Dealing with Alzheimer's - my personal experiences

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A personal account of dealing with Alzheimer's disease

This lens is a tribute to a strong, intelligent woman who struggles with Alzheimer's - and to her kids (my uncles and mother) who fight to keep her life as fulfilling as possible.

The lens is written in chronological order: it's my experience of the starting of the problems and then how they progress.

This is my grandmother to the left, two years after diagnosis.

About Alzheimer's Disease and Neurology

This lens is my personal journey. If you want to learn more about Alzheimer's and how to deal with it, check out these links.
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Dealing with Alzheimer's Disease

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.
Important!

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.

The early stage: forgetfulness, losing things

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.

The early stage: what's socially appropriate?

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?

Dealing with the stages of dementia

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

In hospital - going crazy

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.

Dealing with Alzheimer's - the challenge

Below are some of the possible responses people can have with family members going through this. How did you react? What have you seen people do in your family?

Emotional response: Let's keep her cared for in the family as long as possible

6 points

Rational response: let's find a good place for him/her

5 points

Denial: my family-member isn't demented

1 point

Avoidance: not dealing with the problem

1 point

Let's talk about the inheritance

What to do with the house, the stuff etc. now that more...0 points

Broken-hearted: What now?

My maternal grandmother has Alzheimer's and it's h more...0 points

Good care - improvement

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.

Where am I?

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.

It's tempting to only show pictures of my grandmother happy, but I don't think it's fair. This is an appropriately badly lighted picture of my grandmother trying to make sense of her world.

Moodswings

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.

On a good day

My brother telling a story

Conversations that don't make sense

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...

Complaining to me, about me - how to say good bye

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 bye

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.

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.

In a new home - buying flowers

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.

They've just left me here....

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?

Yet it's not that bad...

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.

The first time it didn't feel like I was visiting my grandmother...

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.

It's a family affair...

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.

Where should I go?

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.

Alzheimer's on film

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Delusions and strange stories

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.

An update - about rationality amongst the chaos

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.

When family is no longer enough

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.

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When sentences no longer make sense...

18 months after diagnoses

My grandmother was a very vocal woman. She wrote children's stories. She told stories. She created hand puppet plays. She read. She read TO us. She organized social events for church, for the choir, for a local old people's home. But lately reading is getting difficult. Finding her words is getting hard. Sentences no longer make sense.

She spent about a quarter of an hour just now, trying to decipher a Christmas card. It was a very simple card. It started with a greeting (in Dutch). Then the basic message: 'Wishing you happy holidays' (also in Dutch). Then printed on the card by the manufacturer in fancy letters: 'Merry Christmas' (in English). Then the name of the person who sent it.

She read it, she reread it. Each time she read it the result was different. Sometimes it sounded a bit like what it said. Usually it didn't. I was called on in quite a few cases to read the text to her. Is that all? Yes that's all.

Only for the whole procedure to start over again. In the end I took the card away and hid it in my purse.

I'm sharing that story because it's pretty straight forward. Writing about how she is now, is hard. It's heart breaking. She still very much tries to talk about things, but it gets harder to understand what she means, because often there isn't a decent storyline any more.

At the beginning of this lens I shared her delusions. I almost wish them back, because there was some semblance of order to them. She thought she was on a trip, in Amsterdam usually, and while it was obviously nonsense, it made sense.

Now there doesn't seem to be a relationship between one sentence and the next. And many sentences make no sense to me at all. My grandmother spends a lot of time trying to find words for her experience, for her questions, for her worries - but how it feels to have worries she can't put into words is hard to imagine.

Update
It appears that the nonsense in her words was partly the effect of medication. She was on Diazepam (aka Valium) for a while, to stabilize her moods. That worked, but it also made her sleepy, incoherent and impractical. Fortunately, this is a good nursing home, so they replaced the Diazepam with a simple mood stabilizer.

That doesn't mean I think her current relative coherence is going to stay, merely that the medication worsened this symptom.

