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A middle aged couples` struggle with one partners` vascular dementia in progress. A journal of their life with debilitating and un-stoppable disease. Sharing the care givers` experiences in an attempt to inform, educate and help others understand the progression of this terrible infliction.



Tuesday 31 October 2017

Personal Independence Allowance claim made stressful

We are still in the process of downsizing, but now only weeks away from completing
the eventual move to our `Forever Home`. Packing belongings, organising and buying
a few more appliances for the flat has turned out quite stressful in itself. Rick has been
trying hard to be helpful throughout it all, but is showing signs of distress with all the
changes necessary. His mood had improved when we came back from visiting his
sister in Bulgaria, but things are taking a negative turn once more as we are getting
closer to the actual move from our three bedroom house. His memory is suffering and
getting worse.
On top of it all we had to attend an assessment of his disabilities today where he was
put under an awful lot of stress, having to answer a myriad of questions about his
physical and mental abilities. Not been able to understand some of the trick questions
that were thrown at him by an unsympathetic assessor made him agitated and very
upset. The evaluation of his abilities took over an hour and his mood was getting more
and more angry by the minute. Myself and his daughter were allowed to be present, but
it didn`t seem to calm his mind having us there for moral support. Every answer was
fed into a computer form that is then sent to the Works and Pensions Department for
their approval. They will ultimately decide weather or not he is awarded his Personal
Independence Allowance or will be told that he has to apply for a job, despite of his
mental and physical problems. The assessor today had no medical background to be
able to determine Rick`s disabilities, and the decision is going to be in the hands of
pencil pushers in a separate government department. At the end of today`s session we
were ushered out of the meeting and told to await the decision to be sent to us within
the next 14 days. Rick is very confused and can not understand the waiting for the
decision to be made by someone else. We have no confidence in the benefits system
of this country and are dreading the outcome already. Nobody can see what I have to
go through every day in looking after someone with mental as well as physical
problems; and asking a mentally impaired person trick questions and questions that
are designed to entrap and confuse him will never give the full extend of his problems.
We felt quite gutted and depressed after this meeting today. Rick was left feeling
exhausted and worn out, so I had to take him straight home where he fell asleep in
his comfy armchair for several hours. The benefit, if we do ever qualify for it, would be
helpful in managing his conditions and would give us more scope in the way we can
look after his needs in the future. The stress he was put under today was, in my opinion
quite unnecessary. It left me angry and worried for our future, when we should now be
looking forward to moving to our new home.
All that I can hope for is that the home move can be made as painless and without too
much stress for Rick when we have friends help us with the move itself. Ideally, I`d
like to send Rick away for the day, so that the move itself could be swift and without
him getting worried about his precious belongings. A wish I know can not be made to
come true, nonetheless. Therefore, the moving day will also be stressful for me when
I have to take care of him as well as give a hand with moving furniture and appliances.
I wish it to be over and done with already, so not looking forward to the actual day now.

Tuesday 12 September 2017

Our future no longer in limbo.

Well, we had made it safely to our holiday destination. DB was more agitated than
before about flying, but we did manage it well enough not to get too many problems.
It does, however flag up concerns for any future travel with him when it comes to
traversing through crowded places. - It took us a few days to get him settled after
travelling, but as we were staying with his sister and her husband we were in good
hands. And, by the end of the first week of our vacation he was feeling more relaxed
and happier in the new environment. His mood improved and his behaviour was more
like he used to be before all the troubles with dementia. We took a few outings on our
own and he seemed quite happy to engage in sightseeing, days spent at the sandy
beach, swimming in the Black Sea and generally chilling. The vacation did us both
the world of good. He slept better at night, albeit helped by a few pints of beer he
consumed during some of our stay. He enjoyed the foods we ate in restaurants as
well as at his sisters home in Bulgaria. I could finally relax and see his health improve
with the fresh air, the sunshine and the laid back atmosphere that was all around us.















