May 31, 2009

Caregivers: Legal Issues

Posted by PeterT under Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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A few days ago there was a thread of discussion on an online group I am in for Caregivers of spouses with Lewy Body Dementia.   There were all sorts of issues that surfaced as people talked about stepchildren who seemed unwilling to show real concern for their parent who has dementia and his/her caregiving spouse.   In some of the cases there was very active interest by those same stepchildren in the disposition of the estate when that time would come. 

That conversation brought up lots of legal issues that need to be dealt with whether or not there are any problems in the family.  This is one of the times I am especially grateful that we have a healthy family with a deep and genuine love combined with intellegence and common sense.  It is hard to hear about some of the ugliness that can emerge when money issues trigger a mindless greed in people. 

One of the dynamics of dealing with dementia is that, since the executive function of the brain ceases to work properly, the ability to make well thought out decisions ceases.  Gathering and processing information as is necessary for making good health decisions or financial decisions, is no longer possible, at least consistently. 

With dementia of any sort, the progression of the disease makes it important to act sooner rather than later in planning for future contingencies.  With the Lewy Body dementias, the roller coaster pattern of times of great lucidity mixed with times of the inability to track thoughts, makes it especially important to make long term decisions and set in motion processes that will insure that legal matters will be in order no matter what comes.  The goal is first of all to keep all the family resources available for whatever care is needed for the one who cannot care for him/herself.  Secondly, it is to provide the usual care in estate planning so that the wishes the deceased are reflected in the disposition of their possessions.

While many of the legal issues are related to the time of death, some are matters of concern for the living.  All of us, no matter our age, need a Living Will.  We need people designated to make decisions when we are not able to do so for whatever reasons.  For a Caregiver spouse, the question is, who shall that be.  If legal documents designate a spouse who has dementia as the one who has Durable Power of Attorney for Health Care Decisions, that spouse will be put in the position of carrying a decision-making weight beyond their ability.   If that spouse is appointed attorney-in-fact for all the rest of the decisions that need to be made through a Durable Power of Attorney, the same will be so.  There will be a vulnerability to manipulation by others who may not be a trusted part of the immediate family when major decisions need to be made.  All someone would need to do is obtain a signature in front of witnesses, and the wishes of the Caregiver and spouse could be frustrated.

The way to proceed in the area of all these legal matters is to locate a reputable Attorney who specializes in Elder Law, preferably a member of the National Academy of Elder Law Attorney’s, Inc.  (NAELA).  Powers of Attorney should name someone completely trustworthy who is committed to the wishes and the well-being of the Caregiver.  The transition from spouse to Son or Daughter or other trusted family member can be difficult for the one suffering from dementia.  It is essential to make any needed changes with the full knowledge and participation of all those impacted by those changes.  If no one in the family can be found to serve as the agent for the Powers of Attorney, a Guardian may be chosen.  Often the court has a list of people who can serve in that role. 

Then there is the issue of how a Will should be structured when there is a spouse with a form of dementia.  The challenge comes if the Caregiver dies before the spouse with dementia.  If the all the assets transfer to the spouse with dementia, as was so with the Powers of Attorney, that spouse will have decisions to make that he/she is no longer able to make, and he/she will have a vulnerability to manipulation.  If all the assets are in the name of the spouse with dementia, they are all subject to being drawn down if nursing home care is needed. 

There are a number of options that the Elder Law Attorney can lay out for the Caregiver and Spouse.  If there are trusted children, it is a fairly simple matter to assure that all the resources will be used for the spouse with dementia should the Caregiving spouse die first.  All the assets are put in the name of the Caregiver with the children as beneficiaries of the estate.  Again, an Elder Law Attorney needs to be consulted rather than taking advice written in a blog. 

Since beneficiary designations on insurance policies, IRA’s, pension plans (and any other instrument with a beneficiary designation) go directly to the beneficiaries listed and take precedence over anything written into a will, all beneficiary designations need to reflect the current wishes of the Caregiver and spouse. 

When there is a spouse with dementia the legal issues  are complex, but ignoring them could result in some very unpleasant consequences, especially if the Caregiving spouse predeceases the spouse with dementia.  The sooner decisions are made, the better.  

Again, the key to making good decisions and formulating plans that are legal, clear, and reflect the wishes of the Caregiver and spouse, is to find a reputable Attorney versed in Elder Law in your state. 

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.

 

May 21, 2009

Caregivers Go Public

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , |
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He was a pleasant fellow, who came to our home and snapped lots and lots of pictures judging from the rapidity of the clicking sound his camera made.  He is a photographer for the Capitol-Journal Newspaper (http://cjonline.com), one of two photographers left.  There were seven when he started.  He is a young man (at least from my sixty-six year old perspective).  It could not have been very many years ago when he began his career there.

While I certainly cannot be sure that it will actually happen, my understanding is that the article should be in this Saturday’s issue.  The article was written by Linda, who has known us and our situation for many years.  Linda works in the office of the church I served for more than a dozen years.  She just graduated from college after a long hiatus to raise a family.  In graduating from college, she has realized a goal that has been with her for much of her adult life.

The article intends to look at the Caregiving role with an eye toward how meaningful it can be for the one doing the caregiving.   The pictures showed us in our normal mode, sitting at the table, then moving to the spot by the television.  Mary Ann looked very nice. Zandra, our bath aid, did a nice job helping her get ready.  One or our Volunteers was here at the time.  Whenever Cynthia comes, the ironing board and iron come out.  What a Gem she is!  It was a busy day.  Kristie, whom we pay to give the place a good cleaning once a month, was here, spreading that wonderful clean smell throughout the house.  Clarene came to stay with Mary Ann for a couple of hours in the afternoon.  Young came over for a while (bringing some Coldstone Creamery mix of chocolate ice cream and pecans).  Young and I worked on planning a special worship service. During that time, Ann came over to visit Mary Ann.  The morning had begun with Paul and Shari to the house for our weekly two hour Spiritual Formation that meets on our back deck.  Attendance was down by two.  Eva came to stay with Mary Ann during the group meeting.

