Tips for caring for a parent who has Alzheimer’s disease or Dementia
According to WebMD, there are around 10 million people in the US who have chosen to take care of a loved one with Alzheimer’s. It’s a very challenging job…but, it’s even more challenging as many of these people are also raising kids and/or may be working at the same time.
Many find it very difficult to switch roles between parenting their own kids and also parenting their parent. It’s a big responsibility, and it can take a toll on your time, emotions, patience and health. It can also take a toll on your marriage.
The good news is that there are steps you can take to make things easier. By learning more about Alzheimer’s and planning around it, it will help you cope and make things much more manageable.
Related articles:
- 25 Organizing tips when you have a parent with Alzheimer’s or Dementia
- How to take care of yourself when your parent needs home care
7 Things to accept about caregiving for a loved one with Alzheimer’s or Dementia.
1. This is a long journey, so prepare yourself. Your parent may live for many years. The life expectancy will depend on the age of the diagnosis as well as their overall health. Many with Alzheimer’s live 8 to 10 or more years. This is a long-term and time consuming commitment. So prepare for that.
2. Over time, the demands of caregiving will increase and become more intense. This is a progressive and degenerative disease, and over time, your loved one will need more and more help. In the advanced stages, this can literally become a full time job, often taking 40+ hours/week. Do not be afraid to ask for more help, especially as care becomes more intense.
3. Caregiving will most likely affect your job. According to a new University of Michigan survey on Healthy Aging, around half of Alzheimer’s/Dementia caregivers work full time or part time. And, 2/3 of them report that caregiving had a significant impact on their career.
Knowing this can be helpful as you mentally prepare yourself. It may also impact how you’d like to handle your career (e.g. Do you have the option to work at home some days? Do you want to reduce your hours? Do you want to try to find a job closer to home so you have a shorter commute?)
4. Taking care of a parent with Alzheimer’s will affect your family. This isn’t necessarily a bad thing, and you can/should rely on other family members to help out. But, if you’re hoping to shield your kids from you parent’s disease, you may be fighting a losing battle. Kids are smart and observant. You are better off being upfront with them so that they understand the situation.
And, importantly, there will be ways to get your children involved so that it’s a win-win for everyone. Kids can be a godsend to grandparents and can help keep young at heart. At the same time, this interaction will give you a bit more time to take care of some of your responsibilities.
5. Caregiving will impact your finances. There is just no way around this. Extra costs may include costs for hiring additional home care assistance or paying for assisted living or it may include indirect costs as the primary caregiver may go on leave from a job or work reduced hours. Each situation is different and you have to see which option is best for you. There is no right or wrong way here.
6. You can’t do this alone. Don’t try to be a super hero. Just recognize that someone who has dementia or Alzheimer’s is too much for one person, especially if you have other responsibilities such as raising kids or a full time job (or both). You will need support from your spouse, siblings, doctors, neighbors and local organizations. Trying to play super hero just isn’t possible, and it can really impact your health…and you don’t want that to happen as that is bad for you and your loved one. So pace yourself, and proactively seek out supplemental help.
7. You will need to learn some new skills when caring for a loved one with Alzheimer’s or dementia. None of us are born with these skills and caregiving for someone with dementia takes patience, and it isn’t always intuitive. In fact, sometimes, the logical thing to do is the wrong thing.
So, some of the best advice we can give is to learn everything you can about the disease. Read articles online, especially sites that specialize in Alzheimer’s (e.g. Alzheimer’s Association), consult healthcare and homecare professionals, doctors, counselors and support groups/friends that may be going through something similar. Do not try to do this on your own. Learning from others will help you in many ways including finding better solutions and coping better.
It’s important to take time for yourself while caring for a parent with Alzheimer’s
Taking care of a loved one with dementia or Alzheimer’s can be very time consuming. Caregivers often say they have little personal time at all. It often interferes with everyday tasks as well as a time to take care of themselves. As a result, many put their own health care on the back burner.
Part of this is because they feel they don’t have time to go to the doctor, and part of this is because they are exercising less, not getting enough sleep and often not eating as well. Believe it or not, this is probably one of the most common mistakes caregivers make.
It is super important that you stay healthy and get enough rest, as well as personal time. If you get sick, it’s a double whammy as it both impacts you and your loved one. If you are well rested, and less stressed, you will be able to take care of your loved one better.
So, do what you can to enroll help from others, so that you stay sane. This article on How to take care of yourself when caring for your aging parent should really help.
Even if it means just taking the afternoon off once in a while will help. Ask a trusted friend or relative to help out. It will do wonders for you mind and health. And, remember that asking for health is not a sign of weakness; rather, it’s a sign of strength.
Leverage local and online resources
In addition to friends, family and neighbors, seek out local resources in the community and online. Most communities have support groups and even caregiving classes. And many areas have adult day care centers where people with dementia can go for supervised activities. These can be fun for your loved one and allow you some time off, even if it’s just to go shopping.
These centers can be a wealth of information, and they can connect you to other valuable resources (e.g. transportation services for your loved one, places for home deliveries or other conveniences, etc.). You may also end up making some new friends there as you meet other adults with shared experiences.
It’s often easier that you seek out and leverage these centers and resources early on (i.e. right after the diagnosis). This will make life easier before the caregiving becomes too intense. And, you’ll know where to turn when you do need help, even if you don’t need it yet.
And, the Alzheimer’s Association has a 24-hour “helpline” and information on a range of resources for caregivers on its website
15 Strategies for Communicating and coping with someone who has Dementia or Alzheimer’s Disease
Communication with a loved one who has dementia or Alzheimer’s can be challenging, and it gets more challenging over time. These are biological brain disorders, and they are progressive, meaning that they get worse over time. It makes it more difficult for them to remember things, and it more difficult to think clearly and communicate with others.
Additionally, as the disease progresses, it can cause mood swings, and it can even change a person’s personality and behavior. When this happens, you need to remember that it is the disease causing this…it is NOT you.
Caring for someone with Alzheimer’s or Dementia is often counter-intuitive. What I mean by that is that often the right thing to do is exactly the opposite of what it seems. This is because your loved one’s brain is not operating the same as it used to and they have lost many of their logic skills. So here are a several tips to help you cope.
Recognize that you can not expect your parent to change or adapt much. BUT, you can adapt your communication skills. And, by doing so, this will make caregiving easier and less stressful. And, it will improve your relationship with your loved one.
We’ve put together 15 tips to help make communication easier when you have a parent or loved one with Dementia.
1. Set a positive tone. Speak to your loved one in a pleasant and respectful manner. Avoid condescending tones and language. Remember that body language and attitude often communicate more than the words themselves. Leverage positive facial expressions (e.g. smile often), use an upbeat tone of voice and use gentle and positive physical touch to express yourself and show them that you love them.
2. Make sure your loved one is paying attention to you when you are speaking to them. Minimize distractions, especially noise, when you are talking to them. Turn off the TV or move to quieter surroundings. If necessary, shut the door and close the curtains. Make sure the person is paying attention to you before you start speaking. Address the person by name and maintain eye contact. If she’s seated, sit next to her or kneel down so that it’s easier for her to look into your eyes. Sometimes, when we are in a rush, we forget this.
3. State the message clearly and simply. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice or using angry tone. If you need to speak loudly (especially if the person is hard of hearing), be careful not to raise your tone; instead pitch your voice lower.
Whenever possible, use the names of people rather than pronouns (e.g. he, she, they) as those are more vague. Try to avoid abbreviations or acronyms. Do whatever you can to make things clear.
If the person doesn’t understand you the first time, use the same wording and repeat your message or question. Sometimes, they just need time to process the information or didn’t understand all of the words. If the person still doesn’t understand you, then wait a few minutes and rephrase the questions.
4. Ask simple questions. Ask questions that are easy to answer. Often, yes/no answers work best, and try to avoid questions with multiple choices. Just ask one question at a time. When you can, use visual prompts so it’s even easier.
5. Be patient. Be patient while waiting for your loved one’s response. If the person is struggling it’s okay to suggest words, but give them a chance first.
6. Break down activities into simple series of steps. This will make thing much more manageable. Again, use visual cues to help and assist when needed.
7. Avoid arguing; instead, distract and redirect. Try to avoid letting things escalate. Avoid trying to convince them that they’re wrong. This will usually just make things worse. Instead, if your loved one becomes upset, try changing the subject, or look to change the environment. Sometimes, going for a walk or another similar activity will help, and you can move on to a different topic.
It’s super important that you connect with your loved one and show them you care, rather than express anger. For example, you might say, “I can see you’re feeling down – I’m sorry you’re upset. Let’s go get something to eat (or some other fun and suitable activity).
8. Keep your sense of humor, and keep things light. Whenever possible, use humor. People with Dementia still love to laugh and retain many of their social skills. Laughter is often the best medicine.
9. Reminisce about the good old days. Most people with dementia still retain their longer term memories, even if they can’t remember what happened yesterday or an hour ago. Ask about and discuss their past and their childhood. They will often remember things well and it will usually improve their spirits and help them smile.
10. Using logic and reason often won’t work. You have to remember that the person with dementia often doesn’t have a logical brain any longer and they often have poor judgment skills. Instead, rather than explaining thing, cut right to the chase of what you want them to do. Use simple and straight forward language.
11. You cannot be a perfect caregiver. There is no such thing and you will need help in the process. At times, you will get frustrated and impatient. And, you will get emotional at times. This is perfectly normal. Learn how to forgive yourself and your loved one. It is essential to your health and sanity.
12. Asking your parent with dementia to remember to do something won’t work. They will rarely remember. Of if they do remember, as the disease progresses, they will often forget. Instead, look for solutions that will remind them or cue them to do things. Often making changes to the environment will help with this and will be much more effective vs just discussing the issue. In the early stages of Dementia, reminder notes will often work. Check out this article (25 Organizing tips when you have a parent with Alzheimer’s or Dementia) for some simple tips to help with this.
13. Therapeutic lying can be helpful and reduce stress for your loved one. I know that this may sound counter-intuitive, but hear me out.When someone has Alzheimer’s or Dementia, they often forget important things (e.g. where they live or that their parent is deceased). Reminding them about their loss, or arguing with them about where they really live just makes things worse, as they relive the loss and grief.
Instead, try to redirect the conversation and ask them to tell you about their parent or their house. This will help distract them and calm them down (while arguing will just escalate things). Keeping someone calm is often more important than making sure they know the truth and creating an argument or causing depression. Remember, your goal is to take care of the person, including their mental state. Calmness is much better for their health than truthfulness.
14. You can’t do it all…don’t try to be a super hero. First, if you try to do it all, you will fail. You need to pace yourself, and you need to remember that you goal is to help your loved one, and that does not mean that you need to do it all. If you have a friend or relative who offers to help, your answer should always be “YES.” In fact, you should have a list of tasks people can help with, so as soon as someone volunteers, you will make it easy for them and easy for you to give them a task. It could be as simple as staying with your loved one for an hour or two while you run an errand, or picking up a prescription or buying groceries. At some point, you may find that getting some homecare will help you and supplement what you’re capable of handling. Many people don’t realize that you can gradually start getting home care assistance with as little as just a few hours a week.
15. It’s usually better to tell, rather than ask. Again, I know this may sound counter-intuitive. But, when you ask questions such as “What would you like for dinner?” it may be difficult for the person to come up with an answer, or even find the right words. Same thing goes with, “What would you like to wear.” It will be a more comfortable situation if you either tell your loved one what to wear, or pick out 2 choices and ask them if they would prefer the yellow shirt or blue shirt (and point to each). Visualization really helps. And, if the person needs to make a choice, it’s much easier for them if there are only 2 choices.
Conclusion:
Taking care of a loved one who has Alzheimer’s or Dementia can be time consuming and challenging. Don’t be afraid to reach out to friends and family for some extra help. And, if you are looking for some supplemental in-home care, we can help.
You can learn more about how we help our clients with in home care services. There is a breadth of options. If you’d like to continue this conversation, feel free to reach out to us at (212) 307-7107.
Other useful articles:
- 25 Organizing tips when you have a parent with Alzheimer’s or Dementia
- How to take care of yourself when your parent needs home care
- Top Tips for preventing falls among seniors (and why it’s so important)
- 13 Tips for Long Term Brain Health
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