Portrait of a Struggle: Still Alice and Early Memory Loss

The AGE of Central Texas Blog is proud to present the following post by K.C. Lawrence, our new Early Memory Loss Support Program Director. She reflects on how Still Alice illuminates her work with Early Memory Loss patients, and how her work, in turn, sheds light on the novel and the film.

The film Still Alice is based on a book about a Harvard linguistics professor diagnosed with early-stage Alzheimer’s disease.  It chronicles the rapid progression of the disease from Alice’s point of view:  over two years, the disease takes her from working full-time to not recognizing her children.  The story covers her struggles at work, changes in her relationships, and how she grapples with losing her independence.  Most of all, the story shines light on the changes in how a person with cognitive impairment views herself, those close to her, and her world.

Open Letter to Caregivers

We are proud to present a post by AGE’s Caregiver Information and Resource Director. Hector Rodriguez joined AGE last year and since then he’s been providing crucial consultations and referrals to caregivers from all over Central Texas and beyond. 

~~~

This is for you, the Caregiver.

I’ve seen it in your eyes, I’ve heard it in your voice, and I’ve read it in your emails…You’re stressed. You’re scared.  You’re exhausted.  You’re at wit’s end.  Every time I speak to you, caregiver, I am taken back to a time where I was also stressed, scared, exhausted, and at my wit’s end.  You are constantly trying to remember the happier days.  The days when you did not have to worry about your parent wandering or getting lost.  The days when you did not have to change your parent’s diaper.  The days when you did not have to lift your spouse in and out of bed and in and out of the shower.  No rest for the weary.

You are a caregiver.

Why did you become a caregiver you ask? You didn’t ask for it.  You didn’t want to be one. I was only 22 years-old when I became a dementia caregiver, and until then all I had cared about was my college exams, our next fightin’ Texas Aggie football game, preparing for the LSAT, and the next keg-party. I am sure you are thinking that these are supposed to be the golden years for you and your spouse.  You were planning to be take cruises in the Mediterranean, maybe pick up a hobby together, or visit every vineyard in Napa Valley.  You never expected to be re-teaching your spouse on how to use a toothbrush.

Holiday Caregiving Tips

Family caregivers are probably feeling extra stressed during the holiday season. As if the holidays weren’t busy enough, caregivers are faced with their normal pressures and responsibilities as well.

Check out these tips for caregiving over the holidays to help make your job easier and your winter holidays go smoothly.

– Schedule activities for the day early in the day. Holidays can be tiring for everybody. But for someone who is struggling to find their place in an already confusing world, the stress and agitation increases as the day goes on. Saving a time of sitting and quietly visiting towards the end of the day can be helpful to everybody.

– If available, arrange respite care ahead of time. This can you give an opportunity to get a well-deserved vacation or personal break. Visit nearby Adult Day centers or memory care communities to determine if respite care is available and appropriate.

– Include your loved one in your holiday preparations. Focus on their strengths, and empower them to use their own capabilities to help with small tasks. It makes them feel that they are being useful, restoring a sense of meaning and purpose, while at the same time help to occupy them while you take care of other preparations.

– With decorating comes extra electrical cords. Secure all extra cords so that they are not a hazard. It’s a good idea to run them along the outside walls where they are not trip hazards and look discreet.

– Keep your loved one’s routine as close to normal as possible. If disruption in schedule and routine is a concern, consider hiring an in-home caregiver for a few hours or a few days to provide respite care in your loved one’s home.

– Talk to family and friends before they arrive to your house. Tell your guests in advance how to deal with any situations that might arise with the person you care for.

– Connect with support. Online message boards (such as http://community.aarp.org/) can be convenient and helpful. Seek support from a professional therapist or counselor if you feel you need it.

– Don’t forget to care for yourself. Make time for exercise such as yoga, meditation, or tai chi. Relax with aromatherapy or get outside for some Vitamin D. It’s easy to feel overwhelmed when you are surrounded by people, so scheduling in some “me” time will help to keep you centered and ultimately serve as a better caregiver during this time.

This giving season, remember #GivingTuesday!

There’s a day for giving thanks. There are two for getting deals. Did you know that now there is #GivingTuesday, a day dedicated to giving back? On Tuesday, December 2, 2014, we have the chance to come together for one common purpose: to celebrate how giving to each other changes the world.

It’s simple–  giving back can mean giving your time, a donation, a hug, a tweet… just give! Then tell everyone you can about how you are giving.

Generosity, your generosity, is what allows AGE of Central Texas to exist and to give our all to the older adults and family caregivers we serve. Join us and be a part of a global celebration of a new tradition of generosity.

This video has some ideas for ways to give back and explains more about #GivingTuesday!

#GivingTuesday started in 2012 as a way to transform how people think about, talk about, and participate in the giving season. To learn more about the #GivingTuesday movement, visit www.givingtuesday.org.

To support the older adults and family caregivers that we serve during #GivingTuesday, click here to make a donation. Make a donation before December 31st and your donation will be DOUBLED thanks to a generous challenge match by the Carl C. Anderson Sr. and Mario Jo Anderson Charitable Foundation.

