Alzheimer doesn’t have to be a long goodbye

As you all know, in November 2023, I went to spend two months with my mother, while her caregiver went to visit her own family in the Philippines.

Just a reminder to all those who are not familiar with my mother’s story. My mum was drifting into her silent world of Alzheimer for 18 years, after my nephew, who was 21 years old died from a motorcycle accident. When my dad died about 2 years ago, I have been asked by my siblings to come and help them put mum in a home for “Mentally weak” people ( nice name for people who are not in touch with reality), which I did.
Fate had another  plan for us and over 3 months of spending 24 hours 7 days a week with her, most of my mother’s Alzheimer symptoms disappeared. I have  changed  her food, took off her medications ( I took two, her geriatric took the other 7), I  managed her pain with distraction and placebo, eased  her back pain with seeing a chiropractor, changing her routine, focusing on her mental health and mum came back.
Many people just said to me back then“ it was temporary. This is how Alzheimer is, comes and goes” but her progress was stable and in constant improvement for two years. She never, drifted back to her silent world of nothingness.
Several months ago, I went there again. It was kind of a test to see if it was truly temporary. I had goals of improving her condition even more. I’m a fan of stimulation and small progress and very optimistic in my attitude. If I won’t make any progress, at least I tried.

Yes, I had many doubters to the point that at first, I doubted myself. My plan was to be with her for 10 days before her caregiver is leaving and record what I consider to be a potential change and be there after her care giver is back and follow up on the changes. I was with my mum 24/7 for about 37 days out of those two months.

Wow, that was very successful.

The interesting thing was that mum herself was not the issue but those around who kept telling me that I can’t teach her anything because her short-term memory is gone. Well, let me tell you. My mum learned many new tricks. She is able to do things now, that she never could. When I say “never” I mean, never!
Conclusion: When there is a will, there is a way.

As the first visit, I kept a diary of everything we did, said, tried, ate, hours of sleep, visitors, elders’ club… Everything I’m writing here is taken from my diary.

(Note: I started writing a summary of the successful changes and it ended up being 25,000 words blog post so I have decided to add it to the book I’m writing about my mother recovery story and write here only the short version of the things that have improved in the two months I spent with her. Warning, it came out long as well)

