"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.
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.
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.
When a home care company uses the Care Card, they have the opportunity to receive more information about their client from day one. This ensures a higher quality of care that one may not find elsewhere. Having a home care company that truly knows your loved one not only puts families more at ease but also increases business due to higher rates of satisfaction and more referrals.
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.
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.
The number of people impacted by Alzheimer's and dementia is sobering. On the front lines, caring for the 5 million people with the disease, are an estimated 15 million unpaid caregivers - the majority of them spouses or children. These people face incredible challenges physically, emotionally, and financially. Did you know that 59% of caregivers report being on call 24/7 for the last year of their loved one's life?
Most caregivers I know eventually reach a point where they feel completely helpless and hopeless. They exist day to day, just surviving.
It can feel hard to help a caregiver. They often don't ask for help, especially from friends, but they need your support. Here are a few things you can do that will makes a difference:
Need more ideas? Click here for a list of other suggestions, but not matter what, get off the sidelines and find a way to help.
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If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.