Most days it is just Mary Ann and me.  Today there was a veritable explosion of activity.  It was a great day.  It was a very public day.  What a contrast to the early years, just after Mary Ann was diagnosed with Parkinson’s Disease.

For the first five years after diagnosis, Mary Ann would not permit any mention of the disease to anyone outside of our children.  Neither her Mom nor my parents were told about it.  Her Dad died just two weeks after our wedding.  Mary Ann has always been an extremely private person.  She didn’t want people looking for signs of the disease.  She did not want people relating to her as a sick person, just as a person. She did not want pity, nor did she want others talking about it when she didn’t want to talk about it.  It was her business.

She did allow me to tell a couple of folks so that I would have someone to talk with about what I was going through as we tried to incorporate the disease into our reality.  I was very grateful for that gift.  I process things verbally.  I needed an outlet.  On the contrary, she needed not to talk with others about it.

After five years, the symptoms and side effects of medications made it obvious that something was wrong.  It was about seventeen years ago.  I remember vividly sitting at an outside table at a beer garden in Gruene, Texas.  Mary Ann was resting back at the condominium.  She had given me permission to tell our closest circle of friends (three other couples) with whom we were vacationing.  Of course they knew something was wrong, but they appreciated knowing what it was.

This has never been an easy road, but it was much easier for me when the news was finally out.  It had been so difficult to pretend nothing was wrong when it was such a huge presence in our lives.  Finally I could share it with my parents and siblings and friends and parishioners.  I have little doubt that it was easier also on our children to have it out in the open.

With the information no longer hidden, people could more openly offer their help.  Mary Ann’s co-workers could be more openly supportive of her.  I didn’t have to make excuses any longer when we could not attend activities.  At that point Mary Ann was working full time to help get the kids through college.  She was exhausted at the end of the day and needed weekends to recuperate.

When we moved here, the Parkinson’s was public knowledge.  As the disease progressed and the side effects of the meds increased, help became a necessity.  Without it, I could not have continued to earn a living.  The cost of full time care for Mary Ann while I continued to work would have come to close to my entire salary.  For me to stop working would have eliminated any income on which to live.  It was at that point that members of the congregation came to our rescue.  Margaret set it in motion.  Mary Ann has called them her angels.  If they were her angels, Carol was the archangel.  For at least six years, Carol single-handedly scheduled up to sixty-five different Volunteers, using a spiral bound pad of ruled sheets.  She scheduled evenings and weekends and weekdays, overnights.  There were people who did every imaginable task. The last two years before I retired, three people, our daughter, Lisa, Mary and Edie used the website http://www.lotsahelpinghands.com to manage the Volunteers.  Now that I am retired and doing full time care, Mary is still scheduling a few folks who continue to come so that Mary Ann and I can have periodic breaks from one another.

When the Volunteers come to the door, we might be in a situation that does not allow either of us to come to the door.  They all know, that if we do not come to the door, they should just come on in.

Understand just how dramatic the transformation has been in our household. We have changed from a completely private household with a very private person, both of us keeping a huge secret, to a very public place in which walk-ins are welcomed.

Mary Ann and I have grown in the process.  We have marveled at the generosity that has come our way now that the secret is out.  In spite of the constant stream of news to the contrary from the media, we have been surrounded by very good people, who will do almost anything to help when they see a need.

What used to be secret will, apparently, be in the newspaper this Saturday.  A few months ago, I was invited to do a live hour long interview on the radio by phone with Starr and Bob Calo-oy who do a weekly radio show in San Antonio, Texas.  The show is called Caregiving 101.  I am writing this blog, posting almost daily on the various experiences we are having as we deal with the presence of Parkinson’s in our household, taking a toll on Mary Ann as it progresses.

What was private is now public.  As the Baby-Boomers come along behind us (we are a few years ahead of the bulge), more and more will be impacted by chronic and progressive illnesses.  More and more people will need care and will become Caregivers.  For most of us, it just folds into our lives without invitation.

The public forum allows us to talk and listen and learn so that no one has to do this alone.  The time for secrets is over.  Good people want to help.  Go public.

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.

 

May 18, 2009

Caregiver’s Day Off!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , |
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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.

 

April 9, 2009

Caregiver’s Loneliness

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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A comment on a post I wrote a couple of nights ago raised an issue that is significant for many Caregivers who are doing full time caregiving all day long every day.  The writer mentioned that she often uses the time after her Loved One goes to bed to try communicate with others, since the opportunity for adult conversation is limited.

For many of us conversation that was a routine part of our daily lives with our Loved One and with others has pretty much ceased.  Especially those caring for someone with a form of Dementia find it tough to converse meaningfully.  A number of recent emails from others who are caring for spouses with Dementia have included reflections on the challenge of dealing with the lack of meaningful conversation and the loneliness that sometimes settles in.

Until I retired a number of months ago, I was active in a profession that involved lots of meetings, visiting with people, counseling folks struggling with problems, speaking in front of groups, and many hours each day communicating electronically (email).  All of that came to a halt pretty much the day I retired.  Emails ceased, phone calls stopped, meetings ended, there were no more visits to be made, no more speaking in front of groups.

Now there is one person stuck with me twenty-four hours a day, seven days a week, someone who has never really been a talker and now after twenty-two years of Parkinson’s has taken its toll finds great difficulty getting thoughts into words and sustaining conversation.  She has struggled with the challenge of having me there constantly, so I can hardly complain.  She tired long ago of listening to my voice as it drones on and on.

