There are many seniors who make the transition to assisted living or memory care comfortably. But unfortunately, due to the nature of the disease, sometimes loved ones are faced with an uncomfortable request: “I want to go home.” Such a plea is heartbreaking, and when you hear it every time you visit it can leave you quite distressed.
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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.
One hardship for those with Alzheimer’s is a lack of understanding about this disease from those in the general public. Though it may hurt sometimes, to some extent this is understandable. We can’t all be expected to be knowledgeable about every disease, even more common ones. Typically, we forgive those who are important to us if they need a little education. But many Alzheimer’s sufferers and their caregivers are surprised to discover that many in the medical field, who do not work with memory care patients frequently, also do not have a good understanding of what Alzheimer’s is.
Imagine someone in the early stages of Alzheimer’s falls and breaks their hip, requiring a stay in the hospital. When the doctor interviews her and her son to learn about other medical conditions that may affect treatment, they mention that she has early Alzheimer’s. The doctor seems to ignore this information, which he fails to see as relating to the broken hip, especially since after a casual interaction he notices no cognitive impairment.
However, our patient quickly runs into problems. The doctor goes over instructions for her pain medication at a time when her son isn’t at the hospital, expecting that she will manage this on her own. The next time her son comes in, he finds her in extreme pain because she hasn’t taken the medicine on schedule. He points out this problem to the doctor. The hospital staff then goes to the other extreme, hovering over the patient excessively, speaking to her in slow loud voices, and even spoon-feeding her! Those with early Alzheimer’s know that this clearly is not the appropriate response either.
Unfortunately, the fact is that medical professionals just don’t receive adequate training on how to handle those with more mild cognitive impairments. They are able to address severe impairments, but the shades of gray in between just aren’t discussed. However, that’s cold comfort to early Alzheimer’s patients and their caregivers, who feel ignored and misunderstood by the system.
There’s no real answer to this problem for individual patients and families, since the issue is entrenched in our larger health care system. Hopefully in the future, all doctors, nurses, social workers, aides, and others will receive more refined training on how to deal with those with early Alzheimer’s and similar cognitive conditions. In the meantime, caregivers and patients should not assume that doctors and others will understand what they mean when they disclose early Alzheimer’s. Be specific about the kinds of communication you expect about the person’s treatment and how Alheimer’s will affect it.
Many caregivers face the important question of whether to allow their loved one with Alzheimer’s disease to be given antipsychotic medications. The benefit of such drugs (like Abilify, Haldol, Zyprexa, Risperdal, and Seroquel) are that they reduce anxiousness, aggressive behavior, and agitation in those who have different forms of dementia. Almost all patients will experience these symptoms at some point, especially in the later stages of the disease. On the other hand, these medications come with some frightening side effects: incontinence, dizziness, confusion, and a hampered ability to speak or move, to name a few.
The medicine can help to make a caregiver’s job easier and reduce their stress. This is of course not a trivial concern: if their loved one is less agitated, a caregiver in turn may be able to provide better care.
However, adding one more pill to any senior’s drug regimine may cause unpredictable problems. The FDA warned in 2005 that the use of antipsychotic medications by those with Alzheimer’s and other forms of dementia may result in as much as double the chance of sudden death. Patients who are taking these drugs must be watched carefully.
If your loved one is already taking these drugs, though, you may not want to take them off. Researchers recommend that seniors who respond to Risperdal keep on taking the drug.
But as far as starting these medications go, the general policy is that they should only be used as a last resort. It’s estimated that in as many as two-thirds of cases, the use of these medicines is inappropriate. Use behavioral strategies to cope with anxiety and acting out instead. You may want to try giving simple acknowledgement to your loved one’s experiences, even if you know that they differ from what the rest of us would consider reality. Avoid correcting them or arguing with them. Or simply try to distract your loved one with an enjoyable activity.
Also consider that the aggression and anxiety that these medicines are supposed to treat is a sign that your loved one needs something that they’re not getting. Instead of providing them with that thing, the medicine simply masks the symptoms. One tip is to respond to the emotion, not to the behavior. Look underneath their actions.
Of course, the most important advice to consider when making any decision regarding antipsychotic drugs is that of your loved one’s doctor. They can help you weigh the pros and cons for your particular situation.
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.
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.
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.
One of the more unnerving side effects of dementia are the delusions and hallucinations these patients sometimes suffer. They can leave the patient very troubled and scared, yet they’re difficult for loved ones to address because they know these illusions aren’t real. Around 25% to 40% of dementia patients experience these episodes. They will often respond with agitation, aggression, or even violence. This behavior may be more threatening and troubling as the disease advances, as patients are more likely to respond to what’s going on in their minds.
Your initial instinct might be to try to reassure your loved one that what they’re seeing isn’t real. But this is often a mistake. The patient can easily get the perception that you don’t take them and what they’re seeing and feeling seriously. Rather than being comforted, they may feel isolated and hurt.
Instead, what you’ll want to do is offer some acceptance to their reality. No, you don’t have to believe that mom’s long-dead sister is in the room with you, but you should understand that the experience is real for your mother. If you do this, you’ll bring stability to the situation much more quickly than if you tried to fight them on what they’re perceiving. Be reassuring: “You must feel frightened. I would be frightened too. But I will stay here with you to make sure you’re safe.” It may also help to offer some form of physical comfort, such as a touch on the arm. No only does this reinforce that you are there for them, but also helps draw their attention towards you and away from what’s bothering them. You can also help make the problem vanish by getting your loved one to a different environment like another room or outside for a little fresh air.
Some hallucinations might be comforting. Dad may be imagining that he hears birds pleasantly tweeting. If he seems to be happy about this, you may not want to disrupt this at all. You only really need to worry if what your loved one is perceiving puts them or others in some kind of danger.
Unfortunately, you won’t always be so lucky and there isn’t much you can do to prevent these incidents. Medication may help, but it may have side effects that bring new problems. Understand that feeling distressed and overwhelmed in these situations is normal. By learning all you can about this effect of dementia, you can help yourself to cope with it more effectively.