We`ve come back home refreshed, with a slight sun tan for me and a dark brown tan
for him, which makes him look as if he had spent a long time abroad. The fortnights
vacation in Bulgaria has certainly made good memories for us. We had spent time in
good company, meeting his cousin Jenny and her hubby in the second weeks stay, too.
So, there were evenings with card games for Rick, eating out at exciting places, some
nights cooking Curries at his sisters place and plenty of new experiences, new places
to explore during our stay and a few new friendships formed with the locals.
For the first time in ages he forgot to cause arguments; we actually laughed more
together, and he was eventually more loving towards me again. By the end of our
vacation I had the feeling that we had finally turned a more positive corner with this
dementia.
One week after our vacation and we still were waiting for our local council to contact
us about our wish to downsize. I rang their offices and was told that our application
had not been accessed yet, but due to high demands they would have to take more
time to do so.
We felt slightly deflated about the future prospect after that phone call. - Just two days
after my call I received a return phone call from the relevant office to tell me that our
application had been approved and we should get a confirmation letter to allow us
now to move forward. We are elated! - Our plans to move to our 'Forever Home' are
now back on track with authority`s approval. With a little bit of luck we should be able
to celebrate Christmas this year in our new home. Such a relief after all we have been
through already.
DB`s mood has stabilized for now and I can actually enjoy his company again at times.
He`s more optimistic and feels better in himself again as a brain scan result has also
come back from the Neurologist, re-assuring him that what he`s suffering from is only
to be expected from a previously heavy smoker like himself. The neurologist is also
convinced that DB is suffering from a form of depression. Finally having been given a
diagnosis has helped Rick to feel more settled in himself now. We both feel more able
to cope with whatever the future holds for us from now on. - Onwards and upwards!

Sunday 13 August 2017

The closure of an important life chapter

We are still awaiting the go-ahead from our local council authorities to enable us to
downsize and move to alternative accommodation. Things are progressing slowly
and paperwork is being accessed as I write this, so we remain hopeful and keep our
fingers crossed for a successful outcome.
In the meantime, Ricky`s dementia has taken another turn. Whilst on a week long
vocation with him visiting his eldest daughter and seeing other grandkids he suffered
what doctors call a facial palsy, or in layman`s terms a mini stroke.
There was thankfully no damage to his speech, but it has left him with a tingling
feeling on the left side of his face, although there are no apparent signs of distortions
to his facial features. The dementia has once again struck another blow, and Rick is
still in denial. He complains about the tingling and sometimes not feeling sensation
on top of the head, but he is not ready to accept that he has this infliction.
The last work place he had held over 5 years ago rang his mobile phone whilst we
were on vacation and were asking him if he would be interested in re-joining their
work force.
Unbeknown to me at first, Rick had agreed to go for an interview with them this
Monday.Thankfully, he had told me and his daughter all about it some time later, so
we both were having stern words with him not even to consider such action, as we
knew too well that Rick could not possibly take any job at all due to his health issues.
That he had convinced himself that all was well and he was able to return to work
after his 5 year redundancy had shocked his daughter to the core. She had not been
aware how much hard work he had become to be for me, as she didn`t see him often.
Both of us took some time to plead with him not to be so foolish and to ignore any
advances of his previous job place. He had to promise to us not to take it any further,
as we are in the process of getting his independent living allowance sorted as well as
my full time carers allowance. Any of his foolishness could well hamper all of our
efforts in getting him his well deserved benefits. Just to be on the safe side of things,
I visited his former work place and spoke to the manager about his health issues,
assuring him that it was quite out of the question for Rick ever to go back to work.
The manager was surprised and sad to hear about Rick`s mental as well as physical
decline and wished us well for the future. I felt as if I had just driven a knife into my
loved one`s ribs as I spoke about his physical and mental inabilities. But, what else
could I have done to prevent him from making the biggest mistake of his life?
Preventing him from applying for a job might seem so harsh, but will ultimately save
his life. With his 26 % lung capacity caused by COPD, the mini strokes he has had,
his diabetes and the onset of dementia he would be a prime candidate for collapse
through exhaustion on the first day of ever taking on a job. I would never be able to
forgive myself if anything was to happen to Rick because I allowed him to take up
work. His doctor would have a fit if she knew that Rick even contemplated going
back to work. So, what`s done is done  and I can now breath a sigh of relieve
knowing I prevented a total disaster.
Rick`s life will be changed forever, and we hope that he can eventually accept the
way things will have to be from now on. What I did had to be done for his own
good, however hard this was to do.
His dementia is slowly progressing. On our vocation he managed to lose our house
keys. Thank goodness, a neighbour friend of ours who often keeps an eye on our
home when we are away had another set of keys lodged with her. It made me realize
that I can no longer let him be in charge of important papers, objects or decisions.
I can`t let him make decisions on both of our behalves anymore. So, our joint decision
of downsizing is now beginning to look better already. Rick will be secure in knowing
that his health needs are met, and I shall be much happier knowing that I can dedicate
more quality time to his care.

