Dealing with Alzheimer's - my personal experiences

Alzheimer's is a very unforgiving disease which eventually takes away the personality of a person. If that person is your mom or dad, or someone else you were close to, that is very hard to deal with.

Each stage of the disease has its own issues. Dealing with those issues is quite a challenge and expect family members to react differently.

The early stage of alzheimer's disease is just like other forms of dementia and very similar to normal forgetfulness which accompanies growing older.

My grandmother lost her stuff an awful lot. She had always been good at moving stuff around the house and this increased after her husband passed away. Her whole house got reorganized. This wasn't yet a symptom of dementia.

Her tendency to move things became a problem (characteristically) when she no longer remembered where she had put the stuff.

Very early on in the process which lead to dementia - my grandmother was no longer as good at assessing interpersonal relationships.

She was chair in the social committee in her church, but she no longer understood the responsibilities of that position.

When one of the hard working members of her church had a hallmark birthday she didn't want to bring him flowers - why should he be special?

The early stages of dementia can often easily be ignored by the people who don't see the person often. A bit of forgetfulness is expected of people who are getting older.

As the disease progresses it gets harder to ignore. What I've seen people do to deal with that is:

• Trying to train back skills that were lost (using the DVD or video for instance)


• Denial: focussing on all that is still going well


• Trying to control the environment so that accidents get avoided (a good response, but it can become too much)


• Staying away: my coming won't do my mother any good

My grandmother broke a hip and landed in hospital. She was stuck in bed for months as complication followed complication. It's not clear what did it - the medicine, the lack of privacy (six people to a room) or the fact that the people in that room were different weekly.

Anyhow - the result was that my grandmother told her visitors great stories of where she had been. She had been on the pond in the town she'd grown up in. She had fallen asleep in the bed in the supermarket and thank god nobody had really minded her being there.

It was clear to everybody that my grandmother was not in her place in hospital. The hospital could not really do that much for here any more and she was quite literally going crazy. So she went to a nursing home.

Emotionally she improved. In time the stories disappeared and she calmed down a lot. Her memory was still noticeably worse than before she had gone to hospital though.

This weekend my grandmother shocked me by calling me up (thankfully she can still use the telephone) and telling me she didn't know where she was.

I wonder at myself: I can apparently still get shocked.

There have been many clues over the past months that it was hard for her to realize where she was. But the difference was: this time it didn't help if I reminded her that she was in a home. It didn't help to remind her of the name of the home she was in.

Only when I told her to look around and see if she recognized anything did she realize that there were pictures of all the people she loved on the walls. That did calm her down a bit, though perhaps it was just hearing my voice.

I don't know if this is a symptom of Alzheimer's, but recently my grandmother has been happy one moment (especially when I was visiting) and sad, angry, frustrated and lost the next - whether I was visiting or not.

It's frustrating to see that when we try to give her a good time, it takes her some time to appreciate it. Apparently she's less flexible or something now.

This is probably the major headache for many people who visit Alzheimer's patients.

One moment my grandmother seems to understand her situation, the next she doesn't.

This morning she was telling me that she got lost in the mall, but did find her room again. She told me that she accepted that she would never live in her old house again.

This was sort of coherent, if the 'mall' is taken as her word for some place in her retirement home.

The frustrating part came later. I told her I'd be going home and she wanted to get up, out of her wheelchair and go to her old home. It took some convincing to get her to accept that she should stay where she was and that I would just escort her back to her room...

I don't know who my grandmother thought she was talking to on the phone yesterday. But she didn't realize I was the person she was complaining about.

She is moving from one nursing home to another. She has been in the first for 9 months. Although she says she isn't nervous about the new home, leaving the old one has her stressed out. Moving is stressful on anybody, but my grandmother was always one to enjoy it. She likes (or liked) change. Moving things about is something she used to do for fun. Moving herself about is just part of the territory.

But now she was so nervous that what I said one moment really didn't stick in her brain.

Saying good buy

We had talked about how to say good buy to the old home. My grandmother wanted to do a speech. I thought she meant a speech to the people on her floor. It became clear yesterday though that she wanted to say good bye not so much to the people on her floor as to the people at the physical therapy department. By then it was too late to change things, and doing the speech didn't fit the culture on the floor she was at anyhow.

So the much talked about saying good buy turned out quite flat. She didn't get to do her speech. She didn't get a group of teary eyed nice people waving her out.
This fits: she isn't very popular with the people on her floor. This is partly to do with the fact that she is plain difficult (half deaf, doesn't understand half of what's going on) and part to do with the people just not being 'her style'.

But my grandmother has been an organizer all her life. She is the type of person that can go to the local market and meet half a dozen people there who know who she is and want to talk to her. All of them people she will have forgotten.

So she is used to being known and being appreciated. She is still appreciated. She has an extra ordinary amount of visitors still coming regularly: about daily in fact. She still has people writing to her. And she still manages to sometimes write back.

The difference is: those are people who know her from way back. People that know what she likes, what she's interested in etc. There is a relationship to build on, even if my grandmother is forgetting the details of those relationships as time goes by.

But on her floor - she's just a difficult old lady. I do think she's sort of popular with the staff. They are certainly nice to her, and she appreciates it (and therefor is mostly nice to them, except for tantrums).

Since I've lived with her the three years before she went into that home, our relationship is quite close. I'm one of the few people she can call during the day time - because I work from home, I can fit in a listening to grandma session here and there.

I was also the one who bought the chocolates for the staff and the pastry for the residents - but I'm afraid my grandmother ended up missing all that. The main event she wanted didn't come.

And it was my fault. I hadn't listened well enough. I hadn't involved her in planning it enough. And who did she complain to about my faults? First to me, to my face. That was alright in a sense: at least she realized she was complaining to the person who had done all that. And she had the grace to realize that I'd put in a lot of effort.

But then, later that evening, on the phone... She called me to air her problems, she said. Katinka (that's me) had messed up the saying good bye. Was she going away the next day, or the day after? The next day, I told her. I told her she could still say good bye to the staff tomorrow morning, but nothing else could be done at this point. I also told her what I'd known for 6 hours by then: the home wasn't used to people giving something of a speech on leaving.

I do think that was the crutch of the practical problem. But underneath the problem was that my grandmother just can't plan these things as she used to. She can't communicate very well what she wants, nor does she know who the people she has to say good bye to are. The emotion is still there, some of the sense of what's right is still there - but the pieces no longer fit.

I got the blowout of that disappointment. Now I hope the rest of the family doesn't start blaming me as well...

[They didn't by the way.

My grandmother settled in reasonably well in her new home, but two weeks later she still needed me to explain that this was where she was going to stay for a long time.]

[note]9 months later she still doesn't always know that this is where she's going to stay. I've given up telling her that. Instead I tell her that she can go back 'home' tomorrow, knowing that by then she will have forgotten what I said anyhow. She does realize by now that it's a good place, where she is. [/note]

Having been in her new home two weeks now, my grandmother and i set out to buy flowers at the flower stall in the hall. [yes, it's a great home]

I got one bouquet, for just having moved house.
Another bouquet was bought for 'the hostess'.

So we went to the living room on her floor to find out who would get the flowers for 'the hostess'. We went and asked the first person we saw who the hostess was.
She said - 'that's me'. So I gave her the flowers in my grandmothers name. She went all flustered - I'm not sure that's allowed. But she thanked my grandmother profusely for the flowers, with tears in her eyes.

For my grandmother the flowers were successfully delivered to 'the hostess'. A social grace successfully performed.
To another guest in the home it was a great day - she got flowers for being 'the hostess' - a role I'm sure she had performed often in her life, but perhaps not now...

[If you still didn't get it - the follow up should clue you in:

One of the volunteer helpers made sure our 'hostess' found herself a vase to put the flowers in.]

My grandmother is always happy to see me. Thank god you're here she says almost invariably as I turn up.

Yesterday she went on to tell me that she'd had a note from my uncle Francis. Francis had just left her here, she said. What business did she have in this place with nobody to talk to?

My uncle Francis is her most devoted son. He did her whole room before she came here. He keeps her finances. He lives closest, so she sees him most often: twice a week at least. He takes her to concerts. Had taken her to a birthday party just the day before.
But - this means he can also do more things 'wrong'.

Another uncle had bought a closet for my grandmother earlier. But something was wrong with it, so it had to be fixed. This was left, obviously, for my uncle Francis. He had gone to the home to fix the doors - only to find that my grandmother wasn't there - off for diner or something.
So when he was finished, and on his way to my house to help me with some stuff, and then on to dinner (you can see what kind of man he is) - he wrote a note to my grandmother that caused her such grief: why am I left alone here?

It took me some time to explain to my grandmother that my uncles (who she blames for her stay here) really had her best interests at heart. That really her leg would make it impossible for her to live on her own. That Francis would come and visit her tomorrow. That a lot of people live near here, and that the service in this home is great.

BTW: she seems to think, with at least part of her brain, that the home she is in is ALL HERS. She's used to having tenants, so she said: It's alright that those people are staying here, what use have I of all that room? How long do you think they'll stay?

We're quite lucky really. Despite all the negatives this lens has recounted, my grandmother can still be a hostess, a calming mother, a great listener, and eloquent.

Every story one tells is partial.

When talking about my grandmother, I find myself telling people about the time she went out on a busy street scattering her stuff around. Or about how she no longer knows which son visited her yesterday.

But people who actually meet her are (still) usually impressed.

She is generally (not always) calm and forbearing. She remembers to thank the nurses for each cup of tea or coffee. She is grateful for each visit. She knows to offer me chocolate, though she forgets to not offer me wine.

I can even tell her about my online work - though I have to explain it in terms she can understand. It does tax my didactic skills, but I'm quite up to the challenge.

I recently did an interview with her about the most influential spiritual teacher of the last 100 years - and she had a fascinating look at World War 2 for me.

My grandmother was sick this week. Some virus infection. Her conversation did not make sense. She could no longer keep the thread of what she was talking about. Perhaps worse: she also could not keep the thread of what I was talking about. She kept on nodding off as well.

She still cared. She was happy to see me and sorry to see me go. But it no longer felt like the person I'd lived with for a few years.

Very sad.

Part of me clings to the idea that she may mentally improve when her body is back to normal, but I'm not sure that's realistic. I see the signs of that next stage in dementia: when those old people just sit there with no spark left.

My grandmother had 5 kids. Smart, hard working, busy kids. Most don't live near her. One lives in the US, while she lives in a Dutch retirement home.

She misses her kids. She misses her grandkids. She misses 'people she knows'.

Yet we, her family, aren't doing to badly on most counts. I come twice a week. My uncle, one of her sons comes twice a week. His girlfriend works in her retirement home and will drop in on most days for a quick hello.

Some of her kids arrange outings for her: she will be driven to the home of one of her kids and spend the weekend there. Listening to her sons performances (he is a professional singer). Seeing his new house. Enjoying some time in my mother's garden.

Yes, it is tiring for her. Some people in our family feel she should be protected from such exertions. Others feel - like I do - that since it makes her happy, it does not really matter if in the end it will turn out it shortened her life.

Because she misses her kids.

My grandmother is in an old people's home. She has no idea how long she has been there (a few months now). She struggles to remember that they take care of her. So the eternal questions that comes up are:

Where should I go?
Where should I buy my food tonight?
When will I go home?

She calls me up regularly with those very questions. When I tell her visitors will come she usually calms down. It seems at the root her unrest is more related to loneliness than homelessness.

It's still very sad - and whatever I say to help only helps for a bit, because she is likely to forget my answer.

How to describe the phone calls I have with my grandmother. They are quite surreal. My once well spoken grandmother can no longer find her words that well. So part of my job is to figure out what she's really thinking.

Today she phoned me with the question whether I could take her to go see her parents. They are long dead: I have never met them. So I told her no: I could not do that, because they were gone. She said: don't tell anybody about this. This is embarrassing. [Sometimes she also wonders where her husband is. He's been dead for nearly 10 years now.]

