Rhea Boyden

March 28th

My mother tells me that she does not understand why all those people keep telling her that she is not allowed to go for long walks. ‘Which people?’ I ask her. ‘Oh all those people in the house, you know, those other people,’ she lamented. ‘I tell them that if I only have a certain amount of time left on Earth then I am going to go for long walks, but they say it is too dangerous. I did climb halfway up a redwood tree a few weeks ago,’ she informed me. I just looked at her skeptically. ‘And I was sitting on a branch blubbering and asking myself why I had gone and done this,’ she continued, ‘And I realized that there was no one here to help me get down again, they had all gone to work. So I just told myself that I had to go and climb down and get myself out of the tree somehow.’

My mother is unable to dress herself or eat properly on her own anymore as she lacks the motor skills for it. But she is very stubborn and you have to play tricks on her to try and make it seem like she is independent and does not need to be fed and changed. ‘Let’s not put these underwear on you, they are wet and dirty and it would be better to put on a dry and clean pair,’ I tell her. ‘But I don’t have any others.’ she retorts. ‘Yes you do, look here, put these on.’ I finally got her dressed, and she was crying like a baby and stormed out into the field, heading off on one of her walks. I am trying to coax her back because I am worried that she will get caught in another barbed wire mesh as she managed to do last week, apparently, when she stormed off after getting mad at my grandfather; her legs are all cut up from the barbed wire. Of course she fails to see why it is a bad idea for her to go for long walks on her own. My stepdad, who is a physics professor at the university, told me that she just showed up at the university one day. She had walked 8 miles down the mountain on her own. God knows how she managed it.

This morning I was put in charge of my mother and the way I look at it, I now realise I have to be on constant watch, especially as the first thing she announced to me is that today is the day she is leaving. ‘You are not leaving, mom,’ I told her, as I tried to stop her packing her suitcase. ‘Yes I am’ she said. ‘Bill doesn’t want me here anymore and has told me to leave. Can I leave you in charge of the family photo albums?’ she asked. So, I have to be vigilant of two things: one, that she does not run away, and two: that she does not hide, stash, rob and rathole my belongings as well as her own. I need to put a padlock on my suitcase if I hope to leave here with my possessions.

So, I finally distracted her from her idea that today was the day she was leaving and we went out to the pool with a poetry book and I told her I was going to read her some Milton- ‘Paradise Lost’ and wouldn’t that be a nice idea. My mother lives in a beautiful paradise here and why on Earth she would want to go anywhere else is a mystery to me. I have just come from the city and for me it is a paradise found to be away from honking horns and pollution. I love her home with its koi and goldfish pond, chorusing Pacific tree frogs, sycamore, dogwood and crab apple trees. I love to go out and see the flock of wild turkeys strutting across the meadow, gobbling in the morning mist. ‘Let’s go sit next to those lovely lilies and I will read to you, it will be fun.’ I said cheerfully.

Photo of Koi by Tom Filmyer

I read aloud projecting my voice dramatically just as my mother had done in her prime: ‘Of Man’s first disobedience and the fruit, Of that forbidden tree whose mortal taste, brought death into the world, and all our woe.’ I looked up and my mother was not listening to me, rather she was staring into the pond. ‘I guess ‘Paradise Lost’ is not the best topic for today’ I thought to myself. I will read this some other time.

She then told me that my half -brother had been there recently to visit. ‘It was so nice to see him. He is such a lovely young man, I remember the day I gave birth to him.’ she said. ‘You did not give birth to him.’ I gently reminded her. My half- brother has another mother. Now this made her very upset. She insisted through fits of tears that she had given birth to him so what is one meant to do? My stepdad advised the following: ‘Let this time with her here now be a chance for your compassion to reach new heights.’ He said this with a patient grin. The only thing I can do is to write about it otherwise I will go nuts.

As we were staring down the valley from the edge of the pool she told me everything she saw. And I thought I had an active imagination. ‘Do you see the sheep and the volcano?’ she asked me. I see no sheep and no volcano, but to keep the peace it is in my best interest to see these things. Why not?

Photo of Forget-Me-Nots by Debby Clark

April 2nd

I have been reading different blogs and websites that offer advice on how to deal with Alzheimer´s patients and what the typical symptoms are. Two major themes in Alzheimer´s seem to be delusions and outbursts/ temper tantrums. It is important to understand that a delusion is not the same as a hallucination. A hallucination is when your senses are distorted and you perceive something differently to what it is, whereas a delusion is something that the person who is having it really, truly believes it to be the truth. Some of the main delusions that very typically accompany Alzheimer’s are to do with theft, infidelity and thinking that people are acting really badly towards them as well as being extremely paranoid and suspicious. My mother suffers from exactly all of these things. In fact she must be a classic case because she manages quite sweetly to roll these into one sentence sometimes such as when she says ´Bill (her husband) keeps giving my clothes to his other lovers and people are stealing my clothes.’ In fact, she is hiding her clothes from us because she thinks we are stealing them, but in fact, she steals our stuff.