On a much more positive note; Rick`s angry outbursts have improved and he seems
less agitated, calmer, but more physically needy. He needs much more help with
getting dressed, having a bath or shower, but more forgetful.
He needs lots of prompting to take his daily medication for his diabetes, but his mood
has improved, so I feel more relaxed around him. We managed to travel on the trains
to see his daughter and even took my granddaughter along on our vocation, as Rick
seems much better to handle when she is around. It meant that I had to take care of 2
children on this vocation; one being himself, the other my 4 year old granddaughter
Alyssa. As both had good times I came home totally exhausted. But, luckily for us,
we shall be going on a second vocation without my grandchild. A break, just being
with other adults was arranged by Rick`s daughters, so we are due to travel by plane
to Bulgaria to visit his sister. 2 weeks should be plenty of time to give me occasional
rest needed to recuperate. And, hopefully after that break abroad we should receive
news from the council authorities on a possible move to our forever home.
 

Sunday 23 July 2017

Not all is lost

Well, what can I say. Our future move to easier accommodation seemed to have been
a lost cause. Just as we were giving up all hope of ever reaching our goal, another,
option has come our way. - The family we were originally going to swap with had
found an alternative to everyone`s dilemma. They would be willing to move to a
2 bedroomed house in our area if we could promise the family from the 2 bedroom
home that our house would be available to them, thus giving us the option to still
move to the flat we wanted. In fact, a three way swap was suggested that would solve
the housing problems of three different parties in one swoop. It does sound ideal for
our needs, so we went ahead and filled out all necessary forms for our housing office,
hoping that they finally qualify us for a move to the 2 bedroom flat we wish to have.
All relevant parties would be in agreement and willing to organise a moving date that
is convenient for all. We once again have to await decisions from the authorities before
we can go ahead with further formalities, but it seems that we might finally be on the
right track, having handed in all relevant medical back-up forms to the housing office
about my partners health problems. We keep fingers and toes crossed for a mutually
beneficial outcome for all, now.
My partners cognitive problems are still under investigation as we still wait for the
results of a brain scan that was done end of May. In the meantime, he has been given
some helpful medication to address his deficiency in Folic Acid, which seem to have
improved his mood and lowered his verbal combativeness considerably. A positive
step in the right direction and a massive relieve to me, as the stress of coping with his
outbursts was beginning to take its toll on my health and wellbeing. I`m calmer now
and can cope much better with him at home. On top of this we had been treated well
by my partners two daughters. They gave him a fantastic Fathers Day and Birthday
present combined. We are going on holiday to Bulgaria to visit my partners sister.
Flights and overnight stay at a hotel connected to the airport were paid by his two
caring girls who are aware that my partner might not be able to travel much more in
the future. This way he can at least enjoy his visit to his sister as he is still physically
and mentally able to cope with such travel this year. A fabulous surprise to us both,
and we are now looking forward to this trip on the 23rd of August, spending 2 weeks
in Bulgaria with his sister and her hubby, sampling good home cooked meals and
hopefully enjoying good company and swimming in the warm waters of the Black
Sea. Hot weather is always guaranteed at that time of year, but we should be able to
cope with it well enough as his sisters house has air condition. This welcomed break
will hopefully charge our batteries so that we can then embark on a possible move to
our forever home, thereafter. It`s going to be quite a task to move with all our worldly
possessions even after a major de-clutter, so I appreciate this holiday break a lot.
So, it seems that not all was lost initially when our housing authority refused our first
application for a move to downsize. With a little bit of luck we do hope that things now
can work in our favour after all; fingers well and truly crossed!

