Jun 132013
 

Christina and Giovanni It was a perfect summer evening.  The sun was just starting to go down and there wasn’t a cloud in the sky.  I was home from college on a visit to introduce my parents to my new boyfriend (my now husband).  We sat on our patio, enjoying our evening together.

My father, Giovanni, summoned me into the kitchen through the window overlooking the patio.  I excused myself, assuming he wanted some help in preparing the food and getting the table set for dinner.  While I was correct that my father needed some help in the kitchen, I was not prepared for the kind of help he was asking for.

My father, an Italian man and one of the best chefs I have ever known, was asking ME for help on how to cook his signature pasta dish that I had requested he make for this occasion.

I could see the sadness and sheer terror in his eyes that he was asking me for assistance on something he previously could do with his eyes closed.  Immediately, I sprang into action, telling him not to worry, assuring him that we all have days like this sometimes, and that it had been a long time since he had made the dish.  But deep down, I knew something was very wrong.  It wasn’t long after this occasion that my father was officially diagnosed with Alzheimer’s disease.

More than six years have passed since that summer night.  During that time, my father gradually forgot every pasta dish he ever made; he forgot the simple daily acts we take for granted; the disease robbed my father of knowing that I was his daughter — and finally, of his life.

Here is what my journey with my father taught me: Alzheimer’s changes things, but there is still a person inside.  Even after this disease progresses, there are ways to share meaningful moments.

A special recipe to share

Make a tax-deductable donation to The Alzheimer’s Association and receive a downloadable recipe card of Giovanni’s signature pasta dish as a thank you for your donation.

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One of my favorite memories of my father is of my wedding day.  It was toward the end of his illness, and he was having more bad days than good.  I wasn’t sure he would be able to attend. He was having trouble walking at that point. But he made it – and something amazing happened.  Not only did he walk – he lit up.  He was back to being an entertainer and a host and he loved every minute of it.  We danced to Sinatra’s “The Way You Look Tonight” and he looked so happy.  We both were.

As my father’s youngest and only child in the United States, I always tried to be strong for him, and support him in any way that I could. Our time together has inspired me and shaped the woman I’ve grown to be.  My father’s journey affected my career choice. I now work for the Alzheimer’s Association, providing education and guidance to other families trying to navigate this awful and often mysterious, challenging disease.

Now that my father has passed away, the greatest gift I can give him is doing my part to help end this disease for other families. I hope that my effort to help others, I honor my father, who was one of the most gentle, kind and caring people I have ever known.

Happy father’s day, Dad. I love you and miss you.

About the blog author:  Christina lives near Chicago with her husband, two dogs and a cat.  They are expecting their first child later this year.  She works at the Alzheimer’s Association helping other families dealing with dementia. 

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May 302013
 
lotus pose

Caregiving can be extremely rewarding, but all caregivers will eventually feel some degree of frustration, anger and guilt. These are all normal emotional responses to an incredibly emotional journey.

As a caregiver, you may feel frustrated and angry at your chaotic life, or your lack of control over the disease’s progression. Anger often evolves into guilt. You may feel like there isn’t a light at the end of the tunnel, and have the guilty thought, “how much longer can this go on?” But understand, feelings can’t be denied. They can however be changed to some degree by adjusting your perspective; for example, you may feel less frustrated with your loved one’s acting out if you can remind yourself that they are not doing it on purpose, it is part of the disease.

Feelings can also be softened by certain self-care strategies. Journaling your feelings and daily relaxation techniques can be helpful. Identifying guilt triggers can also help. Does missing a child’s activity make you angry, with guilt setting in as you are later abrupt with your loved one? Maybe you need to find a Plan B so you can balance caregiving with your other roles. Respite is a great strategy to reduce guilt.

Are you feeling guilty about thoughts of sending Mom to a care home because you can no longer do it all? The thing you need to remember is that there is a difference between caring and doing. You may love. You may care. But at some point, sooner or later, you won’t be able to do. And you need to figure out a way to live with that. Those “unable to do moments” may come in increments; today you may need a respite day and decided to send your spouse to day-care for the day. A month from now, you may need to incorporate day-care twice a week in your caregiving calendar. All of that’s OK. The important thing is that you try and identify those points, those limitations you can’t get beyond, prior to actually being confronted by them.

So how do you do that? First, get support. Join a support group, if possible focused on the disease stage of your loved one. Participate in the AlzConnected online support caregiver guiltforum and read everything you can. Share your feelings and gain others’ coping strategies. It will help. Another tip, live in the day; focus on any positives from that single day. Look for a sign of your loved one’s remaining personality – perhaps a smile in hearing music – and connect with that. Prepare for, but don’t dwell on the future. Don’t just grieve for all the losses, but reflect on the good memories, maybe by sharing a photo album with your loved one and others. Let go of unrealistic expectations. “I should never take time off to enjoy a movie with friends when it upsets Dad so much,” is just not realistic in the long haul.

