Reconciling, TIA’s, Acceptance and More

I think I had another Tia last week and then another a number of days ago, all the signs and symptoms were upon me, the vision issues, pain and pressure behind my eyes, lighting bolts flashing through my head, the brain fog, the fatigue. Yes we get to know the signs and symptoms, if severe enough we go to the hospital if not with the the help of my doctors, I have over the years learnt how to self manage. I know one day I will likely just be gone from a massive stroke, sometimes it seems so funny to know you live with a terminal illness yet is very likely the contributing factor of that illness that will take you out or something entirely different. Again it’s just the knowing and sometimes the things we think about, its all ok, I am going to be 63 in a week’s time, I am on the back side of life, more behind me than in front of me, so the thought of dying does not and is not something that I shy away from, nor is it something I am afraid of.

Following is a little information of Vascular Dementia: I am posting it for information purposes only not for medical advice, more so that you can perhaps understand a little of what is happening to me.

“Vascular dementia results from impaired blood flow to the brain and is the second most common type of dementia after Alzheimer’s disease. A host of cognitive and neurological impairments accompany vascular dementia, including memory impairment and trouble with coordination such as walking and balancing. It is best to consult a doctor or healthcare professional (or accompany a loved one to the doctor if you suspect they are at risk) to rule out other similar conditions. Though there is no cure, there are treatment options and ways to manage.”

Vascular dementia is caused by reduced blood supply to the brain due to diseased blood vessels.

To be healthy and function properly, brain cells need a constant supply of blood to bring oxygen and nutrients. Blood is delivered to the brain through a network of vessels called the vascular system. If the vascular system within the brain becomes damaged – so that the blood vessels leak or become blocked – then blood cannot reach the brain cells and they will eventually die.

This death of brain cells can cause problems with memory, thinking or reasoning. Together these three elements are known as cognition. When these cognitive problems are bad enough to have a significant impact on daily life, this is known as vascular dementia.

Types of vascular dementia

There are several different types of vascular dementia. They differ in the cause of the damage and the part of the brain that is affected. The different types of vascular dementia have some symptoms in common and some symptoms that differ. Their symptoms tend to progress in different ways.

Stroke-related dementia

A stroke happens when the blood supply to a part of the brain is suddenly cut off. In most strokes, a blood vessel in the brain becomes narrowed and is blocked by a clot. The clot may have formed in the brain, or it may have formed in the heart (if someone has heart disease) and been carried to the brain. Strokes vary in how severe they are, depending on where the blocked vessel is and whether the interruption to the blood supply is permanent or temporary.

Post-stroke dementia

A major stroke occurs when the blood flow in a large vessel in the brain is suddenly and permanently cut off. Most often this happens when the vessel is blocked by a clot. Much less often it is because the vessel bursts and bleeds into the brain. This sudden interruption in the blood supply starves the brain of oxygen and leads to the death of a large volume of brain tissue.

Not everyone who has a stroke will develop vascular dementia, but about 20 per cent of people who have a stroke do develop this post-stroke dementia within the following six months. A person who has a stroke is then at increased risk of having further strokes. If this happens, the risk of developing dementia is higher.

Single-infarct and multi-infarct dementia

These types of vascular dementia are caused by one or more smaller strokes. These happen when a large or medium-sized blood vessel is blocked by a clot. The stroke may be so small that the person doesn’t notice any symptoms. Alternatively, the symptoms may only be temporary – lasting perhaps a few minutes – because the blockage clears itself. (If symptoms last for less than 24 hours this is known as a ‘mini-stroke’ or transient ischaemic attack (TIA). A TIA may mistakenly be dismissed as a ‘funny turn’.)

If the blood supply is interrupted for more than a few minutes, the stroke will lead to the death of a small area of tissue in the brain. This area is known as an infarct. Sometimes just one infarct forms in an important part of the brain and this causes dementia (known as single-infarct dementia). Much more often, a series of small strokes over a period of weeks or months lead to a number of infarcts spread around the brain. Dementia in this case (known as multi-infarct dementia) is caused by the total damage from all the infarcts together.

Subcortical dementia

Subcortical vascular dementia is caused by diseases of the very small blood vessels that lie deep in the brain. These small vessels develop thick walls and become stiff and twisted, meaning that blood flow through them is reduced.

Small vessel disease often damages the bundles of nerve fibres that carry signals around the brain, known as white matter. It can also cause small infarcts near the base of the brain.

Small vessel disease develops much deeper in the brain than the damage caused by many strokes. This means many of the symptoms of subcortical vascular dementia are different from those of stroke-related dementia.