Tuesday 4 July 2017

Our future plans are hampered

Everything was going seemingly swimming for our intended downsizing move when the
local authorities suddenly decided that we had not applied correctly or gone through the
correct procedure and channels for our intended move. For us to qualify for a move from
our 3 bed house to a 2 bed flat we must re-apply to the correct departments and await their
approval.The only way we might qualify to move to a 2 bed property instead of a 1 bed
flat hinges on authorities giving their permission on medical grounds for my partners need
of his own bedroom. Nobody had made us aware of such permission having to be given,
so we had been unaware of the need to prove his needs for his own bedroom. Important
information and a letter from our GP had been lost in the process, so we now have to start
from scratch again, hoping to get all information and needed proof in place first before we
can await permission from authorities for a successful property exchange. We had already
been downsizing our belongings and were packing in anticipation to move this autumn,
but now refused by authorities as they had lost all necessary paperwork for our previous
application. The stress and the disappointment caused does not even bother the relevant
departments and people responsible for this mega cock-up.We are very upset and can only
suck it up and re-apply in the hope of getting everything right on a second go. Needless to
say, we now have lost the opportunity to exchange with the family we had approached in
this matter, so their children will be disappointed and upset as well, as they now are losing
out on a lovely family home they so much were looking forward to having. All this is due
to misinformation having been given to us in our first application for a mutual exchange.
Sometimes life sucks and there is no-one taking responsibility.We are gutted. It had been
a difficult enough ride so far, trying to explain the need of downsizing belongings to an
already fragile mind. My partner has no concept of what had gone wrong and why. He is
just worried to move at all now. Unless authorities approve of his need of own bedroom
we might well be forced to accept a 1 bed property as solution, that we don`t think is fair.
We now feel that we are forced to stay in our large property that we are barely able to
manage whilst criteria for our successful move are pondered by an unsympathetic authority.
Unless we get a positive approval I will not be able to move us from where we are, and a
long fight with authorities might well be on the cards for us. Such a debilitating outcome
of events!

Saturday 17 June 2017

Various stages explained

According to the various stages my partner is in between stages 2 and three, fluctuating
to and from.

Clinical Stages of Alzheimer’s
New York University’s Dr. Barry Reisberg outlines the seven major clinical stages of
Alzheimer’s disease. Dr. Reisberg is the Clinical Director of New York University’s Aging
and Dementia Research Center. As the principal investigator of studies conducted by the
National Institutes of Health, Dr. Reisberg’s work has been pivotal in the development of
two of the three current pharmaceutical treatment modalities for Alzheimer’s. He is developed
the “Global Deterioration Scale” which is now used in many diagnoses and care settings as
the rating scale.

Stage 1: Normal


Stage 1 Figure 1
At any age, persons may potentially be free of objective or subjective symptoms of cognition
and functional decline and also free of associated behavioral and mood changes. We call these mentally healthy persons at any age, stage 1, or normal.
Just forgetful, or is it dementia?

Stage 2: Normal aged forgetfulness

Half or more of the population of persons over the age of 65 experience subjective
complaints of cognitive and/or functional difficulties. The nature of these subjective complaints
is characteristic. Elderly persons with these symptoms believe they can no longer recall names
as well as they could 5 or 10 years previously. They also frequently develop the conviction that
they can no longer recall where they have placed things as well as previously. Subjectively experienced difficulties in concentration and in finding the correct word when speaking, are also common.

Stage 2 Figure 2
Various terms have been suggested for this condition, but normal aged forgetfulness is
probably the most satisfactory terminology. These symptoms which, by definition, are
not notable to intimates or other external observers of the person with normal aged
forgetfulness, are generally benign. However, there is some recent evidence that persons
with these symptoms do decline at greater rates than similarly aged persons and similarly
healthy persons who are free of subjective complaints.

Stage 3: Mild cognitive impairment

Persons at this stage manifest deficits which are subtle, but which are noted by persons
who are closely associated with the stage 3 subject. The subtle deficits may become
manifest in diverse ways. For example, the person with mild cognitive impairment (MCl)
may noticeably repeat queries. The capacity to perform executive functions also becomes compromised. Commonly, for persons who are still working, job performance may decline.
For those who must master new job skills, decrements in these capacities may become
evident. For example, the MCI subject may be unable to master new computer skills
(Figure 3). MCI subjects who are not employed, but who plan complex social events, such
as dinner parties, may manifest declines in their ability to organize such events.

Stage 3 Figure 3
Other MCI subjects may manifest concentration deficits. Many persons with these
symptoms begin to experience anxiety, which may be overtly evident.
The prognosis for persons with these subtle symptoms of impairment is variable,
even when a select subject group who are free of overt medical or psychological
conditions which might account for, or contribute to, the impairments are studied.
A substantial proportion of these persons will not decline, even when followed over
the course of many years. However, in a majority of persons with stage 3 symptoms,
overt decline will occur, and clear symptoms of dementia will become manifest over
intervals of approximately 2 to 4 years. In persons who are not called upon to perform
complex occupational and/or social tasks, symptoms in this stage may not become
evident to family members or friends of the MCI patient. Even when symptoms do
become noticeable, MCI subjects are commonly midway or near the end of this stage
before concerns result in clinical consultation. Consequently, although progression to
the next stage in MCI subjects commonly occurs in 2 to 3 years, the true duration of
this stage, when it is a harbinger of subsequently manifest dementia, is probably
approximately 7 years.
Management of persons in this stage includes counseling regarding the desirability of
continuing in a complex and demanding occupational role. Sometimes, a ‘strategic
withdrawal’ in the form of retirement, may alleviate psychological stress and reduce
both subjective and overtly manifest anxiety.

