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.  ***!

Nice Genes.

The other day, I went over to visit Dad and sit with him.  As usual, after lunch, he was dozing in his recliner chair so I sat on the bed and studied his face.  I thought, as I had before, how young he looked in comparison to his age - how smooth and relatively unwrinkled his skin is and how his hair is still thick, if almost white.  The skin on his face is slack, however, I think because the facial muscles don't work as well anymore - it's what can give him a flat affect. I always think, though, that the fact that he started to lose his mind when he was young- along with worries, stress, and the awareness of aging - is what has contributed to his youthful appearance.

As I watched him sleep, idly going over his features, my eyes caught on his chin and I found myself really looking at it.  He has a big, lean, strong-looking face, and his chin had always contributed to that - grounding the rest of his features.  I had never really studied it that closely before but as I looked at it, I realized it reminded me of another chin - my own!  I have always thought my chin was a little odd - it has a cleft in it, like Kirk Douglas, or Michael Jackson after he decided he wanted to look like Kirk Douglas.  I read once that the cleft is a minor malformation of the chin bone, or something, and relatively rare - on the right face, like that of Kirk Douglas, it looks craggy and manly.  On my face it looks okay but it's definitely not cute or petite, and I always kind of wondered where it came from.  I realized I was looking at my chin on Dad's face. 

I look a lot like my Mother, and my Mother's mother.  From the shape of my face, to the shape of my eyes, even, I think, to the shape of my teeth.  When I look at pictures from my first wedding when I was twenty-four, I see my Grandmother staring out at me - we share the same soft jaw line and roundish eyes.  It's a little odd.  My face has changed a bit in the intervening twenty years so that it's not quite so obvious - now I think I look like myself, with touches of my Mom's family and elements that don't seem to really belong to anyone but me.

For the longest time, the only thing I thought I had inherited from my Father was his coloring - he and I both have blue-gray eyes and ash-blond hair.  I certainly didn't get his height since I'm 5'5 and he was over six feet in his prime!  Suffice it to say that I have never seen him looking out at me when I look at a picture of myself - but there it was, my chin!  As I looked at his chin, I realized that I felt happy that we shared it - that there was something definitive about me that came from him.  I felt a sense of kinship and connection that I sometimes lose since he and I don't really interact the way that fathers and daughters usually do.  It was a nice feeling, that genetic relationship and the experience of being part of a line that stretches back for generations of the same height, eye and hair color, and even shape of chin.

Staying Connected.

A few weeks ago, a relatively new website based in the UK called Practical Alzheimer's, contacted me and asked me to write an article for their site.  Their theme for the month of April was Out and About, ranging in subject from the practical - learning to take advantage of cabs - to the personal - how hard it can be to take the car keys from your loved one.

I chose to write about the importance of keeping one's loved one engaged and connected with the greater world, even though they have dementia, including places and activities to go and do so that both carer and caree feel they haven't disappeared.  I shared some examples of the things that Dad and I used to do together, and how I felt it improved Dad's outlook and health to still feel connected.

Staying connected, to each other and the world, is such an important thing for we caregivers to do, and I'm so glad I had the chance to connect up with another group doing the important work of spreading the word about dementia and caregiving.  I've gone International!

I encourage readers to visit the website, linked below - they have a lot of great information - including (modestly) my article!

http://practicalalzheimers.com/how-the-little-things-kept-dad-connected/

Support Group!

 Our second group is tomorrow in Seattle from 10am to 12pm, location and directions on the sidebar.  I look forward to seeing anyone who needs a little extra help and support!

 The Caregiver's Bill of Rights.

I have the right:

• To take care of myself. Caregiving is not an act of selfishness. It will give me the capability of taking better care of my loved one.
• To seek help from others even though my loved ones may object. Only I can recognize the limits of my endurance and strength.
• To maintain facets of my life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
• To get angry, be depressed, and express other difficult feelings occasionally.
• To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
• To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
• To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
• To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
• To expect and demand that as new strides are made in finding resources to aid physically- and mentally-impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

 This version was taken from www.caregivers.utah.gov, where it is attributed to Jo Horne.

Helpful Books...Or Not.

I've just finished two more books about dementia, caregiving, etc. and I thought I'd review them here for everybody.

The first one was, Elder Rage, by Jacqueline Marcell, who know speaks about dementia and caregiving issues.  This is a memoir with helpful tips and resources in the back.  It details the struggle she had to live with and care for her ailing mother, while at the same time dealing with her father, who is going through dementia-induced rages.  As the story progresses, we learn that he has always been somewhat abusive and we learn a little bit about her parents' relationship and how Jacqueline sees it.

It seemed like it would be an interesting read and she certainly has an eventful, challenging story to tell, however, the way she's written it was a little tough to read, in my opinion.  She has a background in television, I believe, and almost every sentence is punctuated by some reference to a tv show, or character, or well-known line in movie.  It gets a little overwhelming and distracting, at times, and it really detracted from the story she had to tell. She also tries to write in the vernacular, which is very hard to do.  She does list some helpful tips and resources through the book, that she learned while dealing with her father and mother's different needs and issues.

On the whole, it seemed a little voyeuristic and sensational.  I empathize with the terrible experiences she and her mom had to go through but I'm not sure reading this book would be that helpful to anyone looking for support or a similar experience.  I'm sure there are more cases than we know of, however, of caregivers trying to care for a family member with a history of abuse, and the little bits of information she gives on that might be helpful for someone in that situation.



The second book is, The Caregiver's Path to Compassionate Decision Making, by Viki Kind, MA, a bioethicist and counselor.  It is not a memoir, per se, although she uses examples from her experiences with her mother and father to illustrate her points, as well as a few stories from other caregivers. 

Viki's main goal is to help anyone caring for another to know how to make the best life and health care decisions possible, from the point of view of the person being cared for, i.e. what would that person decide if they had the capacity.  It was very straightforward and she gives the readers very clear steps to follow to make the best choices.  Making decisions that impact another person's life is a very difficult and soul-searching process, as caregivers know, and she gives a structure whereby it can be done without too much second-guessing.

A lot of people, when they enter the world of caregiving and making medical choices for another, have not had a lot of experience with the medical world.  I did only because I have a chronic illness, and I still found it a little challenging to navigate.  Viki helps the reader navigate this world somewhat, including the ways that most doctors and hospitals think about care and risk and sustaining life.  I enjoyed the book and feel like I got some good tips and information on how to make the impending choices for my Father.  I would actually recommend this as a good book for everyone to read, because, while you may not have ever have to experience caring for someone with dementia, many of us may have to make choices for a spouse of sibling. Buy it, read it, and pass it on to your spouse or sibling or friend!


I hope these reviews have been helpful - I'll keep on bringing them to you as I go through my bookshelf!

Pictures!

I talk about my Dad a lot so I thought I'd post a picture of my Mom!

(I guess it's the whole family, really. I'm the baby on the right.)