"Jeff's List" draws upon my personal experience with Alzheimer's. Your's will be different, but I hope that you find some of my advice helpful. Here goes.
1. Don't delay. You are lucky to have an early diagnosis, which enables your loved one to plan for his care. Explore all potential needs and your options to address them as early as possible. Now would be a good time.
2. Tell your inner circle. Let your immediate family and closest friends know what is happening. If there are ongoing squabbles or strained relationships in the family, now is a time to set them aside. If you don't do this when your loved one is doing well, it will get much harder when he is not. You may begin hiding the truth from those that care for him, thereby isolating you both. This can have devasting consequences - especially for the caregiver.
3. Don't be embarrassed or ashamed. It is common to see people in public or posting on social media, with no hair, who are undergoing chemotherapy. We support them and cheer them on, there is no stigma surrounding cancer. People with Alzheimer's should be no different. They are heroes fighting an epic battle, which they can't win. Your loved one is a hero. Never lose sight of that.
4. Ask for help. At some point, you will need help. There will come a time when it will no longer be safe for your loved one to be alone, and the demands of 24/7 care are overwhelming. When it gets to that point, ask family, friends, members of your church for help. Create an email list or a closed Facebook group, and let your "team" know what you need. Here are some examples:
5. Join a caregiver support group. I have listed a few below, and you can find others online. I urge you to start participating in one right away. Your fellow group members are the real experts that you can rely on for advice and emotional support. Start building these relationships today.
6. Fundraise. I almost put this #1 on the list. It feels good to raise money to find a cure, and in the process, you'll meet the family you didn't know you had. Through our support of Alzheimer's Los Angeles, we forged lifelong friendships. These enduring relationships are a part of my Mom's legacy that we cherish.
7. Be a student. Try not to get frustrated as the disease progresses. Instead, look for ways to translate what your loved one is experiencing into ways to care for him better. Experiment! An example from caring for my Mom: we discovered that at certain times of the day she would get very agitated. We suspected that she was hungry, but she would tell us that she was not. We experimented with making her a small meal at those times, even though she said she didn't want one. The result? She always ate it and felt better and calmer after. Fair warning, these preferences will change over time, so never stop learning.
8. Socialize! Go out to dinner with friends. Throw dinner parties. Go to movies and concerts. Travel. Social interactions are your lifeline, but they usually suffer. See #2. Be bold and try to have fun. It will save your life.
9. Live a "brain-healthy" lifestyle. Increase the plant-based portion of your love one's diet. Encourage him to physically active. Help him to meditate or "unwind" every day. Seek advice from his doctor if he is not sleeping well.
I encourage you to focus primarily on items 1-5, and 8 on this list. These are the things I wish we had known, or that someone we trusted would have shared with us. Do the best you can, and don't blame yourself, or your loved one, when things don't go as planned.
Today marks the four year anniversary that the love of my life, mother, grandmother, and our family matriarch lost her battle with Alzheimer’s disease. She was a creative, loving, giving person, who touched many lives in so many ways. I could spend hours extolling her many virtues. Our entire family has struggled with the loss of this dynamic personality that we loved so much. The memories we share bring joy and laughter, and often times tears.
Several months passed, and we eventually decided to take our experiences with Alzheimer’s, and try to help other families, patients, and care givers dealing with this disease. The Memory Kit was the name we chose. Initially we created a book that would be used by care givers to better understand the needs of a person who could no longer speak for themselves. The last page of each book was titled, Caring for Me. It included lists of caring needs. Families and care givers we worked with felt this should be a separate care guide.
We followed their suggestions and Your Care Card was developed over several months. It is an App that can be downloaded from iTunes or Google Play for Android phones. It’s free, and currently being used by nearly three thousand families. It’s easy to use, just go to our home page www.yourcarecard.com.
Remembering Molly Ann Martin Gray, with love.
Physical objects can powerfully connect us to memories. As an example I give you...a toaster. This is no ordinary Sunbeam Thinline Self Lowering toaster (also known as the "Touch n Toast"). It's the one from my grandparents' farmhouse kitchen, that went with them after they sold the farm and moved into the house in Traer, that they took with them when they moved to the condo in Cedar Rapids, that we brought to the casa in the Hollywood Hills after they had both passed, that now resides at my brother's house in Woodland Hills. And, by all accounts, still makes a damn fine piece of toast. Made even better by adding two pats of Land O' Lakes Salted butter.
It's a very special object to me, that isn't worth much in material terms -- I found one on eBay for $33.87 which is honestly more than I thought, and yet, why not $34? -- but it connects me to my past in a way that feels good to me. Objects and treasures like these helped me cope with losing Mom to Alzheimer's when she had the disease and later after it took her from us. They brought back the best memories of her then, and they keep her with me now.