Stage 4: Mild Alzheimer’s disease

The diagnosis of Alzheimer’s disease can be made with considerable accuracy in this stage.
The most common functioning deficit in these patients is a decreased ability to manage
instrumental (complex) activities of daily life. Examples of common deficits include
decreased ability to manage finances, to prepare meals for guests, and to market for
oneself and one’s family. The stage 4 patient shown has difficulty writing the correct
date and the correct amount on the check (Figure 4). Consequently, her husband has to
supervise this activity. The mean duration of this stage is 2 years.

Stage 4 Figure 4
Symptoms of impairment become evident in this stage. For example, seemingly major
recent events, such as a recent holiday or a recent visit to a relative, may, or may not,
be recalled. Similarly, overt mistakes in recalling the day of the week, month or season
of the year may occur. Patients at this stage can still generally recall their correct current
address. They can also generally correctly recall the weather conditions outside and very
important current events, such as the name of a prominent head of state. Despite the overt
deficits in cognition, persons at this stage can still potentially survive independently in
community settings. However, functional capacities become compromised in the
performance of instrumental (i.e. complex) activities of daily life. For example, there
is a decreased capacity to manage personal finances. For the stage 4 patient who is living independently, this may become evident in the form of difficulties in paying rent and other
bills. A spouse may note difficulties in writing the correct date and the correct amount in
paying checks. The ability to independently market for food and groceries also becomes compromised in this stage. Persons who previously prepared meals for family members
and/or guests begin to manifest decreased performance in these skills. Similarly, the ability
to order food from a menu in a restaurant setting begins to be compromised. Frequently, his is manifest in the patient handing the menu to the spouse and saying ‘you order’.
The dominant mood at this stage is frequently what psychiatrists term a flattening of affect
and withdrawal. In other words, the patient often seems less emotionally responsive than
previously. This absence of emotional responsivity is probably intimately related to the
patient’s denial of their deficit, which is often also notable at this stage. Although the
patient is aware of their deficits, this awareness of decreased intellectual capacity is too
painful for most persons and, hence, the psychological defense mechanism known as denial,
whereby the patient seeks to hide their deficit, even from themselves where possible,
becomes operative. In this context, the flattening of affect occurs because the patient is
fearful of revealing their deficits. Consequently, the patient withdraws from participation
in activities such as conversations.
In the absence of complicating medical pathology, the diagnosis of AD can be made with considerable certainty from the beginning of this stage, Studies indicate that the duration
of this stage of mild AD is a mean of approximately 2 years.
Top Ten Alzheimer’s Signs & Symptoms

Stage 5: Moderate Alzheimer’s disease


Stage 5 Figure 5
In this stage, deficits are of sufficient magnitude as to prevent catastrophe-free, independent community survival. The characteristic functional change in this stage is incipient deficits in
basic activities of daily life. This is manifest in a decrement in the ability to choose proper
clothing to wear for the weather conditions and/or for the daily circumstances (occasions).
Some patients begin to wear the same clothing day after day unless reminded to change.
The spouse or other caregiver begins to counsel regarding the choice of clothing. The mean
duration of this stage is 1.5 years.
At this stage, deficits are of sufficient magnitude as to prevent independent, catastrophe-free, community survival. Patients can no longer manage on their own in the community. If they
are ostensibly alone in the community then there is generally someone who is assisting in
providing adequate and proper food, as well as assuring that the rent and utilities are paid
and the patient’s finances are taken care of. For those who are not properly watched and/or supervised, predatory strangers may become a problem. Very common reactions for persons
at this stage who are not given adequate support are behavioral problems such as anger and suspiciousness.
Cognitively, persons at this stage frequently cannot recall such major events and aspects of
their current lives as the name of the current president, the weather conditions of the day, or
their correct current address. Characteristically, some of these important aspects of current
life are recalled, but not others. Also, the information is loosely held, so, for example, the
patient may recall their correct address on certain occasions, but not others.
Remote memory also suffers to the extent that persons may not recall the names of some of
the schools which they attended for many years, and from which they graduated. Orientation
may be compromised to the extent that the correct year may not be recalled. Calculation
deficits are of such magnitude that an educated person has difficulty counting backward
from 20 by 2s. Functionally, persons at this stage have incipient difficulties with basic
activities of daily life.
The characteristic deficit of this type is decreased ability to independently choose proper
clothing. This stage lasts an average of approximately 1.5 years.
In this stage, deficits are of sufficient magnitude as to prevent catastrophe-free, independent community survival. The characteristic functional change in this stage is incipient deficits in
basic activities of daily life. This is manifest in a decrement in the ability to choose proper
clothing to wear for the weather conditions and/or for the daily circumstances (occasions).
Some patients begin to wear the same clothing day after day unless reminded to change.
The spouse or other caregiver begins to counsel regarding the choice of clothing (Figure 5).
The mean duration of this stage is 1.5 years.

