History of a Loved One-Scrapbooking and Pictures

 

Preserving life for future generations has always been a priority for humans. It’s a way of telling our stories so that the past is part of the future. We preserve and share our letters, our artwork, our photos and our words. Your loved one’s life is important to you and your family. Scrapbooking and photo albums are a great way to chronicle the important events of your loved one’s journey.

Some people prefer actual scrapbooks and photo albums. If you or a family member has a talent for these crafty options, it is a great way to spend time with your loved one. However, if you don’t have the talent, the time or the desire, check with your Delaware Hospice team. We might be able to find a talented volunteer whose specialty is scrapbooking or putting together beautiful keepsake photo albums. We encourage all of the families we care for to find a way to treasure and preserve their loved one’s memory. Visiting this scrapbooks or photo albums help the family begin to heal after the loss of a loved one as they reflect of all of the joy their loved one’s life encompassed.

Online or actual options

There are online options for scrapbooking and photo albums that are either free or low in cost. This is an easy way to preserve memories. You can also share these with other family members. Since some family members may live far away, it is particularly advantageous to use the online versions. People in your “tribe” can make their own contributions to online versions if they want. Both stills and video can be part of this wonderful expose of your loved one’s life. They have an eternal shelf life as long as you have them backed up to an external source.

Some online options are:

www.mixbook.com

www.smilebox.com

www.cropmom.com

www.shutterfly.com

www.heritagemakers.com

Actual scrapbooking and photo albums are wonderful because the allow people to enjoy interacting with their loved one in a way that developing a digital version does not allow. Wading through boxes of photos and sharing photos and stories can provide hours of bonding and laughter.

It is also helpful for patients who suffer from Alzheimer’s or dementia. Working on a chronicle of their lives helps keep memories active in their minds. Besides keeping memories fresh, it helps by providing simple tasks to perform. Since these diseases affect the mind’s ability to remember not just who we are, but how to do things, it gives a patient daily mechanical practice at performing simple tasks like writing, cutting and gluing.

There is a program called Memories to Treasure that has an informative website targeted specifically to caregivers of Alzheimer’s patients. Visit www.memoriestotreasure.com for more information about this program.

Our memories and our histories are precious. Making the time to keep them safe will give your loved one a sense of how important their life is to those they love and to the larger community of all humanity. It takes each tiny grain of sand to make a desert. It takes each drop of water to make an ocean.

Whether you do it yourself, solicit the help of a friend or family member or ask for help from a hospice volunteer, keep you loved one’s history safe and pass it on to others. Happy memory building!

 

 

 

 

 

 

 

 

 

Advertisements

The Healing Power of Storytelling

Who among us doesn’t enjoy a good story? Some tale of our personal lives or the lives of others. Storytelling can be particularly significant when the story helps someone else to grow and overcome something difficult they are going through in their life such as a life-limiting illness.

True storytelling is an art form. However, there is an emerging field called narrative communications and the professionals in that field are identifying the effects of telling stories on the health and happiness of patients. It is through the connected feeling a person has when hearing a story that helps patients get through the tough news of a diagnosis or helps them to make changes to some strongly ingrained behavior in order to improve their health; like smoking or a drastic change in diet.

So why does this work? Well, storytelling is very human experience. From the earliest time, it was a way our ancestors told about the important moments in their lives and the lives of those around them. It was necessary for survival. It was also the earliest form of learning. It helped people make sense of their lives and the world they shared.

When a patient is suffering from a life-limiting illness, it is important to stay connected to family and friends in order to ensure greater quality of life. Storytelling helps loved ones remember times they have shared; memories collected and cherished. It sometimes invites laughter, sometimes tears, but always love and a connectedness that makes the patient and the loved ones feel close and united. It helps them to cope with whatever lies ahead knowing that they are sharing the experience.

So how does storytelling work? Humans all feel the need for a sense of identity, their place in the order of things. It’s instinctual. Tackling traumatic physical and emotional issues means an extreme shift in our own personal stories. Suddenly the story of our lives is being rewritten, usually without our permission. Storytelling helps a person assimilate or change direction. When it is an abrupt change or when the loss is great, it can cause a person to feel lost and alone. Storytelling helps them to reconnect, to find themselves again and to find a direction back onto the road of life.

As a family caregiver, your role in the storytelling process can be as the instrument of promotion.  You can be both storyteller and active listener.  Telling the story is vital, but so is finding an attentive, empathetic listener. Have you ever told someone a story and felt like your listener would rather be somewhere else? It made you feel unappreciated didn’t it? Being an attentive listener means tuning out all the other distractions and focusing on what is important at that moment – giving the storyteller your undivided attention. It is only then that storytelling produces its full benefit to both the teller and the listener.

