Ria Langenhoven
This booklet contains information about: Ria (Maria Aletta) Langenhoven.
Date of intake: 29 February 2024
Age: 67
Diagnosed by: Prof Dana Niehaus
Date of Diagnosis: August 2021
Type of Dementias: Frontotemporal & Lewy Body Dementia
Medications:
MORNINGS MIDDAY EVENING
The following is a documented report on how Ria progressed as we weaned her down from the medication as stated above. The only medication we still administer as it’s very important for good health: Ecotrin and Aspavor and vitamin supplements as per the family’s request, including Cranberry extract and Citrosoda for her chronic problems with Urinary Tract Infection.
When we have a new resident, before intake, we talk to the family about our non-pharmaceutical care approach, what it means and why we do it. We either ask the family to get their Dr who prescribed the medication for a wean down prescription, that it’s done in a safe way over an appropriate period or we speak to our Dr who assist us in this process.
We’ve taken Ria’s vitals daily and kept our Doctor updated. It stayed in normal range, we’ve had 6 days over the 9 weeks where it was average 145/90 (referring to above 40)… a day here, a day there.. not consecutive days. Rest of the time average on 130/75. Pulse average
on 75. Sugar average 5.5
We were advised that Ria had shown some challenging behaviours in the past and Frontotemporal Dementia and Lewy Bodies Dementia are already a challenge in itself. When Ria came to us on 29 February 2024, we have started the process with our medical professional team, to wean her down from these 5 types of medications:
WEEK 1 – 11 to 17 March 2024
Ria is weak, not walking properly. She is unsteady on her feet and is a very high fall risk. She however walks all the time, but needs a care worker to be by her side all the time. Ria is eating excessively (could be a possible symptom of FTD or that she is very hungry and thirsty?), grabbing other resident’s plates and cups at times.
Ria can’t form words herself but rather repeat, very softly, almost not audible but just whispering, whatever she hears another say or being asked a question. Ria is very quiet and reserved. She sleeps very well, not getting up during the night. She drinks liquids very well. Ria loves playing with her ball, interacting with the care workers.
WEEK 2 – 18 to 24 March 2024
Ria is walking a lot stronger and can even manage by herself, although we don’t leave her side. She is talking a bit more clear and even asked what time it is. She is asking for water and asks about her cell phone. Ria removes her nappy herself in the toilet and put it on the window sill for the staff to remove. She tells the staff when she is not feeling too well and wants to go lie down. She is saying thanks when she is helped or the staff gives her something to eat or drink.
18 March 2024
I (Sufrani, Deputy CEO of ADN) took Ria to the Dentist today. She could not communicate with him so I did the talking about what we suspect. The Dentist asked me if I will be able to talk to her to explain he will need to take footage of her teeth and also stand by the machine for a full angle footage. I’ve explained to her what is going to happen whilst standing with her and talk her through what to do. Although she did not speak, so understood me 100% and we got the footage. Ria was given medication and if it did not get better, teeth will have to be extracted.
WEEK 3 – 25 to 31 March 2024
We are now starting seeing improvements on an almost daily basis.
Monday, 25 March
Ria is going to the toilet herself, although a care worker is still accompanying her. She started talking to the care workers. There has been a change in her eating habits, she is eating and drinking at more normal levels. She loved the cake we had today!
Tuesday, 26 March
Around 16:15 Wilhelmina gave Ria a pen to write her name on a piece of paper, which she did. She also wrote her surname. After dinner, Ria took her plate to the kitchen, thanking the kitchen staff politely. After 7pm Vicky asked Ria how old she is, she replied 102 😉
Wednesday, 27 March
At 17:40 Ria asked Vicky if she could have pap, which they made her and she finished her bowl nicely. Ria woke up at 03:45 and asked the night staff is she could get a sweet to eat. They gave her a snack, she finished it and went back to bed.
Thursday, 28 March
At 10am Ria used the toilet and flushed it herself while Getrud was close by.
Friday 29 March
Ria woke up around 2am, telling Lucresia she would like to go outside. Lucresia explained to her that it’s still night time and they can go out in the morning, Ria then slept well after that again.
Saturday, 30 March
At 11:40 Ria was sitting on the outside deck with Johanna. She then decided she wants to go back inside the house. On her way inside, she saw a wheelchair standing on the deck, she then pushed the wheelchair until the room and then left it and went inside. 19:30 Ria said she wanted to play ball, she played with Lucresia for 15 minutes, then saying she is tired and that was enough for now 😉
WEEK 4 – 1 to 7 April
Monday, 1 April
At 17:00 Ria was given a peach, which she enjoyed thoroughly. She then walked to the kitchen, opened the bin and threw the pip in and walk to the living room again. Ria then walked on her knees to the couch and went sitting there. Ria went to bed at 23:00 and slept until 06:30. Her nappy was changed and she was up and walking. We need to find out why Ria is walking on her knees and we need to get her knee guards to protect her knees.
Tuesday, 2 April
08:00 Ria asked for a sweet to eat, and at 10am she got an orange and started peeling it off herself.
Wednesday, 3 April
Today is the first day Ria woke up early, alert and well awake! At 09:20 Vicky took Ria to the toilet, she said to Vicky she did soil herself and Vicky helped her to bath, during all this Ria said thanks very much. Just after 5pm, Ria went with Johanna to go sit on the outside deck. On the deck she then started walking on her knees again to the couch. She then got up and sat down. At 17:30 Ria was writing her name herself on a piece of paper and then Vicky asked her what’s for dinner, and Ria wrote “mieliemeel” Ria went to bed at 23:00 and slept until 06:30
Wednesday, 4 April
Just after 20:00 Ria took the broom and started sweeping. She then got to her knees again, walking to the couch and went sitting on it. Ria woke up during the night, went to the toilet and then asked for something to eat. After that, she went back to bed, sleeping well.
Thursday – Sunday, 5 to 7 April
Ria has been walking a lot, and playing ball, always engaging with the care workers. Ria slept very well again, right through the night. We now see Ria’s daily and nightly routine is starting to settle. Walking a lot, playing ball, always wants to be with a care worker. Sometimes walking on the knees, just a short distance, then gets up again. Sleeps well during the night. Always thanking staff. Eat and drink at normal pace and portions.