Stage 6: Moderately severe Alzheimer’s disease


Stage 6a Figure 6
At this stage, the ability to perform basic activities of daily life becomes compromised.
Functionally, five successive substages are identifiable. Initially, in stage 6a, patients,
in addition to having lost the ability to choose their clothing without assistance, begin
to require assistance in putting on their clothing properly. Unless supervised, patients
may put their clothing on backward, they may have difficulty putting their arm in the
correct sleeve, or they may dress themselves in the wrong sequence (Figure 6).
In the stage of moderately severe Alzheimer’s disease, the cognitive deficits are of
sufficient magnitude as to interfere with the ability to carry out basic activities of
daily life. Generally, the earliest such deficit noted in this stage is decreased ability
to put on clothing correctly without assistance. The total duration of the stage of
moderately severe AD (stage 6a through 6e) is approximately 2.5 years.
For example, patients may put their street clothes on over their night clothes.
At approximately the same point in the evolution of AD, but generally just a little later
in the temporal sequence, patients lose the ability to bathe independently without
assistance (stage 6b). Characteristically, the earliest and most common deficit in
bathing is difficulty adjusting the temperature of the bath water. Initially, once the
spouse adjusts the temperature of the bath water, the patient can still potentially
otherwise bathe independently. Subsequently, as this stage evolves, additional deficits
in bathing independently as well as in dressing independently occur. In this 6b
substage, patients generally develop deficits in other modalities of daily hygiene
such as properly brushing their teeth independently.

Stage 6b Figure 7
Requires assistance adjusting the temperature of the bath water. At approximately the same
time as Alzheimer’s patients begin to lose the ability to put on their clothing properly
without assistance, but generally just a little bit later in the disease course, patients
begin to require assistance in handling the mechanics of bathing (Figure 7). Difficulty
adjusting the temperature of the bath water is the classical earliest deficit in bathing capacity
in Alzheimer’s disease.

Stages 6c, 6d, 6e

With the further evolution of AD, patients lose the ability to manage independently the
mechanics of toileting correctly (stage 6c). Unless supervised, patients may place the toilet
tissue in the wrong place. Many patients will forget to flush the toilet properly. As the
disease evolves in this stage, patients subsequently become incontinent. Generally, urinary incontinence occurs first (stage 6d), then fecal incontinence occurs (stage 6e).
The incontinence can be treated, or even initially prevented entirely in many cases, by
frequent toileting. Subsequently, strategies for managing incontinence, including
appropriate bedding, absorbent undergarments, etc., become necessary.

Stage 6c Figure 8
Requires assistance with cleanliness in toileting (Figure 8). After Alzheimer’s patients lose
the ability to dress and bathe without assistance, they lose the ability to independently maintain cleanliness in toileting.
Requires assistance to maintain continence (Figure 9). After Alzheimer’s patients lose the
ability to dress, bathe and toilet without assistance, they develop incontinence. Generally,
urinary incontinence precedes fecal incontinence. Strategies to prevent episodes of incontinence include taking the patient to the restroom and supervision of toileting.
In this sixth stage cognitive deficits are generally so severe that persons will display little or
no knowledge when queried regarding such major aspects of their current life circumstances
as their current address or the weather conditions of the day.