When the world no longer makes sense

2 years after diagnoses (roughly)

I previously wrote about sentences no longer making sense. Well, we're now at a point when my grandmother is often unable to understand anything I have to say. Her words also don't make much sense to me anymore. She talks as much as ever, but trying to find a meaning in the words is just hard. Weirdly enough, at the moment, her sentence constructions are still flawless and her vocabulary just as upper class as it's ever been. But there is just no longer any sense there.

I think this has a lot to do with just not knowing the words to things anymore. So she just uses another word that comes up in her brain.

She was looking at a table the other day and clearly wondering: what's that? The table cloth was hiding part of the table leg and she clearly could no longer make sense of what she was seeing. I pulled up the table cloth to show her that it was simply a table she was looking at. Thankfully, then she got it. One of the few instances of communication that worked during that visit.

Similarly looking at a bookcase she was counting the layers and clearly wondering what the heck it was. Unfortunately, I wasn't able to get through to her on that one. Distraction worked though.

In short - we're now really losing her. I mean: what kind of identity can be left to a person that no longer knows the structure of the world? And, in such a talented lady as my grandmother used to be, what's left of her when her words fail her?

All isn't lost yet though. She clearly realized that when I went away, she'd be left sitting with some old ladies in the nursing home she's living in now. She also said at one point 'the connection isn't there', when we were clearly not communicating very well. At the end of the meeting she was actually able to follow instructions on pulling up her legs to be able to get out of the machinery that's there to help her onto the toilet.

Thanks to medication her mood is reasonable these days. Anti-depressants: the savior of not only her mood, but also the nursing staff's ability to do their job.

When a granddaughter becomes a neighbour and sister

Two and a half years after diagnosis

I found my grandmother in the cafeteria where she was drinking coffee with some volunteers. It took some stuttering, but she remembered my name and proceeded to explain to the volunteers that I was an old friend from her youth in Amsterdam.

Later in the conversation I explained I was a granddaughter. She took this as the best present ever. She was all amazement at having a granddaughter. So I explained that she had several: I summed all four up. At the end of the list, still happy at the riches of having granddaughters, she did think it was a bit boring that there were no boys. I made her day by telling her about her six grandsons. Starting with my brothers, stopping at my scientist cousin (which my grandmother thinks is the best career choice ever - I did disenchant her), and so on through the rest of them.

It was a happy surprise for her to have ten grandchildren. No murmur as to not having been told about them before. No sorrow at having missed their lives. Just amazement at having so much offspring.

It was a good day.

We looked at the picture of her and her siblings a bit later, her treating me like a sister. As my grandmother was the youngest of nine, her siblings have all died by now. Most of them I never really knew. I'm getting used to being mistaken for other relations though. Today I wasn't just a neighbor, but a sister as well.

When I left she too wanted to go home, but it was easy to convince her that since her food was coming up, she had better stay where she was.

Humor in the nursing home: about body language

As I walked into the community living room, I saw my grandmother talk animatedly with her neighbor. Coming closer, I could hardly keep myself from laughing, because the conversation made no sense at all. Each lady had her own stream of thought - with recurring themes and some sense to it - but neither said anything that had anything to do with what the other was saying.

It's great to see my grandmother so at ease though. And whether or not their conversation made any sense, clearly did not matter to the talking parties. They just enjoyed each other's company, and the expression of whatever there was left of thought in their heads.

I knew this stage was coming: body language is now more important than words. Not that my grandmother no longer uses words to express her confusion: she still does. But when she talks, she starts a sentence, and by the end of it, does not remember what she was trying to say. So the sentences become very long. Similarly, anything I say is likely to be forgotten the next moment. So my body language has to give the main message.

  • Like getting rid of the tea when it's finished (or she might try eating the tea bag)

  • Like putting on my coat when I'm about to leave (or she might keep me listening all afternoon)

  • Like standing up to make sure we make it to the sing-along (or she might keep talking - she does a lot of talking)

  • Like holding her hand when she's upset: way more comforting than any words I might use

Beyond chaos, into new order

Almost 3 years after diagnosis

Rereading this lens, the changes are immense from when I started it. We're all used to my grandmother not knowing where she is now. In fact, she's so far gone that she doesn't really realize she doesn't know where she is. She still vaguely wants to go home, but can't hold on to her thoughts long enough anymore for that to be a problem (for us). Quite a change from her getting stuck in one thought and not being able to go beyond it.