1. In the past, we had an occupational therapist who came once a week for an hour to work with my mum. I thought this was fantastic hour but amongst my siblings, I was part of the minority, so we stopped it. This whole time I was with my mother, was about 8  to 16 hours of occupational therapy a day. I did some puzzles with her, talked to her about her life, childhood memories, did some art: quilling, air drying clay, sawing, diamond art, read books, simple math, sort out cards to red and blue, took her for a walk outside ( go down the stairs) bring some plants home ( she loves plants) cook with her, memory games, clear the table, wash the dishes, set the table… (sadly, she refused to do all that with her caregiver but after I left, she was willing to do more with her.)
2. The number of visitors increased and since she heard us using each other names more often, she remembered the names more than before. We went over some photos albums, and  I also wrote the names of the people on the photos on her fridge, which helped too.
3. I bought her an adjustable small table that could reach her breast when she is sitting on the sofa so when she colors in, she won’t have to bend. That has changed her back pain significantly. ( She helped me assemble it, with a screwdriver and reading the step-by-step instructions)
4. Sometimes I would put the electric foot massage underneath that table which functioned as a footrest and lifted her legs even higher and eased the back pain even more. ( She knew how to turn it on and off by herself)
5. She goes to the elder’s club three times a week. She loves it! Looking forward to it. Over there she mainly eats ( breakfast, morning tea and lunch ) and does amazing art. ( the week after I left a year and a half prior, she went for one day only and before my dad died, she refused to go to the elder’s club)
6. Since I could not control what she eats there, ( carbs, carbs, and more carbs) I made her the chocolate bar ( dark chocolate, no sugar, peanut butter/tahini, nuts, and coconut oil) so she has it in the morning, so she skips breakfast at home and skips breakfast at the club. Some days she would help me cut the chocolate bar to squares.
7. I changed her diet to low carb and topped up her protein. Her caregiver was fabulous, and she was very cooperative about this way of eating. For the first week she ate bread she brought from her elder’s club and after that, zero bread!!!!!!!!!!!!!! ( only when we ate outside, we ordered some special bread, but it was to taste only). Her food during my visit and now consist of 2-3 protein serves ( Salmon, Chicken liver, chicken, beef, hard cheese, Haloumi, High protein yogurt with nuts as a dessert) and 3-4 vegetable dishes. She eats everything and she loves it!!!!!!!!!!!!
8. At the club she did amazing art pieces but at home, only colorings it and was drifting again to using one color only. When I asked her to do the same art at home, she refused. I put some quilling art shows on the screen, went to buy quilling material and she started making flowers. ( see the top photo of her flowers that I assembled myself. I remind you that two years prior, she could not do any fine motor activity rather than colour in). By the way, she refused to give any of the artwork she did, or we did together as a gift to any of my sisters, no matter how much they’ve asked. She literally asked me to take a photo of this art piece and send it to her art teacher in the club, which I did.
9. I bought mum the quilling Pen to role the paper and make flowers, and she couldn’t use it because she had to slide the paper in a very thin slot on the pen ( just like using a needle and thread). When I talked to her art teacher, she said “ don’t bother, old people rather use their fingers to role the paper.” Which I did. When her caregiver came back and I asked her to do some art with mum, mum started using the quilling pen. For the last two weeks, of my visit, she used the pen all the time and got better at sliding the paper in and her rolled paper looked even in size.
10. At one stage, I introduced her a diamond art activity that my sister sent her from the USA. At first, we sent it to the club and the art teacher taught her how to do it. When we tried at home, it was a disaster. She just put the stones wherever she felt like. I tried to explain it to her, but she was upset with me. In the middle of the artwork, she figured she needed to use the stones according to the instructions. The next piece we gave her, she did perfectly. Much like young kids, she learned, from her own mistakes. The diamond art is a very delicate and requires fine motor skills and patience. It gave her another stimulation and a source of pride ( I remind you, she only colored in at home before this visit)
11. Since my mum used to make polymer clay flowers 25 years ago, I also brought some air-drying clay to make some flowers. This was more challenging for her, but she did it. It also gave us an opportunity to talk about this period in her life when she sold her polymer clay jewelry and another form of art and another stimulation.
12. Sometimes, she enjoyed doing art so much that she didn’t want to go to sleep. She would say “ I need to go to sleep now” and then “ but I don’t want to sleep” and I would say “ mum, there is no club tomorrow, you can go to sleep whenever you want” and she kept on working on her art. ( though, it made me realized that the routine of going to sleep at 9pm and getting up at 7, is better)
13. I think the fact I was sitting next to her and doing art, ( the same or something different) created a wonderful rapport and when her caregiver came back, I asked her to do the same and mum was way kinder to her caregiver when that happened.
14. The first ten days after my arrival, ( Before her caregiver left) mum was very not kind to the caregiver and even rude to me. A week after she left, mum was still angry when I ( or anyone else) said something that seemed “critical” towards her. ( even if we asked in frustration, where was that thing? As if we are blaming her for moving it, which she did!) she was aggressive. The third week, all of it was gone. She was more relaxed and even made jokes about things disappearing. ( It could be the food or the stability of my presence. I was with her all the time)