Stages 6d Figure 9
In this stage the patient’s cognitive deficits are generally of such magnitude that the patient
may at times confuse their wife with their mother or otherwise misidentify or be uncertain
of the identity of close family members (Figure 10). At the end of this stage, speech ability
overtly breaks down.
Recall of current events is generally deficient to the extent that the patient cannot name the
current national head of state or other, similarly prominent newsworthy figures. Persons at
this sixth stage will most often not be able to recall the names of any of the schools which
they attended. They may, or may not, recall such basic life events as the names of their
parents, their former occupation and the country in which they were born. They still have
some knowledge of their own names; however, patients in this stage begin to confuse their
spouse with their deceased parent and otherwise mistake the identity of persons, even close
family members, in their own environment. Calculation ability is frequently so severely
compromised at this stage that even well-educated patients had difficulty counting
backward consecutively from 10 by 1s.

Stage 6e Figure 10
Emotional changes generally become most overt and disturbing in this sixth stage of AD.
Although these emotional changes may, in part, have a neurochemical basis, they are also
clearly related to the patient’s psychological reaction to their circumstances. For example,
because of their cognitive deficits, patients can no longer channel their energies into
productive activities. Consequently, unless appropriate direction is provided, patients
begin to fidget, to pace, to move objects around and place items where they may not
belong, or to manifest other forms of purposeless or inappropriate activities. Because
of the patient’s fear, frustration and shame regarding their circumstances, as well as
other factors, patients frequently develop verbal outbursts, and threatening, or even
violent, behavior may occur. Because patients can no longer survive independently,
they commonly develop a fear of being left alone. Treatment of these and other
behavioral and psychological symptoms which occur at this stage, as well as at other
stages of AD, involves counseling regarding appropriate activities and the
psychological impact of the illness upon the patient, as well as pharmacological
interventions.
The mean duration of this sixth stage of AD is approximately 2.3 years. As this stage comes
to an end, the patient, who is doubly incontinent and needs assistance with dressing and
bathing, begins to manifest overt breakdown in the ability to articulate speech. Stuttering (verbigeration), neologisms, and/or an increased paucity of speech, become manifest.

Stage 7: Severe Alzheimer’s disease

At this stage, AD patients require continuous assistance with basic activities of daily life for
survival. Six consecutive functional substages can be identified over the course of this final
seventh stage. Early in this stage, speech has become so circumscribed, as to be limited to approximately a half dozen intelligible words or fewer in the course of an intensive contact
and attempt at an interview with numerous queries (stage 7a). As this stage progresses,
speech becomes even more limited to, at most, a single intelligible word (stage 7b).
Once speech is lost, the ability to ambulate independently (without assistance), is invariably
lost (stage 7c, Figure 11). However, ambulatory ability is readily compromised at the end of
the sixth stage and in the early portion of the seventh stage by concomitant physical
disability, poor care, medication side-effects or other factors. Conversely, superb care
provided in the early seventh stage, and particularly in stage 7b, can postpone the onset
of loss of ambulation, potentially for many years. However, under ordinary circumstances,
stage 7a has a mean duration of approximately 1 year, and stage 7b has a mean duration of approximately 1.5 years.
Early in the course of this final stage of AD speech ability is limited to only a few words.
Later, all intelligible speech is essentially lost, with speech limited to at most, a single
intelligible word. Subsequently, ambulatory ability is lost and the patient requires
assistance in walking (Figure 11). Each substage of this final seventh stage lasts an
average of 1-1.5 years.

Stage 7 Figure 11
In patients who remain alive, stage 7c lasts approximately 1 year, after which patients lose
the ability not only to ambulate independently, but also to sit up independently (stage 7d),
At this point in the evolution of AD, patients will fall over when seated unless there are arm
rests to hold the patient up in the chair (Figure 12).

Stage 7d Figure 12
This 7d substage lasts approximately 1 year. Patients who survive subsequently lose the
ability to smile (stage 7e). At this substage only grimacing facial movements are observed
in place of smiles, This 7e substage lasts a mean of approximately 1.5 years. It is followed in survivors, by a final 7f substage, in which AD patients additionally lose the ability to hold up
their head independently.
In the latter portion of the final stage of AD, patients become immobile co the extent that
they require support to sit up without falling. With the advance of this stage, patients lose
the ability to smile and, ultimately, to hold up their head without assistance, unless their
neck becomes contracted and immobile. Patients can survive in this final 7f substage
indefinitely; however, most patients succumb during the course of stage 7.
With appropriate care and life support, patients can survive in this final substage of AD
for a period of years.
With the advent of the seventh stage of AD, certain physical and neurological changes
become increasingly evident. One of these changes is physical rigidity. Evident rigidity
upon examination of the passive range of motion of major joints, such as the elbow,
is present in the great majority of patients, throughout the course of the seventh stage
(Figure 13).

