Caregiving - The Final Stage

Posted by Leona Bergstrom

Eventually a loved one, for whom you have provided care, dies. It always comes as a shock to the system, no matter how prepared you thought you were. Death rips our soul, our hearts and our lives.

I dare say it also changes everything for a caregiver. He or she must learn to grieve and accept loss. He must honor memories, plan a funeral, share his loved one’s life with others. And then, a caregiver has to figure out what to do with this huge void!

I had a friend whose mother lived for nearly 20 years in a local nursing home. My friend visited nearly every day and in the course of those visits became very close to other residents. She also learned to work with the staff and could often be found singing or reading to others. When her mom died, she not only missed her -- she missed the relationships at the nursing home! She experienced loss upon loss.

It is important to honor, to grieve, and to share the loss. It’s also important to think of what life after caregiving might be like. Dare you dream? Dare you explore new opportunities? Where do you live? I think this is a very sensitive time for families. Adult children and grandchildren need to be present as never before. For me it was sometimes hard to visit my mom after my dad died. Not because I didn’t want to be with her – but because I didn’t know how to be without him.

As I close this little exhortation about caregiving, may I say that family caregivers are my heroes! I honor you, respect you and encourage you to see that this service you offer your loved one is indeed a ministry. God has placed this opportunity at this time so that you might love as He loves – and WITH his love. Grace, peace and strength are yours because Jesus said, “Lo, I am with you always….”!

For more resources on caregiving go to:
www.caregiving.com (Denise B. identifies the stages of caregiving and gives more advice on what to do) www.nfcacares.org, the National Family Caregivers Association and
www.caregiving.org, the Family Caregiver Alliance
(Photo by lambertwm, shared via Flickr)

Realistic

Posted by Leona Bergstrom

This stage of caregiving is called realistic because this now providing care for a loved one has become the “norm” of life. Usually care has been provided over a prolonged period of time. The caregiver has encountered the health care and social service system on various levels, with various needs, and with varying degrees of intensity. Usually, there have been multiple hospital admissions, rehab stays in nursing homes, visits by home health care professionals, calls to 9-1-1 and more assessments than one cares to count. The fire station near my parents’ home could almost recognize my mom’s voice because the medic unit had had to respond so frequently to my dad’s needs.

This is a tough time because care needs are intense; there are more duties to be done than time in which to do them. Caregiving is a way of life.

Oddly enough, I suggest that this is when caregivers must try to find the hidden joys of life. Beth Witrogen McCloud tells a story of caring for her mother in her book: Caregiving: The Spiritual Journey of Love and Loss. She recounts the day when she was giving her mother a bath. Now, bath time was no easy matter and her mother had become almost violently opposed to such an event. So, Beth used bubble bath to lighten the mood. Bubbles were flying everywhere – including up their noses. Both mom and daughter got the giggles – for just a few moments. But they were moments of joy and laughter and almost normalcy. Taking care of a loved one can have some incredibly funny and joyful moments if one looks for them.

This is also when a caregiver needs to accept some help. It’s time to send out the SOS to family, friends and church members to help!

Jerry Large revisited

Posted by Terry McNichols

And in today's Seattle Times, Jerry Large (see yesterday's post) continues the dialogue regarding placing his mother in a nursing home. Do read his follow up to the post we referenced yesterday!

Caring for aged parents

Posted by Terry McNichols

Leona is traveling this week to attend to the dying of one of her aunts she has posted about recently (here and here). Leona lived next door to this aunt and spent many happy hours in her home. They have been very close for all of Leona's life. I found this column by Jerry Large in the Seattle Times. He has recently faced the need to put his own mother into a nursing home. The story is extremely poignant and I hope that you will read it.

Entrenched

Posted by Leona Bergstrom
The third stage of caregiving has been called “entrenched.” This is when a person is consistently involved in providing care for a loved one. Involvement is almost daily, if not constant. Usually, I’ve found that this is when a caregiver’s entire schedule is structured around the needs of his/her loved one. I’ve also found that this is when caregivers really begin exhibiting some of their own symptoms of fatigue, stress and burnout.

What does a caregiver need to do during this stage? First of all one must assess the appropriateness of the care environment. I’m seeing this with my own aunt as she has become increasingly weak and unable to navigate in her own apartment safely. My cousin has met with local service providers to develop a plan. While accessing services may cost extra dollars, it is relieving some of the pressure and stress on him! My aunt’s family can save their energy for enjoying visits that are pleasant and non-confrontational.

A second thing an entrenched caregiver needs to do is assess his/her own health and well-being. Too often the family caregiver begins to experience serious health issues – some which become fatal. Emotional and relational health can also suffer, so it’s important to take inventory of how things are going in a marriage, in a family or on the job.

And last, the caregiver needs to acknowledge and begin to process the losses and grieve them appropriately. We can never underestimate the grief and sadness that dwells deep in our hearts as we see our loved one decline in health or mental abilities. A friend of mine just lost her mother to Alzheimer’s disease and expressed her surprise that grief had hit her so hard when she thought had been saying good-bye for so long. A caregiver support group is a great place to share such struggles and emotions.
(Photo by zampano!!!, shared via Flickr)

Caregiving - Beginning Stages

Posted by Leona Bergstrom

Beginning Stages
These stages sure do play themselves out in real life! This week two of my cousins are making some tough choices about care for their respective mothers. One of my aunts needs skilled nursing care following a devastating stroke. The other aunt is requiring more assistance as she tries to live independently in her apartment.