WEEK 5 – 8 to 14 April
Monday, 8 April
Vicky asked Ria if she has a cell phone nr, she says yes. Vicky asked her what the nr is, she said 081… then she did not continue. Ria woke up at 02:25, asking for a peach, she ate well and go back to bed. Ria played with puzzle pieces, and went to JJ and touched her hair.
Tuesday, 9 April
At around 16:00 Ria said she wants to go to “mamma Martha” in South Africa. Later the evening she took the broom and swept a little while. (Martha was her mother).
Wednesday, 10 April
Ria had a good day, usual routine. She woke up at 04:00 and went to the toilet. We have a couch on the deck that can pull out, Ria pulled it
out to see what is inside 😉At 21:30 Ria told Vicky she is hungry, they gave her something to eat and she was happy. Today Ria was playing with the doll, saying “baby”. Ria is not showing facial expressions. This is associated with LBD, but will see if she might show some sign of emotion later on.
Thursday, 11 April
Ria played ball and the staff spent time with her with her photos and she told them who they all were and then told stories about the past. She had a very calm demeanour and she slept very well through the night.
Friday, 12 April
Similar day than yesterday. Ria is very calm, soft spoken.
Saturday, 13 April
Ria slept right through the night until 09:30. At 10am we gave Ria her breakfast and then we helped her to bath. After that we went for a walk. At 12:45 we were standing with Ria at the kitchen, giving her water and she started talking!!! It was very clear what she was saying. We have captured the following on video as well: She said the medication that she got, made her very sleepy. She really just wants to come with, with everyone else but she could not, she could not as she just wanted to sleep. When she gets up, she just wants to go sleep again. She feels like she is being punished as she can’t even finish drinking a glass of water as she feels the need to just go to her bed and sleep. The family is ecstatic! Saying it’s the first time in approximately in a year that she can talk, they just can’t believe it…
Then later the day she told us about her mother and growing up in Upington. That she sold ice cream and baked bread. She then went down to the floor to walk on her knees again (by now we’ve gotten her knee pads and put it on quickly) and when the staff asked her why she does that, she said she wanted to show us how she had to walk when she got a lot of medication, she could not walk properly anymore. She said she remembered the other day she walked like that on the deck and she wanted to show us how she felt with the medication.
Sunday, 14 April
Ria slept through again but got up at 6am, first time this has happened! And she was talking non-stop. She was telling the staff about the ice cream she sold from a food lorry. She also spoke about bad things, very known in Lewy Bodies. We need to establish what is delusions, hallucinations, what happened really to her and what are other people’s stories she heard and mix now with her own reality. But one thing still remains: it’s Ria’s reality and we need to address her unmet needs in her world. She uses words/phrases such as the baby is dead, baby was found in a shoe box, snake skin, suicide, money which was stolen, going to jail, that people said she is lying…
She speaks fast, and a lot of things at once, the words just tumbling out of her mouth. Ria had breakfast, had her medication and said she must be taken to bed, she wants to sleep.
She was taken to bed, and then she started talking again, in a calmer tone of voice, talking about a long time ago … she was young and they lived on the farm, that she had a small car and there were flowers… and then she fell asleep. Ria woke up around 9am. She had breakfast and coffee. We then took her to bath and she was just calm the entire day. Lunch time she walked to the kitchen and saw Christofine is busy making desert and she smiled, saying she used to make that as well. She then saw chicken schnitzel being dished up, and she went over to take a bite and she said the fish is really nice.
We have an indoor built in braai outside the kitchen area and she walked over there, started talking about how they had braais at home and enjoyed it with the family. Ria is very calm. We know it’s not always going to stay this way, as she is living with 2 most challenging Dementias and “aggression” is the international language of Dementia: we constantly need to focus on what her unmet needs are. I also spend time with Ria and she was reading softly from her beloved book, a book about London. She gave us snippets of her memories of London.
Ria also asked to play ball with me, saying she remembered me teaching her how to play ball when she could not talk…
The evening shift reported that Ria is still very calm, talking softly, at times repeating the words the care workers are saying when talking to Ria. She asked to be taken to bed just before 10pm and she slept well during the night.
WEEK 6 – 15 to 21 April
Monday, 15 April
At 9am the care worker asked Ria if it’s okay to go take a bath. She anxiously said she does not have any clothes to wear and they showed her cupboard to her. She was then relaxed. When they got to the bathroom, she said she wants to bath herself, so she did that and
brushed her teeth on her own, with the care worker sitting with her to help in case it’s needed. We also see a side of Ria where she asks for help is she needs it, and she says thank you.
10:30 She asked the care worker the time, and Ria said she is now just going to sit and doing nothing and relax. She asked Vicky how many children does she have, and so she talked with Vicky until lunch time, eating well and thanking the kitchen for the food. Since the afternoon, Ria started to only repeat what she hears the care workers are saying. She went to bed at 9pm and slept through.
Tuesday, 16 April
Ria woke up 08:30 and had breakfast and a bath. She went back to bed and sleep. Ria has been quiet. After 2pm I took her for a walk, she came back and went back to sleep.
At 15:20 she got up and started talking non-stop. She was talking about a lot of random things, she would talk and take a word and start talking about something else connected to that word. She was talking fast and all the time, also talks of N$17 000 that she lost, and money that was stolen and she was worried about her investments. She became increasingly anxious and the care workers engaged with her, making her feel she is heard by them, her anxiety and concerns and that they believe her and helped her to meet her unmet needs about her worries. She became more relaxed. She went to bed after 10pm and then she started singing! Everything she sees, she hears and her own realities…
This is known in especially Lewy Bodies and Parkinsons related Dementia:
Dementia Associated Compulsive singing (DACS). The person will then start talking but in the way of singing, and is actually a beautiful and
delightful way of communicating. Ria sang (talked) until 23:40 and then asked to be taken to bed. She slept until 06:30, her
nappy was changed and then she walked around, never sitting.
Wednesday, 17 April
Ria woke up before 7am, and had breakfast at 8am. She was given cereal and she then asked if it is Weetbix….. which it was. After breakfast she told the care worker she is pregnant for 2 months already. We have had experience from the past that such a statement MIGHT also
mean that they want to go to the bathroom or is constipated. We always try different things to address possible unmet needs. Ria’s tummy did go down and she did not mention that again. Today her hands are sweating a bit. She is very calm, not active. After lunch she asked to be taken to bed and she slept until 5pm. Ria was given a glass of water, and then she started mimicking to what seems to be typing on a type writer with her fingers. The family was contacted about her past work experiences. We knew from her “This is me” document that she worked at AMC Classic and at a Dr’s practice, but we were not sure what her daily tasks exactly consisted off. The family indeed confirmed that Ria did years of typing and was actually very good at listening to dictation of the Dr and relayed that on the type writer. So she thinks she is working, and we are going to test that and help her!
