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.
Posts
Coconut oil as a possible treatment for Alzheimer’s disease has gotten a lot of attention recently. Advocates for this approach cite stories of folks whose symptoms have reversed and abated, even if just for a period of time. A frequently-told story is that of a Florida man suffering from early-onset Alzheimer’s. His wife began mixing coconut oil into his morning oatmeal, and he began to show improvement within days and complete tasks that had become too hard for him. Ten years later, the disease has progressed nowhere near as quickly as expected. Coconut oil advocates also point out that the disease occurs less often in cultures where coconut oil is used often. Are these claims valid, or is this just another crazy food fad?
There is a possible explanation for why coconut oil may help. As the disease advances, Alzheimer’s patients have trouble with using glucose as energy for the brain. Without fuel, brain cells die and cognitive function suffers. However, there is another substance that the brain can use for energy: ketone bodies, which are produced as byproducts when the body digests coconut oil.
That being said, as of now there is no scientific evidence that coconut oil does what its supporters claim. Formal clinical trials to investigate are just beginning, and the results should begin to come in a couple years from now. But in the meantime, speculation and individual experience are all we have.
But since coconut oil is just another food on the supermarket shelf, there’s no harm in trying it, right? This is true in part, but there’s another factor to consider with coconut oil: its high saturated fat content. The Food and Drug Administration has not confirmed any health benefits for coconut oil, but they do warn people to keep their saturated fat intake to a minimum. Those with high cholesterol or problems with heart disease should talk with their doctors before enjoying coconut oil frequently. If you do decide to try coconut oil, look for brands marked “virgin,” which will have no trans-fats or hydrogenated oils.
Do some research and consider the risks. Be careful of exaggerated claims you may see online: many of those singing the praises of coconut oil also happen to be selling it! Still, you may want to try adding coconut oil to your loved one’s diet slowly. This may be an area of research to keep an eye on.
Respect your elders! It’s a rule that’s been drilled into us from the time we were small. But how do you respect mom when she forgets your children’s names or wanders into a neighbor’s yard four houses down in the night? To make things even more complicated, now when your loved one’s abilities are declining is when they need your respect and patience the most.
The key is not to focus so much on their behavior now, but who they have been throughout their life and what their contribution to the world has been. Here are some tips for cultivating a more positive mindset.
- Remember that the world you experience is not the same one that they’re experiencing. Try to join them in their world. If dad seems to believe it’s 1943 again, follow him there. There’s no harm in indulging him for a few minutes, and it will help you better understand how he’s feeling.
- Don’t worry so much about perfect results. If Aunt Judy forgets that she’s already put on her lipstick or has been forgetting to water her plants, don’t fixate on it. Instead, just try to enjoy doing things and spending time together. It won’t kill either of you if you help her apply that third coat of fire-engine red. At least she’s having a good time!
- Don’t ask them to do too much. That’s just setting you both up for disappointment, and your loved one will likely become upset and overwhelmed. Give them something simple to do. Don’t go overboard with this, though, as treating your loved one like a child also won’t help.
- Let them do the things they are able to do. For example, mom may no longer be able to safely help you cut up vegetables for dinner, but maybe she can still assemble the salad once all the ingredients are ready. Let them have accomplishments, even if they’re small, and get them involved in everyday tasks.
- Don’t rush to get things done or to get to a particular place. Take the time to talk to your loved one and find out how they’re doing. This will go a long way towards helping them feel honored.
Wandering is a symptom of Alzheimer’s disease that many caregivers are familiar with. Your loved one wanders because they feel afraid, confused, and unsure of where they are. These incidents can be very stressful for caregivers and other family members. While you cannot completely stop this behavior, you can make your loved one more safe. Here are some tips for dealing with wandering.
Allow some space for wandering. Let your loved one satisfy their urge to explore safely. Set aside an area of your home or your yard where they can go without getting hurt. This may be enough to keep them from taking more dangerous trips.
Use signs. Signs with some sort of visual cue can help remind your loved one where they are. You may want to try a “Stop” sign on the front door to make it clear that they should go no further. Or put signs on the door to each room indicating what that room is for. You could put a picture of a blender at the entrance to the kitchen or a cartoon of a person sleeping in bed on the bedroom door.
Camouflage the exits. Your loved one can’t leave the house if they don’t know where the exits are. If your doors and your curtains are the same color as your walls, they’ll blend in and your loved one will have a harder time locating them.
