De Nile.

I was talking to a caregiver today about various things to do with his care-taker, and something interesting came up that really sparked an emotional reaction.  He was talking about the fact that his siblings were having problems accepting that their parent was experiencing signs of dementia.  He was exasperated with their viewpoints, especially since they didn't see this parent very often, so were basing their opinions on very little fact, just the little visits they had had, during which the parent's growing dementia wasn't too obvious.  They were of the opinion that the caregiver was exaggerating the problem for his own motives, or just wasn't reading the situation correctly.  It was obvious they were very deeply in denial.

I felt the familiar impatience I feel whenever I hear about a family member's denial, because usually the problem is so very obvious - and heartbreaking - that I can't understand why they can't see what is clearly in front of their face.  Since I am a caregiver advocate, I am almost always on the side of the caregiver, rising up in irritation on their behalf because it just is so counter-productive and, often, harmful to be in denial.  As I felt this reaction, however, it caused me to reflect on my own experience with Dad, and how I, myself, had floated down De Nial river myself for a good long time.

It has been so long since the beginning of our troubles with Dad, and things are running so smoothly now, that I really forget some of the negative and potentially dangerous ways we ignored what was right in front of our faces.  More precisely, I didn't ignore it, but I completely lacked the physical, emotional, and mental strength and fortitude to address it.  In this way, I am a little different from most of the denial stories I have heard - I knew Dad had dementia and had no problem(relatively speaking) accepting that, but I left stepping in and acting on his behalf for far too long.  I told myself that he was doing fine, that he hadn't burned the house down yet or wandered off and been found by the police - until, of course, he was.  And that was when I knew it was too much, and too late to ignore, and that I had to step in.

Luckily, it wasn't too late, and nothing terrible happened, but it is true that Dad's condition could probably have been helped by receiving proper nutrition, care, and medication a little sooner.  It is also true that he probably lost some money through poor investment choices and inaccurate banking.  In all of these things, I was so, so lucky that it wasn't worse.  That he did not, in fact, hit someone in his car, or burn his house down, or gave away or was scammed out of all of his money - any of which could have easily happened.

As I listen and counsel, I must remind myself why we do what we do, and that it is human nature not to want to see something negative that may impact us in a negative way.  Sometimes it is hard to act, whether physically, mentally, or emotionally, and I need to think back to the time when it was hard for me and remember why.  I need to remember to see the whole picture, including the parts I don't necessarily want to, and use that to help whoever I can.

How It Feels.

There's a great blog/information site about Alzheimer's and dementia called "Alzheimer's Reading Room" begun a few years ago by a man who cared for his mother with dementia.  While I'm sure he started it as a way to write about his feelings and difficulties as a caregiver and losing his mother, it has over time become something of a clearing house for articles, information, studies, other blog posts, and other information that he searches out and links to or posts on his site.  It is one of the most well known health/dementia blogs and well worth a (free) email subscription.  Today, he had posted an article written by a well-known author and blogger, Marie Marley, that put into words something that I've actually been thinking about the last few weeks - how it feels to be the person with dementia, not the caregiver.

It's not as though I've never thought of or sympathized with the person suffering from dementia, it's just that the advocacy of caregivers, not care-takers, has become my focus.  I tend to see life from the point of view of a caregiver, and I feel strongly about how they are overworked, overwhelmed, and over-tired.  I want caregivers to have the tools they need to deal with the difficulties of caring for someone else, and I want them to feel as if they matter just as much as their care-taker, a fact that seems to get lost in the shuffle of caring and thinking about someone with an illness.  It doesn't seem fair to me that caregivers have to put up with so much - but again, I am acting from my own personal experience - and it is possible that I should practice a little more empathy towards the care-taker as well as the caregiver.

Just as this article describes, it must be horrible to lose so much, to know that something is horribly wrong and to be reminded of it on a daily basis.  Marley describes so well the embarrassment, humiliation, confusion, and discomfort that we all have felt from time to time when we messed up or didn't have the right answer - something that dementia sufferers must feel over and over as they get something incorrect or do the wrong thing and go the wrong place.  I can't imagine repeatedly trying to explain and process the events and people of the present to myself when all I had were some spotty memories from the past.  It must be terrible.

It must also be terrible to have to accept help constantly, all the time, every day, 24/7.  I actually know what this feels like, because at times in my life, I have been physically incapacitated for weeks at a time - dependent on others for assistance and patience.  I have intensely disliked these times, just as a I dislike asking for help, so I have somewhat of an understanding of how hard it must be to feel all your skills and knowledge and abilities slip away, to the point where you can't do anything for yourself.  I'm a little sorry I had to be reminded of it; the fact that it is always easier to be the stronger one, even if you are working your butt off caring for someone. 

