The E.A. Roberts Alzheimer’s Center presents James Roberson, Regional SHIP Coordinator, at the next Educational Dementia Support Group on Thursday, February 9, 2017 at 10:00 am. He will answer questions concerning changes in Medicare for 2017 and how it will affect your family. The Center is located at 169 Mobile Infirmary Blvd, Mobile, AL 36607. Complimentary care will be provided during the meeting. Please call 251-435-6950 for more information.
Jerry Horn is a retired businessman who expected to spend his golden years traveling and enjoying his grandchildren. Instead, he has spent the last several years focused on caring for Debbie, his beloved wife of 44 years, proving his unfailing love while navigating life with her after a diagnosis of Frontotemporal Degeneration (FTD) combined with Primary Progressive Aphasia (PPA) and Parkinsonism. The diagnosis alone is tough to say but that’s nothing compared to the difficulties of living with this form of dementia that is the most common type for people under the age of 60. There is no cure or effective treatment to slow the progression of damage in the frontal and temporal parts of the brain that can make everyday life increasingly challenging. As neurons die in these regions, the lobes atrophy, wreaking havoc in thinking, communicating, walking, and may cause strange behaviors and poor judgment. The demanding task of providing care 24/7 hasn’t stopped Jerry from trying to help others as well.
Jerry will finally be able to share with others who can understand his need to connect, receive and give support, and learn from each other’s experience. Jerry says, “I see this as a major victory, and I hope that it is only the beginning of an entirely new focus on the FTD side of the dementia spectrum.”
Jerry is a living example of this quote from Anne Frank – “How wonderful it is that nobody need wait a single moment before starting to improve the world.”
Caring for someone with dementia is a lonely path. Find understanding, referrals, and encouragement at a local support group.
MOBILE COUNTY SUPPORT GROUPS
The Gulf Coast Dementia Services Support Group
Location: 3263 Demetropolis Road,Ste 10 at the Quadrangle Business Center, Mobile, AL 36693 at Touching Hearts Senior Care Office
The Caregiver Support Group is held the second Tuesday of every month, at 11am – 12pm at Touching Hearts Senior Care offices. This is a free event and completely confidential.
The Gulf Coast Dementia Services Support Groups provide emotional, educational and social support for caregivers through regularly scheduled meetings. Using Teepa Snow’s Positive Approach to Care, Gina Germany teaches participants to understand, recognize and care for persons with dementia.
E. A. Roberts Alzheimer Center offers support every second Thursday at 10 am. They are located at 169 Mobile Infirmary Drive. Please call 251-435-6950 for further information.
The Long Good-bye Support Group meets at noon for an hour on the second Tuesday of each month. Dauphin Way Methodist Church hosts this group and meets in the Bishop’s Meeting Room. If you would like to have lunch during the meeting, RSVP the church by Friday. Call the church at 251-471-1511.
Alzheimer’s/Dementia Support Group – Third Tuesday of every month from 6 to 7 pm. No entrance or support fees associated with group. VIA Senior Center, 1717 Dauphin Street, Mobile, AL 36604. For meeting information call 251-776-5999.
BALDWIN COUNTY SUPPORT GROUPS:
Covenant Care Educational Support Group Schedule
1. Last Wednesday of every month at 10.00 a.m. at the The Brennity of Daphne, 27440 Co. Rd. 13, Daphne, AL 36526.
2. First and Third Thursday of every month at 9:00 a.m. at the Foley Senior Center, 304 E. Rose Street, Foley, AL 36535
4. First Monday of the month at 12:00 p.m. at D.W. McMillan Hospital Stranded Conference Room, 1301 Belleville Avenue, Brewton, AL.
5. Frontotemporal Degeneration and Related Dementias Support Group: Last Wednesday of each month, beginning Feb. 22, 2017, at 5:30 p.m. at Spanish Fort Community Center, 7361 Spanish Fort Blvd., Spanish Fort, AL 36527.
These groups are open access, private and confidential. For more information, call Leslie.Johnson@choosecovenant.org>, Daphne, AL, 251-626-5255.
