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TIPPING POINT

AliceA

Registered User
May 27, 2016
2,810
I think the brain is such a mystery. It is too easy to make assumptions, I read a book by Bruce Lipton, quite a long time ago explaining the brain is plastic in as much as it reforms pathways if some get overloaded. I like your expression reboot.
With my husband so much depends on energy levels not too much and not too little.
I feel is is like a see/saw with me moving to balancing both ends!
Days vary so much. We are dealing with a condition Vascular so we have 'platforms' but these are not smooth.
I do not know what caused the condition to start, we lived a healthy lifestyle. I smile ruefully when I read of the advice to avoid dementias. I was told that it could have been worse depending on which part of brain is affected.
 

karaokePete

Registered User
Jul 23, 2017
5,447
N Ireland
Hi Alice, yes the brain is a bit of a mystery.

My wife is described as having "a significant vascular element" to her dementia. Small vessel damage showed up on the very first scans. Unfortunately she did not live a healthy lifestyle before she met me and I struggle with her now. Of course, a good lifestyle will help to minimise the risks of dementia, but won't eliminate them. Lifestyle factors are thought to contribute only some 30-35% of the overall risk factors anyway.
 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
Hi Alice, yes the brain is a bit of a mystery.

My wife is described as having "a significant vascular element" to her dementia. Small vessel damage showed up on the very first scans. Unfortunately she did not live a healthy lifestyle before she met me and I struggle with her now. Of course, a good lifestyle will help to minimise the risks of dementia, but won't eliminate them. Lifestyle factors are thought to contribute only some 30-35% of the overall risk factors anyway.
My OH only ever had one scan - I was not told he was having the scan, nor was I told the result or implications as he was in hospital on a very serious unrelated matter.
When I received the discharge letter -which he had no interest in - I read the words "small vessel damage" and had absolutely no idea what it meant. I read the word 'small' as meaning little, as in less rather than more.
It took me quite a bit of googling to come up with what these 3 words meant, and no one has ever explained them to me.
I wonder if you can enlighten me further @karaokePete?

I rationalise the information passed to us by hospital professionals thus:-

They do not know us
They will probably never see us again
They do not know our level of understanding
They just say it as it is - with the thought that someone else down the line will explain further
I cannot blame their approach - it seems sensible to me.
 

karaokePete

Registered User
Jul 23, 2017
5,447
N Ireland
Hi @maryjoan, the scan results are a moot point. No one ever told me, or my wife, either. I asked for copies of the reports received from the Consultant by our GP.

Small vessel damage showed in a CT scan. Further small vessel damage showed on a MRI scan and then this damage plus Frontal Lobe Pathology showed on a PET scan. Mixed dementia is the diagnosis and, indeed, the symptoms displayed.

The small vessels will be capillaries etc., and it’s these that feed into the tissue. If these small vessels get damaged, by strokes, or other means, the blood flow to the brain tissue will be impaired and cells will die. If you have stroke damage and have more mini or major strokes further damage will occur and this gives vascular dementia it’s stepped progression. My wife didn’t have evidence of strokes but was a smoker for 30 years and had/has raised cholesterol so the damage is likely from that. The interesting fact about the vascular system is that it is one big overall system so the damage like my wife’s is likely to be in places other than her brain too. This makes it a possibility that she may have a massive stroke or heart attack that will make her worse or take her out one day - a point I raised with the GP and with which he agreed.

Unfortunately the dementia makes my wife resist my attempts to make her present lifestyle more ‘small vessel friendly’. Dementia related apathy and sweet tooth see to that.
 
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AliceA

Registered User
May 27, 2016
2,810
My husband started to show Parkinson symptoms. He was referred to a consultant who ordered a scan as he ruled out Parkinson's.
This showed severe small vessel disease in part of the brain but not in speech and mobility areas. We felt lucky about this. I was warned it could change.
The memory nurse visited at home and also the SALT team as his pneumonia was caused by ingesting food when swallowing so he was shown techniques that I ensure he follows. He cannot be left as he could choke.
A further test/scan requested by new GP has been refused as the deterioration was "the nature of the disease".
The memory nurse who came originally answered my questions. She did emphasise the lack of empathy as one of the first things to go. I am blessed with this as it has helped me understand, it still can hurt and it is a big hole in my life. But learning not to expect or take it personally has helped.
He does take a small aspirin to help keep his low blood pressure even lower. This has problems of its own.
I feel Carers need more help in caring full stop.
We were fortunate to get the diagnosis but this was partly brought to the fore because of a previous chest infection and a two week hospital stay followed by hospital at home.
I originally reported memory issues 15 years previously, he was also having circulation problems not fully addressed. This was ignored.

