The Caregiver Cottage

A New Caregiving Journey

My brother Tom has had Non-Hodgkins Lymphoma for the past 4 years. He did failrly well with different treatments, then recently found out that his bone marrow was getting tired and not producing anymore. He had a bone marrow biopsy and was diagnosed with full blown Leukemia. I went to Ann Arbor, Michigan with him for a consultation on his disease and options. We were told that his only option is a bone marrow transplant, and that it needs to be done soon.

The implications and planning for this proceedure were very overwhelming. First he needs to find a bone marrow donor. He was told that the actual bone marrow transplant will take 100 days in Ann Arbor. The first 30 in the hospital, then the next 3 months in an apartment near the hospital. He will also need 24/7 care while in the apartment there. Wow, immediately I had blood work to find out if I could be a donor, as did several of our brothers and my nephews. We are still waiting on that. I also decided that since I am a nurse, and can free up some time, that I will take care of him in his apartment for the first month.

Wow, because I work in the field of coaching and guiding family caegivers, I immediately started to recognize some needs I will have. The first being that I will need some relief and respite from 24 hour care. So the plan is to get someone to relieve me for 1 or 2 week-ends while I am there. There will be lots of other things that I will need to do for both Tom and myself. As I continue on this caregiving journey, I will post my thoughts, experiences and self-care decisions. here.

I also want to share some of Toms writings and poetry. The first one follows;

"Why Me????"
Why Not Me??
Of Course, Me
Thank You for the Challenge

Better myself than a 5 year old filled with wonderment. I have lived, I am much better equipped to handle the psychology of recovery. My parents will not have to wonder if their child will live a full life, or if they will be able to enjoy watching that child grow into adulthood.

I have 60+ years of faith, prayer, forgiveness, and love!!

Ihave lived, I have danced,
I have loved, I have lost,
I have cried, I have smiled,
I know disappointment and failure,
I know pride and contentment.
I WILL SURVIVE!!!!!
I KNOW HOW TO DANCE!!!!!

My faith and mind will allow and persuade my body to heal. Asking "Why Me" smacks of self-pity. Pity parties are ugly, they don't look good on me, they don't match my socks!!

I have raised children and know the wonder of grandchildren.
I know success.
I know friendship.
I know how to smile in the face of adversity.
I will attack the pain.
I will welcome the questions in my mind.
I will make lemonade.
I will be thankful that I have been chosen.
I am not afraid, I may not win but my adversary will know they have been in a battle if I don't.

If a full recovery, my life continues dancing singing laughing smiling. If no recovery my new life begins dancing singing laughing smiling. I cannot lose!!

Thank You all for your prayers, friendship, and wonderful words of encouragement. I am a rich man.

Posted by Carol McGowan
Caregiver Coach
The Caregiver Cottage

Attention Baby Boomers

Baby Boomers

You’re not baby’s anymore, you’re becoming elders who will also be living longer than any generation before you. So, not only were you the largest population group at birth, but you’re also going to be the largest population group as elders. Making you;

Elder Boomers

And, as you enter the “Elder Class”, many of you will be caring for your even more elderly parents, who are now the fastest growing elder population. Making you;

Caregiving Boomers

As these aging groups “Boom”, there will be less resources and alternative living arrangements available to meet the needs. Thus, the “Family Caregiving Boom” will affect many families who are not prepared or who do not know how to navigate the caregiving path. You will be saying;

Show Me The Path

At the caregiver Cottage, we can navigate the caregiving journey with you and help you choose the best path for you and your family. You can contact;

The Caregiver Cottage LLC

Caregiver Coaches
Cindy Streekstra RN and Carol McGowan RN
616-643-8017
coach@guidingfamilycaregiving.com

Family Caregiving – “Able, Willing and Ready”

You've probably used the phrase "Ready, Willing and Able" , when you were committed to pursuing a task or challenge. When it comes to family caregiving, you may not feel ready, willing or able to take on this overwhelming challenge. Most people are not trained or prepared to be caregivers. When the role of family caregiver is assumed, it is either;

• Thrust upon them in a crisis, usually a medical emergency; such as a stroke or a fall.
• Or it happens gradually. Over time they take on tasks and responsibilities until they realize that they are spending allot of their time in caregiving.

