My grandmotherTips for dealing with Alzheimer's Disease

Katinka Hesselink

Based on my personal experiences dealing with my grandmother

Dementia comes in all kinds of shapes and sizes. My main advice is:

This page is organized by question. Questions I had, and questions readers have asked.

I took this picture three years after my grandmother's Alzheimer's diagnosis. Her face really does say it all: she's very happy in the home where she is, very happy to be with me (even as I take the picture, which she does realize) but also very much confused about everything.

Be Realistic

Taking care of a person with Alzheimer's is very straining. It is in everybody's best interest that the people caring for that person can actually handle it. So whether family is taking care of them, or they are going to a home: don't trivialize the difficulties just because some things are still going well.

My grandmother has alzheimer's do I remind her who I am?

A question about grandma

That question shows some sensitivity. I know my uncle makes sure he reminds his mother who he is almost the minute he walks in the door. But I was out with him and my grandmother the other day, and when he had gone to the bathroom - she asked where her husband was. Somehow this son gets put in the emotional spot of her husband, at least some of the time.

I'd say that you should tell her who you are, yes. Especially if she asks about it. But also just by and by. You know: remind her of your parents: who's kid are you again? Say something like 'my mother, Ann, always says'... That will put you in context for her, if she still remembers the names of her kids.

What do I say when I visit my alzheimer's grandma?

Yes, conversation can get pretty hard.

If you're not sure she knows who you are - just introduce yourself. "I'm Anette and I'm your granddaughter" or "I'm Peter I'm the oldest son of your daughter Mary".

My grandmother is used to having family around her be silent, reading the newspaper or a book or something. So when conversation falls flat, I often resort to just reading the papers. When I read something funny, I'll read it to her. I have to explain a lot, usually, but she's still capable of appreciating a good story. So for us, that works. But it depends on your family traditions what will work for you. Just experiment.

Putting on music she'll like, serving tea or asking for another cookie, talking about the weather - small talk will do in any case.

But don't be afraid of a little silence. I've often been silent with my grandmother and had her suddenly come out of reverie asking a question. Here I was thinking she'd dosed off, but actually she was probably thinking hard about something.

In the end it's your mood that will speak to her. If you're calm and accepting, preferably happy to see her (despite everything), she'll be calm too.

And don't feel guilty about leaving after 30 minutes either. Having visitors is a good thing for most Alzheimer patients, but they get tired of it quickly too: after all, a lot of information they do not understand.

Alzheimer's Disease, Conceptual Image

Should I lie to quiet my mother down?

A daughter asks an Alzheimer question

Yes, I do think lying may occasionally be necessary in dealing with Alzheimer patients.

In other words: if the emotional truth is served, that's whats most important. Tell her what she can hear, that fits your world best.

For instance my grandmother still can't grasp that she is in a home, taken care of daily. That she's been there for months and that everybody knows who she is. So when I assure her dinner will be taken care of (a daily worry for her), she may ask if I've talked to the staff about it. And most of the time I will say - yes, I've talked to the staff about it. Even though I've done no such thing and am not planning to. The main thing is: yes, the food is taken care of. She does not need to worry.

My main concern is to stop her from worrying about where food is coming from. Worrying about whether what I say is the truth is less important. I do of course speak the truth where I can.

A reader says:

Yes, this was very helpful. My mother hasn't been diagnosed with Alzheimer's as such, but has been developing some memory problems and is in the Alzheimer's wing at the care center. And I agree- lying to keep her from worrying about things is definitely best. Just tell her what she wants to hear, and she won't remember less than an hour later anyway!

Should I really put familiar stuff in my father's new home?

A question by an adult son about his father

Yes. I know it may feel strange to not buy your father new stuff as he's moving. I know my family at first felt like buying my grandmother all kinds of new things. In the end though, one of my aunts managed to put some of my grandma's old stuff in the room in a way that looked decent and was practical.

We weren't too worried about my grandmother moving, because she's always liked change and gets bored at things staying the same. But I'm very glad we managed to put her old stuff around her, because now, when she's confused about where she is - I can assure her it's her room by asking her to look at all her familiar things.

Your father will need those reminders just as badly.

Rodriguez says:

My Dad had Alzheimers. For a while he could function in his own home because he knew it so well. It's hard to move them to different living facilities.

How to celebrate a birthday

Two years after diagnosis

Like everything, this depends on how deteriorated your parent or grandparent is.