One comment in an email I read tonight provided an image of the Caregiver in need of communication.  She mentioned that when she was at the dentist getting her teeth cleaned, every time the Hygienist took her hands out of her mouth she started talking immediately, not stopping until the instruments were back in her mouth.

I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.

Anyone who reads this blog has certainly noticed the length of the posts.  When I write I imagine that there are people actually reading this with whom I am having conversation.

Living in a world of silence other than the sound of the television, can certainly produce a deep sense of loneliness.  I suspect there are lonely Caregivers by the tens of thousands out there.  It seems to me very likely that lots of them, probably a majority, are not computer users who have the option of going online and relating to others regularly. If the Caregivers are lonely, imagine how lonely and bored those who need the care must be.

There are no simple solutions to the loneliness and isolation, the boredom and lack of conversation that comes with the Caregiver and Carereceiver territory.  For me the battle with loneliness starts with developing a rich inner life that experiences each moment fully and fills my thoughts with wonderful images from my environment, from reading, from the lives of others I have encountered, from my own story, from a head filled with unfinished business, from intellectual and spiritual curiousity.

While I have never been a writer, the exercise of writing these posts is safisfying and fulfilling.  Reading emails and occasionally responding to those who are caring for spouses with Lewy Body Dementia is engaging.  When Volunteers come to stay with Mary Ann to give her a break from my constant presence, it takes me a long time to get out the door as I engage them in conversation.  I find myself on the phone with brothers and sisters more often than ever before in my life.  Trips to the coffee shop to get a cup of coffee take a little longer. When we attend the Parkinson’s Support Group meetings, I am not shy in speaking up.

Since I am not good at all at small talk, I know very little about sports and I am completely uninterested in debating politics, conversation just for the sake of talking is not all that satisfying.  I suppose I can talk about the weather with the best.  I do have a genuine interest in people’s stories, so given the opportunity, I will find out what you do and what you like and dislike about it, where you have lived, what challenges you have faced and how you are coping with them.  The problem when homebound by the Caregiving task, or the chronic illness, is that the opportunities for such meaningful conversations are limited.

While it helps, electronic communication is not fully satisfying to me since I thrive on the non-verbal elements of communication as well as the actual words themselves. Getting out of the house with the one for whom you are caring is worth the effort.  Go anywhere.  Do anything.  Put yourselves out there where the chance for human interaction and verbal interchange is possible.

Every job has its good points and its bad points.  The trick is to “accentuate the positive and eliminate the negative” as the lyrics to an old song say.  Celebrate what is good that the Caregiving experience brings into your life.  Refuse to give the negative more power than it is due in ruling, in defining your life. I know that is far easier said than done.

Caregiver loneliness — Are you?  What are you doing about it?  What works for you?

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.

 

April 6, 2009

Caregivers: Why so Tired?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , |
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It is about 11:40pm local time as I start this post.  It is not unusual for me to be writing until 1am or 1:30am.  Why on earth don’t I start doing this earlier?  Beyond lack of organization of time and self-discipline, there are some reasons built into the task of Caregiving.

First of all, when someone for whom you are caring cannot take care of personal needs or walk very far without falling, every waking moment is bound to the care and protection of your Carereceiver.  As a Caregiver, you are doubling the number of basic tasks associated with a human’s daily needs.  You are living two lives at the same time. 

One of the lives you are living is, of course, your own.  You know what you want and when you want it.  When living someone else’s life also, just discovering what the wants and needs are takes a great deal of attention and mental energy, especially, if that someone has difficulty vocalizing those wants and need. 

When nature calls the one for whom you are caring, he/she may not hear the call until it is too late to make it to the necessary destination.   Mary Ann can be up and off walking to one place or another in seconds.  Often I discover that she has gotten up and headed off by the sound of the thump when she lands on the floor.  It is exhausting to keep attention so tuned as not to miss those moments of need.  I have heard and believe that mental exercise is far more tiring than physical exertion.  The stamina needed to pay attention to someone else’s every move, every need, every want, uses up endless amounts of the Caretaker’s reserves.

One of the consequences of the constancy of the needs is the inability to find time to concentrate on a task that needs more than a few minutes to do.  Writing a post for this Blog cannot happen while Mary Ann is up and moving about.  My time belongs to her all the time she is awake and some of the time she is sleeping.  I suspect that the same is so for most Caregivers. 

In a sense, my day starts when Mary Ann settles in bed.  There are periodic needs during the night, but the general pattern is that the time I can call my own comes between about 9pm and 1am. Now that I am retired, I am able to sleep longer in the morning, assuming Mary Ann is willing and able to sleep later also. 

Before I retired, the pattern was about the same, except that sleeping later in the morning was not as often an option.  Those of you who are working full time and caregiving full time are likely to be exhausted most of the time, especially if you also claim that late night time as your own.  Here is the logic of staying up.  The moment the Caregiver gets up in the morning, assuming the Carereceiver gets up then also, it all starts over again.  Waking up in the morning is waking to intense demands.   To go to bed at the same time the one for whom you are caring does leaves no time just for yourself — just to be one person only.  

Of course this is an unhealthy pattern.  Sleep deprivation has very destructive consequences.  It affects negatively our ability to perform daily tasks effectively and efficiently.  We are hardly at our best.  Coping with little stresses becomes more difficult.  Mole hills actually do become mountans in our mind.  We can become forgetful, irritable, our thought processes can slow.  I need no scientific studies to demonstrate the truth of those conclusions about the impact of too little rest. 