When a family member comes to join us, the family needs to give us a filled in document, called “This is me” – As every person stays unique with their background, identity, type of Dementia and stage of Dementia, it’s crucial that we understand this person as much as we can to be able to help them in their unmet needs that may arise. During the evening, Ria is just repeating what she hears/is being asked. She asked to be taken to bed after 8pm and she slept until 02:20 which she then went to the toilet and went back to sleep. She woke up at 6am, they changed her nappy and she then went to sit with the care workers in the living room.
Thursday, 18 April
Ria woke up just after 6am, went sitting with the care workers. Had her morning routine, then went back to sleep at 08:30 until 10am. Ria got up, starting repeating what she hears. She did a quick dance movement, and then she started typing… She was given food and liquids and the care workers had to help putting her by her mouth, as she did not want to hold anything, she was just standing, did not want to sit down, and she was typing non-stop with her fingers in the air.
Ria’s cousin, Empie came to visit for the first time today. It seems she did not recognise her totally, just repeating what she hears her saying or asking. They went for a walk and Empie was talking very calmly to her about their time as kids and younger adults. They have always been very close. When they walked past a bush of flowers, Empie commented how beautiful it is. Ria then picked a flower, and said “For you”. It’s was the only time she spoke her own words and in what a beautiful gesture she’s done it! Empie stil has that, now dried out, flower. Ria had dinner at 6pm and then it was noticed that she is walking to one side. The family did tell us if she starts walking like that, she most probably has urine infection, and that she is very prone for that. A sample was taken then to be send to our Dr first thing in the morning. Ria went to bed early, woke up at 01:15 asking to go to the toilet and for something to drink. After her unmet needs were met, she slept again.
Friday, 19 April
Ria woke up at around 07:30, walked around and had breakfast at 8am. She walked around a lot and did not talk much. She only repeated what she heard. The urine sample results were sent to our Dr and it was confirmed that is an UTI. Ria then got the necessary medication to treat it and given extra liquids to drink. Ria walked almost all day, had her meals, not speaking a lot, went to bed before 7pm. Ria slept until 01:35, went to the toilet and went back to sleep.
Saturday, 20 April
Ria woke up after 8am, had breakfast and she went back to bed. She then woke up after 9 again and was taken for a bath. Berrie, CEO of ADN, came around with a laptop so Ria could type on it. Ria recognised the laptop and keyboard and started typing. Later in the day, she started speaking about wanting to kill herself some time ago, with a gun and that she drank Sta-soft. (The latter is true). She then said she can’t remember why she wanted to do that. Ria had lunch and then she started walking around until 6pm when it was dinner time. During this time, she was communicating by the way of singing again. She mostly sings what she sees…objects, people whilst observing her surroundings, mixed with what she hears other people say/ask, she will repeat. Ria had dinner and then carrying on singing, but sitting in the lounge with the rest of our family, up until 10pm, still singing, then went to bed. She slept through until before 7am, when her nappy was changed and she went back to sleep.
Sunday, 21 April
Ria woke up at 9am but did not want to get out of bed. She got breakfast in bed (always getting her medication at meal times as prescribed) and went back to sleep. She woke up at 10am, had a bath and just walked around again the whole day, but not talking, just in a calm manner. Ria went to bed at 8pm until around 10pm. She then got up, walking around and talking to herself. After 11pm she went back to bed and slept until after 4am. She woke up and started singing for over an hour and slept again.
WEEK 7 – 22 to 28 April
Monday 22 April
Ria woke up after 07:30 and started walking around in the house. Ria talked non-stop again, about stories from Upington where she grew up and mixed stories about South Africa. At times she repeats what she hears other say or asking her. Ria went to the toilet herself. She is very focused on people today, if someone passes her, she starts singing, describing the person. This carried on the whole day, up and until she went to bed at 22:30.
Tuesday, 23 April
Ria woke up at 04:35, she was taken to the toilet and her nappy changed, she then started singing and sitting with the staff in the living room. After 7am, Ria got up and was signing whilst standing and walking around all the time. Before 11am, she started singing about her
mother, Martha. She was signing that it is her mother, she makes potato salad…. She went to bed just after 11pm and slept through.
Wednesday, 24 April
Ria woke up at 10am and she was talking then very loud, shaking her hands in the air, very scared, saying that people from South Africa stole her money, we should help her, she was in jail and don’t want to go back there again. Lewy Bodies is very known for bad dreams and
she is also of course in a state of hallucinations and delusions. In this moment we have to be there for her to make her feel safe. It’s the very first day that Ria shows signs of clear withdrawal from medication being weaned. She was sweating a lot, talking very fast and saying quite often “please help me”. Ria’s husband came to visit. After 3pm Ria was getting better, seemed calmer. She started singing again also, went to lie down for about an hour late afternoon. Had dinner and went to bed.
Thursday, 25 April
Ria slept until 05:20, started signing, asking for the toilet. After she was helped, and nappy changed, she went back to sleep. Woke up before 7am, started signing again. She walked around all day, singing. She went sleeping after 3pm until dinner time. She had dinner whilst singing and went to bed again. Singing about stories such as the salami in Keetmans, stories about people in South Africa, naming things she sees in her surroundings and words she hears.
Friday, 26 April
Ria woke up before 7am again, saying she needs to go to Swakopmund tomorrow morning, that she booked a Guest House and that she stole a lot of money and that she must go report herself as she feels guilty. (We clarified with the family that once she worked with a lady who supposedly stole money from the employer and it was a great shock to Ria. So she talks a lot about money being stolen, she is in trouble and will go to jail). She was then looking for the airport and she needs to flee overseas (Her daughter lives in the UK and she loved going to visit her in the past, might be a connection there) At this point we address her unmet need and distress by talking about her daughter and to tell us about her family and the times she went to London. Those are good memories for her and get her to feel better. We always focus on creating good feelings.
Ria does not want to eat solids, she drinks Ensure very well. We start suspecting tooth ache. She does show to a certain part of her mouth, talking about not having teeth and the dentist she used to go to. Ria’s daughter from Windhoek came to visit at 14:30. Ria was talking a lot today, non stop. Same as always: her own stories, what she sees, repeating what she hears… Went to bed before 11pm.