There are many areas to consider when providing family caregiving, and the phrase may be better stated as “Able, Willing and Ready”?

The family and extended family including friends and neighbors must first be able to take on the responsibility of caregiving. Ability covers a wide range of issues, including;

·        Physical Ability;

o       Are they physically capable of taking care of someone else, or do they themselves have physical or medical limitations?

o       Do they live within commuting distance to the person needing care?

o       Do they have the time to dedicate to caregiving?

o       Do they have training in caregiving, or are they able to get training?

·        Mental/Emotional Ability;

o       Caregiving can be emotionally stressful, especially for those providing care for a long time.

o       Has there been any history of depression?

·        Financial Ability ;

o       Are there funds provided to compensate a family caregiver?

o       Is the caregiver able to devote full time to caregiving, or do they have full time career responsibilities? Are they able to take a leave of absence?

o       The cost of products and services associated with providing care add up fast. For many caregivers the expenses can be significant.

The next issue that family member should consider is that of willingness. Not all family members are willing to take on this role, or responsibility. There are an unlimited number of reasons why someone may not be willing;

• They are uncomfortable with providing the physical care of someone.
• They can’t stand to see their loved one’s condition deteriorate
• They don’t feel they are a part of the family unit.
• There are conflicts in values.
• They feel they don’t have a choice
• Caregiving takes time and they are already busy with other responsibilities.
• They may have been planning a retirement, or have some other goals for their life.

There may not be a full understanding of what the family caregiving role covers. They may have felt that the “hands-on” caregiving role was the only option, and once they realize there are other things they can be responsible for, even at a distance, they may be willing to become a part of the family caregiving structure.

Being ready for family caregiving. Stress comes not from what is done, but from not knowing what to do or how to do it. Being ready means knowing what may be needed, who can do it, and how to access it.

• Usually the role of primary caregiver falls to one family member.
  • Talk about who might assume that role.
  • Can the family provide compensation for the primary caregiver?
  • Is there a need for a caregiving class, or training in a specific area?

• Everyone could take on a secondary caregiver role.
  • Provide support and relief to the primary caregiver
  • Help with legal and financial issues
  • Help with other issues and needs.

• Research what equipment or services may be needed
  • Do you need to get equipment in the home, or do you need to make modifications to the home?
  • Should you bring in nursing assistance, or respite services?
  • Many services have waiting periods or waiting lists. Find out how to access the services you may needs.

• Discuss  feelings about alternative living arrangements
  • Will there be a need for assisted living or nursing home placement?
  • What facilities are available in your area?
  • Visit facilities, so you are prepared if the need arises.

These are just a few of the considerations that need to be addressed when providing family caregiving. Will your family be Able, Willing, and Ready?

Caregiving - Changing Traditions as Parents Age

Can it really be Memorial Day week-end? Seems much too early!! In Michigan, Memorial Day is the beginning of our vacation season. Families gather together for picnics, cottages are opened and we celebrate family traditions. However, as we face aging parents, some traditions will be changing. This is happening in my family. We have a family cabin in a national forest on a small, quiet lake. It is a place of rest and relaxation where our family has gathered for 45 years. Our tradition has been to open the cabin on Memorial Day week-end. My brother and sister and parents and our children rake leaves, wash windows and share many stories and laughter. We all treasure this time together.

This year our tradition is changing. My elderly parents at age 90 and 85 are no longer able to navigate the hilly and uneven terrain. My husband and I now have our own cottage and my sister has moved to a home on water. My brother and his family will be going alone to open the cabin. Our family has spent several hours talking about these changes. We grieve that this tradition has come to a close. We grieve the loss of physical strength that my parents are experiencing. We want to hang on to this tradition, but know we can't.

Are you facing any changes in your family as your parents age? Are you having to do things differently? Are your family traditions taking new paths? Are you wanting to keep things the same because the way you have done things is meaningful to you?

