Living with Alzheimer’s is like having endless curve balls thrown your way upon a constantly-changing landscape. What worked yesterday may not work today. Caregivers need a quick place to go to find creative solutions to their problems. Find solutions on the go! – what worked for The Firek Family, plus [COMING SOON] what worked for other caregivers in the FSAlz Community. Share your experience!
PROBLEM: Dad has been forced into early retirement and is now struggling with all the newfound time on his hands. Due to diminished mental capacity, he can’t just hop on the computer or start up a new task, and he is frustrated.
SOLUTION: Coming to terms with the problem. My dad is trying to forgive himself and the current circumstances which no longer allow him to do things he used to be able to do. Him personally acknowledging his limitations is the first step in him accepting this new reality; voicing his frustrations is yet another step closer. Undoubtedly, his acceptance of his current conditions will vacillate and the struggle will be ongoing.
PROBLEM: I feel unable to help him.
SOLUTION: Listening. Giving the person with Alzheimer’s an opportunity to express their emotions and frustrations is gracious and kind and valuable. Even though listening might not offer a direct solution to the problem at hand, it gives the person with Alzheimer’s validation that they are important, that their life is worth living and talking about, and it reassures them that we are listening and will be their advocate in the coming days. Uncovering how they feel and why will be key in helping you make decisions in the future that are based on their wishes and attitudes about life and about death.
PROBLEM: I realize that while Dad is already depressed and dealing with his imminent demise, he has been forced to stare death in the face while watching one of his best friends die. I am trying to understand Mom and Dad’s mix of complex emotions at this difficult time.
Just ask. Instead of wondering and tiptoeing around the topic, I simply created a warm, safe environment in which my dad could say anything and then invited him to share his deepest thoughts. Importantly, the rules of this disclosure process are that there are no wrong answers and anything goes – total freedom for my dad to share without consequence.
Five Wishes. This universal palliative care list of five questions helped my dad contemplate and decide how he wanted the end of his life to go, plus it gave him and my mother an opportunity to make decisions together and forge a bond that would become our family’s guiding force as the stages of Alzheimer’s progressed. Behind closed doors with a doctor, they discussed such things as living at home vs. an assisted living community to the very open-ended question of What do you want your loved ones to know. These five questions opened the flood gates of free-flowing communication within our family – a process which has finally given my father some feeling of control, some peace of mind, and has gotten us all on the same page so that when decisions need to be made in the future, we can use Dad’s answers as our reality check. These are his Final Wishes. Our goal is to honor them.
Five Wishes: (click here for sample)
- Who you want to make health care decisions for you when you can’t make them.
- The kind of medical treatment you want or don’t want.
- How comfortable you want to be.
- How you want people to treat you.
- What you want your loved ones to know.
PROBLEM: Everyone is depressed and uninspired
Turn the crisis into an opportunity. After spending months as a useless sobbing wreck, I decided to empower myself. Based on the unique skill set I personally have, I decided to videotape our lives and put it to use to help others. Of course, simultaneously caregiving, coping AND videotaping/editing is overwhelming, but the important part is that it gives me something POSITIVE to FOCUS ON! Knowing that some good will ultimately arise from this ongoing tragedy helps me push through some of the bad days.
Create a meaningful project together. Recording my documentary means involving my father, and I remind him often that he is the STAR OF A MOVIE who is helping MILLIONS of other people! This meaningful reminder inspires him and gives him purpose and confidence! Brainstorm about something meaningful to your loved one that you could turn into a project together. Simply ask friends and relatives to share photos for a scrapbook you’re going to make about their life; or record oral history of your loved one before it’s too late; or plant a garden in their honor – allowing them to help you with it for as long as they can, including taking strolls through it together; or collect sheet music of their favorite songs and make a music book from which you can later play them their favorite music; or make a cookbook of their favorite recipes – from which you can make them their favorite comfort food when they’re down, plus pass it down through the generations… There are endless ways to celebrate their life by creating a meaningful project – with them or for them!
PROBLEM: Coping with an Alzheimer’s diagnosis
Openly communicate the news with others. There is a certain stigma that goes along with Alzheimer’s – people aren’t sure what to say or how to act around you… and so they unfortunately avoid you altogether in order to avoid uncomfortable situations. We have found that by openly sharing the diagnosis with others (family, colleagues, neighbors, country club members, mailman) and taking time to explain the disease, people are much more comfortable around us. It keeps the lines of communication open vs. the alternative of not knowing what to say and so therefore never saying anything at all.