15. I have notices she was very rude to the caregiver for trying to help her get into or out of cars. I said no one is helping her get in or out of cars anymore. Sometimes it was hard for her to do it, but I insisted that no one helps her. You know what it did? Made her arms stronger and gave her a sense of independence.
16. I didn’t allow anyone to put the TV/News on and alternated between songs in Farsi and art shows. She was happy to the max.
17. Her caregiver used to leave her for an hour or two and go shopping one or twice a week for a year before I came. It was our suggestion, and we have a camera in the living room so we can make sure mum is fine. This whole time, mum slept of colored in but could not use the TV. ( OMG, you have to press so many buttons in several remote control to make that TV function). Every hour, the TV would stop and wait for someone to press a particular button. For a month, I told her, “mum, you need to press the OK button” ( it is in English, she can’t read English) and she just couldn’t do it. One day I left her for over 3.5 hours while she was sitting in front of the TV and making flowers, when I came back, the TV was still on. I knew she had to press the OK button and she did. When there was no one to do it for her, she did it!!!!!!!!!!
18. My mum left Iran when she was 9 years old, and she could never read in Farsi. In my prior visit, I put one of the books aside and she tried reading the heading of it in Farsi. This time, I printed one of the songs in Farsi and asked her to read it and she did read most of it. The first thought I had was “What a waste!” I took a video of her reading the song lyrics in Farsi. Otherwise, some people would say I imagined it. (I myself can’t read in Farsi, but I know the song so I could tell she wasn’t making it up).
19. My aunt and uncle and cousin called from the US to talk to her. They conversed for about half an hour in Farsi (I understood everything she said). At once stage, they asked to talk to me when she told them about a young man who bought their house and how much he paid. They wanted to ask me if she made it up. She didn’t!
20. Twice in this visit, her aunt called and talked to her, again, for more than half an hour. The conversation in Farsi (her mother tongue) was fluent and mum seemed to encourage her aunt that “this is life, we can’t just stay home and feel sorry for ourselves”. It was inspiring to hear it. (a week after I left, her aunt died. Mum is 85 this year, her aunt was very close to being 100 years old and she was sharp in her mind until the end)
21. I did some simple versions of Sudoku with her, and she was very proud of herself.
22. For the first week before we changed to low carb she ate bread she brought from her elder’s club and after that, zero bread!!!!!!!!!!!!!! ( only when we ate outside, we ordered some special bread, but it was to taste only). She asked if we have bread, we said “no” and that was it!
23. I took her to eat outside on average twice a week. She loved every second of it. The purpose was to stimulate her senses by exposing her to different food, drinks, flavors, textures and watch people. ( she loves people watching!) she even said she enjoyed it. My mum was a chef, she never ever in her life said something nice about anyone’s cooking. The maximum was “not bad.” The fact she said “It was nice” or “ it was tasty” or “ it was very good” was a huge progress.
24. To increase the stimulation through taste and texture. I bought special fruits for her to try. I only bought one for every day and it made her very happy. I figured we would still be on the low carb section if she ate one piece of fruit a day.
25. I cut the coffee with goat milk ( she didn’t use it much) and used cream instead. Then I transitioned to tea and later on bought decaffeinated tea with many herbal options. This transition went very well.
26. One day I bought cherry tomatoes, and she was very excited about how small and tasty they were. It is important to remember that she lived as a poor person and when we were kids, cherry tomatoes were rare and extremely expensive, so we never had them at home. From that moment on, I bought mainly cherry tomatoes and when she asked about their price, I said “I don’t know ” ( which was true) or “ they were expensive, and you are worth it.”
27. During the transition to tea, I asked her to make the tea herself ( she has a hot and cold filtered water ready at all times). Several times she asked me, where were the cups and I pointed to the cupboard above her and several times she asked me where the tea was, and I pointed to the other cupboard. It was high but she had no problem lifting her hand to take it.
28. The biggest change was the morning routine going to the club. Before I came, the caregiver would make her breakfast, coffee, answer the phone when the bus driver asked her to come down the building, the caregiver would open the door ( two locks) invite the elevator, press the ground level, mum would sit on the bench ( refused to stand on the side walk for the bus) and the caregiver would tell her when the bus arrived, she would help her go up the bus, ( and be bullied) be with her on the bus, help her come down and spend the day with her in the club, making sure she eats and goes from one room to the other and do the exact same thing returning home. Over the five weeks I was with her. Mum made herself tea, took out the chocolate bar from the fridge and ate, put her cup in the sink, answered the phone, when the bus driver called( she never answered the phone before) open the locks on the door, invited the elevator, go down the elevator ( by herself) stand on the side walk, go up the bus ( I watched her at first from the balcony) spend the day at the club by herself, come back by herself all the way up to her apartment. I did all this gradually and the idea was not to freak out when she felt confused sometimes.
    Who said we can’t teach old dogs new tricks

