Diary- Observations of my Mother’s Alzheimer’s

9 Feb
Image by Nephron

Image is a Micrograph by Nephron showing Alzheimer’s Diease

Ellen pic

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.

Koi pond

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?

ForgetMeNotTrue052712

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.

ForgetMeNotTrue051916B

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.

Redwoods

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.

ForgetMeNotTrue060411

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.

ForgetMeNotTrue061310B

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.

Little man

‘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.
Ellen with log

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.

Bonny doon garden

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.

ForgetMeNotTrueWhite052811

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.

Ellen beach Santa Cruz

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…..

ForgetMeNotTrue051916A No 2

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.

chicken with pantaloon legs

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.

 Fountain at Cedar Creek

The fountain at Cedar Creek

May 5th

Today Bill and I went swimming at the outdoor pool at the university and then we drove to Los Gatos to go see Ellen at Cedar Creek again. Bill dropped me off and he remembered that he had to go and get shampoo and conditioner so the nurses could wash Ellen’s hair. I took this opportunity to go find her and see if I could spend a few minutes with her alone. I went in and greeted the receptionist and asked them where Ellen was and they pointed just down the hall. She was curled up on the bench asleep. I walked over to her and kneeled down in front of her and gently patted her arm and said her name softly. She woke up and looked at me and said “oh there you are Rhea”. I was happy she knew who I was but I was sad to see her there like that on the bench. They have a policy at Cedar Creek, however of letting the patients do what they want (within reason) so if she wants to sleep on the bench, she can sleep on the bench. Ellen closed her eyes again and started twitching and kind of talking in her sleep. She said “Do you see the rainbows?” This got my attention because last year when I was writing a diary about my stay with her I was reading a book to Ellen by Richard Dawkins about science and how things work and happen and the last chapter I read to her was about the science of rainbows and I had intended to write more about rainbows and use them in my writing and use this metaphor of the fading colours of rainbows as apt for the fading memory of an Alzheimer’s patient. I was thinking all year, in fact, that I needed to go back and read that section and incorporate it into my writing and now the second I walk into the institution Ellen reminds me of the rainbow! After lunch we went into the activity room and there was a man with a guitar and he also sang a song about a rainbow! I thought this was all a strange coincidence.


When we sat down to eat in the dining room today they were playing a Mendelsohn quartet on the soundsystem. Ellen started scratching her napkin with her fork and Bill asked her why she was doing this. She just looked at him with a blank stare. Yesterday was Cinquo de Mayo celebration as well as Bill and Ellen’s 5th wedding anniversary. Ellen seemed in a bit of a better mood today. I was happy that I caught her at the bench and then brought her to the living room. Lunch was turkey pieces mixed with pasta and sauce and a green salad with chickpeas, green beans and kidney beans in it. All the vegetables are grown in the owner’s garden. It is an interesting way to make a living: Running a home for Alzheimer’s patients and running an organic vegetable garden to sell to local wholefood shops. Ellen did ok with eating but she did drop some food on the floor. Dessert was a piece of chocolate cake and Ellen dumped it from the bowl on to her dinner plate and proceeded to mash into crumbs while attempting to scoop some of it into her mouth. I helped her a bit with eating dinner; I fed her a few bites when she got a little frustrated with it. We did have a nice time at lunch all in all. We were in fairly good moods and the chat was happy. After lunch we went into the back garden and sat in the sun after we looked at the chickens with pantaloon legs. We sat in the sun and I read aloud from my ‘Diary of Anais Nin- 1947-48’ it is such rich poetic language and very enjoyable to read aloud. I got the impression that Ellen enjoyed it. I read the section in which Nin is in Acapulco and compares life there to life in New York: ‘Here in Mexico they see only the present. The communion of eyes and smiles is elating. In New York people seem intent on not seeing each other. Only children look with such unashamed curiosity.’ At this point I felt the need to disagree with Anais Nin. I would say children and Alzheimer’s patients. When they are alert that is. I read on and came to this: ‘The expanse of sky is like an infinite canvas on which human beings cannot project images from their memories because they would seem out of scale with the limitless sea, the limitless sky and the stars, which appear nearer and larger. So memory is absent, dissolved.’ over the next hour I saw plenty of examples of memory dissolved: after I stopped reading we went into the activities room. The assistants had a lot of big colorful balloons that we were throwing around so the patients who were all seated in a circle could hit and bounce them back and forth. Ellen seemed to enjoy this. She always loved playing games and was a big kid anyway so this was good for her. There was an old lady sitting not far from me in a wheelchair and she looked really sad so I threw one of the balloons to her to try and cheer her up. She held onto it and looked at me and simply said ‘I can’t.’ I felt really sorry for her.