I invite you to
- Step back, away from the emotion of these changes. View the situation as objectively as you can. Recognize in your head, why things need to be different.

- Allow yourself to feel the emotions of the loss and change. Let yourself grieve what was.

- Talk with individual members of your family and as a group about these changes. Talk about the memories and the good times and the difficult times. Acknowledge that things will be changing.

- Begin to let go of what was. Letting go makes room for the new.

- Begin making new traditions. Create meaningful times together in a new way. You will come to treasure these also.

My husband and I are moving into our cottage this week-end. I will miss going to the family cabin. I will create new traditions where our cottage can become a family gathering place. I can visualize my mom and dad sitting on the deck looking over the water. I can hear our family talk and laugh as we share new stories and make new memories.

Blessings to all of you and your families on this Memorial Day week-end.

Cindy Streekstra
The Caregiver Cottage

Holiday Gatherings Provide An Opportunity to "See" How Our Elderly Loved Ones Are "Really" Doing

As we gather with friends and family during this Holiday Season, we share memories and catch up on what’s been happening in everyone’s lives. During this time we may also be noticing some changes in our aging loved ones. At first we see our loved ones as we always have, denying any limitations, conditions or needs. We want our loved ones to stay as they are.  We often see them as timeless. 

Adult children are emotionally not ready or wanting to see the changes in their elderly parents and begin to question;

• What might this mean for me and my family? 
• What kind of time and resources is this going to take?
• How can I handle more, I already have more than I can handle.

 

Many families face a sense of denial as loved ones age. Admitting that loved ones conditions are changing brings up the vulnerability of our loved ones. This inevitably begins the emotional work of projecting the death of our loved ones.

However, a holiday gathering provides us the opportunity to “see” our parents and aging loved ones as they really are today, and sharing our observations with them, our siblings, other family members and friends.

The following is a list of observations and actions for your use during your holiday gatherings;

1.      Begin “seeing” your loved ones as they really are. Step back and be objective about what you are seeing.  Observe the following for changes:

·        Personal hygiene and grooming

·        Personality changes

·        Condition of residence and yard

·        Cleanliness of the inside of the residence

·        Daily routines

·        Ability to handle finances

·        Activity level and initiation of hobbies, interests

·        Ability to walk and/or move about safely

·        Eating, cooking, food in the refrigerator – type, amount and freshness

2.      Then listen carefully to what is being said and what is not being said.

·        Spouses can easily cover up the limitations of their partners. These limitations are often not evident until something happens to the spouse with the most abilities.

·        Many aging loved ones won’t admit they are having problems or difficulties.  This can be reflective of the depression era values and core beliefs that “we don’t tell” and “we can do it ourselves”. They don’t want to bother their family members and be a burden on others

3.      Share your observations. Different family members may observe different changes.  Depending on what role each family member plays with the aging loved ones, different limitations, changing conditions and care needs may be seen.   

4.      Initiate discussions with your aging loved ones and other family members about these changes and care needs.  If these changes put your loved ones at risk, immediate action needs to be taken to resolve an unsafe situation.

Questions

To help you identify where your family is in this process, we invite you to write down your responses to these questions.

1.  What, if any, mental, physical and emotional changes have you observed in

     your aging loved ones?

2.  Have these changes been discussed among the family members?

3.  Have these changes been acknowledged by the aging loved ones?

Taking Action

To help you take action, we invite you to write down the steps of your action plan.

1.       List any changes you have seen

2.      If you have not discussed these changes with your siblings, set a time and date to discuss your observations.

3.      If you have not acknowledged these changes with your aging loved ones, set a time and date to discuss your observations.

If the information here is helpful, we now have an E-Course available with more areas to explore.  www.managingeldercare.com 

We wish you a Wonderful Holiday Season.