You might even want to record these stories to share with others; perhaps with friends and family who live far away. Maybe you could preserve them for future generations who might benefit from the positive ripples caused by the impact of these stories. Today’s access to a multitude of multimedia tools makes it easier than ever.

 

 

 

Helpful Reading for Caregivers

“Knowledge is power? No. Knowledge on its own is nothing, but the application of useful knowledge, now that is powerful.”

Rob Liano  – Integrity First Consulting Group, Inc.

As a caregiver, it is often a struggle to understand exactly what is the best course of action at any given time. Decisions sometimes have to be made quickly and often stress is created from a lack of knowledge – knowledge about a particular disease, knowledge about proper care methods, knowledge about physical and mental support, knowledge about legal and financial issues.

Caregivers enter into this selfless position with all the best intentions, but sometimes feel guilty if they fall short of their own expectations. Useful, targeted knowledge can help avoid those guilty feelings.

You gain knowledge every time you read our blog. That’s a quick resource. You gain knowledge each time you ask questions, whether it is to a Hospice of Montgomery team member, a doctor, a counselor or a clergy person.

This particular blog is dedicated to pulling together, from many sources, a list of suggested readings that might also be helpful in your pursuit for knowledge that can help you be the best possible caregiver. Along with reading materials, there are also websites that may help broaden your knowledge in different areas. Some of them offer webinars and video materials that are focused on caregiving.

This blog is posted as a resource that you can visit over and over again. Don’t let it overwhelm you with its vastness. No one says you have to read everything on this list in order to be a wonderful help to your loved one. Take a look. Find topics that you feel will enrich your experience or lower your stress and help you with the responsibility you have taken on.

Helpful Readings

Caregiving and Loss: Family Needs, Professional Responses. Published by Hospice Foundation of America, 2001

With approximately 25 million family caregivers in this country, one out of four households are providing care for a loved one. It is important for healthcare professionals to understand the unique needs of family caregivers and offer compassionate support. Featuring writings from 13 nationally recognized experts in the field of caregiving and loss, this book was developed in conjunction with HFA’s award-winning Living With Grief series.

The fearless caregiver:  How to get the best care for your loved one and still have a life of your own Sterling, VA, Capitol Books Inc.

 “Experts” on caregiving address topics such as legal and financial matters, care tips, dealing with medical personal, specialized caregiving, care of the caregiver, holidays, caregiving outside the home, and “end of life” considerations.

Therapeutic caregiving: A practical guide for caregivers of persons with Alzheimer’s and other dementia causing diseases.  Bridges, B. J. (1995). Mill Creek, Washington, BJB Publishing.

 This book is a down-to-earth practical guide for caregivers of persons with dementing illness.   A chapter on “The Therapeutic Role of the Caregiver” identifies feelings and role changes of the caregiver and where to get support.  Practical suggestions for “ caregiving” are provided throughout the book.

Living with grief:  Who we are. How we grieve.  Doka, K, J. & Davidson, J.D. (Eds.) 1998). Philadelphia: Brunner/Mazel.

The Hospice Foundation of America provides many services to people throughout the U.S.A.   This book includes a series of articles related to loss and grief with emphasis upon spirituality, ethnicity and culture, and helping people “make sense out of loss.”

Goodwill: Neighbors helping neighbors program really does involve “good will” (2002).  Utah Spirit, January, pgs. 24-25.

This article describes a community-based program designed to involve neighbors in helping meet the needs of low-income seniors with limited social supports.  Volunteers are instrumental in providing services to seniors who need a “helping hand.”

When aging parents can’t live alone: A practical family guide.  Rubenson, E.F. (2000).  Lincolnwood, Illinois, Lowell House.

Information in this book will help families decide if placement in an alternative living situation is the best choice for an elder family member.  The author also addresses how to help families make a thoughtful and informed decision about which alternative living situation would best meet their elder’s needs.  The author provides step-by-step guides in examining concerns that relate to physical, emotional and mental health, personal finances, insurance coverage and benefits, safety, costs, accessibility and available services.

As parents age: A psychological and practical guide.   Ilardo, J.A. (1998).   Acton, Massachusetts, VanderWyk & Burnham.

Many decisions are faced by people as they age – for the elders themselves, their children and other supportive family members.  Issues to be addressed and available resources are identified.  Helpful checklists and worksheets are provided.  Topics addressed include:  (1) the impact on the family; (2) what to do if your aging parent has a mental problem; (3) helping your parent stay at home for as long as possible; (4) when a parent must leave home, and others.

How to Care for Aging ParentsBy Virginia Morris, Workman Publishing Group

This book is a comprehensive, helpful resource providing information regarding financial, legal, medical, psychological and day-to-day resources important to people as they age and for the person who will direct their care.

A Caregiver’s Challenge: Living, Loving, and Letting Go
By Maryann Schacht, MSW

“Many books address the needs of patients; few speak to caregivers. A Caregiver’s Challenge combines personal experience and professional expertise to provide the knowledge and support that caregivers need.