The blogs give a lot of handy tips on how to deal with irrational behavior. One tip is to gently distract or try and support the person in what they are doing without being condescending. Fine, this makes sense, but I also have to try and prevent her from doing crazy, irrational and sometimes potentially dangerous things when I am here in the house with her and when she gets all angry at me for interfering, of course I get upset. This morning, for instance, she insisted that we run the dishwasher after breakfast even though it only had two bowls, two glasses, two cups and a couple pieces of silverware in it. I tried very gently to point this out to her and told her that we should at least wait until after lunch to run the dishwasher and she got really mad at me. She told me that was the way they always did it, and I should not interfere and I should just shut up and listen to her. She stormed out of the house into the rain and immediately turned on the hose and started watering the garden and the lawn. I tried to point out to her gently that she did not need to water the garden seeing as it was raining and had been for the past 8 hours. Not to mention the fact that we are in California where we live in constant drought and preserving water is essential and a rain like this is a blessing.

When I lived with my grandparents in Monterey in the early 90´s my grandfather always said the following about flushing the toilet: ‘If it’s yellow let it mellow, if it’s brown flush it down.’ We were not allowed to water the lawn or wash the car. When you brush your teeth you never leave the tap running and so on. So I was well trained and I am very aware of water conservation in California, so it drives me half crazy when my mother leaves the tap running in the kitchen while she wanders aimlessly around looking for dishes. When I try and discreetly turn off the tap she gets mad at me
and says she is trying to clean the kitchen. And yes, regardless of everything, she still has her dignity, demands respect and wants a task even if she is unable to really carry it out very well. She is able to load the dishwasher and feed the cats so it’s good if she does these tasks.

Forget-Me-Not Photo by Debby Clark

My mother does not want help at all with things and insists repeatedly that she do things herself as long as she is able to. She is very willful. One area she has given up on, and gets very frustrated about is getting dressed. It seems she realises that she can no longer do this anymore and painfully asks for help. She is still willful here but she is unable to put on a jacket or her shoes on her own. I help her with this whenever she asks. Today she got very upset when she couldn’t get her feet into her Teva sandals and do up the buckle. I realised that the reason her foot was not fitting in the sandal was because she had four socks on one foot and two on the other. One of the pairs of socks was mine too, which she had somehow snitched from me. I have no idea how she managed to get four socks on one foot seeing as it is usually a struggle for her to get one sock on. And the socks were soaking wet and dirty because she had walked out into the lawn with them. I first managed to get the socks off her and with great difficulty put new ones on her which she immediately walked into a puddle with and got wet again.

Let’s just forget about the wet socks and read some Shakespeare, shall we?’ I proposed to my mother. ‘Can you guess which play these lines are from?’ I smiled at her and read: ‘Peace, ho! For shame! Confusion’s cure lives not in these confusions. Heaven and yourself had part in this fair maid. Now heaven hath all, and all the better is it for the maid.’ ‘That’s Romeo and Juliet!’ my mother exclaimed with certainty, lucidity and a glint in her eye. ‘Perfect!’ I responded, and held forth: ‘Your part in her you could not keep from death, but heaven keeps his part in eternal life.’

I read some more, and then she got distracted so I just let her wander off in to the bedroom and do whatever it was she wanted to do in there and I continued taking notes and reading while sitting on the couch. After a few minutes I heard her whispering feverishly and talking to herself in the bedroom. She then came out to me and told me that she was going over to Judy´s, the neighbour, because she trusts her and it is better if I do not interfere and she can talk to her about things she does not feel she can talk to all those other people about. She warned me not to let the dogs out when she left for the neighbours’ across the field as they have a big vicious dog and they do not like it when we bring our dogs over there. She consistently talks of two dogs even though there is only one dog here now as the other dog died about three weeks ago, but of course she can’t be expected to register and remember this.

She then set off on her walk and I told her I would keep the dog in the house. As she was leaving I noticed that she only had one welly boot on and it was on the wrong foot and she was still wearing her wet socks. I told her she should put on the other boot too, on the right foot before she walked across the wet field. She then said that she must take the dogs with her because the neighbours do not like it when we take the dogs over there and then I said in that case, that was a good reason not to take the dog with her and she should leave the dog here. She then got angry with me and asked me sarcastically if I had any vague idea what she meant. I just looked at her and said nothing. What can one say to this? I see mad comedy in it, but I dare not laugh. She wandered halfway up the hill with the intention of visiting the neighbour and then she got distracted and came back again and stormed into where I was still sitting with the dog and demanded of me hysterically why I had let the dogs out. I told her that as she could see, the dog (singular) was right next to me and I had not let it out. She said that couldn’t be true, she had just seen the dogs up in the field and why can’t I just do as I am told, for once. I told her gently that the dog had not moved from my side for the past 15 minutes.