When I was visiting her in her (thankfully great) nursing home last week, she was as chatty as she used to be. The stories had some inner consistency, but no relation to what was going on in the real world any more. My grandfather was alive, they had gone to church together with the kids. The kids had surprisingly wanted to sing in Church... Well... that last bit had something to do with what we'd just been doing: sing in church. There's a lot of singing in this nursing home, which my grandmother can in general appreciate.

With this new found (probably temporary) balance... Can I even say that? It was probably as temporary as my visit. Anyhow, the thing was, when we were singing in church, half way through, she was calm enough to realize that even though she was bored, people would mind if we left. During the past few years emotional chaos was usually way stronger than any sense of what one ought to do, or what other people thought. I guess now the emotional chaos was less, because she's no longer 'there' enough to realize how much she's lost. And the result is an actual return of (some of) her sense of proper behavior.

Miracles never cease. Of course with everybody realizing how gone she is, she can actually leave church half way through a service and people will be tolerant of it. However, it's nice that she still has some sense of propriety.

When words start to fail

That last bit was a bit optimistic. A week later my grandmother was saying things like (and it's hard to remember the things she says that make even less sense): "The tea isn't wet enough" and doing things like drinking out of a ring. I mean, I'd seen her drink out of a saucer on one occasion, but a ring? I mean - at least the saucer had actual tea in it, which of course she'd just pored in there. Pretty embarrassing, but there was still some sort of sense to what she was doing.

At one point her tea was cold. I was trying to persuade her to drink it anyhow, because she used to be the kind of person who didn't throw anything away. She looked askance at a guy passing, and when he had passed (this was in a cafeteria full of people mind), she threw her tea under the table.

Her world has become so fragmentary it's getting harder and harder to relate to. Listening to her is more and more frustrating. The one positive thing about it is that she no longer abides by the rules of conversation long enough to inquire after my ideas about the things she's talking about. Which is good: coming up with an appropriate response to nonsense is rather tough.

Holding hands - physical contact takes over

Almost three years after diagnosis

At this point my grandmother still talks, but what she says rarely makes sense.
She still listens, but rarely understands what we try to say.
Short phrases may get through, but longer sentences definitely won't.

The result is that there is hardly any meaningful conversation any more. Even talking about the tea we drink, the chocolate we eat is getting hard.

However, the physical is still there.
Getting my grandmother to drink a cup of tea is no longer about saying anything, though I still do: it's about gesturing to the cup, or handing it to her.
Something physical in fact.

Holding hands is the best way I know right now to make my grandmother realize I'm there instead of phase out. This is especially necessary when there are other people there. It's as if that triggers her not realizing anybody she knows is there.
If I hold her hand though, she'll usually grab on tight: as though it's an anchor for her.

Don't get me wrong: she generally doesn't know WHO I am anymore. I'm her daughter, my mother. I'm a sister. And I generally only find out that I'm not seen as Katinka when we watch pictures together.
However, she still sees me as familiar.

One day we were looking at pictures of family on a day she called me by my mother's name. Curiously enough, when we looked at a picture of me, she didn't recognize it as me. When we were looking at a picture of my mother, she said: there you are!

I've been expecting the physical to become the main line of communication ever since this started.

I do wonder how long till words make no sense to her any more at all. Today at least, when we were looking at family pictures, she was reasonably coherent. Even if the rest of the visit what she uttered was chaos.

Words failing completely

A little over 3 years after diagnosis

Last time I wrote here I was wondering when my words would stop meaning anything to my grandmother.

That is still a worry, but harder to deal with is that my grandmother continues to talk, continues to have a very lively and engaging manner, but what she says means absolutely nothing 90% of the time.