Saturday, 27 April
Slept through and got up after 6am and started walking and talking. Whole day, walking, talking and at time singing. Ria still does not want to eat solids. We have established it’s tooth ache. We contacted our Dr and Pharmacist who helped us with anti-biotics and pain medication.
Sunday, 28 April
Got up at 7am, did not want to eat, first time saying her tooth is aching. She was given something for pain and she had Ensure for the day. Walking and talking up until 3pm. She is calm and went to bed at 10pm and slept through.
WEEK 8 – 29 April to 5 May
Monday, 29 April
Repeat of yesterday.
Tuesday, 30 April
Ria woke up at 9am and started walking, but only in her room. These days seems to be the same pattern.
Wednesday, 1 May
Today Ria started slapping people in the later afternoon. She seems anxious. She is in a clear state of Psychosis, talking fast, telling a lot of stories, mixing timelines. We know this is an indication of unmet need(s). She is pointing now clearly to her bottom right side in her mouth. We gave her pain medication. When the anti-biotics is finished, we will have to take her to the Dentist. Our work as carers are now really starting as Ria is awakened more from the weaning down of the medication and we need to find out what her unmet needs are so that we can help her. We have appointed our 3 managers to be with Ria around the clock, engaging with her one on one so that we can really get to know her and to make her trust us and feel safe. After 8pm she got calmer and she talked in a normal tone. She showed the carer her
bracelet she’s wearing: Dementia awareness with a phone nr. She said it’s the illness she has and it make one confused. She sat calmly, and went to bed at 10pm.
Thursday, 2 May
Ria is calmer than yesterday, sleeping a lot.
Friday, 3 May
Ria is talking a lot today, also talks of being in distress. She does not want to go back to jail, they gave her lots of medication that made her sleep. She is pushing and hitting people, but less frequent than Wednesday. We are redirecting her conversation and read to her from her book of London. Still on Ensure and liquids.
Saturday, 4 May
Talking calmer today, not hitting people. Saying her mouth is sore and talk a lot of different story lines.
Sunday, 5 May
Very delusional at times. Talking about people want to kill her family and she apologises that she hit people. She thinks she is in trouble and we reassure her it’s ok and she is in no trouble. She believes she stole money and will go to jail. After a while, she thanks the staff for what they are doing and for looking well after her, they are good people and she appreciates everything.
WEEK 9 – 6 to 12 May
Monday, 6 May
Ria woke up just before 7am, talking to herself. Later the day she is at times delusional, mixing stories. She says her mouth is sore. She was told she is going to the dentist tomorrow and that seems to make her feel more at ease. She remembers quite well. Today it is the first time that Ria showed emotion on her face: a nice smile! We know LBD might have the effect of a “poker face” but we are seeing a smile and we are happy!
Berrie was with Ria and she typed on his laptop:
“My naam is ria LANGENHJOCEN
EK IS BLY DAT RIA NOU VAN MEKASIE AF IS WANT DIE MEDIASIW WEER BEIN WANT DIE
MEDIKSIE TAS MY REI OOK AAN RIA WA SOOS IN TRONK MEDIKSIE BAIE DANNKE SE
MEDISIE MY BAIE MEDISIW AAN”
Translation (spelling and grammar were not 100% correct but one could understand everything): My name is ria LANGENHOVEN. I am glad that Ria is now off the medication because it also affects my brain. Ria was like in prison. Thank you.
Tuesday, 7 May
D-day for the dentist consultation. The ride to the dentist was stressful for her. She was in an accident years ago and that made a bigger impact on her than it seemed at the time. (Family confirmed this to me). I (Sufrani, Deputy CEO of ADN) was waiting at the Dentist for them to arrive, and I could see Ria was extremely anxious and confused. I took her hands and ever let go. She was talking all the time, repeating what she saw, what her senses observed: smells, sounds, what she saw… Her mind was jumping from one topic to the next. We went up a lift and got to the consultation room, she was walking up and down, asking questions about what she saw and read on the walls and magazines, holding my hand. She focused also a lot on people, as she sees someone she will ask who that person is… or compliment a lady saying she is dressed nicely.
She was concerned about how she looked, saying she does not have nice clothes and commenting on my nails and hair and makeup, saying it looks lovely and that she does not look that way. I have purple hair, so she will always talk about “the lady with the purple hair
that is good to her” and sometimes she will even call me on my name. I could hear that beautiful things and looking good are important to her. I’ve asked her if I could get her something to make her feel better about herself, and she said bright orange nail polish. I promised her I would go get her when we are done at the Dentist. I also said I will arrange that we do something nice with her hair – she always used to colour it at a salon.
By this time, she has calmed down and she is talking in a normal way. We were called into the Dentist room and said to wait, he is just next door. During this time, Ria and I had nice conversations. She told me about the Dr she worked for many years, that is where she typed a lot. When the Dentist came in, he smiled, saying she talks a lot and is in her element. Last time he saw her, she was on all the medications still and could not do anything. He asked her where it was sore, she spoke to him very clear, calm. They had a nice conversation and he told us we will need to book for an extraction next Tuesday. He told her to use luke warm salt water to gargle every day in the meantime. When Ria got home, she told the manager on duty exactly what happened and what the Dentist told her.
Ria and the care worker went home and I went to get her nail polish. When I got to our Care Home, Ria was waiting for me. We’ve been together since 9am this morning and she did not want to leave my side. I’ve decided to spent the whole day with her. She was so happy about the nail polish. There were so many shades of Orange, and the one I took, I send a photo of to the family. The daughter said Coral is her fav colour, and then I saw that is exactly what I took, and Ria was ecstatic! Ria was at first sad when I got to the Care Home, she called me on my name, saying she does not want to stay here. She wants to go home at Omeya where her husband is. That we look after her very well and we do our best, but she can’t accept her illness. That it’s difficult for her. I’ve spent over an hour with her in her room, talking to her and explaining again about her Dementias. She told me one night she pulled all her photos off the wall, I asked her if I can help her put it back, and she said it would be lovely. I’ve asked her I what sequence she wants it, and I’ve put it back up for her. We then went for a long walk, just talking. She told me about her childhood and the businesses she used to run (I have the background from the family, she was spot on) I then asked her if she would like to talk to the family (husband and 2 daughters). This would be the first time in over a year that she is able to do that. We phoned the husband, then the 2 daughters. The daughter in the UK especially did not expect it at all and they spoke for almost 45 minutes. The people they spoke about, Ria was all 100% with her remembering of facts and places. The daughter was so overwhelmed and afterwards told me she did not know what to do with her emotions, she was so happy. I was so happy! Ria often told me today that we are all looking well after her and the other residents, she is so grateful. That I spend my money on petrol and use my time to spend the day with her. She is grateful. I went home at 6pm. Ria was worried that I was driving on my own. She said I should please let the staff know when I’m home safe to tell her… then she also told me about the accident she was in those years ago. I told her about a car accident I was also in, and she said God saved us both. During the day, she said to me at times “I need to pee”. I asked her if it burns, she said yes. This is the first time she could tell us she has infection, without us having to wait for her to start walking to one side. We did the urine sample and got her onto medication straight away. Now she has tooth ache AND an UTI. These infections and pain will play a role in the coming days.