Currently the caregiver goes with her to the club twice a week, but mum is doing all the things she did when I didn’t go with her and one day a week, mum is going and coming back all by herself.

29. I realized she was struggling with picking clothes from her cupboard because she keeps moving clothes from one place to another. My sister and I took out of her cupboard 9/10 of what was in there, she doesn’t use ( too big, too small, old, torn…). To make sure she won’t realize we did it, we put towels and linens at the back. Every two three days, I would put things back where they were supposed to be. After a week or so, the cupboard stopped changing. It made it so easy for her to find clothes. Less to choose from, was a relief for her.
30. She used to put some of the hangers on the doors of her cupboard, which made it harder to open the cupboard doors. I went to buy a hat and coat standing  hanger and the caregiver, and I kept putting the clothes on it. Eventually, she started doing the same.
31. I bought her a chin up bar to attach to the doorstep and put it in a height that she only needed to lift her hands to it and hold it for as long as she could. The first day she couldn’t do it at all, the second day, she could use one hand and the third day she held it with three hands. ( I only got it the week before I left so the only progress I could witness was the fact she reached it with two hands and held it for one minute)
32. One day, I gave mum money to give the art teacher ( for a frame) with some form of art we wanted mum to do in the club. I wrote on the bag the art teacher’s name and asked mum to give it to her. She didn’t. The following time, I said again, give it to the art teacher. She didn’t. When I asked her about it, she didn’t know what I wanted from her. ( I ended up going to the club myself to give the teacher the money for the frame and the art piece). Three weeks later, I gave her the money again for another frame. I did the exact same thing. Wrote the name of the teacher and told mum that she needs to give it to her. She did! and she was very happy and proud of herself for it.
33. From time to time, she asked me if I have a pill to give her for the pain. ( once every 5 to 6 days) I gave her my stevia tablet or magnesium. When she asked what it was, I said “magnesium.” That satisfied her and the pain was totally gone within 5 minutes. From her caregiver she asked for Optalgin (Metamizole or dipyrone) which her geriatric said never to touch, because it is dangerous, and banned in several countries around the world, so the caregiver gives mum Magnesium and says it is Optalgin. That works brilliantly as well.
34. She was very unaware of how much things cost ( She never ever did the shopping in our house, my dad did). When she saw the price on the yogurt or anything we bought she use to say “ Thieves.” The solution was to take the price tag off the product. If she asked, we would say a ridiculous price and when that didn’t work, the reply was “ Mum, you are very important and your health is important so we would buy anything regardless of how much it cost, you are worth it!.” That worked well! Slowly, she stopped asking about the price.
35. When we went to sleep over at my sister’s place ( totally new place) everyone was worried she would be very disoriented with the toilet at night. She was perfectly fine. During the day, she helped us build things using hammers and screw drivers and sat in the dinning table to make paper flowers.
36. My sister brought a big piece of fabric to saw. Since my mother loved sawing and hasn’t done that for over 7 years. We thought it’ll be a great way to stimulate her. She helped me cut the fabric to the right size, ( giving me tips and actually cutting it) , we fixed the old sawing machine, and she did most of the job. She was proud of herself and came to life. Sadly, the sawing machine was so old, and she can’t thread the needle by herself, so she won’t be able to do it on her own. ( None of my sisters know how to use it).
37. I put my dad’s photo on our dining table so he could be with us when we eat ( previously, it was on a high shelf above the TV). Several times I saw her giving the photo a kiss. She was sad or crying when she saw the photo and we had an opportunity to talk about him. I thought It was a better approach to talk about him.
38. She has a Bidet in her toilet that she needs to turn off every time she uses it otherwise it drips to the floor, so her caregiver put a bucket underneath it just in case. Her caregiver went every day to check it, to make sure it is off. The whole time I was there, she forgot to turn it off once ( I missed the memo about checking it every day) but after this one time that we came home ( after two days at my sister’s place), and the bucket was full. She remembered to turn off the Bidet throughout  the whole time I was there. She can learn!
39. About five times during this period, I went into her bed in the morning, just before she got up. It was a beautiful bonding time. I hugged her and she hugged me back and kissed me (she never did that) and we talked and did some stretches and brought up some memories. She was very affectionate towards me.
40. Every time I fixed something or found creative solutions to things broken or not working or when we did our art, she was very impressed. I always said, “I learned it from dad” and that made her very proud. She smiled and laughed in joy when we mentioned him that way.
41. I managed to take her for a walk outside for 50 minutes.
42. I cleared her kitchen cupboard from so many pots and pans and left only the things she and her caregiver were using. (minimalism was the name of the game!)
43. She had an issue with her clothes in the washer. She wanted me to wash her clothes every time she accumulated 3 – 4 pieces (every other day). She was very frustrated she couldn’t use the washer on her own because it was a new washer, and all the instructions were in English. Together with my own clothes and the towels, I just did it to make her happy. She was very independent in taking the clothes out of the dryer and was keen to fold the clothes.  
44. I realized she was very particular about the location of things in her house. When I moved some things on the table, she said, there were four containers here and now there are three, where is the other one? At first, I said to myself “cool, she remembers what was there” but then I realized that she freaks out when I move things so… I started moving things several cm from their place. I moved the fan, moved the radio, moved the salt and pepper, moved the plants… At first, she put it back where it was before, eventually, she stopped.