Cindy Streekstra

and Carol McGowan

Caregiving: Findings Solutions to the Caregiving Crisis

The caregiving crisis is again being recognized at the national level. WOW!! We just returned from a National Summit on Caregiving: Moving Science to Practice in Caregiver Support. The Summit was sponsored by the Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University in Americus, Georgia. Johnson & Johnson generously provided sponsorship.

The Rosalynn Carter Institute for Caregiving was established in 1987 in honor of former First Lady Rosalynn Carter, an alumna of GSW, to enhance her long-standing commitments to human development and mental health. RCI works to establish local, state and national partnerships committed to building quality long-term care systems and providing greater recognition and support for the millions of caregivers, both family and professional, the unsung heros of America.

RCI believes there must be a fundamantal shift in how our nation values caregiving and caregivers. RCI believes that all sectors of society must come together in new ways to develop solutions. The National Summit is one way RCI and Johnson & Johnson took this belief and moved it into practice.

There is a committment to improve the health and well-being of caregivers and improve the quality of all services to caregivers. The mental and physical health of caregivers needs to be safeguarded.

The Summit focused on moving science to practice and building effective bridges between researchers and caregivers. The goal is to take effective interventions proven through research and move them to community agencies, hospitals and other groups serving caregivers so the caregiver will benefit.

One of the most exciting parts of being at the conference was spending 2 days with professionals and caregivers from around the US and UK who had a passion for caring for the caregiver.

Stay tuned for more details.

With joy and thankfulness,

Cindy and Carol

Family Caregivers are Truly an Invisible Workforce

Most people do not think of becoming family caregivers, but most of us will become apart of some type of family caregiving situation in the future. Rosalyn Carter states "There are four kinds of people in the world - those who have been caregivers, those who currently are caregivers, those who will become caregivers, and those who will need caregivers..." (permission from LeAnn Thieman, chicken soup For The Caregivers Soul).

Over 54 million Americans help care for elderly family members or friends. Millions more selflessly assist people in various services in the community. While often rewarding, this caregiving requires tremendous emotional, physical, and spiritual strength. It also can take up enormous amounts of time and resources. The average family caregiver provides 18 hours of care per week; 20% provide "constant care" or 40 hours a week. Family caregivers account for an estimated $257 billion annually in services, if they were paid.

Nearly one out of every four United States household (23%) is involved in caregiving to persons aged 50 and over. (National Alliance for Caregiving and AARP, 1997)

In 85% of caregiving cases, all home care is provided by family members and friends. (General Accounting Office, 1994)

More than one quarter (26%) of the adult population has provided care for a chronically ill, disabled or aged family member or friend during the past year. Based on current census data that translates into more than 590 million people (National Family Caregivers Association (NFCA) Random sample Survey of 10000 adults by CareThere.com, Summer, 2000)

It is our goal at the Caregiver Cottage, to bring this awareness to families who have not yet, for the most part begun to take on the "work" of family caregiving. As we become aware that we will probably be in some type of family caregiving situation, we can begin to ask some important questions of ourselves and our families.

• What is our cultural history, has our family taken care of previous elderly family members.
• What is our current situation, with what number of available persons to share in the caregiving process.
• What are the financial considerations that need to be explored. Could the family compensate the primary caregiver?
• How do we want to be taken care of if we become frail when elderly. The questions are endless, and specific to each family's saturation.

The time to discuss this issue is now, before we encounter our family caregiving situation. Now is the time to make this issue "visible" and plan for the work and compensation that will be needed.

Elder Care Role Reversals

Our caregiving story is a little different; we are two nurses who have worked in elder care for over 25 years and during our experience have watched families as they deal with and transition into caring for their elderly loved ones. Many of the families we worked with were in crisis by the time they sought help. With all of these families we heard many stories, and in all of the stories there was a beginning caregiving point, when they and their family realized they were switching roles and acknowledged that they were beginning the role of taking care of their parent/loved one. When did they first notice a change in their loved ones behavior, condition or lifestyle, and when did they first express the recognition of needing to assist their loved one?

It is a difficult realization that they and their family may soon be or are in a caregiving role. With this realization comes the emotional journey of mapping out the path that they and their family will take. As in all of these stories, each elderly person had a different need; each family had a different background and culture code that guided them in providing for the care of their elders. 