Wednesday, 8 May
Since Ria woke up 7am, she is very delusional. She talks again about money which was stolen, jail, and a lot of stories she puts together which clearly is upsetting to her. Drinks only Ensure, not eating (both effects of UTI and pain in the mouth). There is always care worker by her side to re-assure her, to engage with her. The afternoon Empie, her cousin, came to visit. Berrie and I have met Empie earlier this morning to talk to her about Ria’s challenging Dementias, where she is with weaning of the medication and to work together to help Ria connect in her world and reality. We also spoke about Ria’s history and how we can use that to better her quality of life. Empie was wonderful and we are now a team to help Ria. Ria did recognise her but she was anxious because of the known pain. The plan was for Empie to take out Ria to Swakopmund, but we’ve decided not to, to protect Ria. She is still in psychosis, we need to give her time to finish the medication, and have 4 to 6 weeks at least after that. We are still in the process of getting to know the real Ria, in her own unique way, without medication that suppresses the signs and symptoms of Dementia. She gets anxious in a vehicle we now know, and everything she will experience outside her home environment now that is known to her, will overwhelm her and might make her more delusional.
Thursday, 9 May
Ria slept until lunchtime. She had Ensure. She asks to be taken to bed, when she is in bed, she gets out and asking to be taken to bed, gets up again. She did this a few times. She says her mouth is sore and she just wants to sleep. Ria slept through the night also.
Friday, 10 May
Ria woke up before 8am. She is confused and talk a lot, and at times uses words not recognisable. She got Ensure and went back to sleep.
Saturday, 11 May
Ria was up a lot during the night, moving things around. She spoke a lot and words not all recognisable. She was sweating and clearly confused. All the time still, a care worker by her side, engaging with her. Berrie went out to the Care Home to spend time with Ria at about 12noon. By this time, she was much better, talking with him. When she saw him, she asked him “where is the computer?” Her thoughts also jumped very quickly from one topic to another as her senses engaged. She was smiling quite a lot. She did speak about going to the dentist next week. What we’ve learnt now, is that when Ria repeats what you ask / talk to her about, it is because she doesn’t understand you. She will also say that at times: “I don’t understand what you are saying.” Ria went to bed before 7pm, slept until 02:00, was awake for almost an hour, talking. Went back to bed and slept through.
Sunday, 12 May
Ria slept until just after 10am. She had Ensure and went back to bed. The whole day she was rather confused, slept a lot, did not want to eat solids, but had liquids and Ensure. This is clearly the tooth ache. In the evening Ria was walking up and down a lot, talking calmly, but was restless. She thanked the staff for looking well after her. She asked to be put to bed, but then get up again… this repeated for quite a while. She went to bed at 10 and slept through. Today is the last day of being on the medications she’s been weaned from.
WEEK 10 – 13 to 19 May
Monday, 13 May
Woke up 7am, had Ensure, slept quite a bit. She was calmer today, her husband came to visit and this time they could have a nice conversation. Still no solids, just on ensure and liquids. Like most days, Ria is thanking the staff for caring for her so well, she has bad dreams about car accidents. Then she will mention pain in her mouth. When she is really tired, she will say she does not have any teeth. From 8pm until midnight, Ria went to bed, few minutes, gets up… back to bed… gets up… very restless.
Tuesday, 14 May
Today is D-day for Ria’s dental procedure! We hope for light at the end of the tunnel.. .. for her own wellbeing! Ria slept through, she was woken up early so she can take her time to get ready, not to rush her and increase her anxiety. The staff reminded her of the procedure and she seemed very calm, understanding what is to happen. The car ride this time went much smoother. I (Sufrani) was waiting at the Clinic for them to arrive. The time was 06:30 as we had to check-in at 7am. When they arrived, Ria was extremely calm, she gets cold very quickly, so they had her wrapped up in a soft blanket. Ria was not anxious at all during the car trip. Very grateful, as today will be a lot for her.
Our dentist is phenominal. He always let me be with our family members, talking to them, we do the changing of the clothes and I went into theatre with Ria as she knows me and to make it more comfortable and comforting for her. When she got anaesthetics, I went outside again. Ria’s husband was with us for the day. She kept on telling him she loves him very much, he must lay down with her 😉
In the end, Dr Jurgens had to distract 7 teeth, of which 3 he said (the ones where Ria always pointed for us in her mouth) had SEVERE infection, one of the worst he’s ever seen. She must have been living in terrible pain for a very very long time…. And she could never tell anyone because of being medicated. She would then become “angry and aggressive”, to which people with Dementia at this stage typically, would then get more medication “to calm them down”. More medication, more drugged. That is all we want: a person in their raw form, so that they can show/tell us by their behaviour if something is wrong (unmet needs), so that we can address it at the root cause! They still experience all these emotions, but they can’t show us as it’s been suppressed. We took Ria home after the day procedure, she was emotional because of the pain and anaesthetics, her husband went with and spend some time with her. She wanted to go with him of course, so the staff comforted her so that he could leave. Her pain will still be there for some time. Just on Ensure and liquids for now. Ria is tired but restless at times.
Wednesday, 15 May
Went to bed 10pm last night, got up just after 2am, sat with the care workers for almost an hour, then went back to sleep until morning time, had Ensure, slept until 10:30. Rest of the day she was talking non-stop, walking all the time, but in a calm manner. She told the staff
to talk quietly and to just sit with her, not to leave her alone. Ria was very quiet during the evening, listening to the radio. Between 8pm and 11pm Ria was up and down between her bed and the sitting room, then she slept.