I concur with what Pete says, the apathy makes things worse, I try to combat that sometimes it works and sometimes not. Tiredness levels are a key. Too much energy causes agitation, too little causes apathy. It is an everchanging situation. Sometimes I feel I am a full time therapist!
 
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maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
OK, Todays Tipping Point.

Daughter comes over to take OH for his weekly trek to buy yoghurts in town 10 miles away. She takes 2 year old with her, leaving 7 year old with me, and we have a lovely time.
Daughter's car breaks down in supermarket car park. She has recovery which will take her to her home address 25 miles in opposite direction.
What to do? OH is where granddaughter should be and granddaughter is where OH should be- there are no buses for almost 3 hours. We do not have a car anymore.
Solution, ring for taxi to pick up me and granddaughter, take us to daughter, return granddaughter to Mummy, and then bring OH back home - sounds good.

Ring several taxi firms, but no one can do it within 2/3 hours.

Meanwhile OH has decided to walk from supermarket into town for a light bulb (?!) Daughter tries to stop him - but he is not her father, or step father, he is my partner and takes no notice.

I phone him and tell him to go back to car - he is objecting until I explain I am trying to get him home. He now decides he wants me to bring a shopping trolley(?!)

Meanwhile ring round friends and neighbours asking for lift -no one home.
Call on nearby neighbour who happens to be a clergyman and a lovely chap, but he is on his way to nearby village to welcome a coffin into the church.

Beginning to panic now, as I cannot see a resolution, and I know daughter is somewhat adrift with OH and his dementia.

Resolved - lovely car recovery man has replaced car battery and it seems to wish to go now, so daughter ( exhausted) returns OH to me, am also exhausted after watching and taking part in a 7 year olds 'magic show' whilst trying not to worry over situation.

OH comes home, has lunch and snoozes afternoon away.

Me? I am writing to you, because it is a stressful day, and it makes me realise that what can go wrong does go wrong.
 

Rosebush

Registered User
Apr 2, 2018
1,478
Well done maryjoan, I think you and your daughter deserve a medal, hope you have a peaceful evening.x
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
Oh my goodness how are you still in one piece? That’s one of the most stressful things, when There Is Nothing You Can Do! Calming thoughts ~~~ although you sound calm now? The power of TP.
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire
OK, Todays Tipping Point.

Daughter comes over to take OH for his weekly trek to buy yoghurts in town 10 miles away. She takes 2 year old with her, leaving 7 year old with me, and we have a lovely time.
Daughter's car breaks down in supermarket car park. She has recovery which will take her to her home address 25 miles in opposite direction.
What to do? OH is where granddaughter should be and granddaughter is where OH should be- there are no buses for almost 3 hours. We do not have a car anymore.
Solution, ring for taxi to pick up me and granddaughter, take us to daughter, return granddaughter to Mummy, and then bring OH back home - sounds good.

Ring several taxi firms, but no one can do it within 2/3 hours.

Meanwhile OH has decided to walk from supermarket into town for a light bulb (?!) Daughter tries to stop him - but he is not her father, or step father, he is my partner and takes no notice.

I phone him and tell him to go back to car - he is objecting until I explain I am trying to get him home. He now decides he wants me to bring a shopping trolley(?!)

Meanwhile ring round friends and neighbours asking for lift -no one home.
Call on nearby neighbour who happens to be a clergyman and a lovely chap, but he is on his way to nearby village to welcome a coffin into the church.

Beginning to panic now, as I cannot see a resolution, and I know daughter is somewhat adrift with OH and his dementia.

Resolved - lovely car recovery man has replaced car battery and it seems to wish to go now, so daughter ( exhausted) returns OH to me, am also exhausted after watching and taking part in a 7 year olds 'magic show' whilst trying not to worry over situation.

OH comes home, has lunch and snoozes afternoon away.

Me? I am writing to you, because it is a stressful day, and it makes me realise that what can go wrong does go wrong.
That must have been really frightening for you. Awful when there appears to be nothing you can do, and scary for your daughter too. I hope it hasn't put her off taking him out.
 

Dutchman

Registered User
May 26, 2017
607
Devon
Dutchman, this may not be a lasting state. Lots of residents at Keith's nursing home shift in and out of this position. I know how painful and distressing it is and am so sorry. No of course these are not terrible thoughts, they are human and normal. As for the move into vacancy getting you used to being alone, I'm not sure. A friend who had looked after her husband with vascular for twelve years said to me that it gives you a head start on being a widow, not the awful shock of the sudden absence. I don't know what I think of that. Of course thinking about yourself is not dreadful, most of us who have had a good married life dread being alone. As Keith is in a nursing home now, I spend a lot of time alone. I cope by seeing lots of people and then being in the home and helping as one of the team. So when I come home I am pretty exhausted anyway.
All fellow feeling, dutchman. I don't think many of us can be stoic and brave it out. That's just a bit of a front.
with warmest wishes, thoughts, Kindred.
Hi Kindred. My wife seems to be better but, of course, once it’s happened it could again. And, of course, thoughts of arrangements further down the line aren’t too far away. Finance and care enter my mind now and again as does being on my own which I’ve never experienced for that very long. I’m pretty independent and can, I’m sure , look after myself, but that’s me thinking with my wife still around although I do most things now. Actual aloneness can be very different. Your thoughts and others (warmest thanks to you all) are comforting as they show I’m not that unusually selfish or self centred in what I’m going through.
 

