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.

The Benefits of Hospice Care.

This subject has been coming up a lot lately in my counseling and the forums I'm a part of, so I thought I'd address it here. It's about hospice care.

 Unfortunately, people still don't know much about hospice care and the benefits it can provide a family dealing with a terminal illness.  Some still think it is connected in some way to euthanasia or 'mercy killing', which couldn't be further from the truth, or that families and doctors are giving up on the patient.  In fact, the truth is that people more often come too late to hospice, rather than too early.  Unfortunately, most people believe hospice is for the last few days of life, which doesn't allow the hospice team to really stabilize a patient.  Hospice care is designed to support the physical, emotional, and spiritual needs of both a patient and their family, promoting self-determination and awareness of what course an illness will take and what options are available.  It allows a patient to decide how they want to spend the end of their life and emphasizes dying at home with the involvement of friends and family.


Hospice care is not designed for those people who are still undertaking aggressive treatment or care for their illness, nor is it for people who can expect to live with their chronic illness for years.  Traditionally, hospice is recommended for those who have six months or less to live, and have decided not to pursue any further treatment options.  Hospice care is designed around palliative care, which focuses on making a patient as comfortable as possible through pain management, help with constipation and nausea, assistance with toileting and physical adjustment to prevent sores.  It is also designed around a family member or friend taking the main caregiver role, with hospice nurses and aides as support.  In general, families accepted to hospice agree to sign a Do Not Recussitate Order, refusing drastic life support measure such as CPR and artificial breathing. Although hospice is aimed at care in the home, many hospice programs are beginning to bring the hospice model and spirit of hospice care into nursing and other facilities.  Many cities also have residential hospice facilities.


The benefit of hospice care is that it can provide a patient and family essential care and support that they may otherwise not be able afford or receive.  The patient's primary physician must make the recommendation but anyone can initiate the discussion by calling the hospice organizations in their area or discussing it with the physicians.  When a patient is accepted into hospice care, an entire team of professionals begins to manage their care. The primary physician oversees the care; a social worker is available for help with benefits, dealing with creditors, and making legal and funeral arrangements; trained nurses and home health aides manage medications, toileting, and bathing; a chaplain is available for spiritual care; and volunteers are available for light chores, respite for family members, and companioning the patient.  The other benefit is that most hospice care is covered by Medicare and Medicaid.


Hospice care is truly all about supporting and caring for the patient and their family. It focuses on helping a patient die with dignity and in comfort, spending any remaining time as they desire, possibly by improving family relationships and dealing with any remaining wishes and regrets.  Don't hesitate to initiate the discussion about hospice care with your loved ones. It's all about the best end of life possible.

Books, Books, Yet Again.

I have two new books to review, and I think they're good ones.  Because I know so many of you don't have much time to read and gather information, I will gladly throw myself on the grenade and read for you(and not just because I love to read)!

Living With Lewy's: Empowering Today's Caregiver.  Amy J. Throop and Gerald S. Throop.

We all know that I love the Whitworth's LBD guide for it's plain-speaking and information, but I think this one comes in a close second.  It is not really a memoir, although it has some personal narrative and descriptions in it to illustrate what they are talking about.  Living With Lewy's is incredibly comprehensive, and very well-organized; if you don't have much time to read the whole book but need information quickly, you can turn to the section you need easily.  The information is straightforward and can be easily distilled to doctors, family members, friends, etc.  It is encapsulated and easy to understand, with clear explanations and resources.  It's a great resource to keep on hand for quick referrals or to give to people newly experiencing the joys of LBD and caregiving.  ****!


Caring For Mother.  Virginia Stem Owens.

This is pretty much strictly a memoir, without any of the references and resources that many caregiving/dementia books have.  That said, I thought it was a lovely book, well-written and thought out, and it really conveys how disruptive to one's own, established, life, it can be to have to take on caregiving duties.  The author is in her sixties, around the time one would expect one's parents to start failing, yet she is still somewhat in denial of her parent's age and condition - as we all can be - and it takes her a while to accept what is happening, both to her parents, and to herself.  It is obvious that Owens is a religious person, yet she manages not to overly-impose her belief systems on the book, infusing it instead with the more organic spirituality of family love and awareness and acceptance of loss and mortality. It is a gently-paced memoir, and she really describes accurately the experience of living with institutional care and the difficult, almost impossible, choices we are often faced with when it comes to getting care for our loved one.  ***!