Now comes the time to share wonderful solutions to the problem of Caregiver exhaustion.  If I had this one solved, I would not be writing this post at what now is about 12:20am.  I will offer some of the feeble attempts I have made over the years of dealing with this particular dimension of the Caregiver’s challenge.  For one thing, I structured the week so that I had some long days and some days to sleep in.  It seemed to work better for me to work many hours in one day than normal hours two days.  By the way, I realize that doing so breaks the rules for sleeping well, the ones that say, get up at the same time every day, go to bed at the same time.    Another rule I regularly break is the one that says, no caffeine later in the day.  Caffeine is my drug of choice.  Evening meetings, if I hoped to actually be awake during them, demanded a heavy dose of caffeine through my chosen delivery system, PT’s Coffee (by the way, the best in the nation as far as I am concerned — sorry, Starbuck’s fans). 

On occasion (too rarely), a Volunteer or my daughter would come over and sleep upstairs to care for Mary Ann during the night, while I got a full night’s sleep in the downstairs.  Especially when I was working, those occasional two night retreats would include nights in which I slept ten or twelve hours. 

Had I continued to work much longer, circumstances would have demanded using the local resources I mentioned in last night’s post to provide paid time covered by others so that I could get rest on occasion.  

Since it is now heading for 12:40am, it is apparent that I need counsel from any who happen to read this post and have ideas for how to minimize Caregiver exhaustion.  One possible solution would be to simply stop trying to write posts for this blog any longer.   Two reasons speak against that solution.  One is that I would be likely to just sit in front of the tube flipping between inanities there.  The second is that I find doing this writing very satisfying and energizing.  Anticipating writing adds interest to my days and makes be a better (and more sane) Caregiver.  The processing I do here has had a very positive effect on my ability to reframe sometimes frustrating tasks in ways that allow me to discover meaning in those tasks, at the same time giving my life meaning.  Why so tired?  It is heading for 1:00am now.  All in all, I am willing to endure being tired if it allows me to live meaningfully. 

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.

 

April 5, 2009

Caregiver Options for Support

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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Who can we talk with about our predicament, who isn’t tired of hearing it or just doesn’t have any frame of reference to really understand what we are going through?  It is terribly easy to become isolated.  Since conversation isn’t an easy thing to accomplish when words for one are difficult to find, let alone get out where they can be heard, a longing to talk and listen and be understood. 

Last Thursday evening Mary Ann and I attended a monthly Parkinson’s Support group meeting in our area.  The group varies in size, but lately I would guess there have been thirty-five to forty-five of us in attendance. 

I remember the first support group we attended just a few years into Mary Ann’s diagnosis.  It was in another city — a large group with Parkinsonians at all levels of symptoms.  I can remember seeing one man in particular who was so dyskinetic that it was all he could do just to stay on the chair, arms and legs flying everywhere.  I suspected it would be so.  After that visit to a support group, it has been all but impossible to get Mary Ann to another one anywhere.  It just seemed scary to see the possibilities for her future right there before her eyes.  It was a denial shattering experience. 

Now that I am retired, we have started attending a local Support Group.  Mary Ann is now far enough along in the progression of the disease that there are few, if any, more debilitated than she is present at any given meeting.  Last Thursday was one of the times we separate into two groups, Caregivers and Carereceivers.  Those who attend the support group seem to especially appreciate the evenings we divide into the two groups. 

There is an agreement we make when we head into our respective rooms.  What happens in Vegas, stays in Vegas.   We are free to talk openly about our respective struggles without concern that what we say will be shared with anyone outside those gathered there.  That means, I will not share what was said, at least in specific terms, only in general terms. 

Both Mary Ann and I especially appreciated our respective group conversations last Thursday.   In the Caregiver group, we share our unique circumstances and our central problem.  We understand each other.  We help each other by sharing how we have dealt with challenges that are just coming over the horizon for others.  We pool our knowledge and each leaves with a new piece of information, a new possibility for dealing with whatever we are going through at the moment.  If nothing else, we have had a chance to vent for a moment with people who actually do understand what we are going through. 

It takes courage to break out of our isolation and open ourselves to people, most of whom we barely know.  When I was working full time, my circumstances allowed me to talk freeling with caring people with whom I worked.   When I retired, that outlet ceased.  That support group ended.  I realize now even better just how important it is to take seriously the need to connect regularly with people who are traveling the same landscape, who can support us in very concrete ways with information and insight. 

The Leader who facilitates our group on the evenings we divide into the two groups is the Caregiver Program Specialist for this Area’s Agency on Aging.  The website for our Area Agency is www.jhawkaaa.org. I suspect that in most other areas there are such programs available.  We discovered that help is available for some of the equipment that is needed to help with the mobility and safety of our Loved Ones. We discovered that there are programs that provide respite care so that Caregivers can have a break from hours to days, including overnight.  There is even some funding that allows that care to be given at little or no cost to folks who need the help, with no income guidelines restricting its use.  While there may or may not be funds in your area, it is important to look for support options.  We cannot do this for long by ourselves.  For our sake and the sake of our Loved One, seek support options. 

In our case, the combination of family, Volunteers, paid workers from private agencies, and County or Regional programs for the Aging combine to help us find a balance that raises our quality of life.  For those who have earned income and must use paid help to keep working, there is a tax credit available for dependent care. 

One piece in the support puzzle for me is an online group for the spouses of those who have Lewy Body Dementia.  Since Mary Ann has now been diagnosed with Parkinson’s Disease Dementia, the group has been a meaningful addition to my world of Caregiving.  That group is available at any time day or night.  They are as close as the keyboard on the computer.   Members of that group share completely openly, confident that others understand.  Someone in that group has been, is now, or will be experiencing their plight.  Members can cry on each other’s shoulder or laugh at the silliness we sometimes encounter.  Whatever the chronic disease that lives at your place, there is likely to be an online group to be found by searching for the name of the disease adding words like support or support groups.  I found this group through the Lewy Body Dementia Association site,  www.lbda.org.

