and then later headed out to get a milkshake from Sonic.  Micah and ice cream too!  Can’t beat it!

One of the special benefits of the day were the bits and pieces of conversation that Micah had with his Mom.  He got to have her at her best some of the time.  He experienced some of her hallucinations.  There were some times when she was not tracking, but much of the time she was.  While their conversations were between the two of them, one interaction that Micah shared was very revealing.  She wondered if it was not so that once a person needed to be fed, they would have to go to a nursing home.  He assured her that as long as there was someone at home willing to help, that was not so.  She has in recent days begin allowing me to help her with food, even in public.  That need must have been a great concern to her, carrying with it in her mind powerful implications.

As I processed the day, one thing popped into my mind when thinking about how good the day was for the two of them.  Mary Ann and I have enjoyed hopelessly spoiling our Granddaughter Chloe when she is with us before returning her to Micah and Becky to deal with the aftermath.  Turnabout is fair play, as they say.  After a day of Micah’s full attention, entertaining her and enjoying her every minute of the time he was there, I have to deal with the aftermath!

If there will be a Caregiver’s day off (as well as a CareReceiver’s day off), there are all sorts of things that need to be done over a period of time to allow it to happen.

For one thing, we had developed a relationship with an agency, using it on a regular basis, if only for a short time each week.  That way the option was available and familiar.  We  had already developed the booklet with all the pertinent information if any problem should arise.  (See this blog’s March 29th, 2009, post titled “Caregivers’, Carereceivers’, Volunteers’ Safety Issues” for more information on the booklet.)

We had allowed some good people to spend time with Mary Ann over the past eight or nine years, providing a cadre of people to call on, people comfortable with her, experienced in dealing with a variety of contingencies.

We planned the day far enough in advance to allow for the scheduling needed so that it could actually happen.

It was helpful to make a commitment to the day and to make the commitment to another person so that the motivation to follow through would be there.  It surprised me that I was ambivalent about going as the day approached.  I realized that as I have settled into the role of full time Caregiver, the role has come to provide a certain comfort and security.  I was apprehensive about being away for the day.  I have come to find meaning in what I do here to the extent, that it was a little uncomfortable to think of being away from that fulfilling task.

The day off was good for both Mary Ann and me.  We had a chance to be ourselves, each separate from the other.  It was reassuring that we both had a very good day. That the day went well encourages us to do it again some time in the future.  It took lots of planning, but it was worth the effort.

Caregivers, take a day off! It will do both of you a world of good.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

It has been some time since Mary Ann has told me she was seeing the two parents and two children in the house. I thought that hallucination had subsided with the last increase in the dosage of a medicine intended to control the hallucinations (Seroquel).  Today she told me that she wished that the Thursday people would stop coming.  I asked and she confimed that she was talking about the family she sees sometimes at our house.  I asked if she was scared of them.  The Neurologist always asks if the hallucinations are scary.  She answered, “I just wish they would go home.”

We returned from our vacation last Friday evening.  It is now Wednesday, and the hallucinations, the daytime napping, the fainting, the confusion that often comes during recuperation from travel are still continuing.  The recuperation this time seems to be taking longer than in the past.

With Parkinson’s Disease Dementia (a Lewy Body Dementia), people can move quickly and dramatically from a time of confusion and all the rest of the increased symptoms, to a time of crystal clear thinking.  What is always uncertain when symptoms increase is if the person will return to the normal that preceded the episode or stay at the new place, settling into a new normal.

What has often happened in the past is that when I have reached the point of concluding that she has declined to a new level, have emailed the kids and maybe our extended family and friends, reporting the decline, the next day, she has rallied and returned to clarity of thinking, the former alertness and the capacity to stay up most of the day.

Maybe tomorrow will be a better day, but maybe it won’t.  One of the fears of this and other Caregivers is that they have witnessed a permanent move to a lower level of functionality, another sign of the disease heading farther along the path toward its ultimate conclusion   One of the signs of the progression of the Dementia is daytime sleeping.  Some reach a point of seldom being awake.

