I’m appreciating more and more that I CHOSE this role in caring for mum. I meet so many carers, not just for people suffering from mental ill health, who are married to someone, they get sick & then they feel they have no choice but to take care of them. This often brings a lot of resentment as it’s not something they signed up for & it’s hard work with sometimes little or absolutely no reward.
I was lucky enough to make the CHOICE to move in with mum and care for her. Okay, when I moved in I thought it would be temporary but regardless, I CHOSE to stay.
I struggled in the first few months not working. Not just because of suddenly having no income but because I kind of felt like a fraud, lazy & just not playing my part in society I guess. As time went on I began to realise that THIS is my job, caring for mum & like any job I’ve ever had, I want to do the best I can, learn all I can about my position & earn my (money) rewards.
So I am learning all I can about dementia, volunteering to help others in the same or similar situations & generally doing all I can to make mum’s days or moments as good as they can be, and mine. We were trying to make new memories but really they are just moments, happy in the moment, forgotten the next.
I am so blessed to be in this role. So blessed that my mum is one of the most caring, compassionate & funny people I know. I am blessed that even though I’ve probably become rather co-dependant, I am aware of it, learning about it & acknowledging that yes my best days are when I feel she’s been stimulated in a balanced way but that I need to be okay with the days when she’s not, still be happy with me.
She won’t get better, it won’t get easier, it will always be changing & needing flexibility but while we can laugh & love & appreciate each day together, life just isn’t that bad at all. We are blessed!
Author: admin
Lewy Body Dementia
- Causes possibly 7-20% of dementia
- The symptoms vary hugely at different times
- It can be hard to diagnose at first because it looks like Alzheimer’s Disease
- The person may have symptoms which are like Parkinson’s disease such as trouble walking or a tremor
- Sometimes people experience hallucinations of people or animals
- People with this dementia can be very sensitive to certain medications
- REM (rapid eye movement) sleep disorder is common
- People can have periods of impaired alertness and concentration, appearing drowsy
- Spatial problems may be worse than in Alzheimer’s Disease
- There are round protein deposits found in the brain
Vascular Dementia
- Causes about 10-20% of all diagnosis of dementia
- Approximately 25% of people with AD will also have VaD
- There is a sudden onset and step wise progression
- It is caused by damage to blood vessels and a lack of oxygen getting to the brain. It is related to strokes and TIA’S
- It is sometimes called Multi-Infarct Dementia (MID)
- Not all areas of the brain may be affected so symptoms can be patchy
- Distinct mood changes (depression, sudden inappropriate changes)
- There can be a patchy picture – memory may be less affected
- Personality changes
Alzheimer’s Disease
- Discovered in 11907 Alois Alzheimer
- Most common type of dementia, about 60% of all people who have dementia have this type
- Affects 1 in 20 people over 65 – 1 in 5 over 80
- There are deposits called Plaques & Tangles in the brain
- Memory enhancing medication can sometimes be prescribed
- Spatial disturbance (environmental disorientation, route finding, dressing problems, copying shapes)
- People experience general changes in the way their brains interpret, organise & store information (cognitive function)
- There is a slow progression with some periods of stability
- The brain cells which store memory are affected and the chemical which helps send messages (acetylcholine) is not made properly
- There is a small genetic risk
- People often have language problems
- The exact cause is still unknown
Trip To Treliske
Hilarious trip to Treliske hospital. Walking behind an elderly couple who were very slow as the man had crutches. The lady apologised when she realised we were behind them & tried to make room for us to pass.
Mum says “No rush, no rush!” Looking at the gentleman she says “Shame the sun’s not shining (which it was but obviously not indoors) & then you could lay down & take all your clothes off!”
The lady looked shock (I gave her a grin & a wink & she relaxed, that’s about all you can do in these situations I find) but the man said “Don’t let me stop you!”
Mum then needs the toilet but is insistent on going alone incase the doctor calls for her while she’s in there. She comes back 5 minutes later apologising to me for all the commotion. When I asked what she meant she said “I had my knickers round my ankles, no wrists, no knees & a lady comes banging on the door asking if I’m okay. I’d pulled the emergency cord thinking it was the light switch!”
