At the final stage, Alzheimer’s disease begins to affect a person’s physical as well as their mental capacity. At this point, the person will require intensive, round-the-clock caregiving: assistance with dressing, eating, using the bathroom, and other ordinary tasks. The goal at this point is to make sure your loved one is comfortable and that they maintain as much dignity as possible.
At this stage, communication becomes difficult, and the person loses the ability to have a conversation. They might need assistance in order to walk, and their muscles might become rigid or possess abnormal reflexes. As the disease progresses they will likely also become unable to control their bladder or to swallow. At this stage, it is important to watch for infections; there is an especially high chance of pneumonia.
Due to the extent of your loved one’s needs now, this is the time when you’re most likely to need to move the person to a facility where they can receive the proper care. This is a decision that will require lots of research and education to make sure you’re making the right choice. On this website, we have many different resources to help you find the right Alzheimer’s care solution.
Though they have trouble speaking, your loved one is still “there.” They feel emotions such as calmness, fear, and love. They can also still use their senses to perceive you and the world around them – this is their primary way of interacting. Your main focus will be on providing for their physical well-being, but try to find ways to connect with them. You might read to them, look at old photographs, play music they might like, give them some potpourri to smell, or make them a meal they would enjoy. Think about the basic life pleasures that many of us take for granted – these are the kind of things your loved one can take pleasure in at this point.
This stage of the disease is one that is difficult for caregivers, both on an emotional level and on a physical level too. As the end of your loved one’s life approaches, you might be feeling sad, relieved, or numb to any feeling at all. These reactions are all normal. Receiving guidance from a bereavement specialist, therapist, clergy member, or other support can help you address these feelings in a healthy way. It is important to confront your grief.
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Most people have fond memories of at least one of their grandparents. These are some of our most cherished relationships. It’s important to both your children and your parents that they make the most of this relationship while they still can. During this difficult time when the family struggles with dementia or the poor health of your parent, strong grandparent-grandchild relationships are vital and can be very nurturing to them both. Often people leave children out during times of illness, but if this happens they can miss out on the chance to help a relative who needs them.
As adults, we want to feel that we are valuable and that we’re making a contribution to our world. That’s what makes old age so tough – we can begin to feel that we’re no longer relevant and that we no longer matter. Kids, on the other hand, want to be recognized for what they do well, especially when they’re teenagers.
Kids today often don’t know much about history, and this is where a good relationship with their grandparents can really benefit them. They have much to learn about where they come from, and about things that happened before they were born. Even if your parent thinks your family history is unremarkable, your kids are likely to be curious and glad to know where they came from.
And kids, in turn, know quite a few things that grandparents don’t. They may be able to set up your mom’s new DVD player faster than you can say “Gone with the Wind” or they are pros at doing that cool new dance everyone’s talking about. Even a sullen teenager may be more receptive to assisted living visits if you find some way to incorporate their talents. Maybe they can build an online photo album with treasured images to share with their grandparent. Or, if they were just in a school play, maybe your child and their classmates will agree to volunteer to perform a few scenes to entertain the assisted living residents. (Won’t mom be proud!)
Make sure that both grandchild and grandparent know what they can contribute to the other, and ask each of them privately to help you by contributing their knowledge and spending time together.
By each of them sharing what they know and what they’re good at, grandparents and grandchildren can meet each other’s emotional needs. So getting them to spend time together can be good for your parent, good for your kids, and ultimately, good for you because everyone’s happier and a little less stressed.
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.
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.
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.
The first thing to know is that when your loved one says “home,” they probably don’t mean their previous residence. Remember that due to Alzheimer’s and dementia, they’re living in their earlier years. Home is most likely their childhood home, and that place and the people they lived with may be long gone. So before you beat yourself up with guilt, know that they are requesting something impossible that you couldn’t give them no matter how hard you tried.
The best way to deal with this request is with gentleness and a little bit of subterfuge. This is one of those moments where enabling your loved one’s denial may be the better course. Avoid correcting or arguing with your loved one, as this will only cause distress without really aiding them in recognizing the truth.
First, use positive body language such as nodding your head. Then try to change the subject. Look for something interesting going on in the immediate environment. Maybe there’s a bird outside the window, or a colorful painting nearby. Point this out to them and shift the conversation. It may also be helpful if you can move them physically: guide them to the object of interest or turn them to face a different direction. You are trying to get them out of an unproductive rut.
From there, seguey into your loved one’s memories. Get them to talk about what “home” was. This will help them pay this cherished place a visit, if only in their minds. A photo album might be helpful here if you have one. Your discussion may give you some clues about how you can bring home to them in their new living space. Perhaps there are beloved objects or furniture that will help their new surroundings feel more familiar.
Your loved one will likely not completely stop talking about home, and you’ll likely continue to feel the pangs of heartbreak. However, some knowledge about where the request is coming from can help you accept it. This is a case where you may not be able to change external circumstances, but you can change how you react to them.
You’ve noticed some recent changes in your loved one. Up until recently, your dad was working at a job he enjoyed and intended to do until he couldn’t anymore. But then he had trouble keeping himself organized and he made the decision to move on. Now, your once-driven father seems to be doing not much of anything, withdrawing from all but his closest friends and family.
You suspect something is wrong, and know that Alzheimer’s disease or another form of dementia is a strong possibility. Should you act? If you do, what should you do next? Talk to dad? Talk to his doctor? And is there any point to pursing a diagnosis? You know that even medical experts can’t be completely sure someone has Alzheimer’s. Will the diagnosis only bring unnecessary pain and conflict to someone who only has a few years of life left?
Yes, it is true that diagnosing Alzheimer’s isn’t an exact science. No doctor knows without a doubt that a person has the disease: it can only be determined after death when the person’s brain can be examined for the plaque and tangles that characterize this illness. Furthermore, recent research has found that only about a third of Alzheimer’s diagnoses are completely correct. In another third of cases the evidence is murky and the last third are completely misdiagnosed!
But to put aside the issue of imperfect medical knowledge, even assuming one could know with certainty that they had Alzheimer’s, would they want to? Those who are labeled with the disease do often experience friends and family drifting away as they become uncomfortable. Illness is never an easy thing to witness, and for some people it’s just too much.
And beyond the isolation issue, accepting an Alzheimer’s diagnosis means accepting that one’s cognitive abilities, and quality of life, will be declining. Many prefer to put off facing this reality for as long as possible.
On the other hand, knowledge does bring power. For example, it may be useful to know that a loved one’s problems are NOT caused by Alzheimer’s or dementia, so that appropriate treatment can be pursued. It may be possible that your loved one’s condition can be easily remedied. The symptoms of a number of medical problems can be confused with Alzheimer’s: difficulty hearing, medication interactions, thyroid diseases, depression, heart problems, urinary tract infections, and diabetes. These concerns may be more treatable.
Finally, having an Alzheimer’s diagnosis can enable the patient and their family to plan more effectively for the future. It can prompt everyone to have a discussion about how the person wants to be cared for as they decline, while they are still able to have a meaningful conversation. It is also easier to make the appropriate legal, financial, and medical arrangements in the earlier stages of the disease. And finally, having a concrete reason for the behavior can be comforting to seniors and their loved ones. Otherwise, it’s all to easy for them to think that they’re “going crazy” or otherwise defective in some way.
There is a reasonable fear around seeking confirmation of suspicions of Alzheimer’s disease, but the disease itself is not going to go away. Many may find, as is often the case with fear, that the best way to escape it is to face it head on.
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.
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.
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.