Dutchman

Registered User
May 26, 2017
607
Devon
Well said Alice. An on-line course I did recently made the very point that you made about a PWD picking up on emotions. Apparently it gets highly developed because its their only method of effective communication. I always remain positive.

When you used this analogy " is like constantly picking a scab and wondering why it still hurts." it made me cringe for personal reasons as that's what my wife has been doing for a year now - I've mentioned it elsewhere on the forum and what a year I've had with it. The state of her was dreadful at times. I'm on top of it now though, after trying every trick in the book, and I just hope all the scars fade.

To stay on topic, my Tipping Point yesterday concerned the date. As usual I had spent much of the day answering the 'What day is it' question and had been telling my wife 'It's Boxing Day' as a reply. In the evening my wife went to bed for a nap and I retreated to the bathroom for a shave & shower. I had just got under the shower when my wife started calling from the bedroom. Thinking we has a crisis a dripping wet Pete went to the bedroom to be met with "Is this Boxing Day?" I just turned around and went back to the shower muttering under my breath like Dick Dastardly's dog. :rolleyes:
Hi There. Just noticed that you mentioned a course. Do you have the details please as anything like this might help me. Many thanks
 

AliceA

Registered User
May 27, 2016
2,810
Just picking this up, how frightening for you all. MaryJoan I am glad that it ended well.

I am please to hear that you wife is better, Dutchman, these warnings are scary. It forces us to look at possible futures ahead.
I think most of us learn to cope with the practical side of life, I project managed building work this year, normally I would have just had to come up with ideas and my husband did it.
The new normal means we, who care, take on many new skills, but the deep loneliness is a dark pit we all dread.
Being alone is one thing, not having that one person who understands for better and worst, inside and out is so completely different.
Like you I am extremely concerned about care and finances at some point in future. It seems a minefield with moving goal posts.
I have done my best to allow us to stay at home for as long as humanly possible.
I know the savings will not last that long, there is little guidance.
In our area there is little choice, I am already fighting the fact that our nearest facilities are just across the county border. Be it NHS or care services, so near and yet so far. The austerity cuts have completely axed services.
This does not bode well for the future.
So I do understand your own concerns. Like many our present life has made me especially more isolated, we lived a full active useful life for the best part of our retirement.
I know it is extremely difficult but try not to let the worry of the future spoil today.
On the other hand we do have to be aware, catch 22 isn't it.
 

PalSal

Registered User
Dec 4, 2011
834
Pratteln Switzerland
@karaokePete
One of my big projects at Novartis in 2011 was on Music, Motion and the Brain. Dr.Oliver Sacks (who speaks on this video of Henry) was involved but in the end could not come to Switzerland and sent his colleague, Dr. Connie Tomaino. She and he worked together for over 40 years. They were (and she continues to be, he has passed away) outspoken innovators and advocators in the effects of music on the damaged brain, whether Alzheimers or other trauma. I arranged a week of panel discussions and exercises and live music on the Novartis campus. It was fascinating experience for me.
 

karaokePete

Registered User
Jul 23, 2017
5,447
N Ireland
Hi There. Just noticed that you mentioned a course. Do you have the details please as anything like this might help me. Many thanks
It was the online UTAS course that is run at regular intervals and usually mentioned on the forum when they are enrolling. Keep your eyes peeled for the next one. It was very good.

I also did a carers course in my own locality. It wasn't as good as learning from the forum, but better than nothing. These courses rely on local funding so may not be available everywhere (I did the last one in my area). If you try your local AS office they may be able to assist https://www.alzheimers.org.uk/find-support-near-you
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
It was the online UTAS course that is run at regular intervals and usually mentioned on the forum when they are enrolling. Keep your eyes peeled for the next one. It was very good.

I also did a carers course in my own locality. It wasn't as good as learning from the forum, but better than nothing. These courses rely on local funding so may not be available everywhere (I did the last one in my area). If you try your local AS office they may be able to assist https://www.alzheimers.org.uk/find-support-near-you
Is this the university of tasmania online course. That’s what came up when I looked for it?