Dealing with Alzheimer's - my personal experiences
A personal account of dealing with Alzheimer's disease
This page is a (very long) tribute to a strong, intelligent woman who struggled with Alzheimer's - and to her kids (my uncles and mother) who fought to keep her life as fulfilling as possible.
The page was written in chronological order: it's my experience of the starting of the problems and then how they progressed.
She has now passed on - we remember her with fondness. In the end she was so gentle and soft, that my main memory is love.
Responses to this page, from previous online publication elsewhere, are mostly listed at the bottom.
This first picture was taken 2 years after diagnosis.
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.
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.
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.
As you can see by the picture: my grandmother was still able to read at this point. However, that ability was declining pretty quickly. The expression on her face suggests though that it's already a struggle.
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.
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 now.
On a good day - My brother telling a story
I do mean a story: My grandmother used to write stories for children and my brother is there reading her a children's story he wrote. As you can see, she's fascinated.
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?
This home had a tricycle on which I took my grandmother out biking. Doesn't she look well? The picture is taken about the same time as the above story was written.
Thank you so much for sharing your experience in vivid detail. You seem to have come to a peaceful place about some of your grandmother's anxious statements about being in a care facility, but I had to register to tell you and anyone else who might happen by that the sense of displacement is, for some (perhaps many) patients, simply part of having Alzheimers.
My family has cared for my grandmother in my parents' home for about 15 years, and she has been noticeably deteriorating for 5. She has lived in the master bedroom of the same house for nearly a decade and is surrounded by familiar things and people she has known since they were born.
She frequently begs family members to drive her home. Packs up to leave. Tries to "escape." Makes plans to leave and tries to gain co-conspirators. She will exclaim, "Thank goodness you're here! They left me here all alone!" to someone she saw fifteen minutes before.
Family members who made the loving decision to put an Alzhiemers patient in a safe environment staffed with professionals sometimes feel guilty when the patient expresses their restlessness and anxiety with these types of statements. It is not a true reflection on who is caring for them or where they are, even when it sounds that way. It's simply a facet of the disease.
Yet it's not that bad...
We're quite lucky really. Despite all the negatives I have shared here, 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.
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.
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.
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.
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 page, 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.
Nothing much left to say
Almost 4 years after diagnosis
In the past month or so it's become a surprise if my grandmother recognizes me as 'known' instead of me having to introduce myself. Her words make no sense any more. In general it leaves me with too little happening when I visit to even report something here.
Still, in some ways she seems to have recovered parts of her personality that were previously buried. The other day she was obsessing over the closing sentence of an (imaginary) postcard. Was it too bland to just say 'love Jan and Nel'? - signing as she would have with her husband still alive. I told my mother that story and she said - so like my mother...
When drinking tea in the common sitting room she addressed one of the other ladies as Mary - one of her closest friends. Of course the lady in question wasn't Mary and didn't really respond at all, which my grandmother didn't really mind... It's partly her memory deteriorating further that makes it possible for these personality traits to resurface.
The best example is probably that she no longer minds singing out of tune in church. In doing so she shows her love of music in a way she could not have 6 months ago when singing in tune was still on her conscious agenda.
The picture shows my grandmother with the teddy bear I sometimes give her to hold. She does talk to it occasionally, but generally just likes holding it I think.
Words coming back: ups and downs
4 years after diagnosis
We've seen my grandmother deteriorate when ill and get better as her health improved a lot over the past few years, but this year the impact of physical health on mental health was drastic.
Nursing home personnel is used to taking drastic changes in mental capacity as a sign of illness. After her last pneumonia (it's become a yearly pattern for her) she became hard to talk to, as I've described above. I didn't make the connection till I noticed one day that her words had started making some sense again. She saw a (dead) brother in law in the cafeteria, I was her daughter again... Not signs of mental health, but definitely better than having her mumble stuff that didn't mean anything at all...
Her suddenly being more awake had a lot to do with the staff deciding that she needed more sleep, which the doctor connected with the pneumonia she had had 6 months before and had to still be recovering from. Even healthy 50 year olds take up to 6 months to recover from pneumonia we were told. A grandmother at 90 should be expected to take a lot longer, about a year perhaps. Still, after 6 months she is recovered enough to be able to respond better and talk more intelligibly, thankfully.