Although I was already coming to this conclusion myself, she convinces me to have more empathy for those who can't help what they have become.  I will continue to be on the side of the caregivers - fighting for their rights and needs and lives -  but I can only believe that having a little more understanding for what a dementia sufferer, like my father, is going through, will help me help them. I encourage you to read the article, and check out "Alzheimer's Reading Room" for more informative and touching posts.


http://www.alzheimersreadingroom.com/2013/06/how-do-people-with-alzheimers-really.html

The Lies of Father's Day Cards. (Updated Version)

I was standing in the Post Office a few weeks ago, trying to mail a package, when I saw the rack of last-minute cards: the small selection of birthday, get-well, congratulations, and holiday-of-the-month cards meant to be grabbed and mailed (since you're already at the Post Office!) by those who remember an occasion at the last minute.  There were, of course, Father's Day cards, and, since I was waiting, I looked through the seven or eight cards they had with the intention of getting one for my Dad. (I haven't always sent occasion cards to Dad in the last few years, since there isn't much point, but lately I've been into it.)  I found, however, that for one reason or another, none of the cards really fit my relationship to my dad, nor did they fit what kind of person he was.

I don't know why it seemed important to me that the message be truthful or honest about the relationship we had - after all, it's not as if he was going to be reading it and understanding it.  I knew that his caregivers would probably be reading the card to him, and for some reason, it seemed vital that they weren't given the wrong idea - that they wouldn't look at the message and either believe it was true when it wasn't, or know it wasn't true but that I was lying and saying it was.  I'm not even sure why it mattered - I guess I just felt a little confused in my head - but it seemed important to portray our situation honestly.

The cards, with their uplifting messages and grateful poems, highlighted a problem I've had for many years - even before the dementia - that my experiences with my father don't fit the Hallmark model.  I've always had trouble finding an appropriate cared, usually because the messages don't fit my perceptions. My dad was a good dad in some ways, but I experienced him as lacking in others. This leads me back around to a problem I've made one of my hallmark, soapbox caregiving issues; the fact that not all parent/child relationships were rewarding, positive, uplifting, healthy, or even particularly nice, yet people are supposed to start caring for these parents willingly and happily because its the right thing to do, despite their feelings about the parent.  I still feel like this is one of the biggest deliberate misdirections in healthcare/caregiving/aging.

Many of us didn't have the closest relationship with our parents, while some people had downright abusive relationships with their parents. Lovely pictures of golf clubs or ties or sailboats or tools, partnered with messages about how much we owe to our Father's guidance and love and dedication, are more often than not, inaccurate.  Knowing this, and feeling the frustration, we still buy and send them because of the cultural myth that all childhoods are good, and all parents supportive.  We must not let the metaphor of the heart-warming Father's Day card be a caregiving cover-up.

Just because that parent now needs care, doesn't erase the relationship and events that came before.  If an adult child decides to take on the care responsibilities, there must be space for all of the feelings that come with this new reality - including resentment, anger, and grief from the past, as well as resentment, anger and grief from the present.  There must be a match between the present and the past - past events can't be whitewashed by the demands of the present, they must be acknowledged.  Caregivers must be able to say, 'Yes, I will take care of my parent now, but it doesn't negate the past and my feelings about what happened.'

In the end, I chose a card with a pretty front, showing a sail boat on a lake - which I know in the past he would have enjoyed looking at since he loved sailing.  Unfortunately, the printed message was along the lines of, 'you were the wind beneath my wings', but I knew he wouldn't read it anyway, and I wanted to send something, so I sent it.  Every year, when it comes time to do a Father's Day post, I am surprised that another year has rolled around and Dad is still with me and I need to say something about him - thinking this might be the last year - and yet, here we still are. I do believe I love my Father and that he probably did the best he could, and I'm sorrowful for what has happened to him, but that doesn't negate my experiences and my feelings - despite what Hallmark has to say.

What's Really Going On.

I was counseling a caregiver the other day who was having trouble with her husband.  She is unable to go see him in the facility where he lives because he has focused all his anger and paranoia on her and becomes enraged and agitated when she shows up.  The poor woman must rely on the staff at the facility and a trusted private caregiver to take care of him and keep her aware of how he is doing.  However, he has recently discovered the public phone in his wing and is calling repeatedly throughout the day, asking her to bring him things like his address book, his briefcase, important papers he says he needs, clothes, and other things.  He says he needs to make business calls to doctors, lawyers, and various other people and gets very agitated if she doesn't agree.

She asked me what I thought about the staff suggesting she not visit him at all, and whether that was the best thing to do.  She also asked what I thought about these phone calls and whether it was okay not to answer all of them; why he might be asking for all of these things; and whether she should make them available to him.  I could tell she felt terribly guilty about not visiting him and not taking his calls and was uncertain about what to do.  I told her that she should go along with the assessment of the caregivers, and that a visit, while perhaps soothing her feelings and sense of duty, would only rile him up.  I suggested that she use the time to get some rest, take care of her health, and do all the things she hadn't been able to do when caring for him.  As for the calls, I opined that it was perfectly fine not to answer the phone all of the time when she knew it was him calling, and that fixating on one activity or need was fairly common with dementia.