5. AFFINITY DEMENTIA CAREGIVER SUPPORT GROUP
First Wednesday of every month at 2:30 p.m. at Affinity Life Care Center, 12440 Magnolia Ave., Suite 300, Magnolia Springs, AL 36555.
Angel McWatters, RN, Affinity Life Care Center, 251-202-3971, www.affinitylifecarecenter.com
DAYBREAK – Gulf Shores United Methodist Church, located at 1900 Gulf Shores Parkway, offers DayBreak, a ministry providing support and service for caregivers and their loved ones with Alzheimer’s Disease. DayBreak is held on Monday and Wednesday from 10 a.m. to 2 p.m. Cost is nominal and lunch is provided. For more information, contact Dolly Crewes at 251-968-3634 or Terry Fowinkle at 251-968-2377. For more information, visit their website at Gulf Shores United Methodist Church.
Haven of Gulf Shores, a new 32 bed assisted and memory care facility, offers a support group the third Thursday evening of the month. Call Teresa Carrel for details at (251)923-2800.
SHEPARD’S PLACE – Held at Fairhope United Methodist Church on the first Tuesday of the month in the Church library. This is in conjunction with their Day Program offered for the memory challenged, Monday – Thursday from 9:00am to 1:00pm. Map
ALZHEIMER’S FAMILY SERVICES – Support group held on the first Monday of the month at noon in the Strandell Conference Room at D. W. McMillan Memorial Hospital, 1301 Belleville Avenue in Brewton, AL. Call 251-809-8309 for information or email facilitator, Marcia De Graaf, at firstname.lastname@example.org. Map
Covenant Care Educational Support Group Schedule
|FLORIDA LOCATIONS||Monthly Meeting Date||Time||Location||Address|
|Crestview||1st Thursday||1:30 p.m.||Silvercrest Health and Rehabilitation Center||910 Brookmeade Drive, Crestview, FL|
|Destin/Miramar Beach||Last Tuesday||2:00 p.m.||Sacred Heart of the Emerald Coast Suite 3 Conference Room||7800 U.S. Highway 98 West Miramar Beach, FL|
|Gulf Breeze||2nd Thursday||10:00 a.m.||Gulf Breeze United Methodist Church||75 Fairpoint Drive, Gulf Breeze, FL|
|Gulf Breeze-Early Onset Group||3rd Thursday||5:30 p.m.||For details contact
|Laurel Hill||3rd Thursday||2:00 p.m.||First Baptist Church of Laurel Hill||3972 2nd Avenue, Laurel Hill, FL|
|Milton||2nd Thursday||1:00 p.m.||Covenant Community Resource Center||6479 Caroline Street, Suite B, Milton, FL|
|Niceville||2nd Thursday||10:00 a.m.||Superior Residences of Niceville||2300 Partin Drive North, Niceville, FL|
|Niceville||Last Wednesday||10:00 a.m.||Crosspoint Church Chandler Center Room 701||214 South Partin Drive, Niceville, FL|
|Panama City||3rd Wednesday||10:00 a.m.||Superior Residences of Panama City||95 Grand Heron Drive, Panama City Beach, FL|
|Pensacola-Early Stage Group||1st Wednesday||1:00 p.m.||For details contact
|Pensacola||1st Tuesday||6:00 p.m.||Homestead Village||7830 Pine Forest Road, Pensacola, FL|
|Pensacola||2nd Friday||2:00 p.m.||Azalea Trace, The Trace Room||10100 Hillview Road, Pensacola, FL|
|Pensacola||2nd Monday||2:30 p.m.||Pine Forest United Methodist Church||2800 Wilde Lake Blvd., Pensacola, FL|
|Pensacola For On-site Respite call 850.266.2503||3rd Monday||2:30 p.m.||Council on Aging of West Florida||875 Royce Street, Pensacola, FL|
|Pensacola||4th Monday||10:00 a.m.||Trinity Presbyterian Church, Room E||3400 Bayou Blvd., Pensacola, FL|
|Shalimar||3rd Thursday||6:00 p.m.||Shalimar United Methodist Church||1 Old Ferry Road, Shalimar, FL|
The purpose of this support group is to reach those caregivers who could benefit from a support group, yet find it difficult to travel to a meeting site. The meeting is the first Monday of every month, from 3 pm to 4:30pm Central Time. Call 1-800-272-3900 to register. Kelli Moorehead will be in touch with you after you register.
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This Purple Angel symbol can be used by anyone raising awareness regarding dementia. It symbolizes a guardian over those living with dementia, their families and friends, as well as all those working to raise awareness about dementia world wide.
There is a new book on the dementia reading shelf. I came across this helpful information while perusing my audible library ap and have been listening ever since. Gary Chapman, author of many versions of “The 5 Love Languages” has partnered with a caregiver (Dr.Edward Shaw) and a relational expert (Debbie Barr) to produce a multi perspective account on how to maintain the love connection with People With Dementia (PWD).
Based on my personal experience of taking care of my own mother and aunt, and befriending many others during our time in assisted living , memory care, and skilled care, I whole heartily agree with what is written in this sweet book. If you need some tips on how to connect or stay connected with PWD, this easy read if for you.
Find more information on “Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer’s Journey” at amazon.com
“Palliative Care” is the topic at E.A.Roberts Alzheimer’s Center next Educational Dementia Support Group
RN Stefanie Willis-Turner will answer questions about Palliative Care at her presentation on January 12th at 10:00 am at E.A. Roberts Alzheimer’s Center. Complimentary care will be provided during the meeting.
This monthly support group meets at 169 Mobile Infirmary Blvd, Mobile, AL 36607. Please call 435-6950 for more information.
Life in a nursing home can become mundane after many hours of sitting still, day in and day out, while parked in a wheelchair in front of or within earshot of a television, after the basics of dressing and eating are accomplished, often empty handed, left to one’s imagination.
It didn’t take long to realize that initial loss of identity would remain. However visible you really were didn’t hinder how routinely you were overlooked. Even though this day room was within sight of the nurse’s station and was adjacent to the hall with staff going to and from, we rarely received eye contact from any of the passerby’s.
So, one day, I decided to test my theory that we existed in what has been referred to as “the land of the living dead”. I viewed my self-imposed status of nursing home resident with Alzheimer disease much like joining a leper colony. We had our own community, removed and distinct from where we once lived. We had suffered the grief of our loss of recognition and position in society, but in this safe harbor, where the promise of care and understanding by the marketer on our original tour of the nursing home was assured, would we have to endure being invisible here as well?
William James’ said, “No more fiendish punishment could be devised, were such a thing physically possible, than that one should be turned loose in society and remain absolutely unnoticed by all of the members thereof.”
We were all in a back hall being given the basics of care but were we seen? Did anyone really care who we were or what we wanted or needed?
I had in my big bag of goodies a package of stick-on mustaches. I often brought in an assortment of potential activities in case the time was right for a game of cards, magazines, water colors, brushes, a pad of paper and a blue-tooth speaker to connect with my smart phone for endless choices of music that we would use for our own entertainment and for anyone else who might be interested. So on this particular day I decided to see if anyone would notice if everyone in the dayroom were wearing a mustache. I was tired of feeling overlooked and rejected and I just wanted to see what would happen. After getting permission from my fellow conspirators, we each picked out the preferred style of mustache and stuck them under our noses – and waited. We giggled and amused ourselves with how we looked and I snapped photos (another breach of privacy but since no one was looking…) Yet, as the staff went to and fro, no one looked in to see us.
After a while, we grew tired of our little joke. The excitement waned as we realized no one was taking the bait. Seeing that one mustache had become something to chew on like a piece of candy, I retrieved them. Our experience supported my theory, confirming that we did exist in our own little world, unnoticed and ignored. As much as we were making the most of our interactions among ourselves, society around us was so busy and focused, that they missed out on our mischief that day and so many more. “Fiendish punishment,” indeed. The regular feeling of isolation and rejection wears on a person, slowly dimming the light of hope and expectations, until the lights finally go out.
I recently heard a speaker tell about “the 90 second rule.” Where staff in a residential care facility were required to spend 90 seconds with every resident they encountered, speaking positively and warmly before they went on with their duties. I needed that kind of encouragement as a family member who was responsible for the welfare of my mother whom I had given over to their care. Not only did I want my mother to feel included, recognized, and valued, but as a caregiver, I needed validation and acceptance as well.
To be fair, I always tried to empathize with the staff, especially the CNA’s. They were the least educated, the least paid, yet held the most influential position for setting the mood and quality of life for each resident. No one was more intimately involved with the residents. They did the dressing, bathing, providing all acts of hygiene, feeding, and helping. It was no wonder that they didn’t want to look over at a resident they had already tended to. Maybe they wanted to avoid the endless requests for something or general confusion about what was happening and “where am I” and “when am I going home” questions. Yet, I was keenly aware of their understanding or lack thereof of how to interact with someone with dementia. Correcting, disregarding and speaking about them as if they couldn’t hear was upsetting to watch and I often hoped that by demonstration, things would change. Perhaps they would see that I could brush my mother’s teeth without any resistance from her and thoroughly clean out her mouth of all lingering food. Didn’t they realize that it took some time and effort to warm up to my mother rather than expect her to perform on command? Maybe they would see the positive reaction to music instead of promoting the noise from the afternoon programs on television that may have been perceived as reality. I often wrestled at night, trying to come up with a new approach that might build a bridge to improved communications and care for my mother. Several times I brought in baked goods, provided meals of pizza and fixings for two shifts of care, shared citrus fruit from my tree to show my appreciation and for a time, kept a supply of granola bars and candy in my mother’s side table drawer as a treat for the CNA’s unsung efforts. There were some very nice exceptions that I always hoped would appear at the beginning of the next shift, but the steady stream of staff changes made each day unpredictable.
Despite my efforts, sometimes I was treated as a bother, in the way, or just not visible. Just like the residents, I often hungered for someone to smile at me and treat me like they were happy to see me. So my closest allies became the other residents, those who were lining the halls as I passed to enter and exit the long pathway to my mother’s room. In time, I found ways to connect to residents and staff that would make my life better. But what about the residents? Would life improve for them, too?
The mustache test validated what I already knew. It is possible to be alone in a crowded place. The greatest punishment is to go unnoticed by society yet with a little intentional effort that can be changed. You don’t have to have all the solutions to someone’s trials to make a difference. Sometimes all it takes is a smile, a kind heart, and a listening ear.
My time with our neighbors in skilled care over that 4 year period were some of the richest personal interactions I’ve ever experienced. My hope and purpose in writing this is that in all circumstances, especially for the many who are living with Alzheimer’s disease, we take the time to see one another for who we have been and who we really are now, enjoy one another through those encounters, and embrace the present as the gift it is.
My Prayer by Alzheimer’s Daughter
If I enter the darkness that enveloped the women in my family
before me, I ask that you would provide a good caregiver. I want
someone to care for me as a friend, and is empathetic to my plight.
I want someone who will get to know my life history and cherish
the time we spend together.
If I am lost to whom I am, I want my “friend” to tell me a story
about a little girl fondly called Buffer by her daddy, who always
cared deeply for the needs of her family. I’d like to hear about my favorite dog,
Pittman, and how devoted he was to me.
On some days, we may just live in the moment, and spend a happy
day accomplishing the menial chores that we must perform.
Grocery shopping could be an exercise in stimulating the senses,
starting by looking at the pretty pastries in the bakery, then feel the
firm tomatoes in the produce section and take in the lovely sights
of all the other garden varieties colorfully displayed. I’d want to
grind some coffee beans just for the rich scent that emanates from
the machine even though I don’t drink coffee. She’d let me push
my own buggy and be patient with me when something of interest
catches my eye. I could hold on to the buggy while bending down
to peer into the big glass doors covering the freezer sections allowing me
to exercise my limbs without the fear of falling.
When it was time to check out, I would help lift the items from the
buggy onto the conveyer belt, using my bent fingers in hopes of
relief from their constant ache.
My companion would protect me from the questioning eyes of
those who didn’t know what a special person I am. She would
lovingly put her arm around me and tell me how much she loved
me when I tried to go where I shouldn’t. She’d draw my attention
to something I couldn’t resist and I would follow her lead. We’d
move on toward the unknown together and I‘d be happy to be with
someone I could trust and who knew what to do.
The women who cared for my mother came and went. Some
would know just how to enter her world and go along with her as
they reached their daily goals of care. Others just did the
minimum of effort and sat quietly, lost in the crossword puzzle or
handheld device brought along to help pass the hours of sitting,
taking the term private duty sitter literally, as they added up their
My dear grandmother never forgot who I was, even when she was
confined to her bed under the watchful eyes of three shifts of
women, round the clock for several years. We had spent so much
time together in her later years that the sound of my voice and the
touch of my hand on her arm brought back my name to her lips
that she was still able to say aloud. That’s the kind of care I want
to receive. From someone who will see me as I looked in the
photograph taken when I was a young, beautiful woman, full of
promise, fresh and unblemished. Not like the wrinkled, worn,
volatile creature that I now may appear to be.
I want someone who wants to be with me and thinks of things we
can do together that will cause us to laugh and smile. She will
show me, tell me, and sing with me. She will pray for me, include
me and hold my hand. She’ll read aloud short stories and bible
verses that may still be hidden in the depths of my brain. I want to
recognize something and sing that song buried beneath the noise
and confusion that predominates my consciousness.
She’ll look into my eyes and see what I see. Even if my words are
few or gone altogether, I’ll still be there, hoping for a friendly
voice, one that is full of love and compassion. She’ll give me time
to respond to her efforts and I’ll try to find my way to the surface.
She knows that I might be getting lost along the way, and it may
take me a while to begin to understand what is happening. She’ll
know that I do best when things are done consistently; her
sentences are short so I can comprehend and she’ll give me one
instruction at a time. I’ll want her to stay with me. She won’t
leave because I’m here and I’m often in a fog and can’t find my
Please Lord, hear my prayer. If I begin to wander away from who
I was, please seek me out; rescue me back into the flock as you
have done before. Send a faithful servant in the form of a
caregiver to keep me safe until I am in your arms forever.
I am still helping a family member or friend.
Who are you?
You’ve been through it all: hospital admission and discharges; short-term rehab stays in nursing homes; a vast array of community services. You may appear to doubt the advice given by health care professionals; you’ve just been through the health care system long enough to know that sometimes health care professionals may not seem to have your best interest in mind.
Some family members and health care professionals worry about your ability to find humor in situations they find offensive. They view your attitude as “calloused” and “uncaring.” Far from it, you have a very practical, very realistic approach toward your caregiving role–and your sense of humor has been a critical tool for your survival. Without your sense of humor, you would have given up a long time ago.
Your Keyword: Welcome
–Welcome the joys of your relationship;
–Welcome forgiveness (of yourself, of your caree, of other family members and friends);
–Welcome shared activities.
To gain a greater understanding of yourself and your caree.
To gain a better understanding of yourself and your caree. You’ve settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.
As a “pragmatic caregiver,” what can you do?
1. Work on finding joy in your relationship with your caree.
The biggest joy-killer are your hands-on duties: bathing, dressing, incontinence care. But these duties bring you together, this is your time together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.
2. Work on forgiving your caree for past hurts.
Resentment toward past wrong and injustices will make your present caregiving role very difficult. Let go of what was and concentrate on making what is healthy and productive. Forgiving your caree is one of the best ways you take care of yourself.
3. Develop a habit of enjoying shared activities.
Develop a routine of time shared as husband-wife, mother-daughter, father-son rather than as just caregiver and caree. Releasing the roles of caregiver and caree allows you to enjoy each other.
4. Begin to think about your future.
What goals have you yet to achieve? How can you achieve them? How can your caree help you achieve them?
5. An apple a day…
What’s your apple in this stage? What helps you to feel good on a daily basis? You may feel like trying something new. That’s good! You can never have too many apples.
If you haven’t heard Brian LeBlanc’s “Up Close and Personal” story of his experience with Early Onset Alzheimer’s disease, this is your opportunity. The E. A. Roberts Alzheimer Center holds it’s monthly support group on the second Thursday of each month at 169 Mobile Infirmary Boulevard at 10:00 am. That’s November 10, 2016. Complimentary care is provided during the meeting.
251-435-6950 | fax 251-435-6940
I am helping a family member or friend.
Who are you?
Your involvement with your caree is almost daily–if not constant. Your caree may live with you–or your involvement means that your day is structured to be available to your caree. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your caree’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your caree’s abilities and functions and often long for the days before caregiving. And, you’re tired.
Your Keyword: Receive
–Receive help–from anyone who offers;
–Receive breaks from caregiving;
To find the support and strength to continue.
To develop a routine, create a familiar schedule for both yourself and your caree. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your caree–this stage may be the most difficult for both of you. The changes you prepared for in Stage I and II are now a reality–you have become something of a lifeline to a family member or friend.
In addition to your caree’s routine of care, create a routine for yourself. In your routine include: Time for the unexpected; a ritual which begins and ends your day; and a “healthness” activity that nurtures your spiritual, emotional, physical, mental needs.
As an “entrenched caregiver,” what can you do?
1. Determine your limits in your day and in your role.
How long can your caree remain at home? What’s your comfort level in providing care in your home? For instance, some family caregivers feel uncomfortable providing care when their caree becomes incontinent. Others determine they can provide care at home as long as insurance or Medicare benefits offset some of the home care expenses. Others feel they can provide care as long as their other family members, like spouses and adult children, will put up with it.
Just as important as understanding your limits in your role is recognizing your limits during your day. Consider:
–Which tasks and responsibilities feel like a struggle?
–What times during the day do you feel the greatest amount of stress?
–When do you find yourself running late, losing your temper, scrambling for a solution?
–What do you find yourself dreading or hating?
–When do you find yourself in a tug-of-war with your caree?
–What times of the day are tough for your caree?
–When during the day does your worry about your caree intensify?
When you understand your limits, you can look for help to manage what’s beyond your limits. Understanding your limits will ensure you, your caree and your family will stay in a safe place.
Everyone has limits. What are yours?
2. What are your caree’s limits?
Understanding your caree’s limits will help schedule your day and organize your help. Limits will change regularly, so be aware of change in tolerance and fatigue. Not sure how much help to schedule? Add more than you think. You can never have too much.
3. Continue regular breaks.
Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can. Take time to enjoy the paradise you built in Stage II.
4. Use your Solutions Fund.
Make deposits and take withdrawals, using the money for boredom, breaks and back-up plans.
5. Keep up with a support system–a caregiver’s support group or empathetic and understand family members or friends.
6. Continue to learn about your caree’s illness or condition.
What’s next for your caree? Are you up to the next steps in his or her illness?
7. Increase help as your caree declines.
Become comfortable with adding more help as more help is needed. You may think, “I’m okay keeping the level of help as it is.” Unfortunately, keeping the level where your caree was rather than where he or she is will hurt both of you. Note the struggles in the day, then work to add help for you and your caree to manage the struggles.
8. Manage the budget as much as you manage the care.
As care needs increase, so does the budget. When you caree has funds to pay for about 18 months in a nursing home, then take note of the situation. This is the time to consider nursing home placement, when your caree’s funds will afford the best choices. Hold a family meeting, tour local facilities, consult with professionals, such as a geriatric care manager. You may decide this isn’t the time to decide. That’s okay. It’s important to be aware that sometimes the budget determines the decision on where a caree continues to receive care. It’s most important to be aware of your choices and to make the one that’s right for you and your caree.
If you care for your spouse and consider nursing home placement, know that a certain amount of your assets will be protected and that you will not have to deplete all your assets to pay for your spouse’s care in a nursing home. Visit Medicaid.gov to learn more.
9. Continue writing in both journals—yours and the other about your caree.
10. Forgive yourself for your bad moments and bad days.
They will happen. After they do, give yourself a clean slate to start over.
11. Set boundaries which protect: Your Time; Your Values; Your Well-being, Your Priorities; Your Self.
Examples of communicating boundaries include:
–“I’m taking a two-hour break after lunch. I have everything that you’ll need set up in the living room. Thank you so much for helping me enjoy this time. I’m so grateful for your support.”
–“I’m uncomfortable with the tone of our discussion. Let’s table our talk until tomorrow.”
–“I’m booked, so can’t handle that request. Thank you for thinking of me.”
12. Give you and your caree room for your difficult moments and bad days.
When you’re having a tough time, simply say: “I’m having a bad day. I’m taking a few minutes for myself.” When it’s your caree’s turn, say, “I’m sorry you’re having a bad day. I’m going to step away for a few moments.”
13. An apple a day…
What’s your apple in this stage? You may feel tempted to sacrifice your apple in this stage. Your apple can’t be sacrificed. Your apple is what makes you feel normal, like yourself. Keep it.
I am starting to help a family member or friend.
Who are you?
You’ve begun to help your family member on a regular basis, weekly, perhaps even a few times a week. Your duties range from errand-running and bill-paying to some assistance with hands-on care.
Your keyword: Find
–Find services that help.
–Find support that comforts.
–Find ways to enjoy your hobbies and interest.
To discover solutions that work.
This is your entry into the caregiving role. This is your time to experiment, to get your feet wet and see what works. This is your opportunity to learn how the health care industry works with, or in some cases, against you. Now is the time to shape your caregiving personality: What duties are you comfortable with? What duties make you uncomfortable? How well are you and your caree getting along? What situations would create overwhelming stresses for both of you? (To help you determine your caregiving personality, we’ve included information on how to create your Caregiving Mission Statement.)
This is also the time when you get a feel for the present and future budgets needed to provide the care your caree requires.
In addition, keep up with your hobbies and interests (you may be able only to keep the ones that you enjoy most), ensuring you have made a habit of spending time on your own, enjoying yourself.
As a “freshman caregiver,” what can you do?
1. Learn as much as you can about your caree’s illness, disease or condition.
Consult the local branches or chapters of national organizations such as The Arthritis Foundation, the Alzheimer’s Association, The Cancer Society. What does the future hold for you and your caree?
2. Learn how to provide proper care from health care professionals or from health care videos, manuals or books.
If your caree is hospitalized or receives short-term therapy at a nursing home, ask the staff to show you proper caregiving techniques: lifting, transfers, bathing. If you can, record the therapy sessions so you can refer to your videos when you’re providing the care at home. Or, search the Internet, including YouTube.com, for hands-on care information and tutorials.
It’s very difficult to provide care when you are unsure of what you’re doing. You’ll feel much better when you’re confident of your skills.
3. Join a support group–online or in your community.
It’s so isolating to be a caregiver! Support groups will hook you up with others in similar situations; often, you’ll learn of community resources and options from other caregivers that you were not aware of.
4. Count on regular breaks from caregiving.
Plan for regular breaks–an hour daily, an afternoon weekly, or a day monthly–whatever you can manage. Enlist the help of relatives and community services (such as a volunteer group at your local church) so you can take time off regularly. Relatives can help in many ways–through financial support, social support (calling the caree regularly just “to talk”) as well as respite support.
5. Rely on help from community organizations.
Meals on Wheels, home care agencies and day care centers, to name just a few, may offer services that your caree needs.
Contact your local Area Agency on Aging for a listing of services and organizations in your community. Visit your local medical equipment supply store to find devices and gadgets that enhance your caree’s abilities–and independence from you. Remember, allowing the help of others is a sign of strength.
In addition, ask about local, state or federal programs (like the Veterans Administration’s Aid and Attendant Care Program) that might provide financial assistance for you and/or your caree. As your caree’s care needs increase, so will the costs associated with his or her care. Understanding what programs can help, in addition to understanding what your caree can afford, will help you plan appropriately for the future.
6. Create your rhythm of helping.
You’ll want to find your flow–the rhythm of what you do, what other family members do, what you hire to get done and what your caree does. Keeping the rhythm, which will change and ebb and flow, helps you keep what’s important to you (activities, career, relationships).
7. Keep your caree’s wishes in mind.
When appropriate, ask for his or her input and ideas. Does your caree still feel good about living at home? What does your caree fear or dread? (These are also good questions to ask yourself!)