April 3

My sister moved here about three weeks ago to stay with my mother more permanently. She and I are sharing a bed in our stepdad’s violin shop. He taught himself how to make beautiful violins and we are surrounded by his tools, wood and his pictures of violins. Sharing a bed has its ups and downs. My sister snores and I am a light sleeper so she keeps me awake, but she says I wriggle and kick her, so we have to just learn to co-exist. The one good thing about sharing a bed is the intimate pillow talk time it affords us. We are able to discuss our mother and her health and she has been filling me in on the past few weeks. The biggest issue is her clothes and what to do about it. Should we search the woods to find where she is hiding them? There is something comical about it too and we do laugh and giggle even though it is all very sad as well.

We also discuss her delusions about infidelity, which are interesting in their own right. My sister told me a story she heard about a woman with Alzheimer’s who was standing next to her husband in front of a full length mirror and she freaked out and started asking him who the woman in the mirror was. I felt a cold jolt go up my spine. ‘Oh stop, you are really spooking me out here!’ I begged my sister. ‘It’s bad enough to have to listen to the howling of coyotes at night here.’ We also hear the footsteps of deer outside the violin shop at night. At least we presume it is deer.

April 4

After much discussion and arguing about where we were going to go for a walk today, my mother and I finally headed off on a long walk down the road that finally met up with another trailhead. I wouldn’t normally argue about it, but she is so fixated on walking back through the same field and orchard that I was determined to prevail and go and see something else. So I finally just shouted at her and told her that today I was deciding where we are going and she can just follow me if she wants to come. That shut her up and we headed down the drive. I immediately pointed out an amazing grove of redwoods in a cheery voice to distract her and then she cheered up and started talking about how much she loves the woods and how she wants to stay as independent as possible for as long as possible and she would like to keep on moving and walking.

As we walked down the trail, I saw that each side was filled with forget-me-nots, which of course just made me sad to look at. I picked one and gave it to my mother and she was happy to take it. It is not exactly a subtle metaphor. I wonder if, after I leave next week, my mother will remember my name the next time I see her. It is very likely that she will not and that makes me extremely aware of how important these few weeks are with her.

We walked up the trail and then she continued griping about not knowing where she was and asking why we couldn’t walk the other trail. Two seconds later she said that she loved the trail we were on that she walks it often.

After about half an hour we headed home and I picked up the new clothes that my sister had bought at the thrift store yesterday for my mom so that I could wash and dress her. We have discovered that there is no point in buying her new clothes because she just hides them and we can never find them again. My sister has decided that she is going to try and hide the clothes from my mom and only give them to her when we need to put them on her and then try and steal them back from her when they are dirty, wash them, and then dole them out again as needed.

It is a serious struggle trying to get her into the shower, but I have a newly developed ‘poison oak strategy’ that seems to work. I simply tell her that seeing as we were just walking in the woods we are now covered in poison oak and it is essential that we shower immediately with lots of soap. She does not argue with this. We took a long soapy shower together and after I quickly dressed myself, my mother then insisted on putting on her dirty pants. I then applied the ‘poison oak strategy’ again and told her those pants were covered in oak oil and why can’t she put on these nice new pants? She tried to put them on and was having trouble and so I helped her and then she started crying and looked up at me and asked me what was happening to her. I told her it was ok and I was there to be with her, but she was very upset and she then just looked up and me and said: ‘I could have been a better mother.’ I told her she had been a fine mother and she had been an inspiration to many, many people in her life. This cheered her up a bit.

Photo of Forget-Me-Nots by Debby Clark

April 7th

In a lucid moment when she was in a good mood my mother came up to me today and sincerely said the following to me with a look of guilt: ‘Rhea, I just want to say, if I act in any way annoying or irrational just tell me, ok’. This sentence from her just broke my heart, so I just looked up at her and took her hand and said ‘Oh you are fine, everything is fine, we are having a lovely day, aren’t we?’

At moments like this she really is aware of what is happening to her and she is very sad and remorseful for her behavior. Her central processing unit, the hippocampus is what is malfunctioning first and she can’t remember things one minute to the next and gets very confused. The frontal lobes that control emotions, language and long term memory are still there and that is the last part of the brain to go in Alzheimer’s, so I try and keep her focused on tasks that keep her happy and using old memories, especially by reading to her.

She is incredibly willful and does not want to be told what to do at all, and she always wants a task. So, tonight when I was cooking dinner she insisted on helping. I gave her a bag of green beans to chop the ends off and cut in half but she was not able to perform this task at all. Most of the beans still had the ends on and she was chucking the good bits into the compost, but I just gently tried to remind her what to do and eventually we got the beans prepared. I washed the zucchinis and carrots and told her to just chop them into thin rings. She did this mostly ok, but at the end of it the rings got very thick and she started chopping the carrots all which away in sticks and was just hacking at them with the knife. I just chucked them into the pot as she had chopped them and we moved onto the next task.