Caregivers do not only give the hands-on care, we are charged with the task of seeking out and managing options for support that keep us and our Loved Ones safe and healthy.  When someone asks what he/she can do to help, suggest conducting a search of resources.  As Caregivers we are often overwhelmed with the steady stream of needs.  It is important for each of us to move out of our isolation and through our reticence to reach out to others for support. 

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.

 

April 2, 2009

Caregiver Self-Care: Renewal Retreat Results

Posted by PeterT under Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , |
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Early this evening I returned from two nights and three days at St. Francis of the Woods Center for Spiritual Renewal in Oklahoma.  As I had anticipated in my last post, the experience was at least as meaningful as I had expected it to be.  The five hour drive provided transition time, time to unwind, time for my mind to race through whatever it needed to process so that I could fully experience the time there engaging in each moment as it came. 

It takes time to disengage and let go of all the pressures and responsibilities of Caregiving and work, if you have other work in addition to Caregiving.  A three day Retreat allows time that needed time.  Knowing that Mary Ann was in capable hands during the time I would be gone was important to allowing the freedom to let go. 

For those who know our household, it is hardly necessary to add that the trip down included a stop at Braum’s for a two scoop hot fudge Sundae with lots of salted pecans, topped with whipped cream and a cherry.  Let’s be straight about this renewal business.  Ice cream (or whatever your favorite treat is) goes a long way toward nourishing the rest and renewal muscles. 

The retreat content was as described in my last post.  There was no agenda.  I needed time to be free to initiate activity as I felt the need.  When Caregiving, of necessity, Mary Ann’s needs take priority.  By contrast, on this Retreat, I decide what to do and when to do it. 

I walked outdoors for hours.  I walked slowly, savoring the sounds and sights and sensations as they came.  I engaged fully each moment.  I felt the warmth of the sun and the feel of the breeze early the first evening.  I watched and listened intently for birds especially.  I watched an Oklahoma storm develop and pass over.  During nine years living in Oklahoma City, both Mary Ann and I came to love watching those storms develop.  

When the storm started producing lightning, I had enough sense to head back to the cabin.  I knew that Mary Ann would be pretty irritated if I was struck by lightning and she was left to fend for herself.  In fact, if I were hit by lightning and did not survive, she might very well have me cremated and spread my ashes in a fabric store to languish there for an eternity.  Given the option, I would prefer fire and brimstone.  Needless to say, I moved to safety very quickly. 

The next day was chilly, but bright.  I walked again.  On occasion I stopped to sit on the camping stool tied to my backpack to read or just sit and look and listen.  I suppose I accumulated eight or so hours out in that beauty that day.  Today I walked again for a couple more hours, this time walking faster, covering the same territory as the last two days, looking for surprises. 

In the course of my time outside, as I looked up at a nest high in a tree with my binoculars, I was startled by two eyes staring back at me as a Long-Eared Owl sat on her nest.  I was examined by a couple of nearby wild turkeys to see if I was a threat.  Apparently they concluded that I was not.  I was checked out by five circling Turkey Vultures trying to determine if I would be a fitting afternoon snack.  In fact this morning three circled overhead and one got so close that I could actually hear his wings flapping.  After seeing a White-tail Deer run off in the woods, a buck that was still out of sight tried to intimidate me with his loud and threatening snorting.  There is more, but that is for another post for those who love to walk in nature. 

I have to say that while there was utter solitude most of the time I was on the Retreat, I never felt lonely, I never really felt alone.  In those settings I feel a fullness, a wholeness that is sometimes hard to feel when I am in more populated settings. 

When I was at the farthest point on my wanderings, sitting in a cluster of trees, turkeys nearby, I took out my cell phone and called Mary Ann.  She wasn’t home at that moment, but I left a message with a few words about where I was and what I was doing, letting her know that I was thinking of her and that I love her. 

There is something that has come to be so for me about solitude, meditation and the power of renewal imbedded in them.  If the experience draws me away from relationship, isolates me, separates me from those I love, it is not, in my eyes, an authentic experience.  While as full time Caregivers, we need time for breaks, moments of escape, that is not the purpose of a Renewal Retreat.  If my goal on the Retreat were just escape, it would make of what I do as a Caregiver bondage instead of a meaningful calling.  If escape is the primary purpose of the Retreat, it will not renew, but do the opposite, magnify the frustrations and make the return home a time of dread. 

The purpose of a Renewal Retreat is to find yourself to be whole, fulfilled, grounded and full of life, life that cannot be stolen from you by challenging circumstances.  The images and sounds and smells and feelings, the experiences can become a well from which draughts of refreshment can be drawn in a moment’s reflection even during a busy and even frustrating day of Caregiving. 

The motivation for a Renewal Retreat is not simply self-serving.  It is pretty tough to have a meaningful relationship with someone you claim to love whether they are in need of care or not, if you feel unfulfilled and empty.   Then relationships come to be about filling our unfulfilled needs.  Relationships come to be about getting instead of giving because we have nothing to give.  Ultimately, no one else can make us whole, give our lives meaning, fill our needs.  A Renewal Retreat as I experience it gives me a sense of fulness and meaning that helps me discover again who I am, so that I can respond to Mary Ann’s needs without losing myself.  I can be a better  Caregiver and a better husband — never even close to perfect, just better.

Just as a Post Sript, the retreat ended with a lunch that is provided weekly for the staff and those who are a part of the leadership at St. Francis.   Gratefully, guest retreatants are welcome to join them for lunch.  A more delightful crew would be hard to find.  I especially enjoyed the reflective time after lunch, processing spiritual renewal and learning from one another.   Renewed in solitude and in community — what a treat!

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.