Then we started talking about his requests for his address book,briefcase, etc., and whether she should indulge those requests.  I told her that it was important that she look beyond what he was asking for to the why.  When someone with dementia fixates on these objects or activities they think they need, especially things relating to their former lives, it is not really about the objects or tasks - it's really about what is happening to them.  People suffering from dementia know that something is wrong, that they are not functioning as they used to, and they are understandably agitated and fearful about it.  They are trying to process current events and realities through old roles and memories and the emotions involved can be almost overpoweringly frightening.  Their damaged brains rationalize that if they can only find this item, or perform this task, it will soothe the discomfort they are feeling and bring their world back into balance.  The terribly sad thing, of course, is that it won't.

I remember Dad fixating on events or tasks that we just had to do, or things that he had to have, that really served no purpose.  All I could do was try to soothe the feelings he was having.  I suggested to her that she try to provide things to him to fill his requests that couldn't actually be used; an address book with incorrect phone numbers, or his briefcase filled with unimportant papers.  But most of all, I urged her to just have patience and try to understand what he was actually asking for - some sort of explanation and fix for what was happening to him.  Trying to remember that when someone with dementia is demanding something, they are actually needing something quite different - our understanding, patience, and empathy.

Guest Speaker!

Mark your calendars!  I've been asked by the Alzheimer's Foundation of America to be a guest speaker on one of their popular, very helpful Teleconferences.  I'll be speaking about end of life issues and the public is welcome to call in and talk to me.  Very exciting!


Care Connection Teleconference
Thursday, September 12, 2013
1:00 p.m. - 2:00 p.m. (ET)
This free teleconference is designed for both family caregivers and professional caregivers of individuals with dementia. Joy Walker, hospice worker, bereavement counselor, and author of "Three Years and Thirteen Dumpsters" will discuss "Living Choices at the End of Life." Call toll-free: 877-232-2992. Guest identification number: 271004#

http://www.alzfdn.org/

The Alzheimer's Foundation has some great information and resources, as well as a support hotline that is available 24/7 for people who need immediate assistance and advice.

A Second Article Published!

I just found out that the good folks at Practical Alzheimer's published another article that I submitted to them about the differences between Lewy Body Dementia and Alzheimer's and why it is essential that one receives a diagnosis.  I've posted a link to the article here.  Practical Alzheimer's has lots of great tips, stories, and information about living with dementia - there's always something new on their site and I urge my readers to keep checking in with them!


http://practicalalzheimers.com/when-the-problem-isnt-alzheimers/

I hope you enjoy it!

Religious Matters.

I've just finished an amazing book and I can tell I'm still processing it, but I wanted to do a post on it because it strikes a place near and dear to my heart.  It is not, for once, a book about dementia and caregiving; it is a memoir written by a woman near to my own age who grew up in the Christian Science religion.  It is called, father, mother, god, which as those in the know will know, refers to a very common prayer in Christian Science; it is written by Lucia Greenhouse; and it is the closest narrative I have found to my own experience; it is almost eery, in fact.  I have mentioned a few times that my father was a Christian Scientist; I included a whole chapter on it in my first book because growing up in the religion has had the most lasting, negative effects on my life of any other experience I've ever had.

Christian Scientists believe in the purity of humans, that they are in the image of God and can therefore never be sick, or unhappy, or even die.  They refer to death as, 'passing on.'  They rely on prayer to heal themselves - believing that reciting hymns, Bible passages, and the writings of the religion's founder, Mary Baker Eddy, will heal them without the necessity of medical intervention.  You don't hear as much about the religion anymore, largely because it seems to be dying out(no pun intended), but back in the seventies, eighties, and nineties, there were several cases of parents being brought up on charges for allowing their children to die while they prayed for their recovery from whatever illness was affecting them.  It is a terrible religion, and I think it is part of the reason I'm so intent on end of life issues - accepting the realities of loss, grief, and bereavement and using the word,'death' as honestly and openly as possible.

As a child, I was shamed whenever I was ill or had any needs at all.  I was told to pray and recite passages when I felt sick - even when I was quite young and didn't really understand what was going on.  I was never certain whether one of my parents would truly help me if something seriously were to go seriously wrong, and it made me incapable of asking for help and medications from doctors.  In fact, it made it impossible for me to seek medical help when I actually needed it and I almost died when I was twenty-one.  I ended up with a chronic illness called Rheumatoid Arthritis, which has changed the course of my life and made it difficult to accept the task of caring for my father.  I had to go through a lot of therapy to be able to come to terms with my illness; the ways that the illness, and my parents, failed me; being able to seek appropriate medical attention for myself; and taking on my Dad's care.

It has not always been easy, but I feel like it makes me a better caregiver advocate, since I know what it is like to have to take over care of someone who didn't care for you as a child.  I also know how difficult it can be to give care when one suffers from a chronic illness, as many caregivers do.  These are all issues that real people must deal with and come to terms with - and it is all part of the caregiver experience.  I don't personally know anyone who has survived Christian Science, so reading this book gave my experiences a validity that really helps.  I will continue to process and do my work around these personal issues - and I wanted anyone out there who has experienced the same thing, or something similar, to know that they are not alone.