We also helped Ellen and some of the other patients play horseshoe by throwing little rings over a pole. Then the man who played the song about a rainbow started playing songs on his guitar. Ellen and many of the other patients seemed to really enjoy this and there was even some laughing, but in general the mood is a little depressing ans sad. I got a little emotional at times especially when I saw Ellen wandering around with a pretty lost and blank look on her face with her lame left arm hanging down and her right one protruded in an odd way. She has pretty much lost use of her left arm and it hangs at her side. She was able to use it, however as she embraced and comforted another lady who was hanging her head and wandering around looking very unhappy. Ellen tried to console her. It appears there is some real solidarity between the different Alzheimer’s patients. After about 45 minutes in the activity room I casually got up and walked out. It made me sad to have to leave without saying goodbye to Ellen but I know it will make it worse if I say goodbye because she will only want to come with me and she is not allowed….

May 8th

Ellen seemed to do well eating her meal when Bill and I went back to see her for lunch on Thursday. she was hungry and ate her whole meal. Lunch was chicken in a creamy tomato sauce with rice with salad. Dessert was a small dish of cantaloupe, honeydew and watermelon with whipped cream on top. Ellen ate the cream off the top and ate that first. I made a joke to cheer her up about ‘Ellen’s melons’. This was our nickname for her breasts when she was breast feeding. She was always very big- breasted when pregnant and breast feeding. I took after her in this regard. She once told me that I was a well-behaved feeder but that my brother Tadhg and sister Cordelia were the biters while feeding. After lunch we walked out into the garden and sat down and she asked me: ‘What about your little one?’ ‘I don’t have a little one’. I responded. ‘I always wanted to be a grandchild.’ she said repeatedly. She then proceeded to make weird gestures with her hands in the air in front and starting making odd clicking sounds. She was in her own little fantasy world…. (I am too tired and emotionally exhausted to write anymore tonight).

 Cockatiel

Cockatiel

May 9th

In a cage near the entrance to the activity room there is a cockatiel which is a small Australian parrot that is very popular as a pet. It stands on a pole staring vainly into a mirror making all sorts of parrot noises or it just sits there, talons clutched, not uttering a peep at all. We tried to coax him to say ‘pretty bird’ or ‘here kitty, kitty!’ two things he apparently says. It was not on demand to us, seemingly. At lunch I read Ellen a few Haikus from the lovely poetry book that my stepmom Anneke sent us. One that I loved was about a frog: ‘Ancient silent pond Then a frog jumped right in! Watersound; kerplunk. We may not be able to get the cockatiel to perform on demand but it reminded me of a game we used to play in Berlin with Ellen, Allen (Cordelia and Lorna’s dad) and others called ‘Haiku on demand’ Allen was always very good at it- maybe because he spent some time in Japan. I do think the cockatiel, doves and chickens are good for the patients. Ellen seems to like them at times.

We went into the activities room and the assistants had set up bowling pins on the floor and they had a light bowling ball. As soon as they saw Bill and me come in with Ellen they called her over and asked her if she wanted to bowl. Some of the other patients starting calling Ellen’s name too so I steered Ellen over to the assistant with the ball trying to muster enthusiasm in her. She seemed in a daze as I tried to get her fingers and thumb into the ball and I saw instantly that it was not going to work at all. There was no way she was holding on to that ball. When she has to stop and think about an action that involves using her hands she can rarely do it. Ellen is losing her ‘executive function’ as it is called in neuroscience. That is, the ability to reason and make decisions. The first thing that Alzheimer’s attacks is the hippocampus. Short term memory is stored in the hippocampus. It is the central processing unit. Bill said Ellen’s memory is like a shredded doily. The bowling attemt failed which made me sad. I looped my arm through Ellen’s and walked her over to an empty chair in the circle of patients. As soon as we sat down, a very tall, slim woman beelined it over to me and reached out, touched my face and said ‘hello, it’s nice to meet you’. She then turned and continued walking around. She seemed in a very dazed and confused state. Watching all these people together in one room with this disease really is a sobering experience. It is emotional and thought- provoking. I read quite a few poems to Ellen in the back garden and I guess she enjoyed moments of it but the truth is she forgets everything from one minute to the next so it is painful watch it all. When I tried to leave discreetly at the end of our visit she looked at me with big surprised eyes as I left the room. She saw me leave, I felt guilty and bad but I turned and kept going. What else am I supposed to do?

