"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.
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.
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.
In the U.S. there are over 15 million family members caring for loved ones with Alzheimer's or dementia. They are often financially, emotionally and physically stressed to the breaking point, and receive little or no support from other family members or friends. I recently met with Susan Galeas, former CEO of Alzheimer's Greater Los Angeles and asked her to list the top three needs that might be on a caregiver's wishlist. Her response was sobering.
If you know someone one is a caregiver you should assume they could use your support, but probably won't ask for it. Take the initiative and offer to help, and don't take no for an answer.
I would guesstimate that it was around 7 years from the time we saw clear signs of my mom's dementia until the disease took her life. I realize that if we'd had a seven-year hourglass, we would have mom "with us" until the top was about half empty. Three plus years, or so, to make plans and live life differently in ways that would have had a profound effect on the quality of life for both mom and dad. But like so many families, we spent those early years caught up in a web of fear, stigma, guilt and denial. By the time we got mom diagnosed her disease was so far along that we spent the time from her diagnosis to her death reacting and responding to one bad situation after another. We never caught a break. Looking back on the odyssey Alzheimer's put us through, I often wonder, what if...
What if our primary care physician was as concerned about the early symptoms of Alzheimer's and dementia as other diseases? Today with even a modest uptick in your cholesterol, your doctor will probably recommend you start taking a statin, and suggest heart healthy lifestyle changes. Yet mom's primary care physician never recommended she see a neurologist or seek other specialized care, even when her symptoms had progressed into the middle stages. I have learned from talking to hundred of other families that this is all too common, and it needs to change. Early diagnosis effects not only the course of care for your loved one, it opens up resources that will help the entire family.
What if, armed with an early diagnosis, we could have had a discussion with a case worker who was willing to be painfully but compassionately honest with us about the progression of the disease and the likelihood that mom would need to move into memory care; that it might become impossible for us to care for mom at home. I wonder how mom and dad might have planned differently. For instance, they might have decided to sell the house years earlier and move into assisted living, in a place that they chose together, with lot's of care options in place and access to memory care if needed. I regret that mom felt so scared and abandoned when we moved her to memory care, and I wish that she'd been able to have a voice in the plan for her own care.
What if we lived in a culture that viewed the disease differently, to the extent that we would have let our closest family and friends know about mom's condition years earlier? This item on my "what if list" would have made huge difference for my dad's physical and mental health. Being a primary family caregiver is the most stressful job imaginable, and most go it alone. Isolation is the norm, and can be accompanied by severe depression, illness, injury and even death. Our nearest and dearest would have been there for us if we had told them. Visits, phone call, emails, caregiving breaks for dad, errands run, dinners shared - all critical lifelines that would have been game changers for us.
What if I had been a braver, wiser and better son? What if I, with my sister and brother, had risked some tough confrontations with mom and dad, and insisted that they get mom diagnosed. It would not have been easy, might have been downright ugly, but so many things would have been better if we had. This one haunts me of course, but I give myself some grace because we all did the very best we could with the information available to us at the time. But it also drives me, every day, to increase awareness and open dialogue about the disease, and to build a product that can help everyone who will one day walk in our shoes.
And finally, what if this little blog post finds it's way to someone who is where we were years ago, and they are inspired to get their loved one diagnosed, and seek out resources, early in the game? I hope that it does, and that it makes a difference.
This weekend we polled primary caregivers and asked them what one thing would have the greatest impact on their quality of life. Not surprisingly, the number one item on our caregivers' wish lists was increased financial resources -- by a factor of more than two to one over any other choice. "More money" was chosen by 33% of respondents, while 15% identified more sleep, more help from family, and assistance with chores as their number one wish list pick.
Our small survey underscores the duel stresses on families dealing with Alzheimer's, who must manage the devastating effects of the disease while at the same time often wondering how in the world to pay bills that will only increase over time. As we go through the 2016 primaries and general election, I hope that a candidate emerges who will address the catastrophic financial impact this disease has on families and communities alike.
It sneaks up on you. In my case it started because I didn’t want my wife to be embarrassed. I was protecting her. When she could no longer respond to her emails I would type her reply, and she would click “send”. I would cover for her on phone calls from family and friends, and I started signing birthday and holiday cards for her (one dear friend told me later that she noticed this and knew something must be wrong).
Molly was an incredible communicator – she called, wrote, emailed every day of her life. As the disease took this lifelong passion away from her she became increasingly frustrated, and started to get angry when I was on the phone or at my computer answering emails. It got to the point where I had to close my business, and quit communicating with friends.
When she couldn’t be left alone I quit meeting friends for lunch or a coffee break. One day I realized I was very much alone. Isolated! My approach was absolutely the wrong thing to do. Informing family and friends early would have been much better for both of us. We would have had much needed support and understanding. But I didn’t do it that way and I ended up in a very bad place. I needed to let my extended family and friends in, but didn’t know how.
What did I do? I’ll tell you in my up next blog.
I created this graphic to illustrate what all too often happens to primary caregivers as their loved one's disease progresses. As the stresses increase, your social connections drop off, to the point where you are almost completely isolated. With no support system to help you cope, the stresses start to take their toll, both physically and emotionally. Taking steps to maintain connections is vital to your health, and your ability to care for the one you love. Have you experienced this, or are you going through it now? What are you doing to keep yourself healthy?
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