I'm breaking that promise. One of the things about dealing with demented people that I learned very quickly is this: don't feel guilty about lying.

I have caller id on my cellphone, so I know precisely where my grandmother is when she calls me. So when she says she is somewhere in town, I know she has no idea where she is. I remind her that the room is in is her room by asking her to look at all her familiar things in the room. She said: right.

Delusions: my grandmother says she's gone eat somewhere in town around coffee time yesterday. I think she just ate in the retirement home she is in. But since she doesn't really remember, she sees it as new most times.

More delusions: my grandmother sometimes talks to me like I'm her daughter. In some cases she seems to see me as her oldest daughter (my mother). In others I'm just an extra on top of the kids she really had. One time my brother and I were visiting her together and they asked her how many kids she had - she said 7. Since she really had 5, I assume she was mentally adding my brother and me to the bunch.

At other times she's perfectly clear about who I am. Asking specific questions about my health, that fit my medical history perfectly.

It's been months since I last wrote here, but what I wrote last time still pretty much fits the bill. Except now sometimes she accepts that she doesn't know who everybody is. She asked me one time where her brothers were - I said they were long dead (she's the youngest of 9 siblings and at 86, they are all gone). She said - you know I don't mean that, I mean the boys. So it turns out she means her sons. Apparently that has become one category - the supportive men in her life: her brothers, her sons.

But I wanted to write about what DOES go well. My grandmother has been in an institution since the operation in which one hip was removed 9 months ago. She seems to have somehow learned to manage that situation. She no longer tries to walk everywhere, but appreciates the wheel chair as a good way to get from A to B. And since she's so very fidgety, this doesn't mean she's not using her mucles, she is - she's just no longer overdoing it.

I found that out when we went biking together. The institution has a two person bike (a three wheeler) and my grandmother is one of the few people in the whole building to actually enjoy the ride. In fact she still enjoys biking along - which is good, Leiden has a lot of steep bridges that I probably could not get over without her help.

Also good news: she's getting used to the institution. While she still calls me up occasionally to arrange to 'go home' (which I can't do for her), she now also often says how nice 'the girls' (aka the nurses) are.

What you have to understand is that the good and the bad is all mixed up. The mental deterioration continues. Alzheimer is progressive, which means that it only gets worse. And that implies confusion and frustration about being confused and so on.

I'm told that once she forgets so much that she no longer realizes that she doesn't know - that's when it will get easier. But for now my grandmother does know it is strange that she doesn't know whether her husband died. She is hopeful it will get better (I don't tell her she's wrong, but I don't strengthen the hope either) because the idea of it getting worse just can't be contemplated.

About the practical stuff:

I was skeptical about this at first, but my grandmother seems to have learned that the red button is the 'call for help' button. I'm not sure she knows that well enough to remember in an emergency, but it's not totally useless.

My grandmother is always asking for her children. I'm sure that when I'm not there, she asks for me. But when I am there it no longer really helps. She's still restless. She still wants to see her kids. She still wants to be taken 'home'.

It's very sad. My grandmother is very sad. She wants her family around, but when they are, she's constantly worrying about the future when they'll be gone. She fights her sadness though. She still has some sense of the appropriate: when I go away, she pretends to be strong and will make the best of her situation, making it easier to leave.

Still, it's tiresome to visit her, because it's just never enough. Very little can make her smile. Very little will make her comfortable. Today a hug at least made the tears come a bit, but she told me to stop, because she did not want to cry. Which is sad too.

She's conscious enough of the reality of things to realize that to be so afraid of being alone isn't normal, isn't healthy. She calls herself pathetic. Which of course does not help. It merely makes her feel guilty. But since she'll forget every comforting thought, it stands to reason that she needs people around her in order to not be too upset. But she also told me today that it is very easy to be alone amongst people. What could I say to that?

It's all heartbreaking.

This lens is my personal story, but I hope to keep the details about my family as vague as possible so that their personal space is respected. Also - the pictures in this lens aren't of me or my family members.