 

March 30, 2009

Caregiver Self-care: Retreat

Posted by PeterT under Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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Tonight I am anticipating a three day retreat from Caregiving.  It will begin as soon as the car is loaded and on the road in the morning.  I will travel between five and six hours on the Interstate to get to a place that has provided respite and renewal to me off and on for almost twenty years.  

I will tell you some of things I look for in a Retreat, some of the things I do, but what is more important is for each of you who serves as a Caregiver to find a place that renews your spirit.   What provides you with respite and renewal is likely to be much different from what does it for me.

The place I will go is called St. Francis of the Woods Spiritual Renewal Center.  To go there requires no particular Spirituality.   There I will find complete solitude.  The cottages are very comfortable and very few.  That there are very few cottages is the reason for my expectation of solitude.  There will be no agenda to follow, no meal times to honor.  It will be in complete contrast to the Caregiving Role that is done entirely in response to someone else’s needs. 

There is a beautiful, ornate, Orthodox chapel there for those who appreciate that environment.  There is a library filled with books intended for those seeking renewal.  St. Francis includes a five hundred acre working farm.  There are pastures and woods, a chicken house filled with clucking hens and crowing roosters.  Fresh eggs can be purchased — the honor system – get a dozen from the fridge and leave the money in the basket.  There are paths carved out in the woods, with the occasional bench.  There are areas with no paths, filled with wildlife to be surprised as you come into sight.  There is a small remote field a decent hike’s distance across a trickle of a creek, maybe a mile and a half’s walk away from any of the cottages.  It is surrounded by woods with only one path for a tractor to reach it for any planting or cutting of hay.  That is the spot that touches my spirit and renews me. 

The drive there is a vital part of the experience.  The music CD’s are carefully chosen to help me transition from activities and attitudes that fill my days at home (and at work when I was still working full time).  That time allows me to be prepared for the hoped for renewal time on the Retreat.   The return trip is often a powerful time, since, with an uncluttered and rested mind, solutions to problems often emerge, decisions can be made with clarity.  For me,  a two night stay with travel there on the first day and travel back on the third day is the most effective pattern for renewal.

On the Retreat itself I will carry with me a couple of books that provide me with the spiritual tools I need to stay grounded and grow in learning how to quiet myself so that I am receptive to renewal.  I will bring a couple of books on Quantum Physics, since, while I know very little and struggle to understand them, I find them to enlarge my perspective in a way that excites my spirit.   I will take with me some good binoculars and a spotting scope given to me by my Son.  I will engage to the fullest extent my senses will allow, every dimension of that holy space. 

I will do some journaling periodically as I sit on the three legged stool that I strap to my backpack, or one of the benches if it happens to be in the right place at the right time.  The journaling tends to take me to a place of perspective on my life’s journey.  When I am on retreat, I have a chance to move out of reactive mode.   I can rediscover my center of being as a single individual in a magnificently huge universe.  I can look from a distance at my relationship with Mary Ann, with the caregiving that is a part of our relationship.  Without fail, my love and commitment to her has been renewed on those retreats, the spiritual strength that sustains me has been renewed and enlarged. 

Self-care is not simply an optional task among the many that come with life’s challenges, especially for those charged with the care of another human being.  Self-care is what allows the possibility of being of any use to anyone else, especially the One for whom you care. 

I suspect the question that first comes to mind for many Caregivers is how on earth it is possible to find time to go on a retreat.  Who will care for my Loved One while I am gone?   How will I afford it?  It will only happen if you accept that your self-care has priority.  If something is needed badly enough, we find a way to do it.  We need to eat.   We find a way to do it. 

I went on these retreats when I was working full time and caring for Mary Ann full time when not away from the house at work.  There were some Volunteers who developed the confidence to be a part of the crew who stayed with her when I was gone.  Our daughter and her family chose to move to town to help us out for a couple of years.  During that time, she took one or both of the nights I was gone.  My daughter and her family have driven ten hours to visit this week, encouraging me to take this three day Retreat during part of their stay.

There  are some local organizations that for a charge (one charges $150) will come overnight for a twelve hour shift.  There is a local facility that will provide residential care for an overnight, again, for a charge.  When I began going to St. Francis, the suggested donation was $6.00 per night.  Now it is up to almost half the cost of a night in a motel — a bargain to say the least. 

Your task is to determine what it is that would allow you to disengage for a time from the stream of demands coming your way, what activity would be renewing to you.  It is not impossible to do.  It may is terribly difficult, but it will never happen unless  you decide it needs to happen, it is worth doing.  Do it once or twice and you will understand why it needs to happen.  Take each obstacle to doing whatever renewal activity would be meaningful one at a time.  Do not allow one of the obstacles to sabotage the whole idea.  Reframe the nature of the retreat if need be.  That may mean finding a B&B an hour away instead, or a friend’s vacation home, or the farm still owned by a family member. 

Self-care is not one option among many for a Caregiver.  It is precisely what is needed to do the very task you are called to do.  Love the One for whom you are caring enough to take care of yourself.

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.

 

March 29, 2009

Caregivers’, Carereceivers’, Volunteers’ Safety Issues

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I got the dreaded phone call.  I was at work, Mary Ann was at home with a wonderful, capable Volunteer who had agreed to stay with her for a three hour shift.  Some days there were as many as five different people to cover all the time I was at work, which often included evening meetings.   Mary Ann had fallen in the bathroom and hit her head on the ceramic tile floor. 

Understand, Mary Ann is not the sort to just sit still and wait for someone to tell her when she can get up.  Her independence (a euphemism for stubbornness) has carried her through challenges any one of which would have taken a person with less strength of will.  Mary Ann got up to use the bathroom — a simple and necessary task.   Parkinson’s or not, Mary Ann can move like lightning.  She moves with a determination that says, don’t mess with me, I can do this.