Thursday, 16 May
Today very much like yesterday. Ria mentioned her mouth starting to feel better and that she is hungry. She was grabbing food from a plate she saw, so they started giving her solids. She then ate a bit, but had more Ensure. Still saying the teeth is hurting a bit still. Most of the night she was up and down… between her bed and the living room.
Friday, 17 May
Ria is trying to eat solids again, but says her mouth is still sore. She was very quiet the whole day and later afternoon Berrie went to the Home. She recognised him, saying it’s Berrie and they had a long chat. They also called her daughter in Windhoek and they talked for a very
long time, a proper conversation and about people of the past and Ria remembers very well. Berrie then left, Ria saying to him to drive safe. Ria does this with me also, so it’s something she is really concerned about, assume since the accident she had years ago. She is always worried about one will be in an accident. The evening she spoke to her husband and it was also a good conversation. She says to him he must please come get her, but he reminds her that she has Dementia and that she needs help with daily a living and that we are there to help her. It’s very important for us that we work well together with the families, so we speak from the “same mouth”. Ria understands very well, so we are not allowed to lie to her, or any of our other residents, not giving them false hope… by saying for example they will go home later… rather to explain to them in a calm, soft manner their illness and that we are there to help them. Even if we have to repeat this multiple times every day. We need to build good relationships where they trust us. She did tell her husband that she is now healed, she is off the medication and she wants to go home to him, she can look after everything there. He explained to her she has Dementia and we need to help her. Ria understands very well about the medication. She is getting vitamin supplements such as cranberry to assist with her chronic issue with Urinary Tract Infection. We tell her every time what medication she does get and that it’s not those other medications she used before that made her feel sleepy and not well. She is also getting Aspavor and Ecotrin. We do give medication to promote good health. Ria slept through the night.
Saturday, 18 May
Ria is more delusional this morning. She believes she lied to people and she wants to apologise. Ria had solids today, ate well. The afternoon her cousin came to visit. She was very happy to see her, saying she waited long for her to visit. They then went to Swakopmund, had ice cream at the Jetty, walked around and had Calamari. It was a good outing. She was initially bit anxious, saying she is worried about them making an accident. Her cousin re-assured her it will all be fine, they are going to drive slowly. Ria was talking a lot of different things for a while when they drove off, not all making sense as one story line. But once they got to the bridge entering town, she started to be more calm, reading the signs she sees, talking really good, having normal conversations. She spoke about her memories of people and incidences of when they were children and younger adults and she was spot on with names and detail. They got ice cream, and walked the board walk. Ria has a way of saying something that is so descriptive and funny in a way; she commented on people she saw, what they dressed in, quite comical! It was getting cooler, and her cousin took her jersey and gave it to Ria and she dressed herself in it. Still Ria was having a normal
conversation. They had a walk on the Jetty, then she commented on the smell of the fish from the food van. They then went and got calamari just before closing time, the lady even gave them that at no cost. Ria then mentioned her mouth is getting a bit sore now. They
drove back, and so Ria continued about people she remembers as she sees signs and shops that triggered her mind and senses. Ria had a good night’s rest.
Sunday, 19 May
Ria woke up, saying the building will explode, she does not have money, her family left her. This is where our work really comes in, to meet Ria in her world. To make her feel heard, we believe her and we help her in her state of what she believes is true (it is for her). She was talking and walking quite a bit today, at times saying there is no bed, no food, no nappies. They went to show her everything as she was expressing her concerns. Her senses saw, then she reacted. We don’t suppress her reality with medication, we manage her BPSDs by focusing on her unmet needs she is expressing (Behavioural Psychological Symptoms of Dementia). Ria slept well, waking up once during the night, asking for “milk” – that is Ensure. She slept again.
Monday, 20 May
Ria woke up, talking fast and all the time. Very up and down today. Keeps on saying she does not want to be alone, her family has left her. We re-assure her, reminding her again of her Dementia and that she needs help with daily activities, her husband will come visit again. Her daughter is coming tomorrow to visit. She keeps on saying it’s a lie and will not happen. She eventually got calmer. She only drinks Ensure today.
Tuesday, 21 May
This morning Ria spoke about everyone she saw… what they wear, everyone looks so nice and is clever, she is so negative and everyone else is so positive and she is afraid we will get tired of her complaining. The staff talked to her nicely, she had yoghurt and thanked everyone for being so good to her, she is apologizing for complaining so often. They told her it’s okay, she does not need to worry at all, that is why we are there. She has challenges with her Dementia (she knows very well, she also wears a Dementia bracelet and often say she’s got Dementia) Later the day I personally spent about 3 hours with Ria. She was talking fast, walking up and down, just wanting to hold my hands, I should not leave her. She said she can’t do a lot anymore and she does not even read the Bible anymore, I’ve asked her if I should read from the Bible to her, she said yes. Whilst reading, she started talking about the clothes I wear, that I look lovely and she has thick thighs. I told her she is beautiful the way she is, she thanked me for being nice to her, spending my time and petrol money and also my phone credit to phone her family. She feels bad about that, I told her it’s my calling and passion and I do it with love. When I left, she was worried again about me driving, I told her I will drive safe. The afternoon her daughter from Windhoek came with her fiancée to visit Ria. They spent the entire afternoon with her. She was also talking a lot, many different stories, also talking about poison in her drinks and that the fiancée is walking around there as it’s his place, so now that they own it, they must come live with her there 😉 She wanted to go with them. Ria went to bed after dinner, and slept right through.
Wednesday, 22 May
Ria woke up at 7am, saying she wants to leave and her daughter did not want to take her with, she can’t accept her Dementia and that the staff must take her to Hardap dam and throw her inside the dam so she can just die. Ria feels everyone has left her and she complains about how she looks and everyone else around her is accepting their Dementia and they all look nice and can do things for themselves and are positive but she is not. She says she must leave this place as she is negative and only complains and people will not like her for that. Later the day she got calmer as the staff talks to her and re-assures her as we also talk openly with our Dementia family about what Dementia is and how we are there to help them and that they are valued members of our family. We focus on who Ria is, her identity all her life and what the Dementia is and challenges that come with that. Ria went to bed 9pm until around 12 midnight, and then got up and sat with the care workers, asking for Ensure, and chatted to them until after 4am, and then went to bed and slept.