Getting her dressed is always a huge challenge. The other day, after returning from a 5 mile hike, I suggested that we take a shower together, and she hurled abuse at me for at least 10 minutes. She told me she did not want a shower even though she really needed it. She said she really wanted to go for a walk to the waterfall and can’t I just leave her alone and stop pestering her to have a shower. She seemed to have no recollection that we had just that minute returned from a five mile hike. I eventually got her into the shower and got her dressed. I just put my clean shirt on her because we still have not figured out where she is hiding her clothes. In the woods, perhaps? She thinks Bill (her husband) is stealing her clothes and giving them to his lover. This paranoia and fear do not leave her and she keeps repeating it. She gets very defensive when we try and tell her that we would like to discover where she is hiding her clothes from us. She denies hiding them and there is no way to break through on this issue. She then says all her clothes are in her room and asks us what we are talking about. When I point out to her that her drawers are empty she does not seem to register what it is I am trying to say.

When we were on the beach yesterday she kept wandering and wandering around the beach and asking us continually when Bill was coming to pick us up even though we were there with some friends from San Francisco. She kept wandering up to the public bathroom, and once I followed her and we both went to pee and afterwards she insisted on cleaning the public sink with wads of paper towel that she was pulling out of the garbage can. I gently told her that it was a public restroom and that was not necessary. She then got really mad and said she knew what she was doing and would I leave her alone please. There is no arguing with it, all I can do is say: ‘ok, let’s go now’ and then she gets distracted and follows me. I took her back to the others on the beach and within 5 minutes she was wandering back towards the road and started waving at cars. She still thought Bill was coming to get us. I always followed her when she went towards the road because there was a lot of traffic on the two lane road and the cars were moving fast. At one point when she went to the road I could barely keep up with her she was walking so fast. I finally caught up with her and asked her to come back and she told me she wanted to walk home now because she was tired. I told her that it was 15 miles home from there but still she insisted on walking home. I then distracted her by pointing out a few ducks and seagulls in the swamp and we looked at them for a bit then I told her that we should head back to the beach to the others and which point she of course forgot that she wanted to walk 15 miles home and then just followed me back to the beach.

April 8th

This morning as my sister and step dad were loading up the truck with all the garbage to take to the dump, my mother came into the kitchen looking very upset and I asked her what was wrong. `Bill tells me I can’t go to the dump with him and it was always something I enjoyed doing. ‘It´s such a scenic drive out there.’ she looked on the verge of tears and then she wandered out into the lawn towards the garden apparently wiping tears from her eyes. When she reached the garden gate she stopped as if she looked very confused as which way she wanted to go. It broke my heart watching her go as I presumed Bill had said he wanted my sister to go instead because my mother can no longer use her left arm so she is not much help emptying heavy trash cans. I went back out and asked him if I should stay home and look after her while they went to the dump. He then said that she said she wanted to come too. She then walked out to the truck and I asked her if she was going and she got very excited and jumped into the truck. Clearly he had said nothing to her and this, yet again, was a figment of her imagination.

Last week one of the trash cans went missing and after searching everywhere for it we eventually found it up the path towards the orchard. For some reason my mother had brought it up there. Yesterday morning when I came down for breakfast I noticed that both trash cans were gone out of the kitchen. I looked everywhere for them and couldn’t find them anywhere. I asked my mother where they were and she said she had washed them. ‘Yes, but where are they now?’I pleaded. She got very upset at this and told me they were in the kitchen, which they were not. We eventually found both trash cans in the shower next to her bedroom. She had taken them in there, partially washed them and then left them there.

Photo of Forget-Me-Nots by Debby Clark

April 9

I never remember my mother being especially squeamish about or scared of wild animals and other pests that one is apt to encounter in a redwood forest or vegetable garden. It seems her disease has made her even less squeamish of dirt and animals. I may find it a paradise here, but I am still wary of critters. I am simply not used to them, being the citified person I am.

The other day, as I was sitting on the edge of the pool looking down the canyon I saw my mother walk down with the bucket of compost to the compost heap which was below the deck. She wandered to the heap, stopped, got confused and then continued to walk down to the woods. When she reached a grove of redwoods she again stopped, got confused and then walked back up to the compost heap. When she reached the heap she then started to dig a hole in the heap with her bare hands and then she stopped and wandered off with the full bucket again. She then got confused and walked back to the heap with the bucket and proceeded to empty it with her bare hands. I was watching her the whole time from the deck. She did not see me watching her. My thoughts at this point were on hygiene. ‘I must make sure I get her to wash her hands as often as I can trick her into it, because god knows where else she is putting them.’ I sighed to myself. She eventually up ended the bucket and emptied it and after
wandering around the garden a bit more she returned with the bucket. I lured her into the bathroom and we both washed our hands with lots of soap and hot water before making lunch.