One of the things she said that did make sense yesterday was that she didn't feel there was the usual intimacy of my visit. She was right: we were sitting outside sharing a table with another patient (not an alzheimer's patient) and their visitors. That was because I am really starting to have trouble dealing with my grandmother as she is now.

As in: how do I respond as though I am interested in what she has to say if there is no sense to be found in what she's saying?

It's a very sad affair. Having people to have a normal conversation with at the same table was comforting.

Don't get me wrong: my grandmother wasn't very unhappy: she enjoyed the coffee and cake and sitting in the sun. But we were not quite aligned in what we wanted, because for me being alone with my grandmother is now getting decidedly uncomfortable.

I was a bit too pessimistic last month. It turns out that when I take my grandmother out for a walk, something she always enjoyed, she becomes more lucid. Her words start to be connected to a reality that I live in as well. We were able to have a conversation about who I was (her granddaughter as opposed to her daughter), about her new grandson (son of her new daughter in law) and the groceries we were doing.

All that is MUCH better than her talking about who-knows-what... I think I'll be taking a LOT of walks with her in the coming months.

The physical stuff...

This week the family got quite a shock: the caregivers have decided that there is no longer any point in putting my grandmother on the toilet. She needs assistance getting on and off (she's in a wheel chair) and doesn't do her business there any more. No point.

This is tough. It dehumanizes her. Still, it's true - while with me she still wants to go to the bathroom, if nothing happens, she'll just forget about it.

Your experiences with alzheimer's

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  • Reply
    Krishan Feb 2, 2012 @ 7:12 am | delete
    It's indeed a very sensitive piece of writing. This article has helped me understand what one of my uncles is going through currently. He's 84 with frail body, but remembers the address and the location of his old home. Day before yesterday, when I took him there, he was not willing to return. He could not recognize any of his next-door neighbours. Spending sometime with him beside the road (his old home is not in use for the last many years), and showing all my empathy I could bring him back to our home. The next morning, he did not have any recollection of the previous day-long affairs. But he keeps on repeating his address and yearns to go there.

    It's rather sad that he wants to go to his old home which is not habitable, and he cannot plan how he would live in that house. Sometimes I feel that he's stuck with his home to the extent that he remembers only that and nothing else of much import. I have spent time with him, but any number of times I visit him, he does not recognize me. Even polite reminders are of not much help. The only thing which makes him talk to me without much difficulty, is the empathy and patience I extend towards him. Being non-judgemental helps me to have a long conversation with him, and an occasional smile on his face, assures me that this is one of the ways to attend to such persons.

    Wish there are some effective medicines for such elderly persons.
  • Reply
    PlasticBeach Jan 20, 2012 @ 1:03 am | delete
    This is a very touching, detailed account and I'm pleased yo chose to share. As my grandmother's mental state continues to visibly deteriorate, my family is slowly accepting the reality of her disease. My experiences with my grandmother are so very similar to your's it is unbelievable. My family however, chose to keep her at home, due mostly to the stigma associated with the disease but we were able to arrange a live-in caretaker. Although she is in the same house she's lived for many decades, she constantly asks for someone to take her home. When I visit, I'll explain that she's already home but she doesn't accept it.