Stage 7 Figure 13
In the final stages of AD patients manifest increasing rigidity. Rigidity is evident to the
examiner in the stage 7 patient upon passive range of motion of major joints such as the
elbow.
In many patients, this rigidity appears to be a precursor to the appearance of overt
physical deformities in the form of contractures. Contractures are irreversible deformities
which prevent the passive or active range of motion of joints (Figure 14). In the early
seventh stage (7a and 7b), approximately 40% of AD patients manifest these deformities.
Later in the seventh stage, in immobile patients (from stage 7d to 7f), nearly all AD
patients manifest contractures in multiple extremities and joints.

Stage 7 Figure 14
Contractures of the elbow, wrists and fingers. Development of joint deformities known as contractures is an increasing problem in the stage 7 Alzheimer’s disease. A contracture is
a joint deformity which makes full range of movement of a joint impossible without
producing severe pain. Approximately 40% of patients in stage 7a and 7b manifest these
deformities to the extent that they cannot move a major joint more than half way. In the
immobile Alzheimer’s patient (stages 7d to 7f). Approximately 95% of patients manifest
these deformities which are usually present in many joints.
Neurological reflex changes also become evident in the stage 7 AD patient. Particularly
notable is the emergence of so-called ‘infantile’, ‘primitive’ or ‘developmental’ reflexes
which are present in the infant but which disappear in the toddler. These reflexes,
including the grasp reflex, sucking reflex (Figure 15), and the Babinski plantar extensor
reflex (Figure 16), generally begin to re-emerge in the latter part of the sixth stage and
are usually present in the stage 7 AD patient. Because of the much greater physical size
and strength of the AD patient in comparison with an infant, these reflexes can be very
strong and can impact both positively and negatively on the care provided to the AD
patient”. AD patients commonly die during the course of the seventh stage. The mean
point of demise is when patients lose the ability to ambulate and to sit up independently
(stages 7c and 7d).

Stage 7 Figure 15
Sucking reflex (Figure 15). ‘Primitive’ reflexes, also known as ‘infantile’ reflexes or
‘developmental’ reflexes, such as the sucking reflex, are evident in the stage 7
Alzheimer’s patient.
Babinski or plantar extensor reflex (Figure 16). Another infantile reflex seen in the
stage 7 Alzheimer’s patient is the Babinski reflex. This abnormal response to
stimulation of the sole of the foot is marked by dorsiflexion of the great toe and
fanning of the other digits of the foot.

Stage 7 Figure 16
The most frequent proximate cause of death is pneumonia. Aspiration is one common
cause of terminal pneumonia. Another common cause of demise in AD is infected
decubital ulcerations. AD patients in the seventh stage appear to be more vulnerable to
all of the common causes of mortality in the elderly including stroke, heart disease and
cancer. Some patients in this final stage appear to succumb to no identifiable condition
other than AD.

Monday 12 June 2017

Changes in character and eating habits

We are in the full throws of downsizing our belongings, de-cluttering and packing
whatever we are taking with us when we move to a 2 bed flat. He`s obsessed with
controlling the process of it all. I have to be careful about what goes in the bin as
he will demand that it stays even if the item is no longer needed or wanted.
It`s becoming increasingly difficult to tolerate his anger outbursts and accusations.
There is an ugly face to this dementia that has changed my loving partner into an
ever more complaining, OCD lead person, increasingly demanding and forever set
in his ways, controlling my every move, wanting to determine how things are to be
done, what I can say or do twenty four seven. It now often leaves me in tears as his
stubborn verbal combats take their toll. I long for some unity, agreeability and most
of all peace and harmony. But, I know that this is not forthcoming.
He`s losing his abilities to control his phone or manage some tasks on the computer,
repeatedly typing the wrong spellings, pressing the wrong buttons, making him more
irritable and angry as a result. He`s becoming agitated and frustrated with himself, too.
He`ll burst into verbal aggression against the phone or computer. Talking to himself
is another sign of his mental decline.
Trying to provide nourishing meals and drinks for both of us is also a struggle when
he often complains about taste and textures of meals. Whatever he used to love in
the past has now become intolerable to him. His taste buds are forever changing now,
making meal planning a nightmare scenario. I hate to waste food or money, but have
days when his dinner ends up in the bin for apparently little or no reason. It`s so very
frustrating. I wish there was a better way, but his behaviour will not let me find it.
End of June we have a doctors appointment where the result of a brain scan will be
revealed. I`m dreading the outcome already.