However you choose to give this #GivingTuesday, thank you for helping make this world a better place.

What is a Caregiver?

For our fourth post in our Caregiver Month Blog Series, we are proud to present a post by Trish Hughes Kreis. Many caregivers don’t even know they are caregivers. Self-identifying can be the first step in getting the support you need. Thanks to Trish for this post, and thanks to Caregiver Cafe (http://www.caregivingcafe.com/blog/) for sharing with us!

What is a Caregiver?

by Trish Hughes Kreis

For many years I did not realize I was a caregiver and have met many other caregivers who felt the same way.

I thought I wasn’t a caregiver because I didn’t care for Robert one hundred percent of the time. In my mind, I was not a caregiver because Robert could do many things on his own. I was not a caregiver because others who really, truly are caregivers have much more to do than what I do.

It was surprising to me to learn that these other “real caregivers” felt they were not caregivers either. They were just helping friends or family who needed help.

That’s when I realized: caregiving comes in all forms and, yes, we are all caregivers.

More importantly, caregiving is not a competition. It doesn’t matter the amount we do compared to someone else!

I am a caregiver for my brother Robert who has lived with uncontrolled epilepsy his entire life.  He was able to live independently with his companion for many years and our family checked on him and helped him with his finances.

However, six years ago, it became apparent that he was unable to safely live on his own. Robert’s uncontrolled seizures, brain surgeries, anti-epilepsy medications and head trauma have taken a toll on his cognitive and physical abilities and there has been a significant decline in the last few years, even since taking over his care.

I did not know what I was getting into when I first started caregiving for Robert. Robert lived ninety minutes away from me so at first, I just regularly called to check on him. It quickly progressed to taking him to doctor appointments while he still lived at home and making calls to see if he qualified for in-home care.  I hired a housekeeper to keep his and his companion’s house clean only to learn from the housekeeper that they subsisted on long-expired food.

During this time, Robert developed a life-threatening infection from the Deep Brain Stimulator that he had implanted (he was in a study through his neurologist to see if this would help control his seizures).  I moved him to a Skilled Nursing Facility near me. After a few stops in a Residential Care Facility for the Elderly (he was there under an exemption for those under 65 years of age), and a Board and Care home, Robert now lives with me and my husband.

When Robert moved to the SNF and I took over his care, I was quite overwhelmed.  Robert’s insurance is paid through Medicare and Medicaid and he receives Social Security benefits because of his disability.  While I muddled through the maze of these and other social programs, one of my first lessons was to be persistent and not give up.

Once I got past the overwhelmed stage, I realized there was information and resources I wanted to share with other caregivers so I started a blog (RobertsSister.com) about caring for Robert. There are millions of caregivers providing care to friends and family and there is no reason for each of us to go through this experience alone or to start learning everything from scratch.

My most important lessons I have learned so far are (in no particular order):

1.  Connect with others.  This site (CaregivingCafe.com) has resources and links to information for caregivers. Lynn Greenblatt was one of the first people to help me as a caregiver when I was trying to re-home a power wheelchair. I will not forget her kindness and responsiveness to my questions. CareGiving.com is another website that is has one of the most supportive community of caregivers I have found.  Denise Brown runs an educational and supportive website for caregivers to learn, share and connect.

2.  Do not give up.  We hear the word “no” a lot when advocating for our caree.  Do not let that be a deterrent.  Be creative when searching for answers – sometimes asking questions (or asking questions in a different way) can lead to “yes.”

3.  Educate yourself.  The more you know about your caree and their disease, disability or disorder, the more informed questions you will be able to ask which will lead to keeping your caree as healthy and happy as possible.

4.  Take care of yourself.  Easy for me to say! Caregivers always hear this and it can be annoying when it seems impossible to even take a five minute break. Even if a break or respite is not possible, go easy on yourself. Remind yourself that tomorrow will be a new day. Be kind to YOU. That is the best self-care you can give yourself.  Remember, we are all doing the best we can!

Caregiving is difficult (and some days seems impossible) but this experience has given me great satisfaction and allowed me opportunities to meet terrific, caring people.

I wouldn’t have it any other way.

About the author:

Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates for her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible. Robert has lived with intractable epilepsy his entire life and was recently diagnosed with Cumulative Traumatic Encephalomyelopathy and Parkinsonism (both due to repeated concussions and a lifetime of uncontrolled seizures). Robert now lives with Trish and her husband, Richard.

 

Trish is passionate about helping Robert fulfill his expressed life purpose of spreading awareness and education about epilepsy. However, she is on a no less important mission of keeping a never-ending supply of Word Search puzzle books and a steady supply of Jeopardy and Family Feud shows recorded for Robert as the simple things are what make Robert truly happy.

 

Trish is the author of Forever a Caregiver and can be reached through her blog http://www.RobertsSister.com,Facebook (www.facebook.com/RobertsSister), or Twitter(@RobertsSister1).