This morning I went to the nursing home where my grandmother is staying to celebrate her birthday with her. I brought cake and something for the staff (chocolates - enough so that not only the people on duty that day would have some).

When I got there my grandmother was asleep in her wheel chair. She'd already had her breakfast and was now sitting in front of her morning coffee. I woke her up (gently) and asked her if she knew what day it was. She didn't, of course, so I told her it was her birthday. Though happy to see me, she was not responding much.

The lady who was tending the women in the living room went for her morning coffee, leaving me to fend for myself. I cut up pieces of cake for everyone and preceded to give them to everybody. Then I grabbed a piece for myself and sat next to my grandmother.

She was not eating any of her cake. So I cut some up for her and left her a fork. That didn't help much either. She did talk a bit throughout all this, but it was nonsense - not quite gibberish, but close.

Having finished my own cake I decided to sing for her - you know 'happy birthday'. That brought the first real smile to her face I'd seen that morning. The singing reached her the way words and cake no longer could. She even took up her fork and ate a piece of the cake.

We're from a musical family, so it makes sense that the music reached her. However, even in patients who don't have that background, music may reach them where ordinary words no longer do. So try it. Even if you aren't a confident singer. 

By the time I left she had had two or three bites of the cake. She was happy when I left, but I can really understand people giving up on Alzheimer patients. It's so much work, for so little reward.

This afternoon we, some ten family members, will be taking her out for a walk and High Tea. I wonder how well she'll take that.

Does it help to make a memory book?

Yes, there's research to show that creating a memory book and having it as a talking point does help. It even helps people with Alzheimer's become more coherent. In other words, they use words others understand. This is of course a major help in their quality of life. And as they communicate better, they're also more likely to get along with staff in a nursing home. This too is essential to their wellbeing.

Here's more about how to make a memory book.

Aside from a memory book helping the patient, it also helps those around the patient. It can contain information about deceased family members, so that people helping out will know what the facts are and can point them out in the book if the patient should ask for those people. It is very usual for people to ask for their parents for instance. My grandmother also asks for her brother and her husband. Since they're all gone, it is helpful in the conversation to remind her of that.

How do you deal with an alzheimer patient repeating himself?

Is this true: "when people with Alzheimer's disease repeat the same question or story several times, it is helpful to remind them that they are repeating themselves"?

No, that will just embarrass them. Instead, just answer the question in as few words as you can. If they recognize the answer, they will look at you sheepishly. If not, they are so far gone that reminding them that they've already asked that isn't going to help.

If they are repeating the same story over and over, you may get tired of hearing it. I would not tell them I'd heard it before, but that really depends on the relationship you have with the patient. It does give you something to talk about after all, and in most cases conversation will get pretty dry anyhow.

I'm personally happy when my grandmother talks at all. Silences are getting longer and longer. She's still happy to have me around, but she's no longer much of a conversationalist. But then, she doesn't really repeat herself all that much. And when she does, she usually asks me whether I've heard the story before.

Instead of reminding them that you've heard it before, you may try and change the subject. Or serve something to eat or drink. Any activity may help them get off the beaten track.

Just experiment with it and feel your way through.

Visiting someone with Alzheimer's is vastly different from living with and caring for them. The caregiver can only get frustrated and exhausted with repetitive statements or questions.

At first you DO try to be creative and then you try to keep your answers short, and then you try to distract, etc., but eventually, this trait will drive you positively OVER the edge. Some of the things my Dad says he has said within a three-year time span, about one thousand times, and that is not an exaggeration!

You have to stay calm or you'll wind up blowing up at them; sometimes you have to just change the subject or let the subject drop and focus on keeping yourself from wasting your own energy.

At some point, they have no concept of how many times they've asked or stated whatever, so they won't even remember you not answering them after five hundred times of answers.

At some point, nothing you say will really make a difference. It's the emotional color of what you say that they're tuned into. If you're so frazzled you can't be emotionally kind, then it's better just to exit yourself for awhile (to another room, or whatever) to take care of yourself a little.

How should you deal with aggression in an Alzheimer patient

First of all: aggression, whether verbal or physical, is caused by the confusion the patient is in. It has little to do with the people treating the patient. Still, there are things you can do that will help minimize aggression, and things you can do that will escalate the problem.

Stay Calm - this is probably the most important tip I could give. Your calm will reach the patient where words have stopped helping (because they're not remembered long enough).