——————————-

There are many informational brochures created and distributed by the Hospice Foundation of America. Some of them can be conveniently downloaded. Here are a few titles:

 

Supporting your Friend Through Illness and Loss 


 

This brochure recognizes that the challenges brought about by terminal illness and loss affect not only the person experiencing it, but also family members, co-workers and all those touched by the situation. This brochure offers stories and advice for those who want to help but don’t know what to say or do.

 

Caring for Someone Who Is Dying

 

This brochure offers insight into the dying process. Although the diseases, relationships and circumstances are different, a terminal illness involves similar issues and difficulties. This brochure offers some guidelines, provides a sense of understanding, and emphasizes the need for caregivers to take care of themselves.

 

A Caregiver’s Guide to the Dying Process

 

Many people who are caring for a terminally ill person have never done it before. A Caregiver’s Guide can serve as a sensitive, helpful resource for families who are being served by hospice. A Caregiver’s Guide to the Dying Process prepares caregivers by discussing both the physical symptoms of dying and the psychological issues that accompany the dying process. It may also be used by hospices and other end-of-life organizations as a helpful training aid for staff and volunteers.  

 

Medicare Hospice Benefit 

Trying to understand the nuances of rules and regulations can be overwhelming. This is the official government publication for Medicare hospice benefits. 

——————————-

Government publications on political issues regarding aging and caregiving:

Who will provide care?  Emerging issues for state policymakers (2001).  Proceedings of the Family Caregiver Alliance, National Center on Caregiving, 25th Anniversary Conference Proceedings.  San Francisco, CA, October 26-27.

Among the issues addressed at this conference were the following:  (1) Long-term Care; (2) Respite Care; (3) Family Caregivers and the Workplace; (4) Paying Families to Provide Care; and (5) Implications for Family Caregivers.

Aging in the 21st Century:  Consensus report (2002).  Stanford, California:  The Institute on Women & Gender.

 

“Experts” on aging identify critical issues faced by elders and their families in the 21st Century.  Topics include:  (1) Living (and Dying) Longer; (2) Caregiving; (3) Inequities Mount; (4) How Social Institutions Fail; and others.

——————————-

There are also a variety of magazines and websites all geared to help caregivers learn more about their roles.

Magazine:

Today’s Caregiver

Caring Today

Family Caregiver

The Hospice Journal

Websites:

www.hospicefoundationofamerica.org

http://www.caregiver.com

http://www.Aarphealthcare.com

http://www.mayoclinic.com

www.helpguide.org/elder/caring_for_caregivers.htm

 

 

Home Safety

Most people are familiar with the concept of childproofing a home when a new baby arrives. But what about bringing your aging parents in to live with you when independent living is no longer an option? There are several steps you can take to “elder-proof” your home and ensure a safe and comfortable environment for your parents in their later years. And when a parent, who is facing an advanced illness is living with you, home safety takes on a new level of importance.

Preventing Falls

A primary safety concern with the elderly is the prevention of falls. Falls are the leading cause of injury or even death among the elderly. Fortunately there are many ways to safeguard your home against potential falls.

  •  Remove all tripping hazards such as books, shoes, toys, electrical cords, etc., from the floors.
  •  Remove all throw rugs.
  • Remove furniture from high-traffic areas if possible, and pad any sharp edges with plastic bumpers.
  • Remove the casters to stabilize movable furniture items.
  • Remove unstable tables and stools to avoid tipping, and put fragile or breakable items away.
  • If your parent uses a cane, you may also wish to attach a loose wrist loop to the handle. This will prevent your parent from having to bend down to retrieve a dropped cane.
  • Polish linoleum and wood flooring using only non-slip floor wax.
  • Textured strips can also be placed on linoleum to provide better grip, and all spills should be cleaned up immediately.
  • Add grab bars or handrails along staircases and hallways to help prevent falls, and grab bars next to closet doors to support your parent while dressing.
  • Place colored, non-slip strips along areas where floor levels change, such as stairs and doorway thresholds, to help clearly identify where your parent will need to step up or down and prevent stumbles.
  • Make sure the bed and chairs are easy to get in and out of, and that chairs have solid and supportive arms and backs.

Lighting the Way

Lighting is another important safety consideration in the prevention of falls. It is easier for elderly eyes to adjust if there are consistent lighting levels throughout the house, using low-glare bulbs and shades. Night lights are helpful to guide your parent along stairways as well as from the bedroom to the bathroom and kitchen. Light switches placed at both the top and bottom of stairs will ensure good visibility. Install a light switch that can be reached from the bed to prevent your parent from fumbling in the dark if they awaken in the middle of the night. Illuminated light switches are much easier to locate in the dark, or you may choose a clap-on, clap-off lighting system. Flashlights should be easily accessible in all rooms of the home, especially the bedroom.