Subcortical dementia is thought to be the most common type of vascular dementia.

Mixed dementia (vascular dementia and Alzheimer’s disease)

At least 10 per cent of people with dementia are diagnosed with mixed dementia. This generally means that both Alzheimer’s disease and vascular disease are thought to have caused the dementia. The symptoms of mixed dementia may be similar to those of either Alzheimer’s disease or vascular dementia, or they may be a combination of the two.

Symptoms

How vascular dementia affects people varies depending on the different underlying causes and more generally from person to person. Symptoms may develop suddenly, for example after a stroke, or more gradually, such as with small vessel disease.

Some symptoms may be similar to those of other types of dementia. Memory loss is common in the early stages of Alzheimer’s, but is not usually the main early symptom of vascular dementia.

The most common cognitive symptoms in the early stages of vascular dementia are:

• problems with planning or organising, making decisions or solving problems
• difficulties following a series of steps (eg cooking a meal)
• slower speed of thought
• problems concentrating, including short periods of sudden confusion.

A person in the early stages of vascular dementia may also have difficulties with:

• memory – problems recalling recent events (often mild)
• language – eg speech may become less fluent
• visuospatial skills – problems perceiving objects in three dimensions.

As well as these cognitive symptoms, it is common for someone with early vascular dementia to experience mood changes, such as apathy, depression or anxiety. Depression is common, partly because people with vascular dementia may be aware of the difficulties the condition is causing. A person with vascular dementia may also become generally more emotional. They may be prone to rapid mood swings and being unusually tearful or happy.

Other symptoms that someone with vascular dementia may experience vary between the different types. Post-stroke dementia will often be accompanied by the obvious physical symptoms of the stroke. Depending on which part of the brain is affected, someone might have paralysis or weakness of a limb. Or if a different part of the brain is damaged they may have problems with vision or speech. With rehabilitation, symptoms may get a little better or stabilise for a time, especially in the first six months after the stroke.

Symptoms of subcortical vascular dementia vary less. Early loss of bladder control is common. The person may also have mild weakness on one side of their body, or become less steady walking and more prone to falls. Other symptoms of subcortical vascular dementia may include clumsiness, lack of facial expression and problems pronouncing words.

Progression and later stages

Vascular dementia will generally get worse, although the speed and pattern of this decline vary. Stroke-related dementia often progresses in a ‘stepped’ way, with long periods when symptoms are stable and periods when symptoms rapidly get worse. This is because each additional stroke causes further damage to the brain. Subcortical vascular dementia may occasionally follow this stepped progression, but more often symptoms get worse gradually, as the area of affected white matter slowly expands.

Over time a person with vascular dementia is likely to develop more severe confusion or disorientation, and further problems with reasoning and communication. Memory loss, for example for recent events or names, will also become worse. The person is likely to need more support with day-to-day activities such as cooking or cleaning.

As vascular dementia progresses, many people also develop behaviours that seem unusual or out of character. The most common include irritability, agitation, aggressive behaviour and a disturbed sleep pattern. Someone may also act in socially inappropriate ways.

Occasionally a person with vascular dementia will strongly believe things that are not true (delusions) or – less often – see things that are not really there (hallucinations). These behaviours can be distressing and a challenge for all involved.

In the later stages of vascular dementia someone may become much less aware of what is happening around them. They may have difficulties walking or eating without help, and become increasingly frail. Eventually, the person will need help with all their daily activities.

How long someone will live with vascular dementia varies greatly from person to person. On average it will be about five years after the symptoms started. The person is most likely to die from a stroke or heart attack.

So that is the state of my health at the moment, for all other accounts I am still doing well since my Moderna vaccine helped my immune system, that is still be followed by Moderna and my doctors. But that does not stop my dementia from progressing or from things like TIA’s from happening. A lot of changing in my eating habits continue, incontinence issues come and go. It is definitely impacting how much I am doing these days, overall and how much I will be able to manage to continue to do. As much as I am aware of that, it doesn’t make the acceptance come without an inner battle with myself.

I have also been doing a lot of reconciliation work with myself, as odd as that seems, I am and do fully accept that not all people who we care about, care about us in the same way, that many many actually almost all ( the rare ones that don’t should be truly treasured), come with expectations, those expectations can be varying and many times if you try to have a conversation about the expectations you will be met with either straight out denial that there is expectation, or the total lack of awareness or understanding of what expectations actually are and can be. For example many people will go see friends or family, often because they feel “they should”, which is in fact self imposed expectations and they are on the person doing it not the one on the receiving end.