Thursday, 23 May
Ria woke up after 7, had breakfast 8am. Sufrani (I) came and spend time with Ria. Ria said she would love some Coke, so I’ve decided to take her to Swakopmund for a day out. This is her second time she is going on a day outing, we want to see how she will react. As she is scared of being in a vehicle of her past accident, she said to me she wants to go but is scared we will be in an accident. I’ve re-assured her that all will be fine and that I will drive slowly. At this point she is still talking faster than usual. I helped her into my bakkie (vehicle) and
she saw a packet of Simba chips in my bakkie (vehicle) and I asked her if she wants it. She said she would love it, and as we were driving, she was eating calmly the chips, talking about what she sees. This is what we always observe with People living with Dementia, once all
their senses are triggered, they become very calm and have a normal conversation whilst observing what is around them. It creates good feelings. I took her first to an Antiques shop. She commented on all the memories being brought back when seeing things. About her mother or grandmother whom also had this or that… even herself as young mother.
I’ve asked her then where we shall go next… She told me that she and her husband stayed at this very beautiful place in Swakopmund and she would love to go see it, but she can’t remember the name of it or where it is situated. She told me nice things were hanging from the ceiling and the décor was very classy. I thought it might be the Swakopmund Hotel and Entertainment Centre so I drove there and she said no, it’s not that… then she turned around and pointed to Gondwana’s The Delight! She asked me if she could just go inside to have a look, so I thought it’s a great idea to sit down there and have a Coke.
The staff told me they only open the bar at 4pm and I told them about Ria and that I just want to give her this special memory, so they’ve made a plan for us and brought us 2 Cokes! Ria first said it’s fake Coke, as it’s not in ‘n glass bottle (it was a can). It just goes to show what meaning something has to each one of us from our perception and experience. This is very important to note for the future. I also wrote an email to Gondwana Management about our experience and they were ecstatic. After the “fake Coke”, I asked Ria where she would like to go now….. she said she wants to go back to the lady who gave her and her cousin the calamari for free, to thank her. I remember her cousin told me where they went and I drove there. We went to the food truck and she thanked the owner, and they chatted about the food business and the hard work it is, as Ria also owned food stalls like this. Ria and I then took a walk along the beach, onto the Jetty. Ria was having normal conversation with me, talking sense, 100% calm manner. As we were walking back, I’ve asked if she would like to eat or drink something, she said cappuccino would be nice. So we went to the Doughnut Bar on the Jetty for a cappuccino. It was now time to start driving back, but Ria did not want to go. She said she wants to stay in Swakopmund, I should get her a nice place. I explained to her while we need to take care of her. On the way back, I stopped at my friend’s horse farm and Ria met my friend. (Ria still talks about this day out and also about the horses, although she is wary of them) When we got the Home, Ria just wanted to go with me. I chatted to her and after quite a while, she was calmer. She had dinner and talked to the staff for a while, telling them about the nice day she’s had… she then got ready for bed with the staff’s help and then went to sleep.
Friday, 24 May
Today Ria slept a lot. Later afternoon I spent time with her again, she just wanted to go with me. What we know by now is the same pattern, and that is why it’s so important to experience the person living with Dementia in his/her raw form… so we can get to know the individual… and make a differentiation between identity and Dementia (unmet needs) so we can now how to address it correctly. Ria gets anxious, that leads to confusion and then she becomes delusional/hallucinate. We have to focus on how we can decrease her anxiety but also know that a big role to play is her FTD an LB Dementias.
Saturday, 25 May
Ria is talking a lot about no-one wants to come see her, she is complaining and people will not like her for that. We keep on having positive conversation with her and let her also talk what she feels so we can react and acknowledge her feelings but redirect it or take a positive path of the conversation. Ria then talked a lot about what she sees around her: people, what they wear, staff moving about, food they eat, etc. Ria went to bed after dinner and woke up around 4am, sitting with the staff and talking to them.
Sunday, 26 May
Ria got up, talking again about everyone around her can do things for themselves and don’t complain like her. 10am two of our residents and a care worker sat at a table, colouring in. Ria went to sit with them and took a pencil and started colouring in (most of the time she says she can’t colour in – she has her own books and set of pencils which her husband brought her) She talked in a very nice, calm manner about a lot of things, and people of the past…… colouring in until 2pm. Rest of the day she was quiet, eating and drinking well and sitting on our outside deck, overlooking the open landscapes. The evening Ria said she must go, she wanted to pack her clothes. She had dinner and talking with the staff, went to bed and slept until just before 5am.
Monday, 27 May
Today we put in a window in Ria’s room! We had to move her for a few days to another shared room. Ria was complaining again about how everyone just goes about their day but she can’t. She rather need to leave. She complained her room was too dark (here we listened to her unmet need… we’ve been wanting to insert a big window in her room) She wants to see her family (they live in Windhoek and the UK, so visits are not as often as they would like themselves. I sat with her and she told me I have a home and a husband and dogs to care for and she has nothing. After talking to her, telling her again about her Dementia and why we need to take care of her, and that her family loves her and what a wonderful mother and wife she’s always been, she seemed to become more at ease. Still Ria says at times she should go, where shall she sleep tonight as she will be kicked out if she keeps on complaining. She says this all calmly. She went to bed after dinner and slept until about 11pm. Ria got up and was up and down the whole night, she was in a more agitated mood. The night staff engaged with her and got her through the night talking and walking with her. Having her in another room temporarily will also play a role in her feelings.
Tuesday, 28 May
Ria is restless. Saying people around her are clean and well dresses and she is not looking good (she’s always been a proud woman of stature and liked the finer things in life, so this is her identity) Ria later in the day sat next to tannie Marie and told her and the staff stories from the past. She was very calm. She did say people will chase her away as she does not have money, so she was re-assured that her husband has paid for everything. She always refers to money value in millions, like 60 million this cost you… to drive here and spend time with me and now you will put it against my account and I can’t pay…. So money also is a big deal to her. So this is an unmet need we need to carefully manage on her behalf to not make her feel anxious and worthless.
Ria has nice clothes but in her eyes it’s not good enough. She used to colour her hair at the hairdressers so this is something we will take up with the family to take her to a hairdresser. We still cutex/polish her nails on a regular basis. Still she will say is not looking good. The evening Ria did colouring in of her book. She did not want to go to bed, she had nice conversations with the staff.