Find out the triggers - keep a diary to find out what triggers aggression, so you can try and find a way of dealing with it that is better. A common trigger is confusion itself. Things like not knowing what to do with choice - so choosing for the patient. This may feel like babying them, but when the point comes that nothing makes sense, helping them organize their world by making them a sandwich instead of asking what they want is a good idea.

Soothing music may help - I once calmed my grandmother down by going outside with her (always a help in her case) and simply humming a tune. Like staying calm, the clue is that the emotions should and can be calmed even if the mind is in turmoil and confusion.

Nothing you can do will totally prevent aggression, because nothing you can do can prevent confusion in someone who's loosing their mind. So don't blame yourself. Do stay calm and keep it simple.

And in case it gets dangerous: get yourself some help!

Should I put my parent in a home?

This is a tough one. I was very happy to have my grandmother in a home. I knew, living in The Netherlands, that however much we -as a family - might complain of the fascilities, the care was still a lot better than we would have been able to provide at home.

So, on a previous version of this page I promoted that solution. A reader had this to say, and she had a point. Though the other point is that where there isn't enough money for a proper home, there may also not be enough money to be able to afford an adult staying home 24/7. It's a catch 22. After all, it is REALLY tough.

If the type of care you are describing as normal for The Netherlands were available for the average, middle-class person in the United States, there would be no question that it would be better for both. In point of fact, it definitely isn't that way. I would encourage you to actually visit nursing homes in the United States (for average, middle-class Americans) before you promote them. Not googling; not reading statistics; not viewing videos designed to soothe anxious family members. Actually spend the day at one, observing, observing, observing. You are writing from an isolated experience and sometimes I feel you are trying to absolve lingering feelings of guilt. When people want to care for their aged parents (even if it's hard) you seem to try to dissuade them, again promoting the care your mother received in The Netherlands. How nice for the The Netherlands -- I wish that were a beacon for the world -- but most of your readers don't live there and American nursing homes are a far cry from that.

What I had to say:

I'm not saying it's a crime or anything like that to take care of your dad at home. I just know I could not do it and that my grandmother is happy where she is. And now, when I see her, I'm able to give her quality time. I'd be continually exhausted if I had to take care of her for every little thing. And my business would suffer too. The result would be that we were both less happy than we are now. Even when she was in a home we weren't happy with, I still felt like they took better care of her than I'd be able to.

A reader:

I'm scared my grandma has alzheimer's. I lived with since i was born and her memory is getting worse and she blames me for things and wakes up and thinks shes in another country and doesn't remember who I am or where she is she came back from the hospital today they were holding her there and she was crying out for me so I couldn't leave her. She was telling me she saw murders in the hospital and they were coming to kill her but the doctors never diagnosed her with anything and I'm worried what shes going to do next tomorrow morning :(
I just want to add to this, because reading it I don't feel I've conveyed how extremely hard this can be. On my worst days, I am so utterly exhausted, it's indescribeably difficult. Sleep is so important, and it's hard to get to bed when he does (early) because when he's finally "down," I want to spend a few hours on personal time for me. Like reading, watching a movie, searching the web.

But what happens is that when he wakes up in the middle of the night to get to the restroom, I have to get up, too, to make sure he finds the toilet, etc. He goes right back to sleep, as evidenced by his snoring, while I'm up for a few more hours, tossing, trying to get back into that same sleep groove. Then, of course, he's up at the crack of dawn, wanting breakfast, when I'm finally in deep sleep.

The only method I have of dealing with the frustration and anger and resentment that CAN build up IS to turn to prayer. Even venting sometimes just leaves me with more frustration. I believe in honoring one's father and mother; of not returning ill-treatment with ill-treatment; all those values.

Our culture seems to be more and more focused on the great ME idea. The signals are stressed over and over that "it's all about ME." And while I don't believe in submerging oneself completely in the care of others, modern culture would have one throw out everything that doesn't satisfy or gratify self in some way.

This is a direct contradiction to the idea of caretaking for a demented parent. In a real sense, ME is whittled down. And all around, people are rushing about, in pursuit of their own personal idea of happiness. It is with a real sense of envy that I don't have the time and space to do the same that I regard that pursuit, to be totally honest.

BUT if I'm going to do this, I just have to keep letting go of that idea. It's not part of the landscape of nurturing a parent to be that focused on self. Parents go through the same thing.

I just wish our culture were more attuned to the needs of parents and other caretakers and had more offerings of support. I think "nursing facilities" which would be the kinds of places we boomers would be willing to live in ourselves at some point down the road could be the ticket. Whoever completely revamps these could make a fortune.