 Ellen blue shirt

May 11th

Yesterday was another hot day. Cordelia and I drove over the mountain to Los Gatos to see Ellen again at Cedar Creek. It was Sunday and it was Mother’s Day. I had forgotten how seriously they take this holiday here in The United States. I have personally never been a big fan of these holidays that bring huge profits to companies like Hallmark Cards that write ridiculous poems that you can then purchase for too much money to express your love for the person. Sorry to be a snob but it is cheaper and nicer to take a piece of paper and write your own sincere note to the person you love. So, I didn’t bring flowers or a Hallmark Card for my mother yesterday and I did not feel guilty about it, because I know for a fact that my mother shares my opinion on these matters. I did, however bring the lovely poetry book with me again that I have been reading to her on every visit.

Bill brought Hildy, Ellen’s lovely white German Shepherd with him and Cordy and I joined Ellen and Bill in the back garden. Ellen was eating her lunch which appeared to be a Waldorf salad. She ate the whole thing. She certainly does seem to have an appetite. We immediately started talking about food and then I said to Ellen that the poetry book I had with me had a lot of wonderful poems about food. I found a poem which was a recipe for a chowder in poetry form and I read that out loud. A good chowder is something I really miss when I am in Berlin. A good chowder can be had in The United States and in Ireland, but it is a delicacy that is lacking entirely in Berlin cuisine it seems. Here I quote some of the poem: ‘To make a good chowder and have it quite nice, dispense with sweet marjoram, parsely and spice; mace, pepper and salt are now wanted alone. To make the stew eat well and stick to the bone, Some pork is sliced thin and put in the pot; some say you must turn it, some say you must not……. the entire recipe in a delightful poem! Various other patients came over and joined us as I was reading and again I must say that it is strange to be thrown into this crazy world of Alzheimer’s. I never thought I would be dealing with a parent having this insidious disease so early in life, but what can you do but embrace it and deal with it as best you can. Bill said to me the other night: ” Disease and death are a part of life and people who can’t deal with it in all it’s rawness and reality are not really living”. Well, what could I say to that? He has been dealing with my mother for the past 5 years and been watching her steady decline so I can only respect him for dealing with it even if he gets a little terse with me at times. He really has done so much for her and is dedicated to her.

Bringing the dog along to Cedar Creek was a big hit too. A lot of the patients wandered over to admire and pet Hildy. The patients also seemed to enjoy my readings of ‘Jabberwocky’ by Lewis Carroll and ‘The Lady of Shallot’ by Alfred, Lord Tennyson. ‘The Jabberwocky’ seemed a particularly apt poem to read in a place like this. It’s nonsense words fit perfectly with a lot of the crazy, poetic, incredible nonsense that comes out of these patients mouths. My sister and I took turns reading it in jest; ‘Beware the Jabberwock, my son! The jaws that bite, the claws that catch!, Beware the jubjub bird and shun the frumious Bandersnatch! And as in uffish thought he stood, the Jabberwock with eyes of flame, came whiffling through the tulgey wood, and burbled as it came!’ At one point Bill told one of the other patients that Hildy was Ellen’s dog and Ellen pointed to Hildy and said ‘that is my dog and not that one’ as she then gestured to Cordelia. Cordelia then said ‘I am your daughter, not your dog.’ to which Ellen replied. ‘You are my dogger!’. So as sad as the whole deal is, there are moments of comedy like this where we can’t help but laugh and the staff certainly are very friendly and nice. As we were sitting there they brought us out a beautiful porcelain pot filled with black tea which we poured into beautiful intricately engraved porcelain cups. I was afraid that Ellen was going to drop her lovely cup on the concrete and smash it! The staff also brought us egg salad sandwiches and delicious raspberry and chocolate petit fours and blueberry muffins. The petit fours instantly reminded me of the ones Milly (my great grandmother) used to give us when we visited her on Park Street in Williamstown, Massachusetts when we were kids so I asked Ellen if she remembered this in an attempt to spark her long term memory but sadly she did not seem to know what I was talking about. When my mother saw the two staff women appear with the trays of tea and snacks she looked up and said ‘Humans!’ really loudly. What can you do but giggle at this? After awhile Bill left with Hildy and Cordy and I took Ellen to her room and before she lay down on her bed and closed her eyes she told me that she had slept in this bed two and a half times. I just rolled my eyes, smiled and looked at her. We sat on the bed and kept chatting to her and she occasionally made some response including this; ‘My ideas are good but they don’t hold’. Indeed. I read one of my reviews that I had written out loud to both Ellen and Cordy and Ellen seemed to enjoy it in her half reverie. The three of us were having a lovely, chatty intimate time together and for a few minutes I forgot that my mother has this horrible disease but then the reality of it all came rushing back when it came time for us to get Ellen to the toilet and change her into her pajamas and she threw an absolute fit. Crying and screaming and carrying on and lying on the bed and blubbering with snot running down her face absolutely refusing to cooperate with us. It’s like dealing with a 3 year old having a temper tantrum. We eventually got her pants down and got her diaper changed and managed to get her pajamas on but it was a huge ordeal after which she had to lie on the bed a cry and blubber a bit longer before we could even consider taking her to the dining room for dinner which we eventually did and again; she perked up and ate her whole meal! Dinner was a tomato soup, some fries and a cheese, lettuce and ham sandwich. Ellen promptly took the top layer of bread off her sandwich and and went straight for the ham, pulling it off the sandwich and shoving it into her mouth. She then looked at me and said ‘Do you see those litte eyes sticking out there?’ She was pointing right at my breasts. “Um, no I don’t’ I said and Cordelia and I laughed. After dinner the assistants put on screening of Jane Austen’s ‘Northanger Abbey’ on the wide screen TV and Cordy and I watched some of it with Ellen before giving her a kiss goodbye and leaving to drive back to Santa Cruz……