Wednesday, 29 May
At times Ria was walking up and down, other times sitting talking to the staff and our family around her. She did some colouring in again.
Ria was more relaxed today. She even send me a voice note to tell me she loves me and that I should have a good night’s rest 😉
Thursday, 30 May
Ria woke up more restless (Bad dreams from LB Dementia?)… We could not make out a lot of words she was saying. She had Ensure, her vitals were taken which were in normal range. Ria was complaining best part of the day of everything and everyone around her, whilst also
at times apologising for complaining like that. Ria went to bed again after dinner and slept through
Friday, 31 May
Ria woke up very calmly, she wanted to go bath but it was too cold and the staff told her let’s wait a while so the sun can come out, having breakfast first. After breakfast Ria asked the care worker to bring her her Bible and asked for coffee and biscuits. She started talking about her brother a lot and saying he should come get her, that he phoned her and she can come stay with him in Somerset West in the Western Cape. (she hasn’t spoken to her brother) She misses family. The afternoon I was there with an Australian couple who has become more involved in our work. The 3 of us then lead a fun session where we’ve played ball and Ria wanted to stand with me. She repeated a lot of what she heard, playing with. I had to explain to her all the time what we are doing and who everyone is. She wanted to go home with me, and I had to explain to her again what the situation is. She at first went to stand at my Bakkie (vehicle) and did not want to leave, but eventually the staff managed to re-direct her thoughts and they took her inside the Home. Rest of the evening Ria was very calm.
Saturday, 1 June
Ria woke up restless again, the staff sat with her, telling her not to worry, we are here to care for her and everything is OK. She calmed down very quickly. Ria has been relaxed all day, sitting and commenting on what she saw. We have a resident who walks all the time, and she asked why is not getting tired 😉 Ria went to bed after 11pm and slept through.
Sunday, 2 June
Ria was extremely calm today. She ate and drank well and went to lie down at times. Ria smiled again today, these times we cherish! Went to bed before 11pm, woke up at 02:00, went to bed again 02:30 and slept through.
Monday, 3 June
Ria woke up, talking non-stop and walking a lot. She complained again about how she looked, how others looked so good and can help themselves and don’t complain, just she is complaining and people will get tired of her. The staff did again what they do every day: re-assure Ria and addressing her unmet needs.
Tuesday, 4 June
Berrie came to spend some time with our family. He then took Ria and Oom Joe out to Swakopmund. Same routine as always… Ria is scared that there will be an accident, once she is in the car, she gets so calm, talk nicely about a lot of what she sees. She enjoyed the trip
so much, they had calamari to eat and just had nice conversations. She also did not want to go back but Berrie explained to her why we need to take care of her. After he left, Ria was very calm, talking nicely, sitting on the Deck. Ria went to bed 6pm and woke up 9pm. She did not want to sleep, only went to bed at 4am.
Wednesday, 5 June
Ria woke up at 7am. She did not want to sit, was walking up and down. She was talking and walking the whole day, she was walking with the carers also outside (which we focus on a lot for all our residents to get in VIT D to sleep better and to see and smell nature around them). Ria had dinner, went to bed and slept through.
Thursday, 6 June
Ria woke up very calm, did not really talk. From after 10am she played ball with the care workers for an hour and sat on the deck rest of the day. Night time she was up and down quite a bit. She asked for Ensure, slept a bit, got up again. Sat with the care workers, chatting.
Friday, 7 June
Most part of the day Ria was calm. The afternoon she was colouring in. The evening she was also up and down, did not sleep a lot. Rather in the living room with the carers.
Saturday 8 June to 16 June 2024
The days are pretty much the same. Ria is mostly very calm, she has times where she talks a lot and walks a lot, then she gets calmer soon after. She misses the family. She even typed this sms herself to her husband: “Bokka Ek het jou bale lief.Ek sal so graag jou weer wil sien, Ek dink elke minuut van die dag aan jou baie graag wil sien, kom haal my asb Lekker slaap ,” Translation: (spelling and grammar improved 99%). Darling, I love you very much. I would like to see you again. I think of you every minute of the day and would like to see you, please come get me. Good night.
Wednesday 12 June, Ria’s cousin came to pick her up for a day out. Same routine as every time: scared of driving at first, gets very calm, talking nicely, observing her surroundings. Empie took her to the hairdressers. She liked it a lot, was more quiet there, then they went to Village Café and enjoyed an Omelette. They had a lovely day out, wanted to go with Empie, and we all jumped in again to re-assure Ria of her place where she now stays.
Monday, 17 June
Berrie and I have arranged a coffee date with Ria’s cousin, Empie and Ria’s husband, Piet, to talk about how we can all together give Ria the best quality of life with her challenges. We all agreed that Ria gets anxious at times, then it gets confused and then it snowballs into delusions. We were talking about getting an extra care worker so we can alternate the care workers (as there is always someone with her) for the wellbeing for Ria and for that of our staff as it can become challenging to be with her all the time when she gets anxious. We need to see what the reason is for her anxiety: What is her Dementia, and what is her unmet needs we can do something about. We also talked about the possibility for her cousin to take her out more on daily trips, but we also need to respect her time and of course also cost money and see within her means, how we can do this. Ria can also sleep over with family if all parties can do that and can cope with the challenges. Then we are also looking into Virtual Reality Treatment where we bring the outside world to Ria… This will be a longer process as we are doing research.
Tuesday, 18 June
Ria’s husband took Ria out for the day. They went to see family in Hentiesbay. Ria enjoyed it so much, at times she was more reserved and quiet but she loved it. They had something to eat at Windpomp 14 but she got a bit anxious there. They had a walk along the beach and went to a shop to get few things for her to eat. Ria did not want to go back, wanted to go with Piet back home. It was a good day for both of them.
As conclusion: Berrie wrote this to the family, as there is always this concern about keeping a person, like Ria, in “distress” at times by not giving them medication to suppress the signs and symptoms of their Dementia: I’m not talking about Ria now but as someone who lives with Dementia, like Ria:
My Conclusion:
Let Ria be who she is in every moment… in her now….. and be calm and stop looking for the right answers… only Ria has the right answer in the “moment” she’s in.
IT’S REALLY OKAY!!
31 July 2024
Ria and her daughter – a little visit to the ocean
Stuur ons een bericht en wij nemen zo snel mogelijk contact op. Namibië is in dezelfde tijdzone maar kent geen wintertijd.