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.

And You Thought There Were No More Books...

I never cease to be amazed just how many books there are about people's experiences with caregiving, dementia, and aging parents.  Like any other genre, some are well-written, some not, but I think hearing someone's experiences is always valuable - and sometimes entertaining!  Here are two that I finished not long ago, both are more memoir than informational and both were really well-written.

Inside the Dementia Epidemic, by Martha Stettinius.

I really like Martha's story and the way in which she told it.  She delivers a mostly chronological narrative from the moment she and her mom realized something was seriously wrong, through the various care and housing choices she made for her mother, to the facility where she lives now.  I think one of the things I really enjoyed about it was how obviously conflicted Stettinius was about the relationship she and her mother shared.  We need to hear more about the dysfunctional relationships and how they affect caregiving, and Stettinius doesn't disappoint.  We discover that her mother was an alcoholic and suffered from depression, and how that affected Stettinius as a child and how it makes her feel about caregiving now.  She brings her mother into her own home for several months, and is really honest about how the stresses and tensions of this arrangement affected her and her young family.  We get a really good look at the experiences of a member of the "Sandwich Generation." 

The book is also unique in that Stettinius moved her mother several times, to, and from, several different types of facilities.  Her experiences with all of them and their staff and procedures was very interesting and informative: so many memoirs detail caring at home, so I appreciated seeing one where more of the care was in a facility.  All in all, the book was very well written, entertaining, and evocative; well worth the time spent reading it.  ***


Keeper, by Andrea Gillies.

I admit I found this book fascinating, coming as it does from a British author and detailing some of the ways that caregiving, and governmental caring bureaucracy, differs from the US.  The author, her husband, and three adolescent children buy a large, old house in the North of England in order that they can provide housing and care for her husband's parents. His mother has progressive dementia, and his father has multiple health problems that keep him in a wheelchair, depressed and angry.  The couple have been married for over forty years and are dependent on each other emotionally, yet he can't seem to accept her dementia and insists that she continue to act and think in the ways she always has, resenting her for needing so much care, but being unable to sleep when she is spending time at respite care.  Seeing his denial of the situation, and, indeed, of his own health problems, coupled with his love of and dependence on her was fascinating. 

Gillies ends up providing most of the care for both her parents-in-law, and she goes into eloquent detail about the increasingly difficult and heart-breaking symptoms and behaviors exhibited by her mother-in-law and her increasing inability to deal with them. Gillies' description of the house and the countryside and the comfort she attempts to elicit from living where they do are eloquent and beautiful. The family attempts to go through the British health and care system to obtain in-home aid as well as respite care, and are repeatedly let down and failed by the system.  It seems bureaucracy is the same whatever country you're in! Ultimately, their attempt to provide care at home, as a family, is a failure and the couple must be placed in a facility. I usually read these types of book as education and research, but I found myself not wanting to put this one down. Gillies writes beautifully and she really draws you into her experience and that of her family.  You feel empathy for the entire family and an appreciation that sometimes the best laid plans truly do go awry. ****


I continue to hope that these reviews help my readers find the information and support they need, as well as an entertaining read that might reassure them that they are not alone in their experiences.

Scars.

I have mentioned before that my father and I did not really have a physically affectionate relationship.  I have also mentioned that it is something I have always felt my dad wanted, and something I did try to foster as best I could – while fighting through my own reticence with my dad.  From childhood, I know I felt keenly the alienation and lack of affection between us – wishing often that it could be different.  When I became his caregiver and moved in with him, we became more demonstrative verbally and physically with each other in a way I found very healing.  Dad’s illness allowed him in some way to conquer his reserve and physical awkwardness and let his natural affection shine through.  I enjoyed hearing that he loved me, telling him I loved him, and exchanging hugs and pats on the hand.

As he’s descended further into his illness and I don’t personally care for him any more, I’ve noticed that while I’m still verbally affectionate with him, I don’t touch him very much, except to hold his arm, or stroke it a little so he can feel my touch.  Whether that’s a function of our past distance, a disinclination to wake him up or bother him, or simply that I haven’t needed to because I don’t dress him or change him, is unclear to me.  It’s just something I’ve realized lately.  I’ve been reading so many memoirs, however, and caregiving and dementia manuals, and in many of them, caregivers have been able to connect with their care-takers in a comforting way by massaging their hands and feet with lotion.  Having been a massage therapist a few years ago, I figured that, at least, was one thing I knew I could do well, so I thought I’d give it a try next time I visited.

I went to see him this week, and came in to his room as he was sleeping, so I sat on the bed.  After a bit, he woke up and looked around stiffly, so I got up and perched on the wide arm of his recliner so that I could be close and look in his face. I smiled at him and said hello and he smiled back, and I began to gently stroke his arm.  I then began to carefully stroke the hand that was closest to me, which I noticed was slightly curled and stiff from the Parkinson’s.  I didn’t want to hurt him, so I just very gently stroked from his wrist along the base of his thumb, rubbing the web between thumb and forefinger, and then curling my fingers into his palm – over and over – switching back and forth between hands. 

My father was a man who used his hands for everything, and they served him well.  They were big and strong enough to loosen a stubborn bolt or hammer a nail, and agile enough to lay fiberglass along the body of an airplane.  They always hung slightly out of the too-short cuffs of his sleeves – he was so tall that he had trouble finding shirts that were long enough – and the big bone of his wrist was always visible.  He often had bits of duct or masking tape on his hands, covering the many cuts and scrapes made by tools or machinery; his only acknowledgement of any injury.  

 I was surprised at how cool his hands were – almost too cold, as if the Parkinson’s was stealing the circulation away.  His knuckles were big and bony, although they’ve been like that for a long time, and I wondered if the tension and enlarged knuckles might be causing him pain.  I also noticed how many pale white scar tracings he had on his hands, remnants of struggles with recalcitrant engine parts, and I was surprised I’d never really seen them before.  As I stroked his hands, I watched his eyes become heavy and as he nodded off I realized I was relaxing him with my rhythmic smoothing of possibly aching hands. 

 I continued to perch there uncomfortably on the arm of that chair, massaging Dad’s hands and reluctant to move because I realized how lovely it felt to be close again – and I realized how much I had missed it.  I knew that Dad and I had been able to heal many of the wounds and scars of my childhood during the time I gave Dad care but what I didn’t realize was that there might be more to heal. And that the best way to heal my hurts – and my scars – might be to gently massage the ones on my Dad’s hands.