 Rhea Ellen cc

 May 13th

On my first trip to Cedar Creek I noticed the fake bus stop that the residents can go and stand at and wait for a bus that never comes if they have an urge to do that, but it was only on my last trip yesterday that I noticed the U.S. Postal mailbox that the residents can also check for mail. Waiting for buses and checking mail. Two nifty little additions to this institution to give the residents a feeling, if only fleetingly, as is the nature of this disease, that they live in a normal, every day world and they are not confined to an institution. Cordy and I drove back to Cedar Creek for one last visit with Ellen yesterday and I was delighted to catch my mother in high spirits and full of crazy stories and nonsense. Last Sunday I read her ‘The Jabberwocky’ by Lewis Carroll, but I must say that my mother, in her Alzheimer’s madness, gives Lewis Carroll a run for his money with her wit and poetic creativity. Cordelia and I were laughing and we embraced it and encouraged her to talk it all out.

We took her out into the front garden and sat her between us on a bench. As we were sitting in the shade of a huge magnolia tree next to a small burbling fountain a hummingbird came to the fountain and sat for a second and then flew around us before darting off again.The peace of this natural setting was suddenly disturbed by the sound of a fire truck siren on the next street. Ellen sat up and smiled and said ‘Something red is coming!’ Cordy and I just looked at each other and laughed. After awhile, and for a change of scene we decided to go back into the back garden again where the chickens, doves and cockatiel are. Ellen likes the birds. We sat down on another bench in the shade to beat the heat drinking lots of cold water that the nurses gave us. We asked Ellen if she was happy at Cedar Creek and she said ‘yes, I am happy enough, but I miss my friends.’ Cordelia asked her who she missed and she paused and thought about it and said ‘I miss the stars and I miss the chickens.’ We tried not to laugh too hard. We then said ‘but you have met some people here and there are a lot of activities to do in the activity room, right?’ She then said ‘Yes, but there is a big lid on the bucket in the room and I tried to take the lid off myself and the whole project and trade cost a lot of money and it is in the bucket.’ We just listened to this and wondered where it was going. Eventually she said this to Cordelia in a funny loud voice: ‘I will turn you into a boy!!’ We just looked at each other and laughed again. I then said that she had always hoped that Cordelia was going to be a boy anyway so now is our chance to turn her into a boy. Poor Cordelia, on Sunday Ellen made the joke about her being the dog and now she wants to turn her into a boy! She then said she needed to go to the bathroom so we knew this would ruin the mood but if she has to go, she has to go. So we steered her back to her bedroom and there was a nurse standing there ready to help us. Cordelia said she would  deal with it and it would be better if she were alone so we waited outside the door. But we heard the commotion. Ellen was howling and crying and screaming again (as she does every time she has to go to the bathroom, have a shower, get changed or have her diaper changed). I stood outside the door talking to the nurse. She was from Ethiopia and must have been about 30. She spoke moderately good English and I asked her how long she had been in the United States and she said two years and two months. She told me she had two young children and she was having a hard time surviving and that she had expected America to be this big dream and an amazing new life but it was hard and expensive and she was struggling to get by. The American dream. How many people yearn for this opportunity to get here and then all it is is work and they wonder if they would have been better off staying in their own countries.