She thinks I am being squeamish when I refuse to remove a half dead lizard from the living room that the kitty has failed to kill completely. ‘Oh for heaven’s sakes, just pick it up and put it out in the garden!’ she says to me. ‘But it’s still alive!’I wail. I guess I should be less squeamish about animals and she should be more so about hygiene with compost buckets. While walking in the garden, I lay my eyes on the biggest land slug in North America- the yellow banana slug- and my mother wants to pick it up. ‘Don’t pick it up!’ I warn her, ‘The slime is nearly impossible to wash off your hands once you get it on them.
The other night I was quietly reading my lovely book by Natalie Goldberg. In it she talks all about her time as a student of Zen and how she learned to sit still and find peace and not let little things irritate her. My hand wandered up to my neck to itch something that was slightly irritating me and then I screamed and leapt about a foot into the air. ‘Oh, my God, I have a tick, I am going to get Lyme disease!’ I yelped. I chucked it onto the floor and stood there, terrified. ‘Oh, don’t be such a baby’ my mother said, and picked the tick up off the floor and put it onto the stove. ‘You have to make sure it is dead.’ she said as we watched it hiss and sizzle on the stovetop. This instantly reminded me of an old hippie friend of my mom’s who had an even more failproof way of making sure the tick was dead and gone. ‘I just eat them’ she told me. ‘Then you know for sure that they won’t be sucking blood from your kids and dogs.’ I was about seven years old when this woman said this to me as she plopped a tick into her mouth. I have never forgotten it. ‘I may be a little citified and not used to wild animals and bugs and beetles,’ I tell my mother defensively, ‘But do you not recall the time I got a tick in my eye and we had to remove it with a pair of tweezers?’ I asked her. ‘No, I don’t remember that,’ she said.

‘And this is the little man….’

April 10th

‘And this is the little man who looks after the dogs and the garden when we are away.’ my mother informed me pointing into the bushes at what, I was not sure. ‘I do not see any little man’ I said. ‘Oh he is there.’ my mother says. Now I am not sure if this is meant to be a joke or if she is living in some kind of fantasy. Outright fantasy is one thing, but it is disconcerting when I am not sure at all whether my mother is making up stories or telling me the truth. I finally looked around in the bushes and found the little man that my mother had been talking about. I am still skeptical about whether or not he waters the garden though!

The other evening she came into the living room with a 2012 calendar of baby animals that she wanted to show me. It had baby Siberian tigers, polar bears, snow leopards and so forth. ‘It’s such a beautiful calendar’ she said to me. I agreed with her and we looked through the photos together. ‘I got the calendar at a thrift shop for one dollar as it was already really old so I could not use it anymore, so they sold it to me cheaply. I bought it down at the mall in Santa Cruz.’ Now this statement is obviously purely made up, because I could see right away that the calendar belonged to my younger sister who was here last year. She had written details from her life in it from January on. I did not argue with my mother. Why bother? She is enjoying the moment looking at the photos of the baby animals. It made me think a lot about how many of her stories of the past year I can trust to be true and what is all pure confabulation. Confabulation in psychiatry is defined as ‘the replacement of a gap in a person’s memory by a falsification that he or she believes to be true.’ She has told me repeatedly that she climbed halfway up a redwood tree and got stuck up there as she was all alone and she was very scared, but finally managed to get down again on her own. I am sure this never happened. Redwoods are nearly impossible to climb as they have no branches for at least the first 20 meters of their soaring heights.

April 11th

I was sitting on the patio next to the pool talking with my stepdad and my mom yesterday and my stepdad was telling me that it’s not the federal government that are fucking things up, it’s the local government that cause all the grief and bureaucratic loops and hurdles that you have to throw yourself through every day. ‘I believe it.’ was my simple response. My mother then gave us her two cents on the topic and offered the following advice: ‘We need to get a big  can of green spray paint and spray the bastards green.’ ‘Yeah, that’s the solution, Ellen, you got it right there.’ responded Bill with a wry smile. If only it were that easy!’ he continued. Clearly the Alzheimer’s mind is not only capable of the craziness of paranoia and delusions but also moments of wonderful poetic solution such as this. A can of green spray paint is the solution to all of life’s woes. Now why didn´t we think of this before.

Well, apparently green spray paint won´t stop a rat from coming into your house because that was yesterday morning’s problem that needed a solution. ‘Oh look there’s a rat!’ my sister shrieked at breakfast. I of course shrieked even louder than her because as I already mentioned, I am a total wuss and scardy cat when it comes to any wild animal. We immediately opened all the doors and my sister took a broomstick and started chasing the huge rodent around the kitchen. It ran behind the dresser and then past every open door and did not go out but went behind the couch in the living room instead. I then went back in the kitchen and my mom came over and said the rat had gone out. She had shooed it out herself with the broom. My sister and I glanced at each other in disbelief. So, did the rat really go out or is mother making up a story? We should have kept watch. We asked our mother again if the rat had gone out. ‘I shooed it out with the broom!’ she repeated angrily. We then closed the doors and she asked us why we were closing the doors when the rat as still inside. ‘How is the rat supposed to get out?’ She demanded. So is the rat in or out? This is the big question. To ponder this question we commenced dancing around the kitchen to UB40’s ‘Rat in the Kitchen’ which my sister put on full blast on you tube.