The fears that come with Caregiving are legion.  What follows is a litany of some of those fears in no particular order:

Sometimes when Mary Ann’s Parkinson’s medicine kicks in, she breathes heavily and the breathing sounds labored.  Arms and legs are waving.  Often she has a hot flash at the same time with sweat poring off her.  It seems as if she is just going to explode.  It seems impossible that her heart can take it.  Sometimes when she walks ten or twenty feet the labored breathing starts.  I am afraid a clot will break loose from a heart blockage and she will be gone in minutes.

Whenever we are in a place that has tables or desks with sharp corners, having seen her fall countless numbers of times, I fear that she will get up and head off quickly, lose her balance or faint and hit her head.  She has fallen and hit her head.  We have had trips to the Emergency Room.  The fear is justified.  We have removed almost everything in out home that she could fall on and do serious damage.

She has had one stroke already.  She could at any time  have another.  There is a lesion on with a rough place on it in one of her carotid arteries.  The next fall could be her last.

When she is in a deep sleep and has not moved for a long period of time, I will look closely to make sure I can see some movement indicating that she is still breathing.

There is the fear that the time is likely to come when I cannot care for her at home.  Each decline brings that potentiality closer.  The thought of a nursing home, even a nice one, is intolerable.  I respond to her every need.  I can read her non-verbals.  I know the way she thinks.  No one else is going to give her the constant attention she deserves.  I have great respect for those who work with the aged and infirmed.  It is still a harsh reality that there are too few caring for too many, especially at night.

Then there is the strain on the Caregiver who travels back and forth to the Nursing Home, some spending most of every day there with their Loved One.  I have read posts written by many who are completely worn out by the demands of attending to their Loved One in a Nursing Home.

There are fears about the financial drain of Caregiving.  If there is to be long term care (try getting long term careinsurance for someone diagnosed with Parkinson’s at age forty-five), the division of assets demands drawing down a life savings.

Caregivers fear getting hurt.  If I end up in the hospital for any reason, what will happen to Mary Ann?  When the ambulance with me inside it leaves the house, who will take care of Mary Ann.

What will happen to her if I die first?  Years ago when there was some misinformation that suggested my heart was about to give out, I remember coming to a very peaceful acceptance that my life has been filled with meaning and purpose and good relationships, my children have grown to be better people than I could ever have hoped (there were no grandchildren yet when this happened), my faith is strong and secure.  It would be okay whatever happened.  As a Caregiver, the fear is not so much a fear of death but the impact of that death on others,  In my case, it is Mary Ann. It is the impact her needs would have on our children.

Then there is the selfish fear.  If she goes first, what will I do without her.  I fell in love with her in the summer of 1962.  You do the math.  In terms of human relationships, she has been the center of my world for all those years.  Our marriage has been far from perfect, but we have hung in there with one another and would prefer continuing doing to do so.

Caregivers have fears!  We can pretend otherwise, deny them, ignore them, or accept them.  We can be destroyed by them or live well in spite of them.  Which we do is a choice we make.  What makes sense to me is to look at the object of the fear and make plans for what we fear becoming a reality.  Do what we have the power to do in preparation for each contingency, and then get on with life.

The truth is that we all have fears, no matter what our circumstances are.  Each of us must choose how we will live.  Will it be with terror or with peace in our hearts?

For me it is a quiet trust in a Someone whom I believe to have constructed me and sustained me that allows me to live in peace.  The peace is a gift from that Someone.  I don’t deny that I am sometimes afraid.  It is just that the fear does not define me and rule my life.  I choose the peace.

For Caregivers who do not look to someone outside themselves for peace, peace can still be found.  Facing the fear, stepping back from it, doing what you have the power to do and recognizing the limits of your power free you to settle back into the life-generating core of your being.  It is a sort of reality therapy that provides healing.

Caregivers’ fears are legion.  They are rational fears.  What they fear may happen, may happen.  Even in the face of their fears, Caregivers are free to choose peace.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.