Use locks and alarms designed to prevent wandering. There are many products out there designed to help caregivers address the issue of wandering. There are locks that you can install on entrances that are too complex for an Alzheimer sufferer to open. You can also buy alarms that sound when someone opens a door, steps on a mat, or enters a certain area.
Think about what causes the wandering. Is there some sort of pattern to your loved one’s behavior? Maybe they tend to wander at the same time each day? If that’s the case, figure out some way to eliminate the trigger or stop it from causing the unwanted behavior. If your loved one tends to wander at sundown, which is very common, come up with activities that will distract them during this time of day.
Talk to your neighbors. If your neighbors know that your loved one has a problem with wandering, they can help you be on the lookout. This way they’ll be more likely to call you as soon as they see them, rather than assume everything’s OK.
Even with normal aging, bathing becomes more difficult as we get older. However, the particular challenges of Alzheimer’s disease make this everyday ritual all the more nerve-wracking. If you’re finding it almost impossible to get mom or dad squeaky clean, read on for some advice.
First, consider why bathing has become more difficult. Does mom think she just showered an hour ago when in reality it’s been a couple days? Does dad not know what to do once he’s in the tub, and thus gets frustrated? Does your loved one not know what’s happening and become fearful once they’re all wet? Once you’ve figured out why they’re avoiding this activity, you can better address the problem.
If memory-related issues are the challenge, try to make taking a bath fun. For example, let mom know that you’ve planned an enjoyable outing where she’ll need to get dressed up, so that’s the reason why she needs to take a bath “again.”
If your loved one is fearful or uncomfortable when taking a bath, see what you can do to correct this. Turn up the heat if the room is too cold, or install grab bars so that your loved one can support themselves. Stools for the tub and hand-held shower heads are also popular with the elderly. As you help your loved one, go slowly and explain what you’re doing. The bath will be much less frightening for them if they know what’s coming next. If your loved one is very frightened at bath time, sponge baths may be your best bet. You may also want to purchase some dry shampoo so that you don’t have to get them in the bath as frequently.
Finally, consider whether your own expectations of cleanliness are part of the problem. Though the norm now in 2013 is to wash up daily, when your loved one was younger this wasn’t always the case. For example, in rural areas 75 years ago running water was a luxury, and many farm families took baths once per week. So keep in mind that your loved one may not be used to taking baths as often as you think they should, and that a bath every few days may make them a lot less stressed without causing much real harm.
Making bath time a comfortable and welcome experience for seniors with Alzheimer’s is a challenge, but with some adjustments it can become a manageable task.
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.
Thanks to the digital revolution, we look for technological solutions to every problem we encounter. So it’s natural that we wonder what computers can do for our loved ones who have Alzheimer’s and dementia.
Studies have shown that computer games can help, specifically games that make use of memory and attention. The best games adapt to the abilities of the person playing, to insure that they get the most appropriate level of challenge. Two such games recommended by researchers are BrainHQ and Brain Age, both of which can help alleviate symptoms in those already diagnosed with dementia.
However, it may not be enough to simply sit down in front of a screen. Research has also shown that these remedies work best when used alongside other treatments. For example, one study found that a computer game used in conjunction with traditional ways of challenging cognitive functioning extended the benefit by 24 weeks longer than use of the computer game alone. Another study found a similar effect when computer use was combined with moderate exercise, such as walking or swimming. Though exercising five or six times per week was best, even participants who exercised once per week demonstrated benefits.
Therefore, seniors should not rely on computer games alone when looking for ways to cope with dementia. Indeed, while such games should be used if they’re available as a supplementary treatment, they’re no substitute for more old-fashioned games that stimulate the senses with bright colors and tangible playing pieces. Further, games that the senior played when they were a child will also have an exceptional benefit, since they’ll stimulate long-term memory and perhaps even have some emotional value.
When playing any game with a dementia patient, be sure to be flexible about the rules. In the earlier stages of the disease, the challenge of playing the game the way it’s supposed to be played may be good for seniors. But later on, only the fact that they’re using their brain in some way would be important. As long as the senior is preoccupied and proud of the outcome, whether the game is played “correctly” matters less. Finally, it’s also crucial that the senior choose what game they would like to play, rather than be forced to do something that’s uninteresting or frustrating for them.
Due to their importance in our lives, computers will clearly pay a role in the treatment of Alzheimer’s and dementia. However, they should be used alongside, and not in place of, interaction with the non-digital world.
Part I of this series covered the emotions you might experience when putting a spouse into memory care.
When your spouse moves out of the home you’ve shared and into memory care, you’ll need to work on building a new relationship, one that may not be the same as the one you’ve grown used to, but can still give you a connection to your life partner.
You may find that your spouse no longer knows who you are. As heartbreaking as that is, they likely can still recognize you as an important person in their life. Don’t worry too much about convincing them of who you are, as this will likely only lead to frustration. Regardless of whether they know you as you, you’re still important. You’re probably the one they see most often, and they know that you care about them a great deal. It may be hard to accept, but know that that might be the highest honor your spouse can give you in their current state. Your visits, even if your spouse isn’t aware of them or doesn’t register their significance, are now the most important way of honoring your marriage.
It’s possible to find new ways of enjoying intimacy with each other. A good care facility should give you ways of having uninterrupted time alone. Furthermore, now that you no longer have the burden of being your spouse’s primary caregiver, you can focus on the relationship the two of you have. You can be there for them in other ways beyond taking care of basic functions. You may even find that this new focus on love itself, without day to day hassles, brings you even closer than you were before, and eliminates feelings of guilt and resentment.
Though it’s important to nurture your marriage, it is also crucial during this time that you care for yourself. While your spouse was still at home, you likely put off your own needs and desires, and now is the time to remedy that. Make sure that you address any of your own neglected health needs, both physical and mental. As you probably know, you can only help someone else if you help yourself first.
There is no cure for dementia, but despite this a move to memory care can result in healing for both of you. You may not only be caring for your loved one’s condition, but also for the health of your relationship.
We all agree that marriages that have lasted decades are precious. These couples have come to know each other in ways so intimate that their other relationships pale in comparison. When one half is diagnosed with dementia and moving to a memory care facility becomes necessary, the separation is of course heartbreaking. Though there may in part be some relief on the part of the spouse who was serving as a caregiver, such a drastic life change requires much strength and bravery from both.
This change often comes quite suddenly, and can be overwhelming. Possibly it was precipitated by an emergency hospital visit or a frightening incident at home. Indeed, this may be the most difficult challenge a couple’s relationship has ever faced. The most crucial time is the first few months, as they enter into new and unknown territory.
The following are common emotions and experiences you may have during this time:
- A sense of loss of control as you are no longer responsible for your spouse’s day to day care
- Struggles with how to handle a sudden increase in free time and an empty home
- Guilt at being unable to continue to care for your spouse at home
- Anger and despair that the life you shared, and your closest friend, is gone
- Fear about what the future may hold
- Second guessing the decision you’ve made
For most of us, mealtimes are a chance to enjoy some good food and take a welcome break. But for some dementia patients, eating is a stressful experience. Why do they resist what was once such a favorite aspect of life? Are they simply “being difficult?”
There are a number of underlying causes that may result in a dementia patient not eating or eating with difficulty:
Cognitive problems. Dementia patients may have trouble with being able to distinguish the food from the plate, or may have trouble with using utensils. They may also forget to eat or to continue to eat, even if they’re sitting at the table!
Psychological problems. Few of us have much of an appetite when we’re depressed, and unfortunately this is a common problem for dementia patients. It’s also possible that your loved one may be too restless to sit down for meals.
Physical problems. It may be that your loved one is too tired to eat. They may also have sores or other problems in their mouth that make eating painful. The fit of dentures is something else to consider, as is physical difficulty with using utensils or trouble with chewing or swallowing.
Environmental problems. Too much confusion at mealtimes could make it difficult for your loved one to focus on eating. A room that’s the wrong temperature, has bad lighting, or an unpleasant smell may also make your loved one too uncomfortable to enjoy their meal.
Problems with the food itself. Dementia patients can easily be overwhelmed if there are too many possible choices on the menu. Food that is unappetizing in some way may also make them reluctant to eat. Or it could be that something about the food makes it difficult to handle.
Medication or other illnesses affecting appetite. Some medicines, or the way the medicines are interacting with the food, might kill your loved one’s appetite and cause them to be uninterested in mealtimes. Similarly, some chronic diseases can also decrease the desire for food.
If your parent isn’t eating, the first thing you should do is to take the time to simply observe them during a meal. Watch closely to determine where the problem starts. You may want to eat at the same time, so that you can think about all the steps involved in eating that you normally take for granted. This may be enough for you to diagnose the problem, or you will at least be better prepared to approach your loved one’s doctor about the issue.
By understanding why your loved one might not be eating, you can ultimately make sure that they get the nutrients they need.