The sun then came out and I got my bathing suit on to lie on the deck to warm myself to jump in the freezing cold pool to swim which I am doing here every day the sun is out even though the water is freezing because it is incredibly invigorating and refreshing and I need the exercise. I was relaxing and sunning myself when suddenly the cat came up to me and dropped a dead lizard from its mouth right in front of me, which of course, startled me. ‘Thanks, kitty, now could you please get the rat!’

An hour later my mom and stepdad were taking a break, watching TV and sitting on the couch when they noticed that the cat was taking a keen interest in something that was under the couch. My stepdad lifted up the couch and there was the rat. The cat pounced and half killed the rat. Well, it is cruel to leave a rat half dead, so he grabbed a huge stick to put the poor creature out of its misery. He then picked it up by its tail, walked outside to the edge of the pool and flung the rat down the canyon.

After the rat incident, we decided to put that unappetizing idea out of our heads and cook a nice meal. I got to work making a delicious chicken curry while my mother wandered aimlessly around the house, every so often asking me what she could do to help, but then wandering off again as soon as I gave her a task. When the pot was bubbling nicely, my mother came into the kitchen and asked me if I could please come into the bedroom with her. I complied and followed her. When we arrived at her bed she pointed to a dress that was on her bed and asked me if I could help her put it on for dinner. ‘But you can’t wear this dress, mom. This is a dress for a 5 year old child. Who does this dress belong to?’ I asked her. ‘This is my dress, can you just help me put it on?’ she demanded of me rudely. An argument ensued until she finally forgot about the dress which I then hid from her so that she would not ask me to put it on her again. She tends to get fixated on things and ask me the same things repeatedly.

April 12th

The most troubling part of Alzheimer’s, in my view, is the paranoia and sinister delusions it brings up. As I have mentioned, sufferers of the disease typically think people are stealing things from them and they fear infidelity. I have read this on several blogs. My mother is a textbook case. There is a German exchange student staying here at the moment and I have kept my distance from her because I am not wild about her. I am here to see my mother and not hang out with her. She irritates me. I am civil to her but I am not going out of my way to be with her even though I think she would like it. I want time for quiet reading and writing, spending time with my mother and reading to her and I am not really interested in making new friends here. Yesterday, the German girl came into the kitchen to make breakfast as I was enjoying a moment with my mother. I politely suggested that my mother and I go out and sit by the pool in the sun and continue reading so the girl could make her breakfast.

I told my mother that the girl irritated me a bit and I would rather just spend the time with my mother. Had I known what my comment would provoke I might have kept my mouth shut. My mother then said that she couldn’t stand the girl and she was always interfering. ‘Bill tells me that she gives a great blow job’ my mother said to me at the top of her voice. I gently told her to keep her voice down but she was on a rant and there was no stopping her. ‘Well, I finally had to blow the trumpet when she started stealing my astrology books’ my mother continued. ‘I told her she should go buy her own books, and she has been stealing my clothes too’. My mother was enraged. ‘Let’s read our book again and not worry about the girl!’ I implored my mother to keep her voice down. ‘Now, where were we in our book?’ I flung it open and found the page we had been reading. ‘Do you remember how many humans the Aztecs sacrificed to the Sun God, mom? Let’s reread that bit?’ I proposed.

I finally managed to change the subject and get her attention back to the book we were reading. But her rants do go on and she gets quite upset. Sometimes it takes awhile to get her back in a good mood and focused on our book. I am reading her ‘The Magic of Reality’ by Richard Dawkins and it is a delightful book to read aloud. It seems especially apt as an antidote to the fantasy world my mother lives in half the time. The Aztecs holding up beating hearts to the Sun God is only one fascinating topic it covers. It also talks all about Charles Darwin’s excursion in the Galapagos Islands and different species of iguanas he discovered there. We have been learning about atoms, molecules and the phases of matter. Today we learned why it is impossible to walk through a wall, and why exactly we walk slower through water than through air and what exactly wind is and the scientific breakdown of how it blows. We are also reading all about the planets, which has always been a topic that has fascinated my mother. She knows a lot about the planets and has always been fascinated by the heavens, astrology and the stars, so this is a good topic to discuss with her. It keeps her focused. One chapter in the book even started by mentioning Edward Lear’s poem ‘The Owl and the Pussycat’ and of course my mother still knows all the words to this delightful poem as she always sang it to us as children. We have sung it together the whole way through at least four times now ‘The owl and the pussycat went to sea in a beautiful pea green boat, they took some honey and plenty of money wrapped up in a five pound note……

April 13th

A few days ago as I said, a rat came in the house and ran around the place before finally hiding under the couch and staying there for hours before kitty went in for the kill.