What I do as a Caregiver

For the third installation in our Caregiver Month blog series, AGE is proud to present this heartfelt piece by Margaret Lucas.

What I do as a Caregiver

As a caregiver I try to care for my husband and provide assistance and direction in his daily activities. My husband is a physician. He was very successful in his work and an excellent public speaker until memory loss became a challenge in his daily life.

My role is to be a source of support and care. It is my responsibility and desire to provide for his comfort and help him to have a quality life. I take these responsibilities seriously. For example, when he began asking about our schedule for the day three or four times during a 30-minute period, I purchased a whiteboard at our local office supply store. Each morning, I write the day of the week, month and date at the top of the whiteboard. Then I list the appointments and time of each. If the board remains white, we have a free and open day to accomplish those things we desire to do.

Another example of my responsibility is keeping his medication holder filled properly. The seven day, plastic holder works well. I order his prescriptions as needed.

We complete many daily tasks together. You make the bed together each morning and try to make it an enjoyable experience such as pulling too much sheet on one side or teasing as we place the pillows in the wrong spot. We always end the bed making with a hug.

Five Thing’s I’ve Learned as a Caregiver

By Lili Cantu

For Week 2 in our Caregiver Month Blog Series, we are pleased by present the following post by Lili Cantu.

My father was diagnosed with dementia at the end of 2013, though as is often the case, we knew something was wrong for much longer. Now that we have had time to sit with the diagnosis, AGE has given me an opportunity to share what I have learned from my experience as a caregiver over the past year. I actually consider myself the caregiver of the caregiver, as I am walking with both my parents in this journey. If you are reading this, I hope you can glean some insight from Five Things I’ve Learned:

• There is help available if you look for it. I cannot express enough thanks to the wonderful people at AGE. Getting a diagnosis was very difficult and frustrating, and we went through several medical professionals before we found the right kind of help for Dad. The process took several years and left us feeling pretty shell-shocked, so it has been wonderful to feel heard each and every time we have talked with someone from AGE. Now we have attended CareGiverU, and have signed Dad up to start activities and give my mom some respite. These have been huge steps in our journey.

• Dementia is not just a disease of memory. It affects all brain functioning. At Savvy Caregiver, I had so many “ah-ha moments” where new light was shed on a behavior that my Dad was demonstrating. So many things make more sense now: he whispers to himself in an attempt to keep his language skills; he wears his raggedy old fleece because it gives him a sense of security; he falls asleep often because he is exhausted from his efforts to “act normal”; he can’t use a key card at a hotel because his spatial reasoning is diminishing. It is nice to have explanations for all his behaviors, and to know it’s not him—it’s the dementia.

• Expect the unexpected when it comes to how loved ones will react to the news of his diagnosis. The people you think will be the most helpful and supportive aren’t always the ones to step up. We are also discovering that there are cultural differences in the reactions of our loved ones. Dad is from Mexico, where patients and family members are often kept in the dark about their health conditions in an effort to “protect” them. Since Dad is reverting more and more to his native Spanish, and feels more comfortable dealing with people he has known a long time, some of our friends and family (who only see him a few times a year at most) haven’t even been able to see that something is wrong. This has unexpectedly become one of the more difficult parts of this journey. We get a lot of unsolicited and judgmental advice. We are learning how much and how little information we should share in order to protect ourselves emotionally. It’s a fine balance! At the same time, we are learning that sometimes unexpected friendships form or deepen as people step up with appropriate responses and offers to help.

• Meet him at his level. As a mother and a Montessori teacher, I have found that a lot of the skills I learned in my teacher training and applied in my parenting translate very well to helping my Dad. Montessori teaches profound respect for the child, and reminds us to be respectful of every human being—no matter what capabilities they have. Dad still wants to participate in family life and feel useful, and breaking tasks into steps and giving him clear and simple instructions allows him to do so. We are also reaching the stage where reminding Dad what he has forgotten is no longer helpful, so we are learning to live in the moment with him. When we are able to meet his ability level and be in the present moment with him, we are all happier.

• There is still a lot to be grateful for. This Thanksgiving will be one of the best ones ever. I know this because I know that Dad is still with us. He still knows who we are, and remembers his life even if he can’t remember his birthdate or how to figure the tip at a restaurant. I am so grateful that I live in the same neighborhood, that I can help my parents, and that my daughter has had many wonderful years with both my parents (I never lived in the same town as my grandparents). More than that, I am finding that Dad is more emotionally available to me than he ever was in my childhood. This has given us an opportunity to heal some wounds and forgive each other for our mutual hard-headedness. He has literally cried and apologized to me for things he said to me growing up. How many men are willing to apologize for anything?!?! It has been such a gift. My hope for you, dear reader, is that you have some things in your life that you can feel grateful for, no matter what stage of the disease your loved one is in. I know that as Dad progresses, this will be harder for me to do, but I will have this blog post to remind me to look for them. Thanks for letting me share my thoughts. Happy Thanksgiving!

 

To learn more about AGE’s resources for caregivers, please visit ageofcentraltx.org or call (512) 600-9286