The other thing often seen is that as long as you are providing or doing something that is of benefit, then the relationship stays in tack, once that changes the relationships often fail, people with Dementia of find this happens. As to others who due to illness, life events or something the role in the relationship must shift and often if we are not providing those with what they “want or need” then the relationship will not last.

Those relationships that just are, no expectations on anyones part, just the very real enjoyment of time spent whenever and however that happens. Those are the rare ones.

So I have come to a place where I understand that my dementia no longer allows me to maintain the roles I had in many relationships and many of those relationships have not survived, the ones that have are because the other person in the relationship understands that I can no longer do much of what I once did and they are happy that we have time when and as they can, without placing expectations ( known or unknown) that I cannot meet. I treasure all those relationships. It also lent me to think back over my life and really look at how and when relationships changed and often it was when there was a change in expectations, whether mine or theirs. The nice thing about doing all this review is it leaves you feeling settled, no anger, no resentment, you acknowledge the hurt, the pain and you understand differently than you once would have.

It also makes me think about how often we have over our lifetime heard people as they were aging or after they became ill, say “they never call”, we then put it aside as well they are busy. What I would prefer is that we teach our children as they grow that as we age it becomes more difficult for the one aging to make the calls, remember dates, etc. and so as our people age it is our responsibility to make time for those calls, not to just assume that they older person doesn’t have anything to do that they could call.

Life becomes more exhausting just doing the daily life things, so the younger ones should be doing the organizing of family events, of staying in touch. I was always my whole life good at staying connected to others, but I no longer manage it, I have requested addresses and phone numbers more times than I care to think about only to have no idea what I have done with them. So those days are done for me, love to have someone call, or stop by for coffee or tea, but I cannot organize or facilitate it. The hard part for me is I have no one to pass the torch too.

Oh my brain has so much floating around so I am trying to capture it, its Easter Monday, many are just ending a busy weekend. Mine as been a mixed bag, due to TIA”s, my dog is slowing down, and I am needing to give more time to her, and then there is that part of my brain that somehow convinced me that I needed to challenge myself more, it would be good for me, my brain is not getting challenged enough, oh I hate when my brain tells me these things.

Because then thats exactly what I try to do, so Friday I thought I would make my Easter Bread, as most of you know, baking and cooking are not something I try to do much of anymore. But my brain convinced me that it had a couple quiet days so it was the perfect time. So I very methodically arranged all the ingredients, its a long process to make it, finally it was set for its final rise, it somehow felt like it didn’t rise as much as I thought it should, but when its time was up into the oven it went. It came out tougher than the tires on my car. I was so upset, so angry at my brain, not at me, at my brain. I went to bed fighting the fight between what my brain was telling me and what I was feeling. Saturday morning into the garbage it went with a thud. Now I was mad, now I was determined to show my brain, but then suddenly something hit me, the rise, it didn’t rise because my house was to cold, ( everyone always says my house is freezing), thats why my bread didn’t rise, so I promptly relented and turned the heat on to warm the house, convinced I would make bread, so I decided to make a Sweet bread, this time I had great success, pictured here. But instead of my brain being satisfied it becomes a tug of war, part of me thinking thats enough for one day and the other part thinking no you can do more, so more I did

By the time I was done, I had made two lemon/orange poppyseed loaves ( my own version of a lemon poppy seed loaf.) And a lovely Focaccia Bread.

These things may have been things that I would have done in the past without much thought, but why oh why can my brain not be happy with the occasional success, instead I pushed until I exhausted my brain, drained it, recharging will take days, but my fight with one part of my brain wanting me to push and the other wishing it wouldn’t because the aftermath ends with too many non functioning days, or with TIA’s. Maybe one day my brain and body will all reconcile.

The other thing that happened I got to have Sunday out in the woods, my friend and I went to one of the places we go a few times a year, the fire was lovely, roasting smokies oh so delicious, a thermos of coffee and yes freshly baked sweet bread. I am so grateful that he always somehow knows when I am in need of a trip to the woods, he understands my good and bad brain days, he new Sunday was not great so he new being with Nature is always restorative for me. Our relationship is one of those rare ones, no expectations, just getting together when it works, sometimes I choose the place, sometimes he does, we look at forestry maps and decide. He doesn’t mind that I want to stop a million times to take pictures and because I want to look at something or put my feet in the water. I appreciate that the relationship just is, no labels, nothing more than 2 people who enjoy time together. He also is always willing to help me if I need help, and as made many trips to the hospital to check on my during my many hospital stays, never because it was expected, just because he wanted too. I am blessed with some very unique and special relationships with some very special people.

So I hope that whatever you did this weekend you enjoyed yourself and I hope the week ahead brings us all some ways to spread some kindness and hope.