At Treliske hospital Mum went to take her shoes off, I told her she didn’t need to as there’s a roll of paper towel on the bed to keep it clean. Mum said “I thought that was there incase someone needed to spell from their rear end!” Yep SPELL!
Early for our hospital appointment so as we got out of the car mum says “Shall we have a cigarette then?” Urm….which one of us smokes & where shall we get a cigarette from???
Mum told a waiting room full of patients that the bar she worked in in Spain had banned people with crutches, glasses, wheelchairs etc! Of course she soon changed that!
“I’d rather not be in pain! I’d rather have a Mars Bar!” Oh the hilarity of morphine!
At the Doctor’s & Mum said her eyes were fuzzy, then had a sip of water & said they were now fine!
Cat’s Eyes & Groovy
Driving with mum where there were roadworks & a new surface. We drive past the ‘Cats Eyes Removed’ sign & she started crying. “Why have they removed the eye of the local cats?” We did have a good laugh afterwards.
Mum feeling nauseous & me fighting a cold & fever. I moved & said “Bleh”.
Mum goes “Ahh darling do you feel…..feel groovy like me?”
She lost it giggling once she realised she’d got the wrong word.
At Singing For The Brain we were handed a sheet with the words to Cockles & Mussels on it. Mum lost it giggling & I asked if she remembered the song or not. She couldn’t answer as she was giggling so much until eventually she got enough of a grip to share with me that she believed these to be “Men’s parts!”
Holding a flower vase mum said “Where does this beer mat go?”
Hearing problems or Comprehension?
Mum has for some time now, often misinterpreted what has been said to her. Some of this you will see in the ‘Deeisms’. I organised a hearing test as I was sure she’s not had one for years and wanted to see if this was a physical symptom we could do something about.
After a few weeks of organisation (nothing seems to ever be straight forward) we finally completed her tests.
The tester joyfully shared with mum that her hearing was fine & he saw no reason for her to have any kind of hearing aids. Mum was delighted with this news! I was devastated! I told the tester that this had taken place in order to ascertain whether her hearing was the problem or her comprehension. He said that the problem was with the latter.
I took mum, under her request, to the pub to celebrate the ‘great’ news.
Another symptom, another decline but at least a real diagnosis to work with.
About 18 months after this Mum did need hearing aids. The people at my Dementia Support Group were laughing at me saying it was a waste of time as she would lose them. They had leant through experience. Sure enough, I kept on finding them in the bin, under her pillow & in the end one disappears somewhere at home & one at her Day Centre. The problem was that she would go to scratch her ear or something, the aid would come out & because she didn’t recognise it she wouldn’t know what to do with it…..
Nausea! Real or a symptom?
Mum has suffered from ongoing nausea for over a year. Varying degrees and often a symptom that she believes started with a certain event (like surgery to remove a tumour from her breast, even though the nausea was there before).
I have exhausted the alternative therapists with remedies and treatments to alleviate this & the GP’s are coming up with nothing but confusion too.
The past week mum has been prescribed a nausea medication that is given to chemotherapy patients (no relevance to that fact that she had cancer last year), to rule out whether or not she actually has nausea, if she is describing something else entirely or if this is a ‘perception’.
The meds, I feel, improved her ‘nausea’ feelings as she got out of bed for the first time in 2 weeks, however, she still has complained of nausea every single day. Has this helped or is this perception? We see the GP again on Thursday and look at whether there may be something else going on or if it (simply) is a fault in the brain. My gut tells me that this is a perception & not real but I would never forgive myself if we didn’t investigate every other theory to ensure that there is nothing physical going on.
Stuff
Someone asked me today, whilst waiting on a possible dementia diagnosis for his wife “What is the difference between memory loss & dementia?” I held my tongue to not say “118 symptoms!” Dementia is so much more than memory problems though I don’t see the point in burdening anyone with them when they don’t have a sure diagnosis. With the different types of dementia there are different symptoms, some are the same throughout but some are relative and are specific to the different types. All are scary but also have means, tools & understandings that make them easier to live with and adaptable to.
Happy
When I ask mum to go and find me something, a glass from a cupboard or carrier bag from under the stairs or whatever, once she has located she is over the moon that she’s managed to work out where it lives. Her noise for this is yelling “Yippee Yippee Yoo!”