I eventually opened the door to the bedroom slowly to peek in and Cordelia was taping on Ellen’s diaper and she was standing there blubbering. The nurse left us and we closed the door and then Ellen lay on the bed howling again. I sat down next to her and stroked her hair and kissed her tear-stained cheek and told her I was leaving soon to go back to Berlin and wouldn’t it be nice to go out and look at the chickens again and enjoy the sunshine? She eventually sat up and I looped my arm through hers and Cordelia and I led her down the hall. As we were walking down the hall there were two patients seated on a bench and Ellen looked at them and said ‘Hi!’ to them loudly. One of them looked up and said ‘Hi there!’ and Ellen responded by saying ‘Either, or both?’ I chuckled to myself at this because phonetically, I guess she had not heard ‘Hi there’ but ‘Either’ and this is Ellen’s clever response to this. And as tragic as this whole disease is, I simply cannot help myself as a lover of language but to take in the details of what she says and how she interprets things.

z 034

             Hühnerhof by Otto Scheuerer

She was still a little upset and teary over the whole bathroom episode when we reached the garden so I really wanted to cheer her up as best I could and enjoy some last happy moments with her, this being my last trip to see her. Cordy and I steered her over to the dove cage and we proceeded to say ‘coo coo’ to the doves and they responded with a ‘coo coo’ and we responded with a ‘coo coo’ and we did this for at least five minutes and it was entertaining and relaxing. Eventually Ellen pointed to the chicken cage and said ‘just look at the chickens!’ and so we walked over to their cage and then Cordelia said ‘Ellen can you make your chicken sound?’ and this is how I will remember my last visit to see my sick mother: her clucking like a chicken and smiling and making perfect chicken noises. My mother had a big smile and she was clucking like a chicken. She was entertaining us and acting. And that is what my mother was always good at. She was a great actress, a great poet, a great entertainer and had a brilliant mind. I gave her a kiss on the cheek and said goodbye and we told her we had to leave. Cordelia and I steered her into the activity room into the care of the nurse and we walked right out of the institution. Did I burst into tears? No, I didn’t. Should I be crying my eyes out in emotional agony knowing full well that if I do see my mother again before she dies it will only be to see her in a way worse state of sickness and diesease than she is now? And is it even worth coming back to California to see her like that? It probably isn’t worth it. But right now, I am not sad. I am happy. The sun is shining, as it consistently does in California and I had some quality time with my mother. I am grateful for that and I am happy that I was given these special moments with her, for the memories of these special moments will live with me forever and I will always remember my mother, the great imitator of chickens…… I think I will always be able to muster a smile through my tears which I will inevitably shed at some point….

 

Forget-Me-Nots by Debby Clark

8 Responses to “Diary- Observations of my Mother’s Alzheimer’s”

  1. Angeljewellery February 22, 2014 at 5:59 pm #

    I read it Rhea. Dear Ellen, dear you, and all of you who care for her, my heart goes out to you all.xx

    • rheahboyden February 22, 2014 at 7:34 pm #

      Thanks for the feedback Linda! xxxx

  2. Todd Vogel (slipacre) February 26, 2014 at 3:31 pm #

    Sigh. This is so sad, and yet good you are in such touch with your feelings. I am not sure though that Ellen’s stubbornness has anything to do with her condition, it was always something she was pretty good at – and I understand how that made things all the more difficult.

  3. marita casartelli downes August 16, 2014 at 2:42 am #

    Dear Rhea —

    I am finally catching up on facebook and reading about Ellen. What a writer you are! Ellen seemed so alive, so “Ellen” for lack of a better term. I wonder now that I am older if our foibles just get exaggerated as we age. Like Todd, I too remember Ellen as being strong willed. I also wondered if she disliked having her diaper changed when she was a baby. Maybe Shane would know. And she was always lucky in love!

    I hope you do go to see her again.

    Marita

  4. Kimberly OHara August 19, 2015 at 8:52 pm #

    Thank you so much for sharing your Mom with us. We are at the beginning of this with my mother in law and this is a great help to us. God bless you and your family.

    • rheahboyden August 19, 2015 at 9:04 pm #

      Thank you Kimberly. I wish you strength and patience dealing with it too. Blessings to you and your family too.

  5. mark streuli July 24, 2017 at 7:42 pm #

    such a moving and sad blog. I knew Ellen back at CC and never forgot her and her strong presence. I admire you for the support you gave her. So lucky for her yet so hard for you. my thoughts go out to both of you.

    • rheahboyden July 24, 2017 at 7:51 pm #

      Thank you so much for your kind words Mark. We are sad Ellen is gone but very relieved that she has finally been set free.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: