When a parent is diagnosed with Alzheimer’s disease, families must make difficult decisions, including how to finance their long-term care. In many cases, selling their home becomes necessary to afford assisted living or memory care. However, if the parent is no longer legally capable of managing their affairs, selling the home becomes a complicated legal process.
Resources for Families
Find essential information and support for families navigating the challenges of caregiving, senior living, and long-term care. Here, you’ll find expert advice, practical tips, and emotional guidance tailored to help families make informed decisions and strengthen their caregiving journey. From understanding dementia care to exploring assisted living options, this category provides the tools and insights needed to support your loved ones with compassion and confidence.
When someone has received a terminal diagnosis, it’s a sensitive and traumatic time for them. Our words and actions at this point carry great weight. While it would be nice to believe that there’s no wrong thing to say and it’s the thought that counts, those close to the dying can make the experience easier or harder for them depending on what they say.
If your loved one has recently received the bad news, look to them for clues about what to say and do. Don’t be surprised if they in fact don’t want to talk at all. People facing their own passing are often relieved to not have others say anything – though they are also glad to know that they can reach out if they choose to do so. Do your best to respect what they want, but find ways to make it clear that you’re willing to offer a listening ear when they need it. Rather than fretting about what to say and whether it’s the “right thing,” put your energy into listening to and observing your loved one.
Whatever you do, avoid grand platitudes about fate or God’s will. These won’t make the person feel better, and may even make them feel that they are at fault for their illness in some way. Don’t tell your loved one that they’ll be OK – both you and they know that this isn’t really true. Don’t try to praise them by telling them how strong they are – at this time they may not feel very strong. Instead, they need to be allowed to acknowledge their fears.
Find ways to emphasize that you love them and that you’re there to help them in the way they need. Do your best to make this time pleasant and comfortable for them. This is one exception to the advice to let your loved one guide you – as far as comfort goes you should take the lead. This is the time for random acts of kindness like making them breakfast or doing their laundry for them. They may be too preoccupied to ask for help with these everyday tasks. Make sure that you follow through on any offers you make.
What gift do you give someone who doesn’t have many days left in the physical world? The gift of your time. Even sitting quietly with your loved one can be valuable to them. It sends the message that you’re there for them and that you’re willing to support them in their struggles.
You expect to have to care for your own parents in their old age, but often times we find ourselves caring for our in-laws too. For many this isn’t a problem, as they’re your spouse’s parents and part of your family. But sometimes, this situation presents issues when we have conflicts with our in-laws. It’s also not unheard of for someone to be caring for their former spouse’s parents, even when they’re no longer married to that person. Then things become a little more complicated.
Though gender roles are changing in contemporary life, it’s often women who find themselves in this situation. Sometimes their partner is helpful and supportive, but too often this isn’t the case.
Men aren’t used to taking on nurturing roles like this and tending to someone physically. They may manage their parents’ finances or help with more manly tasks like mowing the lawn if his parents still live in their own home. And of course he calls the shots for the big decisions. But the women in his life end up taking on the responsibility for tasks like preparing meals and bathing – and this role is not always welcome on the part of the woman.
If you find yourself in this situation, try appealing to your spouse’s desire to be a good caretaker. Once their parents have passed away, many children regret not doing more for them while they were still alive. Remind him that he’ll want to be proud of what he’s done for them. You’ll also want to remind him that doing so-called “feminine” tasks doesn’t make him less of a man – he’s getting hung up on stereotypes. If you work, you can also make it clear that you have just as much of a right to spend time on your career as he does. You have your other obligations too.
In the end, you need to decide how much care you’re willing to take on, and then leave it to your spouse to handle things from there. Set strong, clear boundaries: ultimately his parents are his responsibility. Of course, if you’re married, you’ll need to take the health of your relationship into account with any decision you make. However, if you’re divorced, you have no obligation, though some women feel they should care for their former in-laws because they are, after all, their children’s grandparents. But the key point to remember is that you are in charge of your contribution.
Through our communication with others and with ourselves, we create reality. Does that sound a little new age to you? Think about it. Everyone has a friend whose negative attitude makes them difficult to be around because you in turn start to feel more pessimistic. Or, on the other end of the scale, there are enthusiastic people who leave us feeling more energized. It’s a basic fact that the people around us influence what we think and feel. And this is true not just for our friends and family, but for ourselves as well. What we think and say to ourselves can change our lives.
Examine your own thoughts about caring for your loved one. If you say to yourself, “This is a hard situation” you’ll experience it as being unpleasant. Try telling yourself, “This situation is a challenge” instead. Can you see how that might change how you look at things a little? Challenge implies that this is something you can overcome, and that will make you stronger as you deal with it. Watch how you discuss the events in your life, both what you tell others and what you tell yourself. Our words not only describe our feelings, but also create what we feel.
Here are a few other tips for keeping a positive attitude:
- Express thanks at the end of each day. Take some time to look back over your day and think about the things that went right. Even if you had a truly lousy day, you probably still have a roof over your head, food to eat, friends and family members you love, and a life in one of the wealthiest countries in the world. You can always find something to be grateful for.
- Commit a random act of kindness. This can be one of the best ways to make yourself feel better and adjust your mood. Try bringing your mother flowers, giving a neighbor a small present, or paying for the person behind you in the drive-through. We usually think that to feel good we need to do things for ourselves, but doing things for others can have a powerful impact.
- Take a minute to appreciate nature. Even if it’s just a small park or your backyard garden, there’s probably some place close by where you can go for a few minutes to clear your head and be in the moment. You don’t need to hike out into the wilderness. Just take a few minutes to admire the beauty of the world around you. Consider it a mini-vacation.
Taking charge of mom or dad’s affairs and becoming the one responsible for their well-being may have happened suddenly with a crisis event, or it may have snuck up on you over time. However you ended up here, you likely feel like you need some advice. Here are some things to keep in mind as you navigate this new world.
Set Good Boundaries
Setting good boundaries can be difficult when it comes to the loved ones who are closest to us, like our parents. They sacrificed so much for us, right? However, if you drop everything for mom and dad it will cause much larger problems, and you’ll be so burned out you won’t be able to be there for them. If mom is calling you from assisted living mulitple times throughout the workday, you need to be clear that this is preventing you from fulfilling your obligations to your employer or clients. This may seem harsh, but if you career begins to suffer you won’t be as effective when it comes to caring for her.Understand that Needs Change
If you’ve been thrust into your new role by a stroke, accident, or other crisis event, there will be a time when life begins to settle into a routine again. But don’t get too set in your ways: there may be another crisis that’s somewhere around the bend. It’s simply part of the unpredictability of life, and you will need to adapt if you’re going to keep up with your parent’s needs. This first month in assisted living – a family checklist can help new caregivers track routines, staff communication, care changes, visits, and early adjustment concerns. What worked before may not work now. Don’t be afraid to ask for help or to look into adding new care.Reach Out to Others in Your Situation
You’ll get a great deal of support from those whose loved ones have more advanced Alzheimer’s or dementia. You can find a caregiver support group somewhere near you, or you can seek out others online. This may in fact be better since you and other caregivers probably don’t have much time for face-to-face meetings. Try the Alzheimer’s Association or your local hospital for recommendations. Notice that a lot of this advice has to do with taking care of yourself, your physical well-being, and your own mental state. The old cliche of helping yourself before you can help others has never been more applicable than when it comes to caregiving. Your loved one is counting on your health for their own wellbeing.
Many caregivers wonder whether or not they should tell their loved one about their Alzheimer’s diagnosis. This is not an easy decision to make. Often the best course of action is to let your loved one determine what you should say and not say.
At the time of initial diagnosis, early on in the disease, your loved one may know that they have some kind of problem and will have a lot of questions about what’s wrong. At this time, during the moments when they’re asking you directly, you should tell them that they have Alzheimer’s in an honest and straightforward manner. Your loved one’s doctor should help you with this task when breaking the news for the first time.
However, you will likely notice that over time your loved one forgets about the disease. Should you remind them? In most cases, no. Constant reminders and explanations can irritate them and often make situations worse. Even if they ask what is wrong, try to say just enough to put them at ease and try to be calm and gentle. For example, if dad tells you he needs to go to work, don’t tell him he quit once he was diagnosed with Alzheimer’s. Instead, simply remind him that he’s retired without going into the details why. Try to get them to refocus on positive memories or employ some other distraction to bring their mind someplace else.
This point may be challenging at times, but eventually your loved one will stop asking questions and become more accepting of their current situation. Trial and error will help you find the right approach for you and teach you ways to keep your loved one happy. Don’t let them feel frightened and alone, but don’t reopen old wounds about the diagnosis either. Consider using their own words for describing what’s happening. If they talk about “losing their memory,” use that as an explanation. Be flexible–if something’s not working, try something else. Watch your loved one’s reactions as you look for what gets results. Know that what works may change over time.
There is little to be gained from discussing the diagnosis: it is painful and confusing information. What matters more is how life is lived every day and the way forward. Sadly, there is nothing that can be done to reverse the disease. Focus instead on enjoying the remaining time with your loved one and on making them comfortable. As hard as it is to not be honest, kindness is important too.
An Alzheimer’s diagnosis challenges everyone in the patient’s family. Teenagers may sometimes seem to be wrapped up in their own worlds, but a grandparent who has Alzheimer’s disease can be very troubling for them and significantly affect their lives. Of course, it goes without saying that when a teenager’s parent is diagnosed with Alzheimer’s, it is all the more devastating. Teenagers are likely to need some help from older members of the family in understanding the disease and what they can do to cope.
First, reassure your teenager that the emotions that they’re going through – which may include fear, regret, confusion, and anger as well as sadness – are all normal responses. It may be helpful for them to hear that this will be a difficult time in the family, and for you to acknowledge that this experience is a hard one for them specifically. And of course, it may be good for them to know that they are far from being the only teen in the world dealing with a grandparent with Alzheimer’s, even if none of their friends have any experience with the disease. If there’s no support group in your area that they can turn to, you may want to point them to the website of AFA Teens, a branch of the Alzheimer’s Foundation of America. There they can find articles written just for them, a community message board where they can connect with other teens, and numerous other resources.
One of the most useful things you can do is to explain to your teenager how to communicate with their grandparent. The following are some tips you can pass along to them:
- Approach a person with Alzheimer’s from the front, so that they are aware someone is coming.
- Use their name to get their attention.
- Ask questions one by one, rather than giving them too much to think about at once.
- Maintain eye contact.
- Speak clearly and not too fast.
- Remember that if they forget your name, it says nothing about how much they love you. Just be patient and tell them who you are.
- Use a voice that is gentle and kind.
- Smile and use hand gestures and other body language. This sets a positive tone and makes you easier to understand.
- Help grandparents do some basic, manageable chores. The feeling of getting something done and being useful can be very therapeutic.
- Ask them questions about the distant past, for example: “What was your life like when you were my age?”
- Listen to your grandparent’s favorite music. This may also get them talking about the past.
- Go through family photo albums, especially older ones.
- Play a game together or work on a puzzle.
- Read them something that they might enjoy.
If your parent has just been diagnosed with Alzheimer’s disease, it’s a confusing time for your family. One important item to add to your to-do list is to plan to have a talk with your parent’s doctor about their condition. Below are four important questions you’ll want to make sure you include.
Keep in mind that in order to have this conversation, your parent will need to let the doctor’s office know that you have permission to discuss their health matters.
1. Why have you chosen a diagnosis of Alzheimer’s, rather than another disease?
This question will help you better understand your parent’s illness. It can also be valuable in cases where family members or your parent wants to deny that they have the disease. Find out what signs demonstrate to the doctor that this is Alzheimer’s and not another disease or another form of dementia. You’ll also want to ask how your parent’s symptoms differ from the normal forgetfulness and confusion that can come with aging.
2. What medication is available that might help?
Prescription medication is available that can help slow the progress of the disease or alleviate symptoms. However, not all patients respond to these aids, and the doctor may not think any of them are appropriate for your parent’s particular situation. Also know that at this point there is nothing that can be done to reverse the progress of the disease or to cure your parent.
If the doctor does recommend medication, ask how it works and how it treats particular symptoms. Also make sure you understand the side effects, and what to do if your parent takes the medicine incorrectly or misses a dose. The doctor may be able to offer suggestions about how to make it easier for your parent to keep track of their drug regimine.
If you or your parent is thinking about trying herbal remedies, be sure to include these in the conversation as well. The doctor may be able to share information with you that you haven’t previously considered, such as the latest research. He or she can also let you know if herbal remedies would be wise for your parent’s individual situation. For example, there may be harmful interactions with the medicine your parent is currently taking.
3. Are there clinical trials we can participate in?
By participating in research studies on new treatments, your parent may be able to receive cutting-edge care for free. However, these arrangements are not without risks. Your parent’s doctor can help you determine whether volunteering in clinical trials would be a good idea.
4. How can I reach you if I need you?
This may be the first time you’ve had any conversation with your parent’s doctor. Make sure you know the office’s procedures for getting in touch with the doctor. Does he or she take questions over email? What should you do if your parent is having a medical emergency and the office is closed? Having the answers to these questions can ease your mind greatly and help you prepare for the unexpected.
If you feel that you’ve already lost your loved one, even though he or she is still alive, you may be experiencing some of the classic and normal signs of grief that usually aren’t felt until your loved one has died. Reading articles, websites, and books about coping can be helpful, and you can also consider some of these ideas.
Know That They’re Still There
Remember that at one time, your parent knew a different “you.”
You as a baby, a toddler, and a child were a different version of you, but it was you nonetheless. If you can see your parent as being at a different phase of his or her life, it can be less painful than allowing yourself to think that he or she is gone.
Cherish the Memories
Make the assumption that your loved ones can see and hear some of what you’re saying and doing. Talk to them, read to them, and continue the same as you would if they were sitting up smiling at you. It will absolutely give you much comfort in knowing that you have truly done your best.
Be Kind to Yourself
Were you patient enough? Did you love them enough? Did you respond quickly enough to feed them, change them, and answer the phone when they called? Were you…good enough?
Yes. You were. The loving care that your parent is receiving now is a result of you being “good enough.” Your parent cared for you, and you were able to come full circle and care for him or her and ensure that he or she is receiving the best possible care.
Explore Others’ Experiences
When he was diagnosed at the age of 57, Tomas DeBaggio wrote Losing My Mind: An Intimate Look at Life with Alzheimer’s. His book, the first of its kind, chronicled the extraordinary account of his journey through the disease. He said that it “silently hollows the brain” and slowly “gobbles memory and destroys life.”
He wrote the book for himself in an effort to remember his life before he lost it forever, but it serves as a landmark piece of literature that helps the aging and their families understand the mind of the Alzheimer’s victim.
The first step in this challenging time is for families to understand that their loved ones are not gone. They may appear to be gone, and their doctors may say that their minds are gone, but they are still there. All research indicates that though they may not respond to much and they cannot express themselves, they do feel.
Above all, be good to yourself. This time is probably at least as difficult for you as it is for them.
We probably don’t have to tell you that those with elderly parents are more prone to anxiety. The root of anxiety is unexpected changes, and the health of seniors can change suddenly. Caregivers are also working hard to balance multiple priorities, and often feel stretched to the max. Addressing severe anxiety will require help from a doctor or therapist, but the tips below will give you some tools that you can use on your own to get to a more relaxed, peaceful state.
1. Do something you enjoy. Yes, we know you don’t have a lot of spare time. But there’s much you can do to make life more pleasant in the bits of time you do have. A ten minute walk on a nice day can work wonders, especially if you make a point of being in the moment and enjoying it. Another thing to do that adds virtually no extra time is to listen to your favorite music while you’re in the car, at your desk, or doing chores. Also, try to squeeze in time for your hobbies. Even spending just an hour a week, or one day a month, can help lift your mood and give you an outlet.
2. Try meditation or breathing exercises. Simply taking a few minutes to focus on your breathing has more of an effect than you might think. If you find your anxiety rising, stop and take some slow, deliberate, deep breaths. This basic technique should help, but you can search online for more breathing exercises to get further benefits. Meditation or prayer can have similar advantages. Don’t worry if you think you don’t know how: meditation can be as simple as taking the time to pay attention to your breath and the present moment. You don’t have to be an expert.
3. Focus on nutrition and exercise. When we’re busy, taking care of ourselves can be one of the first things to go. But sticking to healthy routines goes a long way to staying on track in life. If you find that in your stress it’s hard to say no to fatty or sugary comfort foods, start not by cutting back on the things you crave but by adding healthier options into the mix. Have a piece of fruit as a snack or a salad along with your dinner. You’ll likely find yourself wanting less as these additions help curb your hunger, and as you develop a taste for healthy choices you’ll pick them more often. As for exercise, even a walk and a quick stretching routine can make a difference.
Addressing your anxiety is not just about helping you feel more calm and peaceful, but about helping your loved one as well. Your parent is probably picking up on your stress, even if you think you’re hiding it, and they themselves feel more stressed in turn. Taking a little time for yourself to follow these steps will benefit not just you, but everyone around you.
For additional tips, check out our post on caregiver stress.