Either before or after the task at hand, as she stood, Orthostatic Hypotension entered the story.  That is one of the many things we have come to know about.  We now know more than we ever had any interest in learning.  I could have gone to my grave without ever knowing what Orthostatic Hypotension is, and would have been content and fulfilled.  When anyone of us stands up, our blood pressure drops.  In an instant our blood vessels constrict to raise our blood pressure so that, among other things, our brain has enough blood to function fully.  OH is what happens when people who have a compromised autonomic response (in her case, medicine and disease process) stand up and the resulting blood pressure change is not corrected.  The person faints.  The doctors call it Syncope.  Somehow knowing the medical jargon makes me feel better able to deal with the multiple medical professionals on our team.  They may very well think it sounds silly, since I am sure I don’t always use the terms correctly. 

Here is the important part of this story.  Mary Ann fell on that hard floor, smashed her glasses into her face producing a bloody nose that would not quit.  What appeared worse than that was the giant hematoma on her forehead.  Because of the blood thinning character of Plavix, which she takes to help prevent another stroke, her forehead filled with enough blood to bring the protruding bump to the size of a softball. 

When I arrived home, she was still on the floor with her face down, blocking our veiw of the hematoma.  It became obvious as soon as I got her up off the floor that we needed to get to the Emergency Room.   

How can we keep our Loved One safe if we use Volunteers? 

First of all, we can’t!  We cannot keep our Loved One completely safe whether we use Volunteers, or paid Professionals, or never leave her/him alone.  Either we come to terms with that reality or go completely nuts, becoming useless to our Loved One and ourselves. 

With that said, we do have an obligation to use whatever means are at our disposal to create as safe an environment as possible.   This is not just about the safety of our Loved One.  What can we do to keep ourselves and the Volunteers safe?  If we hurt ourselves trying to help our Loved One we will cease to be able to give the care that is needed.  If a Volunteer hurts him or herself, we will feel responsible for our part in letting them be hurt, their lives will be disrupted, they will not be able to help your Loved One, and someone will be liable for any costs associated with their care. 

Are you scared yet?  Have you just phoned all the Volunteers and told them to stay home?  While we cannot guarantee no one will be hurt, we can make responsible decisions on what to do to minimize the likelihood of someone being hurt and at the same time prepare for that contingency. 

What follows are just a few of the things we have done over the years to address safety issues:

Mary Ann wears a gait belt at all times — something she hates.  A gait belt is just what is sounds like, a belt that is a help when she is walking.  I walk beside her (when I can get there fast enough) and put my hand lightly on the back of the belt.  Because it is at her waist, high enough in relation to her center of gravity, if she begins to get out of balance, it takes very little pressure to pull her back from going over.  We found a non-profit that makes them in a variety of colors, www.gaitbelt.com.  Gratefully, they are also very inexpensive.

After Mary Ann’s fall in the bathroom we began by putting down on the floor mats for children’s play areas. We now use them in the garage  to cover the area she is in when she goes out the door into the garage to get in the car.  We got ours at Sam’s Club, but here is an online link showing the floor covering:  http://www.matsmatsmats.com/kids/playroom-floor/soft-floor.html  We found a shower mesh floor that avoids the problem of mold due to moisture trapped under the mat, it resists mold.  It can be found at http://www.duragrid.com/shower.html  That is what now helps protects Mary Ann from hurting herself badly if she falls to the floor in the bathroom.  It looks good and is easy to install and remove for periodic cleaning.

We found that some of those people who served as Physical, Occupational and Speech therapists were willing to give their time to come to a gathering of Volunteers to demonstrate how to help Mary Ann without hurting her or them.  Once in one of those training sessions Mary Ann got on the floor and the therapist showed how best to help her up.  They were willing to demonstrate simple activities that could be done with Mary Ann to provide appropriate mental and physical stimulation.   

We put together a booklet filled with all sorts of information.  It includes contact numbers, whom to call for help getting her up if she falls, what hospital we use, directions to the house that may be given to the Emergency folks if 911 must be called.  The booklet is to go with her to the hospital, so it includes the names of Mary Ann’s doctors, a current list of medications, her Living Will.

It also includes a description of what to do when Mary Ann gets up to walk, what to do and not do when she begins to fall, what help she needs with personal tasks.  It lists things that are normal for Mary Ann but might concern a Volunteer, dyskinetic (involuntary) movements, dizziness, confusion. 

We talk through with new Volunteers what to expect.  We assure them that we understand that none of us can control what happens, to help relieve them of concern that they will be held responsible if she falls and hurts herself.

Finally, we have obtained an umbrella insurance policy to help provide for the contingency that someone might be hurt trying to help Mary Ann.  With so many people in and out of the house, there is a vulnerability that comes. 

After the fall, we took Mary Ann to the Emergency Room.  Even though she had fallen flat on her face on a ceramic tile floor from (apparently) a standing up position, she broke nothing, not even her nose.  It took hours each of two days to get the nosebleed to stop.  When the packing came out a few days later, to our surprise, it did not start bleeding again.  She did not have a skull fracture but was pretty confused for a few days.  We did need to get a new pair of glasses.  Mary Ann seems to be made of iron.  She has fallen multiple times, sometimes more than once in a day, but has broken no bones. 

Safety is an issue whether there are Volunteers or not.  Our job as Caregivers is to do what we can to create as safe an environment as is reasonable given the place in which we live, the resources we have and our Loved One’s need for some independence.  Having done that, it is time to let go of the constant terror we could choose to embrace.  Life is too short to waste living in fear.  Live safely, but live. 

What are some things you do to make your Loved One as safe as possible?  Do you use Volunteers?  Where do you find them?  How do you prepare them?  How is it going?

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.

 

March 28, 2009

Caregiver, What can I do to Help?