    I too had a conversation with my grandmother where she was talking to me about me. In my case, she told stories of how much she loves me, and of the trouble I will most likely try to get into when I get home from school. She spoke of how my grandfather has not yet come home but he should hurry or I will get upset when I get home from school and grandfather isn't there. My grandfather passed away 8 years ago, the period she was speaking of, I was about 10 to 12 years old. This conversation took place just last year. It was heartbreaking to sit in front of her, with her not realizing that I am that child she's speaking of, who she nurtured for so many years. I probably would have cried if she wasn't so vibrant, so energetic as she spoke. I am pleased that I was able to capture that moment on film as there are not many moments where she seem happy. I try to visit with her once per week, she rarely recognizes me and immediately breaks down as soon as I say who I am. She gets in bouts of incoherence, often trying to spell the words since she can no longer find them but gets frustrated after she's had to repeat the first few letters because she's unable to finish. She cries alot, it's very depressing. My mother and her siblings all have different reactions to the situation, justification, avoidance, empathy, blame on someone else. It's sad because it feels like such a sense of loss, and helplessness. My grandmother will be 85 this year, the worst pain is to see her suffer this way knowing that not even 10 years ago she was the force, the strength behind my family. My heart goes out to anyone struggling through this situation with a loved one, it's not an easy road to travel.
  • Reply
    Luv2help Nov 26, 2011 @ 4:12 pm | delete
    Your lens is very similar to my experiences with my mother-in-law. It's a difficult time for all. Thanks for sharing.
  • Reply
    Ann marie Sep 30, 2011 @ 4:00 pm | delete
    Katinka, today has been one of the harder days for myself and I came to Google looking for help or just someone who knew what I am going through with my grandmother. I'm so glad I found your page. It has given me such insight on things I don't understand and the things to come. I would love a chance to talk with you if it is something you might be able to manage. My e mail is amstanton@yahoo.com I find myself wondering what to do next... Thank you so much. My heart goes out to you and your family as well as everyone else experiencing this.
  • Reply
    spirituality Oct 1, 2011 @ 2:01 am | delete
    Mail sent, though I'm not sure what I can do.
  • Reply
    lakeerieartists Sep 30, 2011 @ 12:57 pm | delete
    Very moving account. I went through some of these same things with my mother in law. My heart goes out to you.
  • Reply
    Alexandre Narten Sep 30, 2011 @ 10:34 am | delete
    Hi Katinka,

    Your dairy has been a great comforting read. Thank you ever so much! Bless you!
  • Reply
    mbgphoto Sep 14, 2011 @ 4:56 pm | delete
    Thank you for a wonderful lens...my Mom has alzheimer's and your words were helpful. Blessed.
  • Reply
    DavidDove Jul 14, 2011 @ 11:44 am | delete
    This lens is just so helpful, everyone should read it. I will be directing traffic from my own lenses if I can work out how to do it, I'm no techie. Thank you, a very comprehensive picture of what it means to be involved with Alzheimer's - and for all your other inspitational lenses.
  • Reply
    madelaide Jul 8, 2011 @ 4:11 pm | delete
    My aunt had Alzheimer's but was able to be cared at her home. However, at some point she started believing this was not her home, she was just visiting. She had been a very active woman and it was sad to see her become someone else, living in her own world, not recognizing any of the people who had been part of her life.
    A geriatrician told me that Alzheimer's is diagnosed by excluding several other forms of dementia. However, people normally infers that any elderly person showing memory loss is suffering from Alzheimer's - this is completely wrong.
    Keep up the good work, Donna, great information here.
  • Reply
    Donding Jul 8, 2011 @ 12:27 pm | delete
    I understand what you are saying. My grandmother died at age 82 not knowing who anyone was and not knowing where she was. It was a blessing when she passed because I felt she was finally at peace and the suffering was gone. Now my mother was just diagnosed with early stages of Alzheimer's and we have another long road ahead of us. Thank you for writing this and hopefully help others to understand what this disease is like and what to expect and how to deal with it. It brought tears to my eyes.
  • Reply
    bames24 May 26, 2011 @ 12:02 am | delete
    this is a great lens... My Mom has dementia and she tends to forget a lot of stuff... I know it is different from Alzheimer's but I can understand some what you went through... Thanks for sharing a great lens :)
  • Reply
    Ladymermaid Apr 16, 2011 @ 3:02 pm | delete
    This article would be excellent int the healthy living - aging categories too. Best wishes.
  • Reply
    Helene-Malmsio Apr 6, 2011 @ 11:11 am | delete
    Your stories here made me cry (but I did get one laugh out of the two ladies talking together in two streams of conversation) as Alzheimer is such a tragedy, as the family watches helplessly as the person the know and love fades away forever in small stages. It is good to see her surrounded by a family that loves and cares about her.
  • Reply
    LeanneChesser Apr 1, 2011 @ 10:07 am | delete
    Wow. Thanks for sharing your story. Blessed!
  • Load More

On confidentiality

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. I have however used my own pictures of my grandmother to illustrate.

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