At the end of my visit, the eating area and the benchtop were totally clear. She actually liked it.

45. Surprisingly, she didn’t say anything about the mess I did in the kitchen with my concrete artwork. ( sand, concreate, Paper Mache, containers, plastic bags, silicon containers, water…) It was a mess. She was always very fussy about dirt and mess that but this time she didn’t. I tried putting everything in a box I found but it was still a mess. Everyone who came, asked me how come she says nothing to me about it. About 6 weeks into my visit, she said to me very gently to clear the mess and I moved everything to the balcony. I think the “discount” was because she appreciated the fact I was doing art and upcycling containers as a form of art.
46. Just the week before I left, she turned very quiet. She said to me every day “Maybe you can stay here a bit longer” and laughed, knowing I won’t. I knew she understand that me packing and talking to my family about seeing them soon, was a sign that I’m about to leave. I told her several times, that I miss my husband and the kids, and my granddaughters and she said, “I know, I’m just kidding.” When I told her that my visit was for two months, she said “ Wow, that was long, it didn’t feel that long.”
47. On the last days, she started asking me about the length of the flight again. She understood the situation perfectly.

When we said goodbye, I told her I will visit her again in six months. There was no crying this time. I talked to her on the phone straight after I landed, and she asked me how the flight was. Since then, I called her every other day. In every conversation she talks to me about her artwork and asked me when I’m coming again. She remembers!
I came home very happy with what we did in two months. She was amazing and very cooperative and progressed a lot. The range of stimulation has increased significantly, and her world now is so much wider than it was before. I’m a true believer that combining  stimulation and doing it gradually is the formula of  every new learning. A formula for success. It worked for me again.
Don’t get me wrong, she still has her “things” that drove me nuts but the more I focused on the good things and the progress, the more of them I experienced. ( and mum did and everyone around her)
It was another success experience. Another proof of the plasticity of the brain that Alzheimer diagnosis is not a death sentence, and we can change it if we believe we can.

Wishing you the belief you can change the things you want to change   
Hugs.

Ronit

The Happiness Coach
https://www.behappyinlife.com
https://www.ronitbaras.com/