You may disagree with your caree’s lifestyle choices. You may be incredibly exasperated by your caree’s inability to accept help or make good decisions. Vent your frustations in your journal and to your support group. It’s your caree’s life, which means you want to respect his or her decisions.
If your caree suffers from a cognitive impairment, you’ll want to step in and ensure your caree’s safety. If you struggle to keep your caree safe, consider hiring a geriatric care manager who can help put solutions in place. (You can learn more about geriatric care managers and locate one near your caree here: www.caremanager.org.)
8. Reflect the changes in your journal.
How do you feel now? What are your concerns? Fears? What outcomes are you working toward? What losses have you noticed during this period? What changes in the relationship cause you to feel sad? What changes have given you comfort?
9. Start a second journal that you use to detail your caree’s needs and your caregiving responsibilities.
Note any changes in your caree’s health and condition so that you can confidently discuss your concerns during physician appointments. Use your journal as a caregiving manual, which will help when others step in to provide care. Continue to chronicle your caregiving journey in your first journal. What causes you to mourn?
10. Create a spreadsheet that details your caree’s medical history, medications, hospitalizations, treatments and changes in medical status.
A searchable document, like a spreadsheet, will be handy throughout your caregiving experience. You’ll be able to easily find details relating to important information, such as previous hospitalizations, medication changes and lab results.
11. Create the habit of regularly holding family meetings.
And, if you and your caree share a household with other family members (including children), consider creating House Rules. Rules for the household include:
–Who does what, how and when;
–Guidelines for fights, fun, and festivals (celebrations);
–Schedule of meetings and their purposes;
–Expectations in regard to support, engagement and participation.
12. Manage the money: Develop a budget, keep track of expenses, set up a filing system for bills and receipts.
Keep your caree’s expenses separate from yours and your family’s. Keep track (and receipts) of any of your caree’s bills that you pay. If you’re overwhelmed, consider having a professional, like a financial planner or bank trust officer, oversee your caree’s financial situation, including paying bills.
13. Start a Solutions Fund so you can hire solutions.
The account funds solutions for boredom, breaks and back-up plans. Contribute a monthly amount; allow yourself flexibility in how you use the monthly budget. Use the fund for your caree, for the house, for you.
Use the Solutions Fund for your caree to hire services such as home health, adult day or to purchase games from Marbles the Brain Store or products from The Alzheimer’s Store or activities from eNASCO.
Use the fund for your house (or your caree’s) to hire cleaning service, lawn maintenance, snow removal. The fund buys you services from a counselor or life coach, or for pampering services, adult education classes and activities.
Ask family members to contribute to your Solutions Fund.
14. Have back-up plans and then back-up plans for your back-up plan.
Ask yourself, “What if…” and then create a plan to manage the “What if’s.” If it can happen, most likely it will. Be ready with a plan. A geriatric care manager can be invaluable in developing your back-up plans. (Learn more about geriatric care managers and locate one near your caree.)
15. Help yourself, especially if your caree refuses help.
You may find great resources to help your caree, only to be shut down by a stubborn caree. As you spend more time with your caree, you’ll have less time to keep up with your responsibilities. Hire out services to help you, like housecleaning and lawn maintenance, as often as you can. Even if you can only afford a housecleaning service once a year, do it. And, do it when it will help you most.
In addition, keep up-to-date on community resources and providers. Although your caree may refuse help now, a day may come when you’ll need to step in with help.
16. Build your own paradise of privacy.
Call a spare bedroom or a corner in the basement your own. Add your favorite things (books, chocolate, candles, scrapbook, journal, music, TV, videos, photography, family photos) to make the space a retreat you love to use.
17. You are, and will continue to be, your caree’s most important health care provider.
You have critical knowledge of your caree’s health. More than anyone, you know your caree best, which means you are your caree’s best advocate.
18. Continue to maintain your healthy lifestyle.
Take note when the stress causes too much comfort food or too few walks. One of your best defenses against the impact of stress is a healthy lifestyle.
19. An apple a day…
What’s your apple in this stage? What helps you to feel good on a daily basis? Enjoy your apple every day.