As was seen over and over again, it takes a team of dedicated people and family members to provide the type of lifestyle that their parent/loved one desires and/or needs at this stage in their life. In our experience most people see the person who is providing the hands-on care as the only caregiver, but in reality it takes a team of family and friends who each take a valuable part of the responsibility and care tasks that their loved one needs, to be the caregiving team.

For us, one of our most important goals is to raise awareness of  the probability of taking care of our parents and loved ones. With the aging of the baby boom generation and the aging of their parents, the reality of taking care of an elderly loved one is everywhere. We use to mostly see it in the long term care service system, but now we can't go anywhere without hearing someone talking about taking care of their loved ones. In the checkout lane at a supermarket, both the customer in front of me and the cashier were sharing their respective stories of parent care, everyone seems to be confronting this issue, or knows someone who is.

And, the next important step is to assist families in assessing where they are in the their journey, laying out choices they may have for the future and most importantly to start the planning now, before they find themselves in a crisis situation.

The Caregiver Cottage is Now Fully Open for Business

We're back after a years absence from posting entries. During the past year we have been on a journey of bringing the Caregiver Cottage to you.

It has been a busy year filled with educating ourselves about the Internet and building an Internet presence. 

The goal is for the Caregiver Cottage to be a virtual place where caregivers can pause to gain information, support, guidance and peace of mind during their caregiving journey. We collected your stories and input on the survey, and have included your concerns and issues into our resource materials. We have set up a variety of pages on the Internet for your journey;

1. A gift for you, is a Web page where you can sign up to receive tips regarding 7 Critical Mistakes Families Make When Planning for Elder Care. The topics and information for these 7 areas was gathered during our 30 years of working with families and guiding them through their challenges. The 7 tips then provide you with a solution to explore and some actions to take to avoid these mistakes. http://www.guidingfamilycaregiving.com
2. A Web page that offers you a complimentary coaching session. During  this session we can get to know each other, explore where you are in the caregiving process and together look at what your coaching needs may be. http://www.coachingfamilycaregivers.com
3. A Website Home Base that presents our Coaching Program, tells about us, and offers resources. http://www.thecaregivercottage.com

The Caregiver Cottage is now fully functioning and offers coaching and resources for families who are providing care for elderly family members. We will guide you on the path of creating action steps that will help you navigate the many issues and needs that arise when caring for an elderly family member.

Where are You on the Caregiving Journey?

The caregiving experience can be so big that "it is hard to see the forest for the trees". It is easy to see each situation as it comes up, without looking out over the entire forest to create a path that will help us navigate the journey. Even if we have a plan for helping us on this journey, we may come upon a "speed bump" or an obstacle on the path that causes us to question what we should do next.

I recently spoke with a caregiver who was very comfortable providing the physical care for her husband because she had worked as a caregiver for most of her career. She had mapped out the path of caring for him at home and things were moving along as expected until a few months ago. Her husband started losing his appetite, was consequently not eating much and was losing a great deal of weight. She was trying very hard to make the foods he liked, and to get him to eat more. As we were talking she also told me that she had recently started experiencing "tingling" on one side of her face. During the course of this conversation she was able to recognize that the "tingling" happened when she was unable to get her husband to eat, when she felt the feelings of failure and helplessness. Once the emotional stress was recognized as an obstacle to her health and ultimately her ability to care for him, she could move on to develop ways to cope with this situation.

What do you need to be able to continue on the caregiving journey? What areas of caregiving are you dealing with currently?  Have you come upon any obstacles or speed bumps?  We have identified several areas of caregiving along the path and have listed them in a short survey.  We would like to hear from you, are you dealing with any of these areas now, or have in the past?  Are you dealing with an area that is not on the list, if so, please list it under "other".  If you have stories that relate to the areas of caregiving you have identified, please feel free to share your stories with us by using the comments section. 

Thanks ahead of time for your input in the survey and for sharing your story.

Click here to take survey