Bottom line is to listen to your feelings and know they are normal. Focus on the helpful and positive differences you have made in your loved one’s life, not on the things you didn’t do. And remember, as the disease progresses and you find yourself no longer able to have your loved one at home, that isn’t giving up. It is just a different way of caring.

About the  author: Stefanie is a family care specialist who blogs regularly for Alzheimer’s Association, Northern California and Northern Nevada Chapter. To read more blog posts by Stefanie, click here.

This post originally appeared on www.alzheimersblog.org.

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May 172013
 

Tania and her mother This past holiday season, I had the pleasure of appearing as Mrs. Cratchit in “A Christmas Carol” at The Goodman Theatre.

On several occasions I thought how much my mother would have loved to see me in it. Before I met my husband, my mother was my biggest fan.

When I say my mother would have loved to see the show, I mean the mother who raised me and was always there for me in my young adult life — the mother I knew up until 2008.

That mother saw me every night when I had the lead in my high school production of “Mame.” The box office people knew her by name and on nights when tickets sold out, they let her stand in the back and watch.

Mom always said, “Tania, you have such presence on stage.”

Whether I was performing on Broadway or a storefront theater, my mother was in attendance and always sang my praises.

I am describing my mother before Alzheimer’s.

In 2008 she started slipping away, calling me less and less, repeating herself more and more, forgetting birthdays and asking strange questions like, “What day is Thanksgiving, Tania?” From then on, a different mother emerged.

She was still loving but unable to be there for me because her memory was fading. For instance, she couldn’t remember that I was pregnant with my second child and wasn’t at the delivery like she was with my oldest. She had no idea what was happening in the world. She never asked about my children or husband.  She didn’t know where I lived. She had no idea I was a professional actress.

Mom was a doctor who never left the house without looking her best. She always wore dresses.  She went to the hairdresser every week for a wash and set. She was private to a fault.

In the nursing home she wore pants, let the caregivers braid her hair in cornrows, and shared a room with two other patients.

I suspect that she’d be mortified by the woman she had become, and I had to make peace with that. I didn’t love her any less when she lived in the nursing home. She was her purest self. The essence of my mother — sweet, good, funny, kind and loving — remained.

Photo by  Liz Lauren: A Christmas Carol

Photo by Liz Lauren: “A Christmas Carol”

It stings that she didn’t see me play Mrs. Cratchit; and it pains me that—even if she was still alive—she couldn’t have attended.  She wouldn’t have been comfortable leaving the nursing home, getting in a car or sitting in a dark theatre surrounded by people. I don’t think she would have even understood it was me on the stage.

Alzheimer’s splits a person in two; their life divides into who they were before and who they are afterwards.

I grieve my Mom twice, mourning two spirits but lucky for having known both.

About the Blog Author:
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

Learn More:

Grief & Loss as Alzheimer’s Progresses
Caregiver Center
Support Groups
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Apr 172013
 
The Longest Day: Fighting Alzheimer's

“This Is Our Life” is the final line of a production entitled “Resurrection” that my husband Steve and I have been a part of with our church singing group for the past 17 years. During the last song, everyone in the congregation holds a candle that is lit from a single candle that stands alone on the altar. As each candle is lit, we watch the church go from dark to light.

The first year we performed, a small group of us got together and pitched in—sewing costumes, rehearsing and doing whatever was necessary to make it happen.  Almost two decades later, there are more than 100 people in the  cast. The experience has taught us that when people come together, the illumination is very bright.

This summer, on June 21, my husband, our family, our friends, and community will stay in motion from sunrise to sunset as a way of showing our commitment to a day when Alzheimer’s is no more.  It’s part of The Longest Day, an all-day event to raise awareness and funds for Alzheimer’s care, support and research. We’ve named our team “This Is Our Life” because we believe—similar to watching the church go from dark to light during the performance —if we all work together, we can illuminate the darkness of Alzheimer’s.  The more people willing to tend to the light, to spread awareness about Alzheimer’s and to get involved, the closer we come to a time when Alzheimer’s doesn’t exist.

Alzheimer’s is no stranger to our family.  Last year, right before his 59th birthday, my husband Steve was diagnosed with early-stage, younger-onset Alzheimer’s.  Five years earlier, his mother was diagnosed with Alzheimer’s.

In a way, Steve’s diagnosis is a gift.  Because we have this knowledge, we don’t waste a minute.  We know this time is sacred.  Steve’s quality of life is good—and we are living every day.

Time to Make a Difference

After  receiving a diagnosis of Alzheimer’s, there is so much you feel like you can’t do. There currently aren’t treatments to stop this horrible disease. There is no cure. But Alzheimer's Charity Event: The Longest Daybeing part of The Longest Day is something we can do.  It is empowering to have this tangible event where we can take action.  And it’s action that really matters.The nearly $12,000 we raised last year helps support Alzheimer’s programs and care, and furthers the Alzheimer’s research going on throughout the world to try to find better treatment and a cure.