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , |
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I have heard it hundreds of times when listening to folks who want to help when someone’s spouse has died, “Call me if you need anything.”   I have said it.  Sometimes it is said because the person offering just doesn’t know what to do to help. They probably already have brought food to the house. Sometimes it is said because the person saying it knows there will be a time later when the first wave of attention has subsided that the needs will come. Sometimes it is said just to have something to say, and the one saying it has no expectation that he/she will be called.

My experience has been that people do want to help when there has been a death or when chronic illness has entered the life of a friend. First of all, people genuinely don’t know what to do. They don’t know what to offer to do and when to offer it. They really do want you to call and ask.

There are some problems with the offer and even the intention.  First of all, you may not know what to suggest, what you need.  You may have very little idea what would be helpful to you, until whatever it is actually becomes an identifiable problem.  It is hard to know what people are actually willing and able to do.  It is hard to know when to ask them.  When will they have time to do what you have finally discovered would be helpful? 

Assuming you have decided what you need done, how do you muster the courage to make the phone call?   If you make the call and ask, what if they really don’t want to do it, or need not to do it, but they say yes because they don’t want to hurt your feelings?  What if they say no, for whatever reason?  Do you dare call them again?  They will tell you to call again, but how long should you wait?  You certainly don’t want to hear a “no” again.  It doesn’t take too many times calling for help before you begin to feel as if you are begging, manipulating, wearing out your welcome.  The last thing you want is for your friends to begin to dread your calls. 

Then, of course, you should be able to handle it all.  You are a capable person.  Why should you ask someone else to do something  you are perfectly able to do?  If you ask people to help you will feel obligated to them.  You will owe them something in return.  You have enough to do just taking care of your Loved One, the house (inside and outside), the car, your job, making meals, doing wash — the list is endless.  How will you have time to return the favor or at least adequately thank the person, compensating them with the efforts you put into those thanks?

Let’s begin with the reason for letting people help.  The truth is, the real truth, people need to help other people.  We are wired to live in community.  That means people need to help each other in some way.  Whether you understand humans to be intentionally created by a Someone, or the product of accidents of a natural process, our DNA leads us to work together.  That is how we have come to accomplish so much as a species.  To be truly human, we need to do part of a larger task so that we all can survive.  People need to help.  How can they help if no one is willing to let them??  To allow someone to help you is to allow them to grow and flourish and find joy and meaning and satisfaction as the truly human beings they are constructed to be.  Your need opens possibilities in the lives of others, your friends.  Care enough about them to let them help. 

That sounds reasonable (at least to me).  The question is, how do we ask, given all the reasons not to call?  In our years of dealing with Parkinson’s and finally coming to the point of simply not being able to do this on our own, we have come upon a way to ask for help, a way that avoids almost all of the disincentives to calling people for help. 

It started this way.  One winter, during one of the dramatic downward plunges on our roller coaster ride, Mary Ann could no longer be left alone.  I was working more than sixty hours a week at a terribly demanding job (technically I was on call twenty-four hours a day, seven days a week – seldom but sometimes called out during the night).  I was too young to retire and survive financially.  We couldn’t afford the fifteen to twenty dollars an hour for paid caregivers.  Multiply that amount by sixty hours per week and see what it would have cost. 

I was serving as the Pastor of a large and active congregation.  Our Parish Nurse immediately got on the phone and called some people for us, asking if they would stay with Mary Ann.  They did!!!  Margaret phoned. They could say yes or no to her with no concern for hurting our feelings.  They could decide for themselves if that was something they had the time and interest in doing.  When finally Margaret could no longer serve all the other folks in need in the congregation and make all those contacts, Carol took over.  She seemed to enjoy making the calls and talking with people and making such a difference in our lives — and serving the congregation in an important way.

There were over sixty-five Volunteers at one time in these last seven or eight years.  When Carol’s health made it impossible for her to continue that full time task, it was the time that our Daughter, Lisa, and her family moved here to help us out.  Many Volunteers were still needed. Mary and Edie were added to the coordinators doing the calling.  To this day I have no idea how Carol managed that task by heself all those years. 

Here is where technology entered the picture.  Under Helpful Caregiving Resources on the right side of the page of this screen there is a website that has made the impossible possible.  It is www.lotsahelpinghands.com.  It is a free website that allows coordinator(s) to schedule people to fill needs of all sorts.  We have used it to schedule Volunteers to stay with Mary Ann, people to give rides, provide food.  Any tasks can be scheduled.  The site sends out Email reminders periodically up to the day before the person’s scheduled task.  For those who do not do the computer, the coordinator makes phone contacts and enters the information.  People can go online and schedule themselves in a slot that has not been filled.   Check it out.  It is a powerful, very well constructed site, and it is free!!

What can people do to help?  Someone who wants to do something from home can do the phoning and scheduling.  Some people are willing to help by driving your Loved One to or from something when you are not available to do so.  If you need a second set of hands for that trip in the car, someone may be willing to help.  We have some folks on a list who will come immediately if they are available when Mary Ann has fallen and the Volunteer with her is not able to get her up.   There are people who will stay overnight with her if I need a night’s rest.  There are people who have come and picked up clothes to iron for us.  There are folks willing to shop or run errands for us if we can’t get out.  Of course there are many who are happy to bring some food over.   Develop a list of ways people can help.  Maybe you could do it all — but I doubt it — not for long.  Ultimately, insisting on doing it all by yourself will remove your ability to do any of the Caregiving. 

Caregiver, “What can I do to help?”  Have an answer ready, many answers.  Have a way for them to help by doing what they are able to do,  what they want to do, when they can do it.  You are only human.  You cannot do it all.  They need the opportunity to help, not just to be only human but to be truly human. 

Think about it.  What help do you need?  What can people do to make a difference for good in your life?

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.

 

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