Lesson learned: illness affects mental health a lot in Alzheimer's patients, small changes can make a big difference and enjoy what you can with your loved ones...
Like a stranger
4 and a half years after diagnosis
My uncle told my mom last month that their mother no longer recognized him. Another uncle was (finally) shocked at my grandmother's condition. When I saw her last week it was the first time that my my grandmother did not recognize me as somehow familiar. Although the relationship has been vague for ages - I'm a sister (she had several), a daughter (my mom) - I was generally recognized as kin.
This time she asked me whether I had come to visit her. I said yes and she proceeded to treat me as a welcome stranger come to take tea.
In Dutch we still have the distinction between 'je' (du in German, tu in in French) and 'U' (Sie in German and vous French). I was always 'je', being a granddaughter after all. This time around I was 'U'. My grandmother was polite, told rambling stories without head or tail, but never made the recollection that I might be more than a friendly stranger.
It's not all chaos yet - although the stories and sentences on the whole didn't make sense, my grandmother did note with a familiar wry sense of humor that she'd never been patient. Since I'd heard her complain of that sin often, and had known it to be correct, I assented warmly. When she talked about her 'boys', I assented to her words in a way that made her ask if I had boys of my own. I don't, I told her, however, I know yours (my uncles). I shared that I was her granddaughter - one of her 10 grandchildren. Yes - she had roughly that amount, she acknowledged. She was happy to learn I was a granddaughter, but that didn't make me any less a stranger I don't think.
Not all short term memory was lost either. I had mentioned, after her question, that I lived in Leiden. Half an hour later she asked me something about that city.
The image here is of my grandmother after I had just cut her hair. She no longer insists on wearing her hair in a bun and short hair is easier on the help. My mom told me my grandfather would have preferred she wore her hair short. I have to agree it looks better on her, don't you?
6 Years After Diagnosis
Since the last time I wrote on this page, not much has changed - except that every symptom got worse. My grandmother slept more, had less energy, her words made less and less sense etc.
Fortunately when she was with the family, her mood remained good to the last. She did have a stubborn violent phase early on (mostly in relation to incompetent nurses), but the last few years she was mostly just happy with any positive attention she got.
Earlier this year my grandmother got another pneumonia. Alzheimer's is lethal - in the long run - but pneumonia can be treated. The doctors were ready to start antibiotics, but the family decided that they didn't want to put my grandmother through it.
We knew that when she was still lucid, she had wanted to have a living will made up - so she would not have to live through situations like the one she had lived through over the past few years. We knew also that our grandmother was not likely to recover to the extent that she would ever be out of bed again. For us this was a line we just didn't want to cross: my grandmother was always an active person - what quality of life would be left if she was just living in a bed?
So, my mom and uncles decided (with my full agreement) that they did not want the doctors to treat the pneumonia. This is called 'passive euthanasia' in The Netherlands and it basically means that the body is allowed to die (as opposed to active euthanasia where the process of dying is hastened). Instead their would be pain relief, as deemed necessary.
It didn't take my grandmother long to go. The diagnosis of pneumonia was given on Saturday and she died on Wednesday. She did moan some - before the pain medication made her fall asleep. After that it was over within a few hours.
I have been caring for my father for nearly 3 years. It's been nearly 10 years since his diagnosis. He began having difficulty tell time and understanding anything numerical. He lost virtually all speech early on. He never did wander or get violent like some do. Although he is now totally bed bound for the past year, we can still occasionally get a smile out of him. Thanks for sharing your story.
For most of her life, my mother was an unpleasant, mean-spirited person. She always wanted to be the center of attention, so she'd behave like a bratty child to be noticed. She alienated nearly everyone -- my brother and I shunned her, she had no friends, and none of the extended family maintained relationships with her.
As sad as this may sound, Alzheimer's was the best thing that ever happened to Mom. She developed a sweet, loving demeanor and -- possibly for the first time in her life -- she was a joy and pleasure to know. She and I repaired our long-broken bonds, and I was able to love her without reservations.