Both of my cousins are benefiting from thinking ahead and researching the choices for “when the day comes.” While the decisions they are making are tough ones, they can rest easier knowing that they’ve studied the options. The real difficulty comes in who makes the decisions.

It is always optimal if our loved one is a part of the decision making team. Usually we are afraid to ask our parents what they want or what choice sounds the best because we have so many fears. We are afraid that our parent will think that we think he/she is dying. Or, that we think they can’t take care of themselves anymore – or any number of reasons that, while they may be true, seem to be off the radar for discussion. But in reality, no one really likes for others to make life decisions FOR us. We all want to have a say in what is happening, no matter how dire it may seem.

The conversation is sometimes tricky. My friend David Solie has done some great work in this area. We’ve recommended his book before, but let’s do it again: How to Say It to Seniors, by David Solie, Prentice Hall Press. Or read his blog on parent care at www.dsolie.com

For information on resources in a community, contact your local Area Agency on Aging or Elder Care Locater at www.eldercare.gov or call 800.677.1116
(Photo by maja-1x, shared via Flickr)

Beginning

Posted by Leona Bergstrom

The next stage of caregiving is simply “Beginning”. This is when a person has actually begun to provide care for a loved one. It may be as simple as running errands, grocery shopping, paying bills or as complex as providing personal care or administering medications. The hallmark of this stage is simply that a loved one is dependent on this assistance.

During this stage a person needs to learn the appropriate skills needed to provide care. In surveying family caregivers, one of the greatest fears reported was the fear of inadequacy. “I simply don’t know how to provide care….” Whether it is learning how to transfer a person from bed to wheelchair, becoming acquainted with recipes to meet diet restrictions or understanding appropriate communication techniques, it is important to be educated and ready.

The second thing a beginning caregiver needs to learn is how to make good decisions regarding the safety and well being of the care-recipient. How are you going to make decisions? Will you involve the care-receiver? The family? Your physician?

And finally, a beginning caregiver needs to be able to assess his/her own needs for breaks, respite and assistance. It’s easy to get caught up in the trap of thinking you have to do it all – all of the time. Caregiver burnout is not only commonplace, it is deadly. Begin now to learn how to set boundaries and limits – and communicate them clearly to your loved one and other family members.
(Photo by prakar, shared via Flickr)

Back to caregiving!

Posted by Leona Bergstrom

This weekend I’m headed to Denver. Yet, another opportunity for me to see how things are going with my mom and with other relatives. I know that there will be some surprises, some concerns and some relief.

I would like to spend the next few weeks talking about the “stages” of caregiving and what we might do to be better prepared.

The first stage is “Watchful.” This is when we have a growing concern about the health, safety or mental functioning of a loved one, and we anticipate the need to provide some level of assistance or care. An immediate crisis may not be in effect, but the threat of one seems to hang on the horizon.

This is when we need to prepare for the probability of caregiving. We need to begin researching options, gathering information and taking proactive steps. We may want to look at the variety of educational resources available. Hospitals, senior centers, Area Agencies on Aging, retirement communities and other service providers offer educational seminars to help us understand the process of disease of disability.

BREAKING NEWS: One such educational session is being held in Mt. Vernon on Saturday, June 6. It is a Christian Caregivers Conference and will be held at Mt. Vernon Presbyterian Church. It’s free. There are some great speakers that will instruct and encourage caregivers.
Contact Vicki McCarty at 360-387-0620 if you are interested.

I love to see churches provide this kind of information for their congregations. I have an entire seminar series on some of these issues prepared if you want me to come to your church! leonaberg@comcast.net I did one such training last week and a woman came up afterwards to tell me that her mother-in-law had just been diagnosed with dementia, likely Alzheimer’s. What should she do? What a great “watchful” caregiver! If she and her family begin to do some research now – on both the disease process and the resources available – care for her loved one is going to go much smoother.

Remember, these are emotionally laden issues. We all prefer the state of denial where we don’t acknowledge what is going on with our parents. But dwelling in that state is the worst long-distance caregiving you can provide.

(Photo by zappowbang, shared via Flickr)

Caregiving, part one

Posted by Leona Bergstrom

Over the past few weeks we have discussed some of our own dilemmas with caring for older parents. We’ve shared some of the pain, the frustration and the fear. I’m reminded that while I have taught many audiences about family caregiving, it is a whole different matter when the issues impact your own loved ones!

Digging for resources and ideas however, prompted me to get out some of the material I have utilized for community education settings. I’ve drawn on the wisdom of those who have walked this journey. Over the next few weeks I will post some of that information and hope that it can encourage and help others (as well as us!).

Here’s a preview:

We are not alone in this caregiving journey. Look at the stats:
• More than 50 million people in the U.S. provide are for a chronically ill, disabled or aged family member of friend during a given year. (U.S. DHHS 2000)
• The typical family caregiver is a 46 year old woman caring for a widowed mother who does not live with her. She is married and employed. Approximately 60% of family caregivers are women. (National Alliance for Caregiving, 2004)
• 17% of family caregivers are providing 40 hours of care a week or more. (National Alliance for Caregiving, 2004)

(For more information on the impact caregiving has on healthcare, the economy, personal stress, and other factors, visit www.nfacares.org)
(Photo by Lance and Erin, shared via Flickr)