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2017 Medicare Updates for Caregivers

February 1, 2017 at 2:51 pm

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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.

Local man starts the first Alabama Frontotemporal Degeneration Caregiver Support Group

January 25, 2017 at 3:05 pm

Jerry

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.

So imagine how excited Jerry is to have successfully made connections to initiate an Association of Frontotemporal Degeneration (AFTD) affiliated support group in our area.  This will be the first support group dedicated specifically to FTD caregivers in the state of Alabama. Collaborating with Leslie Johnson of Covenant Alzheimer’s Care, the disease specific support group will hold their first meeting in Spanish Fort at the Spanish Fort Community Center, 7361 Spanish Fort Blvd., Spanish Fort, AL 36527. Beginning on February 22, 2017, they will meet on the last Wednesday of each month at 5:30 pm. Jerry feels that it wasn’t his doing to pull this together. He states, ” It may sound weird, but I sometimes think that God is giving me a second calling to become an advocate for FTD. The fact that I am surrounded by people of this caliber is not my doing, but God’s.”

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.”

For this and other dementia support groups, see caregivers unite.org blog or the website calendar.

 

Jerry Debbie Debbie

 

 

Caring for someone with dementia is a lonely path. Find understanding, referrals, and encouragement at a local support group.

December 28, 2013 at 8:30 am

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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.

Refreshments are provided so call to let them know you will be there.  251-445-4204 or 251-421-4888.

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.

Call 251-421-4888 or 300-0250 for Gina Germany.

 http://touchingheartsseniorcare.com/index.html

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

ESCAMBIA COUNTY

 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 mdegraaf@dwmmh.org.   Map 

Florida Locations

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

Audrey.Hanline@choosecovenant.org

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

Martha.Allegri@choosecovenant.org

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
   

 

ALZHEIMER’S ASSOCIATION TELEPHONE CAREGIVER SUPPORT GROUP

  • First Monday of every month
  •   

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.

Welcome to Caregivers Unite. Let’s talk about local resources, referrals and ideas to make life richer for dementia care stakeholders.

November 27, 2012 at 3:59 pm

Do you have a question to ask, suggestion, referral, or recommendations to make? Here is the place to do it.

I welcome any comments that you have.  Either write your comment after any post or e-mail me at pittman1212@comcast.net.

To receive an automatic email of a recent post, subscribe at the bottom right of this page.  Be sure to confirm that you want to follow the blog when you get the confirmation email.  Many thanks and may you find something here to better your day.

purple angle symbol

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.

The Inconvenience of Incontinence

March 6, 2017 at 10:22 am

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 Tina Smith, BSN, CWON presents a very popular topic at the next Educational Support Group at E. A. Roberts Alzheimer’s Center.  Come learn  about products and resources available for incontinence. The meeting begins at 10:00 AM on Thursday, March 9, 2017.

Complimentary care is available during the meeting.  Please call 251-435-6950 for more information.

Located at:  E.A. Roberts Alzheimer’s Center

169 Mobile Infirmary Blvd.

Mobile, AL  36607

Keeping Love Alive as Memory Fades: The 5 Love Languages and the Alzheimer’s Journey

January 23, 2017 at 2:28 pm

book

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

January 6, 2017 at 2:00 pm

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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.

The Mustache Test

November 30, 2016 at 12:47 pm

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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.

As I joined my mother on a daily basis to help pass the long afternoons, we often found ourselves in the dayroom of the wing where her room was located, along with other residents who were also passing the time. Although I was a family member – a visitor – I was such a regular presence, that I felt as if I lived there, too. After all, I was subject to the ebb and flow of activity, while attempting to accommodate where my mother should be in order to receive the care she was scheduled for. If I took her away from her area at the wrong time, she might miss being checked for wet pants or something important like that, so we often stayed around and visited with whomever might be present. Usually our neighbors from the hall were also in limbo until something might come along to create a diversion – like the ice cream cart or an arrival of a new resident that we were all alerted to over the loudspeaker by the announcement, “Let us all welcome the new admit to, say, the East Wing, let us all welcome the new admit to the East Wing.” This revelation was always met among the residents with head shaking and looking at each other incredulously as we all wondered about the new admit. Once again we were reminded that we were viewed as “admits” without a name. Not people or neighbors, or friends but “admits.” I’m sure there was some privacy policy being followed here but eventually we would get to know the person’s name. Why not just go ahead and say it.  Just once. But it was never to be.

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.

 

 

 

 

In a world of advanced directives, I have written a prayer that asks God for my long-term care.

November 15, 2016 at 4:02 pm

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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

weekly paycheck.

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

way.

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.

AMEN

Stage 4: The Pragmatic Caregiver (by caregiving.com)

November 10, 2016 at 1:26 pm

I Am Still Helping

Stage 4: The Pragmatic Caregiver

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.

Your Challenge
To gain a greater understanding of yourself and your caree.

Your Purpose
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.

Up Close and Personal with Brian LeBlanc at next E. A. Roberts Educational Support Group

November 9, 2016 at 1:04 pm

Brian LeBlanc

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

Stage 3: The Entrenched Caregiver (by caregiving.com)

November 9, 2016 at 11:58 am

I Am Helping

Stage 3: The Entrenched Caregiver™

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;
–Receive support.

Your Challenge
To find the support and strength to continue.

Your Purpose
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.