Dementia. Becoming a Stranger in an Unfamiliar Body.

18 Aug

Mum’s grandkids might think that a zombie has stolen her brain. Apparently only high functioning zombies go for the brain. They are after serotonin, the happiness hormone. Our mum hasn’t actually been near any zombies, they didn’t steal her brain, but something has partly stolen her happiness. Mum very sadly has vascular dementia, brought on by mini strokes, which now affects the way she thinks, feels, behaves and perceives things.

Dementia appears to sadly be a taboo subject. An article in psychology today says that somehow, to many of us, the idea of dementia seems more horrifying than cancer. Perhaps we fear the idea of losing who we are – becoming a stranger in an unfamiliar body. I think if we focused less on it being a mental health issue and saw it for what it really is, a most complicated brain disease that is fatal and cannot at this time be cured, it could take the ‘stigma’ out.  The most challenging part of late stage dementia, psychosis with symptoms that present a danger to the person and others, where someone is inconsolable and in persistent distress with a declining ability to function, can be helped greatly by anti-psychotics. 

Although memory loss wasn’t the main early symptom of mums dementia, she now has hardly any recollection of recent information or experiences. She can ask the same question 5 or 6 times in a loop and yet still remember her way from one town to another. She knows where her mother was born and that mushroom soup is horrible. She also knows she has never had to have anyone help bathe her before.

We recently travelled north to offer emotional support to our brother and to spend a week with mum to say hello (and begin to say goodbye) and was shocked at how rapidly her kind of dementia has progressed. It appears that as the structure and chemistry of her brain becomes increasingly damaged over time, her ability to remember and reason keeps declining which is so sad and unfair. Having appeared to have never aged, the physical difference in mum is astounding in just a matter of months. Whilst she still understands a lot and communicates fairly well, it’s probable looking at the residents around her, that this may slip away sometime in an unknown future. 

Dementia is an illness that expresses itself in its own way for every patient, so it’s challenging for families and nurses to ride a different roller coaster for each patient. 

There are many changes to come to terms with. Most days mum doesn’t like or want to see her own reflection anymore. Food isn’t satisfying her as such and she has a lot of disorientation with respect to time and place.

She can remember us kids by name, but is forgetting the grandchildren and great children’s names. She finds it hard to choose what to wear. She doesn’t ever ask why she is where she is or what happened. In a lot of ways she is very present moment. 

The hardest behavioural changes are the paranoia and delusions that surface briefly at different times of the day which are hard to determine or pinpoint. It could be about people taking things, doing things she doesn’t like, or being mean or horrible to her. She often says no one gives her any food or any medicine but they do. She sometimes kicks up at not being let out, but that one is true, they can’t let her out for her own safety.

There are people she has to share space with that have personalities that anyone would find challenging to have to be around. They constantly irk her (and others) and make her angry and unsettled which is hard, but it’s important to not be triggered by her upset or anger and instead aim to calm and distract, and agree and redirect.

On the good side, Mum still has her lovely affirming, praising, smiling, joking, generous, good-natured self, always interested and enquiring after others. She knows who her favourite people are, and her favourite carers. She is very nice to people who are nice to her. She loves to get postcards and letters and photographs. Brief, happy, newsy with big writing works well now. Some of the staff love her and say she is their favourite which so put our hearts at ease.

In the dining room, mum knows to sit at what we call the “nice” table. One of her friends at the nice table now often just stares into space, has to be fed, and is totally confined to a reclining chair with her feet elevated. It’s heartbreaking to see all the various stages of decline. This lady can no longer go on the short trips out of the home and it was so sweet to see mum go up to this lady and rub her arm and tell her “I’m so sorry you can’t come out on our outing with us, you take care.”  Her other lovely friend at the nice table, who funnily enough has a surname of a variety of nut, seems in a less state of decline than mum, but her memory loss and confusion arrives in the late afternoon in the ‘sundowning’ period. Mums medication seems to thankfully inhibit her agitation at this time of the day, which in the recent past was highly problematic. Such is the drug dilemma. There’s a sweet, very quiet, well-mannered man at their table who eats up all his food and stacks up his dishes. He is a calming influence. Everyone at the nice table feeds the birds their bread which says a lot about their character!

One man at the ‘naughty’ table seems to be in a constant state of anger and aggression. His wife who visited said he was never angry in the past which seems so sad. He triggers all the other patients with his comments and energy and they all forget to not make eye contact or pay any attention to him. He tells everyone to bugger off, slams his plates around and doesn’t like anyone smiling at him. The nurses often have to settle him down. I even asked him to take a deep breath once or twice.

Mobility is another thing that declines quickly. Mum uses a stick and a walker to get around, and the swelling in her legs and ankles make it difficult to walk around much. The diuretic to counteract the swelling make toilet trips urgent which can be difficult when one forgets where the actual toilet is located. In time she may forget to recognise the need to go. Thankfully the pain meds are masking her arthritis pain for the first time in many, many years. All week she never once mentioned being in pain.

Mum, commonly has moments of reacting either aggressively or tearfully if she feels threatened or cannot understand what is going on around her. It’s called having a meltdown and the staff are great at diffusing such situations. They work so hard, with everyone, physically and emotionally, and deserve a medal. 

In times of distorted ideas and distress, distracting and comforting mum helped a lot, and showing her photographs of family and pastimes soothed her, so did the real fruit ice cream and feijoa smoothies we smuggled in.

In the last couple of days of visiting we saw a decline in her ability to express preferences. Asked by a caregiver if she wanted weetbix or porridge for breakfast, you could see the panic in her eyes to have to choose. And she chose wrong. Having eaten porridge most of her life, she took one bite of weetbix and I had to return it and ask for porridge. The staff will of course adapt to these individual changes and instead begin to just give one thing or lay out one set of clothes. Mum will say “That’s not my cupboard.” “Those aren’t my clothes.” “I don’t live here.” “I’ve only been here a couple of days.” 

She tolerates medical interventions but in a joking way likes to let us know she’s probably being given arsenic! 

As distanced from family and friends as she might feel, our little brother (and his wife) appears to be doing a good job.  If he pops in after work in the evening, it often isn’t an easy time emotionally to visit. Once a week he goes to buy healthy soup and takes mum to her elderly and quite unwell sisters place. He prepares the food, eats and chats and makes them laugh, does the dishes and then returns mum back to the home.

Most Sundays he comes to pick her up and takes her to his house for lunch with the extended family, makes sure she takes her medication at the right time, and drops her back late afternoon.

At the home they have weekly trips out which she still manages, although she has to be hydraulically hoisted into the van. On fun Fridays she goes next door to the unlocked wing and enjoys a music afternoon with other residents. There’s a hairdresser who comes to cut their hair, and random visits from kind-hearted high school kids. They come in with animals to pat, and massage the residents hands. (Well those residents who don’t tell them to “bugger off.” ) There’s a piano in their lounge.  I wish a pianist could come in every day as it was lovely to see everyone calm down, close their eyes, sing and get lost in the music. Days can seem awfully long (that may have just been for me) and as fear inducing as it is to imagine ever being in the situation mum is in, under the circumstances she is luckily really being cared for in the best way possible. 

My husband just said that the reality for people like mum, the 80 pluses, is that they are the ones who have avoided road accidents, heart attacks and cancer taking their lives and now they are at the mercy of their eroding bodies and brains.

Zombies don’t really feature, and tiger pits, chainsaws and wood chippers might keep zombies at bay but dementia patients just need us to ring and write and visit if we can. They need love and compassion and music, always more music.

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