The stories that surround objects are fun and even therapeutic to share. My friend Shannon Uschold gets this and created https://www.generationstory.com, an app that lets you share the stories of the toasters in your life.
For many in caregiving situations, the holidays can be really tough. Adding to the difficulty are memories — both positive and negative ones. To make things worse, it's also the time when everyone else is cheerful, yet you still have to face the struggle.
For those who are no longer caregivers, it can be especially difficult to remedy the memories of the past with your present, whether from moving the loved one into a facility or in the event they’ve passed on. It's the uncomfortable part of being human, the "touchy-feely" mess that we try desperately to ignore.
It can be extremely stressful to be a working individual as well as a caregiver for a loved one. Not knowing how your loved one is doing while you're away at work can become a major distraction and may cause you to leave work early and/or take more days off. It is estimated that more than half of employed caregivers work full-time, and according to a survey from Gallup-Healthways conducted in 2011, "Caregivers working at least 15 hours per week indicated that this assistance significantly affected their work life."
Having to rearrange your work schedule and decrease your hours may feel inconsequential when it comes to helping your loved one, but it can have massive impacts on your well-being and future. Employed caregivers who rearrange their schedules can suffer loss of wages, Social Security benefits and health insurance, as well as retirement savings. Gallup-Healthways also reported that in 2011, caregiver absenteeism cost the U.S. economy "an estimated $25.2 billion in lost productivity." This situation is detrimental to both sides.
Many employed caregivers feel an obligation to check in with their loved ones and be present to have the most updated information on their loved one's condition. We created the Care Card for situations just like this. If you're at work and want to receive updates about your loved one from a caregiver at home, you can receive notifications without ever leaving your office. By connecting everyone who cares for your loved one with the Care Card, they can all input updates as they interact with him/her. Our goal is always to keep everyone on the same page, and if you can know how your loved one is doing without having to leave the office, productivity is likely to increase and you won't have to worry about losing any of your benefits down the road.
Tell me if this sounds familiar. You manage an aging parent's care. You help them with all of the things they need to get through their day or weekly life and spend a significant chunk of time doing everything. You've given up some opportunities in life, and tend to take on the lion's share when it comes to the patient's needs, even though you have siblings or other family members.
This is a very normal situation. And, regardless of how we might feel when things get stressful, it doesn't necessarily mean that your relatives don't care or are intentionally throwing you under the bus. Sometimes, it's a matter of personality. Other times, it's a matter of availability. Still yet, it can be a matter of mental health or just being completely overloaded at work.
Family is complicated. That might be the understatement of the century. But when you’re in a caregiving position for someone with an incurable condition, it becomes even more so. Memories can be complicated, too.
I remember the time my dad checked me out of school when I was in 4th grade — a complete surprise. Things were never perfect, and at times the relationship between us (the kids) and him could be rocky. But there were times also that his love and kindness were unparalleled.
This weekend my family gathered together in Los Angeles for the annual Walk4Alz fundraiser, and just before it began my sister pulled a little memento out of her pocket: Mom's Sunrise name tag. Without knowing her history you might guess that Molly had worked at Sunrise, but in fact she lived the last year of her life there as a memory care resident.
The sight of her name tag reminded me of her caregivers, and the great job they did personalizing her care. Even though Mom had a very difficult time with verbal communication, they noticed right away that she loved to help out. She would often help clean up after meals, or assist other residents with activities and crafts. The caregivers spotted a fellow caregiver in Mom so they decided to make her feel like a part of the staff, and had a real Sunrise name tag made for her. She really liked it. Throughout her life Mom was an incredibly productive person and Alzheimer's stole that from her late in life. You could that when she was helping out with her name tag on she felt useful, and connected to her true self.
We created the Care Card to help care providers understand the unique needs and preferences of their clients or residents when they first meet them, and as they evolve. There is a tab for tips on "How to calm me down" for those times when things aren't going so well. On my Mom's I would have put "Give me a task or a chore to do." The Sunrise team got to know her as a person and kicked it up a notch. They made her a part of the team!
Jeff Gray | Founder & CEO
The Memory Kit
According to psychologydictionary.org, a catastrophic reaction is a hostile, highly disorganized outburst by people living with dementia in response to a seemingly inconsequential matter. Many times, these outbursts are provoked by caregivers or loved ones simply because they are unaware of the trigger it may cause. However, we can lower the number of hostile reactions per day by explicitly stating what triggers the individual. In the "Things that Upset Me" section of Your Care Card, you, as a caregiver, can note the known origin of the disturbance to keep your loved one in a more positive mood throughout the day.
Read more about catastrophic reactions here.
Care card Blog
If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.