For us, the event is also about community. At the end of The Longest Day last year, we felt better about the future than we did at the beginning of that day. Every donation came with a note of support and love.  At sunset, 30 people gathered at our house for a celebration of all we accomplished. This year, we hope to have 50—or even 100.  When you bring people together, for important causes, unbelievable mountains can be moved—and our amazing community has shown us that they are here with us on this journey, that IS Our Life, until a day when Alzheimer’s is finished….or is just a memory!

Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. 

Dec 232011
 

There are some topics on our message boards that pop up to surprise us, while others follow a pretty predictable cycle.

Every year, around the holidays, calls to our helpline and posts on our message boards indicate many family members notice the signs and symptoms of Alzheimer’s disease or advancing dementia. This is especially true of out-of-town family members who don’t see the person with dementia every day; they compare behaviors to previous times — and the difference may be startling.

The out-of-town family member may react by offering uninvited advice and opinions to family members who are dealing with dementia on a daily basis. And that’s when we see posts like this one:

“How dare she fly in here from thousands of miles away and say what our mother needs. I’m the one who does everything every day for her. Who does she think she is?!”

I think that it’s very natural to resent the advice of someone who is less aware of the daily needs of the person with Alzheimer’s and how much work it can take to meet those needs as the disease advances. But what’s harder to do is to accept that these family members are offering caregivers something very valuable – something that they cannot provide for themselves. They are offering perspective.

When you’re very close to something and looking at it, you see all the details. You can see the lines and veins in a leaf, for example, only when you’re close to it. You can see the effect of a slight breeze as it meets the leaf and moves it, even slightly. But what you can’t see, is the size of that leaf with respect to the whole tree — or a whole forest. For that perspective, you need some distance. And distance is something that daily caregiving just doesn’t allow.

So when the family gets together and someone offers opinions from a more distant viewpoint, it can help to try to see it as information that reflects a different perspective — one that can only be seen clearly when the viewer isn’t too close to the details. And sometimes, that view can even encourage caregivers to take a step back and incorporate additional resources they may not have considered before.

For the holidays,  a little perspective can be a wonderful gift.

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Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

Oct 212011
 
9798839_woman

As someone who works for the Alzheimer’s Association with support programs for caregivers, I decided to do a little research today on our Message Boards, where Alzheimer’s caregivers are able to communicate with each other about their concerns and get information and support from peers. For those who have been providing care to someone with Alzheimer’s disease for some time, the result will come as no surprise, but for those who are newer to caregiving, you can turn up a result that may make you curious.

If you go onto our message boards and search the Caregivers Forum with key words, you can pull about 30,000 posts containing the word “Alzheimer’s”, 14,000 that include the word “brain” and 10,000 that contain the word “neurologist.” No big surprises there, but here is the one that may surprise the newer caregivers: If you type in “UTI”, you will pull over 8,000 posts that are on 410 pages of our message boards.

UTIs, or urinary tract infections, can cause changes in someone with Alzheimer’s disease that you might never expect. The impact can be really profound. Some of the titles of the message board threads in which UTIs are mentioned tell the story well, including “Sudden decline,” “Yelling out and undressing in public” and “Manic episodes… WOW!”

Here is a sampling of some of the posts on the topic:

  • “For me, falling and hallucinations always mean check for UTI”
  • “Our compromised elders, especially females often develop, “silent” urinary tract infections. These UTIs are called “silent” because they usually have no symptoms of pain, no burning, no odor, no frequency, etc. BUT there will often be profound changes in behaviors.”
  • “UTI, UTI, UTI, UTI, UTI! When my mother has a UTI she sleeps all day. We can’t get her out of bed, she will also stop eating. Have the doctor check her for a UTI. “
  • “UTI and dehydration!!!!! I’ve never been so happy to get that kind of diagnosis. They have her on IV antibiotics. The interesting thing was that her urine was clear and they were pretty sure she didn’t have a UTI. Luckily the testing came back positive.”
  • “With my aunt, I could always diagnose the UTI because she started acting crazier than her current norm. (When she picked up a glass of water and threw the water over her shoulder, I called it right away —UTI.)”

When UTIs are wreaking havoc with the family members of our Alzheimer’s caregivers, we sometimes see threads in which the caregivers are in a state of panic about the symptoms. And for good reason — the symptoms are powerful and can actually mimic the end of life for some people. These caregivers are used to a slow disease progression, and the UTI with no overt symptoms can make everyone involved act in ways that reflect their feeling that this situation is a life-threatening emergency. The good news is that, while the UTI does need to be treated right away, this is for the comfort of the patient and the family. UTIs do not cause permanent damage, and they respond quickly and successfully to treatment. And best of all, once the infection clears, the person returns back to their condition prior to the UTI.

That’s when the message board posts show caregivers breathing a deep sigh of relief and thanking their peers in the online community for their caring support — and for tipping them off to one of the oddest but most treatable components of Alzheimer’s disease.

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Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

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