Last night I came out of the bathroom and my mother was standing in front of the couch and she beckoned me over to her with a hushed and secretive whisper, calling me with a hooked finger. These gestures instantly reminded me of my grandma. My mother is turning into her mother. It’s wild to watch. She is turning into an old lady. I walked over and I saw my headphones on the floor next to the couch. ‘Why are my headphones here?’ I asked her. She then told me quietly that she had hidden my books under the couch away from the girl who would steal them if I wasn’t looking. ‘What?’ I asked. I bent down and she had indeed slid my two notebooks and the two books I am reading right back under the couch to the very spot where the rat had died days earlier. ‘No, mom, you do not have to hide my books under here, please do not hide my books!’

I am glad that I walked out of the bathroom when I did and caught her in the act otherwise I really do not know if I would have found the books easily again. And I have been patient with her through her daily temper tantrums, but I think I would have thrown a fit if I were unable to find my books and my weeks of notes. This is the bit of this disease that drives me the most crazy.

Photo of Forget-Me-Nots by Debby Clark

April 14

‘I have brain rot’ my mother says to me with big tears in her eyes, still trying to put on a brave face. She was sitting next to me in the hot tub, naked, as she had failed to put her bathing suit on properly. I then told her it was fine, and to forget the suit. ‘Jump in in your birthday suit’ I encouraged with a smile. ‘You are a beauty’ she said, her eyes welling with more tears. ‘Having kids is the best thing I ever did.’ We sat in the hot tub and I hugged and comforted her until she got distracted, again and forgot her tears. ‘But just look up at those trees, aren’t they beautiful?’ We stared up at the redwoods and a turkey vulture circled menacingly over us.

Earlier this afternoon my mother wanted to assist with weeding around the pond and so she started pulling out perfectly healthy swamp grass, rolling it up in a bunch and chucking it on the ground.

When she finally finished her wander around the pond she came up to me with that special look in her eyes. The one she gets when she is scheming in a paranoid way. I recognise the look now after spending s few weeks with her. ‘I am going to go into my bedroom now to sit by my clothes and guard them. I don’t want that girl to take my clothes. It may seem a bit paranoid, but I will sit in that window, guard my things and look at the fish pond from there.’ she insisted. ‘Well’, I responded ‘You are paranoid, because, honestly, no one is taking your clothes. I just bought you three new pair of underwear yesterday, remember?’ I said as gently as I could. ‘Bill has given them away to some other woman, they are no longer there.’ She said.

When my mother walked into the kitchen this evening, she thought she had picked up her tea and was moving it to the table but then she realised that her hand was empty. ‘This is so weird’ she said. ‘I don´t understand why I do this and why this is happening.’ The other day too, a similar thing happened. She spooned out a spoon of sugar and had intended to put it in her coffee but instead she just plopped it back into the sugar bowl. ‘Why did I just do that?’ she asked me. I just looked at her and said nothing. The worst thing, of course, is that she is sometimes aware that she is doing crazy things and losing the plot.

The past few days we have been putting an excelon patch on my mother’s back daily and it seems she is a little better. She managed to get dressed on her own this morning, but the negative side effect is that she then becomes more aware of her situation and that upsets her more. My stepdad told me that other side effects are panic attacks and when she had the last round of patches she had a little freak out after it. An excelon patch is a memory boost drug. She is also on anti depressants.

April 15th

‘I am sliding fast down a slippery slope, I hope there is a soft cushion at the bottom’ my mother said as she looked at me through teary eyes. ‘Let’s go outside by the pool and read more of our book.’ I suggested. We went out and started reading all about rainbows. A rainbow is another interesting and not too subtle metaphor for me to apply in discussing my mother’s Alzheimer’s. This is my last day with my mother and her colours and beauty are fading just as the beauty of a rainbow fades. Beauty’s duration is all too short. A woodland path with forget-me-nots, me and my mother walking it. Me, reading to my mother about rainbows on my last day with her, when I know all too well how heart wrenching it is to say goodbye to her fading beauty. This is bordering on cliché, on ridiculousness. A rainbow is a great symbol for both me and my mother though as it is a wonderful symbol of fairy tale and fantasy, and both of us have lived our lives in a bit of a dream and fantasy regardless of any disease. I am a dreamer, just like my mother.

My mother is sitting, listening to me reading the book. We are both sad as we both know that I am leaving in a few hours. ‘I will come back and see you soon’ I promise her. ‘Well, don’t wait too long’ she says. Rats in Berlin club left after they played the music so loud… comic relief… bridge, rainbow, escape from noise. Club party in bonny doon to scare away Rat? No, stepdad plays in string quartet. … add music we are listening to….. classical. Gilgamesh, angry gods cant sleep……… notes…..
In her book, ‘How to Stay Sane,’ Psychotherapist and writer Philippa Perry says the following: ‘Our stories give shape to our inchoate, disparate, fleeting impressions of everyday life. They bring together the past and the future into the present to provide us with structures for working towards our goals. They give us a sense of identity and, most importantly, serve to integrate the feelings of our right brain with the language of our left.

[…]

We are primed to use stories. Part of our survival as a species depended upon listening to the stories of our tribal elders as they shared parables and passed down their experience and the wisdom of those who went before. As we get older it is our short-term memory that fades rather than our long-term memory. Perhaps we have evolved like this so that we are able to tell the younger generation about the stories and experiences that have formed us which may be important to subsequent generations if they are to thrive.