Now that she's hovering in moderate-to-late Alzheimer's, her "old" personality has started to return. A few days ago, I took her to the beauty parlor and then out for lunch. I was treating her like a queen, giving her my full attention and making sure that she'd enjoy herself. Out of the blue, she picked a fight with me. When I tried to avert the conflict and redirect, she yelled, "Nobody ever listens to me!"
The most distressing thing is that I didn't have a bad moment with "Alzheimer's Mom"; I witnessed the return of "Normal Mom," a person I never wanted to know.
What a shame it is that she couldn't have just stayed in that lovely state of "pleasant dementia," riding a wave of nice memories and sweet moods. The end of her life would have been so much better.
The disease is really hard to deal with. My grandmother takes care of my great-grandmother. She's in stage 3 of Alzheimer's. I think it's 4 though. I'm not sure though. My great-grandmother has been living with us since August of 2008. She made a tear in her spine in February 2010. It didn't completely severe her spine thankfully. She also has Depression, COPD, Hearing Loss, and she can no longer walk. It's really tough on our family. Especially my little brother. One time she told him she was dying so she could get attention. I know Alzheimer's can really mess with your sense of reality, but it REALLY scared him. You also have to remember my brother is 11 and I'm 13. Just be patient with an Alzheimer's patient. Trust me, I know it's frustrating, sad, painful, and very time-consuming. Just treat them the way you want to be treated.
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.
I Wish there are some effective medicines for such elderly persons.
My mom just passed away after about 5 years of progressively worse Alzheimer's (and other ailments). My sister was the one stuck with most of the *caregiving*--because my wife, my family, and I moved 1800 miles away more than 20 years ago. The stress on the caregivers is so bad--I'm glad my sister found an Alzheimer's caregivers' support group in her community that meets once a month and provides advise, counseling, and other help to those with the rough task of just helping their loved ones get through the day.
No one really understands the full impact of Alzheimer's unless they are a closely involved relative or take care of Alzheimer's patients. I am not sure of my typing, because of tears. Thankfully,my Dad passed away last month, after a full fledged 10 year onslaught of Alzheimers, and 10 years of short term memory loss before that. I know what you are are experiencing, and facing. I returned to my parents' home to help take care of my Dad for 5 years, until the delusions and paranoia got so bad, we finally had to put him in a nursing home. I know there are a number of very cruel diseases out there, but Alzheimer's has to be on the top ten list. Even before the nursing home, he did not know his wife of 65 years, nor his only daughter. (He just knew we were familiar). After two years in a nursing home, we were not even familiar. In this case, death was a friend and a blessing.
Sometime soon I will write my own story.
One piece of wisdom from all this - well, maybe a couple of pieces - first, do not take anything as a personal issue against you, no matter how much it may seem to be. Just love her. They don't remember conversations, but they do vaguely remember people helping them feel good. It is the "long goodbye." Say your goodbyes to the person she was, and do what you can to comfort this new, confused being. The terrible truth - there are no Alzheimer's survivors. There aren't any remissions. Help your mom and relatives. Somebody has to be the anchor for the family. And if there are unresolved family issues, it is time to forgive, heal, and help each other through a very difficult time. My thoughts and prayers are with you. Make sure you have a personal support system.
The most difficult part for me, with my father, was when he went through the violent stage. He would have nightmares, and the next morning he would try to kill me. I had to talk him out of this several times. Worse - when I told my brother, he didn't believe me. My brother and older sister could not face my father's illness. It was terribly difficult...
One of my Grandmothers suffered from Alzheimers. Her son and one of her daughters tried to look after her at home but it was near impossible to cope by the time they put her into a home.
Her way of coping was to sit comfortably, watching everything around her as if she were watching a play or a movie. She would even tell her visitors to shhh so she didn't miss the next bit. She talked about her own kids as if they were still very young, talked about looking forward to seeing her first grandchild born (by that time he was in his 40s) and no-one ever really knew if there were moments when she remembered with any clarity.
You might have thought she had carved a lonely place for herself but she was somehow quite happy and not in any distress. The volunteers and staff were all very kind to her and I think she was under the impression that she (finally) had servants around her.