Bathroom Safety

The bathroom can be a particularly treacherous room for the elderly, but is easily adapted for safety. Consider taking these safety measures:

  • Adding an elevated toilet seat with handgrips on both sides, and toilet tissue within easy reach can ease the strain on an aging parent’s back and legs, thus reducing the risk of falling.
  • Equip the tub with a bath chair, or grab bars or a handrail placed at both sitting and standing levels.
  • Use secure non-slip mats in the tub or shower, along with a wall-mounted liquid soap dispenser to keep your parent from having to bend down to retrieve a dropped bar of soap.
  •  Consider changing to hand-held shower devices. They are easier to use when mobility is limited.
  • If your parent does happen to slip in the tub, a shower curtain securely mounted into the wall will offer more support than a pressure-hung curtain that will pull away easily.

Temperature Concerns 

As we age, our sensitivity to hot and cold temperatures may wane. Anti-scald devices can be installed which will automatically shut off the water if it gets too hot. Faucets with a single control for hot and cold water may be easier to adjust for temperature. You should also ensure your parent has sufficient robes, blankets and warm clothing available to maintain their body temperature without the use of dangerous space heaters.

Staying Safe Outdoors

Outside the home, make sure all walkways, paths, steps, decks, porches and entranceways have good lighting, solid traction and handrails for support. Keeping sand or rock salt by the door is a good idea for potentially icy weather. If your parent is wheelchair-bound, ramps can be installed for easier access. Exterior motion sensing floodlights will light your parent’s way and avoid the necessity of fumbling with keys in the dark.

When it comes to safety in the home, prevention really is the best medicine. Elder-proofing your home before your aging parent moves in will ease the transition, helping them maintain a sense of independence and affording you the peace of mind that comes with knowing you’ve provided every safeguard for their wellbeing.

Care for You the Caregivers

 

As with any difficult period you go through in life, caring for a loved one is a job you might gladly accept, but the impact of caregiving on you, your physical and mental health and your relationship with your family, can be severe. The National Alliance of Caregivers has done extensive research on the subject:

“Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves.

63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities.

20% of employed female caregivers over 50 years old report symptoms of depression compared to 8% of their non-caregiving peers.”

By making you aware of these statistics, we hope you will take a few moments to reflect on just how important taking care of yourself is to the process of providing outstanding support to your loved one who needs you now.

Becoming a caregiver may or may not have been a conscious decision. You may be gladly caring for your spouse out of love and dedication. You feel it is your choice and duty to them and you would not want to be anywhere else during this time.

On the other hand, maybe you are the only child living close to your parent who is going through an end of life journey. You may be feeling the weight of the responsibility that has become yours. Either way, it is an admirable path you are on, but it is often a lonely one, so you should make a conscious effort to take care of yourself both physically and emotionally.

The real challenge is to know yourself and your limitations in order to take care of yourself. This precious time you have to spend with your loved one will be richer if you are healthy and whole.

Here are some ideas for doing just that. We hope some of them will spark your interest and provide you with avenues for caring for yourself in addition to your loved one.

First and foremost, give yourself and your loved one the best outside help and support you can find. You may feel like you have to do this all alone. That is a common misconception. You are most certainly not alone. Hospices, like Hospice of Santa Cruz County can provide a wide range of options for you and your loved one to choose from. A hospice coordinator will help develop a plan with you that is just right for your situation.

Educate your self about your loved one’s disease. The more you know, the less fearful it will seem and you will be better equipped to help your loved one if you understand what’s going on. Check out information from the library, online information sources and ask the doctor or your hospice team any questions about things you don’t understand.

Keep a Caregiver’s Notebook. Use it for record keeping or writing down those questions that come up so you don’t forget to ask them later. The notebook can include a calendar to keep track of your own appointments so you don’t miss medical appointments, yoga classes, group support meeting or therapy sessions. You can record when medications need to be taken by the family member you are caring for as well as your own regular medications if you are taking any.

On that calendar, make sure you schedule caregiver breaks, which can be provided by one of your hospice team members or family and friends. If you strive to follow your Caregiver’s calendar, you will keep yourself healthier and be the best caregiver you can be.

The little things CAN make a difference; things like eating right, exercising, expressing yourself by writing or through art. Watch movies you like with the loved one you are caring and invite other family members or friends so you have others around you. If you love books, read them aloud or get books on CD. The loved one you are caring for will enjoy them and so will you.

Attend a support group. Emotional health is just as important as physical health. There are many organizations in your community willing to assist with emotional support. Your hospice team member can help you find them. If you don’t feel comfortable in a group setting, try one-on-one counseling through your church or a therapist.

Remember to follow the Cardinal Rule of Caregiving: Take care of yourself so you CAN take care of your loved one.