I worry, though, about what might happen to our minds if most of the stories we hear are about greed, war and atrocity.’ to be continued….. more work needed here… this story isn’t over yet…..

One year later….. Visiting my mother at Cedar Creek Alzheimer’s Care Home in Los Gatos, California

May 1st

My uncle Greg and aunt Janet and I drove down to Los Gatos on Thursday afternoon. It was hot weather! We have been enjoying unusually hot weather here on the coast: lower 80’s and 90’s inland. We arrived at Cedar Creek and we were greeted by the nurse and were told that Ellen, Bill (my stepdad) and Shirin (my mom’s artist friend from Singapore) were in the back garden. We were told by the nurse when we left after our visit to just kind of discreetly disappear and not say good bye and not to bring Ellen out to the front door as this would likely cause a scene. So before I even see my mother I am told I can’t even say goodbye to her! We went into the back garden and I walked over to Ellen to give her a hug and she was kind of staring at me and then past me and didn’t appear to recognise who I was at first. I gave her a hug and she was hesitant about letting me embrace her. We sat down at the table in the garden and I sat next to Ellen and Bill poured us all some water and we enjoyed that because it was so hot. I tried interacting with Ellen and she didn’t really seem communicative at all. At one point she looked at me with big sad eyes and said: ‘you’re a beauty’.

After a while we all got up and wandered around the garden a bit and looked at the birds in the cages: chickens with big fluffy legs. The chickens looked like they were wearing pantaloons which instantly reminded me of all the time we spent in Turkey with my mom when we were kids and we made our own batik, tie dyed pantaloons which I loved. Ellen seems to have lost her spark and vitality a whole lot more than last year. Maybe I just caught her on a bad day but I have the feeling that any kind of genuine interaction is no longer really possible. She rolled her eyes and smiled a few times but I didn’t really get the impression that it was in response to anything we were discussing. I told her that I was planning on leaving Berlin and moving back to Ireland and then I told her again 10 minutes later and she then said: ‘yes, you said that’, so I guess she remembered me saying it! I was aware that she had not once yet said my name or seem to have registered who I was.

I then went to the bathroom and when I rejoined them all back on the terrace for dinner and sat down next to Ellen she then said; ‘Oh there you are Rhea’. She then seemed to remember who I was! Greg, Janet, Bill, Shirin and Ellen and I enjoyed a nice meal with macaroni ham and cheese, salad, orange carrots and some strange yellow crunchy carrots that I had never eaten before. They tasted really good. We also drank a lot of delicious homemade mint and pink lemonade that the staff brought out by the litre full. It helped us beat the heat. Ellen ate her meal and she seemed to do ok with it. She dropped a few pieces of macaroni on the ground but she was doing ok with her fork to mouth coordination. I was pretty impressed by that. At one point she stood up and got all upset and said she had to go to the bathroom. Bill took her out and then less than 10 minutes later he brought her back and she sat next to me, but I could tell she was very upset and irritated. She had tears in her eyes. I tried to console her as best I could. Later Bill told me it was because she had pooped herself while sitting there and even though she is wearing diapers this really upsets her as she does seem to be aware of it and she doesn’t like it and sure, she has her dignity and which adult wants to poop themselves during dinner on a sunny afternoon when you have guests. None of us noticed this incident. Bill was the only one who realised it. After dinner we went back into the back garden and as Shirin, Greg and Janet discreetly slipped away (as we were requested to do) I sat with Ellen and Bill as he read aloud to both of us from his book ‘Seabiscuit’ about a racehorse. I listened to the story and enjoyed it but Ellen just sat there in a daze and didn’t seem to register the story at all. This made me sad because I also hope to come back and read poetry and stories to her on my next trip next week but  I fear she won’t get anything out of it. I am going to read to her anyway though! We will see. Eventually I got up and said I had to go to the bathroom and I snuck away as Bill was still reading to Ellen. On my way across the courtyard another woman with severe dementia approached me and begged me to come with her because she needed my help. We were standing right next to the ‘bus stop’ which is a fake bus stop of course enclosed in the courtyard so the patients can go there and wait for an imaginary bus if they need to until they forget again why they were there. I brought the other lady to the nurse. At the front door there is a large, genuine, red traffic stop sign which I guess really stops patients from thinking about going any further.  I had a code to punch in to get out the door. The whole institution is on high security and all the patients are fitted with GPS in case they escape.10 minutes later Bill joined us in the front garden and we all left the grounds and chatted outside for a bit before Bill took Shirin to the airport to fly back to Singapore and Greg and Janet and I drove back to Pacifica.

 

Forget-Me-Nots by Debby Clark

Tags: Aging Parents, Alzheimer's, Forget-Me-Nots, Paradise Lost, Rainbows, Richard Dawkins, Romeo and Juliet, Santa Cruz