Use humor to break the tension. Alzheimer’s is a very serious topic, but our family was determined not to allow it to make our life somber 24/7. Our family naturally uses humor as a coping mechanism anyway, and so we used humor as a tool to break the iced during stressful times, albeit expressing how helpless we felt, how sad we were, or how much this truly sucks. Making jokes about it doesn’t automatically mean you’re not taking the diagnosis or the situation seriously; it simply means you’re trying to swallow this large sour pill with a smile on your face—which can have contagious magical powers, replacing the frowns around you with smiles as well. Humor and laughing can benefit everyone—as long as they’re open to the possibility that laughing doesn’t equate insensitivity. In our family, we always welcome a good laugh through our tears in order to help numb the sting.
Turn the crisis into an opportunity. Our family decided to use our Alzheimer’s experience as a way to educate others about this harrowing disease, to use our fortunate family dynamics to demonstrate how love can help conquer fear and how there is power in numbers. My dad, my mom, my brothers, myself… we could have all locked ourselves in separate rooms (physically and/or proverbially) and claimed pure denial. But there is no power in that. We are a lucky family blessed with loving, functional relationships (for the most part-LOL). We cling to one another for support, for understanding, for sanity, for dear life. We use each other as a sounding board. No one goes through this process the same way or on the same timeline, and so there is a lot of give and take to be had if you’re open to it. We prefer to have death bring us closer together instead of letting it rip us apart.
PROBLEM: The system seems beyond our control! Mom and I are trying desperately to find a back up place for Dad to live, as we have a sneaking suspicion that his Assisted Living Community is about to tell us that he can no longer live there after his recent bouts with violence.
Plan ahead. Even though we aren’t sure yet if Dad will or won’t be welcomed back to his assisted living community, Mom and I are planning ahead. We always try to come up with at least two contingency plans because as we’ve learned often times your backup plan needs a backup plan!
Partner with Someone. My mom and I took the problem on together. As a team, we were able to call twice as many people, plus we individually toured assisted living homes to speed up the process, only bothering to call the other person if the place was worth seeing. Also, in the middle of an emotional crisis, you don’t always hear and retain all the information you gather so two heads are better than one. Plus, when I’m feeling beat or angry, she pulls me up – and vice versa. A buddy system is a beautiful thing!
Hire a Geriatric Care Manager. Also known as Care Advocate/Senior Care Expert/Care Consultant, I highly recommend this role for hire if you can afford it. We chose NOT to go this route and ended up regretting it terribly. Care Managers are designed to hold your hand throughout the illness and guide you, helping you plan ahead and handling crises as they arise. They are knowledgeable about which homes in your area are best suited for your situation and about other detailed minutia that is impossible for everyone to know. Visit http://www.caremanager.org/ to find an accredited NAPGCM professional in your geographic area.
PROBLEM: Violent Outbursts – Pushing and Shoving
SOLUTION: Change the scenery to divert their attention. When Dad began pushing and shoving at his assisted living home, it wasn’t clear why he was agitated. The staff successfully used the tactic of removing Dad from the community living room (where there were other people and a loud TV), placing him in the safe confines of the Director’s office where they kept company with him by talking to him softly, making him comfortable, and giving him one of his favorite simple pleasures – chocolate! Dad was able to focus on the chocolate, which gave him a distraction and great pleasure simultaneously.
PROBLEM: Trying to find a way to connect
SOLUTION: Pay attention for the little clues. Dad was very despondent and confused when I arrived. We interacted and connected some, as I used the technique of speaking softly and happily in his ear. Ultimately, I wanted to draw him outdoors today, as the sun was out and I knew he would love to feel it. As I physically led him slowly outside by the hand – with his eyes closed and feet shuffling – my cell phone rang… a piano riff ringtone! Dad instantly emulated the noise, “Daaa Na-Na-Na Nuh!” and shuffled a bit faster. Realizing he was connecting with the music, I grabbed my phone as quickly as I could and started playing an oldies song. Viola! He started coming back to me from the fog he was in! I danced and stomped my feet so that he could hear me dancing with him (since his eyes were closed). I gave him words of encouragement and praised his dancing. And, very importantly, I filled in the lyrics for him when he drifted, which gave us an amazing opportunity to reconnect and “build” something together… a new memory for me… a happy moment in time for him. I love to meet him where he is and enjoy the moment on his terms!
PROBLEM: No interest in drinking fluids
SOLUTION: Find ways to get them excited about drinking – or go into stealth mode. Dad isn’t a big fan of drinking water – never was – and so it’s up to us to put a glass of water in his hands throughout each day and encourage him to sip. Of course, using the excuse, “Here, why don’t you wash that chocolate down with this” always works! :) However, I personally have found that sips spread out over time are easier to sell him than drinking a full glass in one sitting. I have had success with different strategies… sometimes while dancing, I’ll hand the glass to him… he’ll sip… Ill take the glass away… and then I’ll slip it back into his hands a few minutes later, saying something encouraging like, “Mmmmm, this is amazing Daddy-O. Try this…” Always a social guy, he typically likes to participate in whatever you are doing. :)