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.
 

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!

Remembering the past, but often forgetting the now

 
 



Short term memories are sometimes vague, but events from long ago can

still be remembered vividly. Family members share old photographs on

facebook and DB will show them to me and point at each person on these

    pictures, then tells me where it was taken and who the people in those

    photos are. But, ask him to remember his dentist appointment in June and

    he gives me a blank look. He`s forgotten. I love it when he remembers the

    past and talks about our first meeting, our lovely holidays together and the

    way we used to go for restaurant meals on those holidays. He`ll recall the

    exact meal we had in Morocco, sitting on a restaurant terrace overlooking

    the big square in Marrakech, but can`t remember what I had made for our

    dinner the night before.

 

 

 

 

 

 

 

 

How time has changed us over the years. The first picture was taken just one

year after we had started living together (14 years ago). The second picture is

from 3 years ago, taken at his niece`s wedding, and the last picture was taken

last summer in Brighton, on an evening out with one of his cousins.

Signs of the dementia started to emerge just after that last photo was taken.

I`d give anything to get that man back from 14 years ago. Dementia has robbed

me of a loving and caring partner, and replaced him with a cantankerous, often

verbally aggressive old cute. Even so I know that underneath it all my DB is

still around, just not able to function or communicate as he used to, makes me

very sad for him. So, I treasure the rare moments of his clarity and remembering.

These moments are precious and priceless, as he appears to be his normal self

once more whilst he remembers the good old days.

  



Having a better day

Days are never the same with his problems. But, today seems a better day as we have
not had major outbursts of anger. I was always quick to divert the onset of possible
OCD led outburst. Weather this has anything to do with the fact that we both had a
later start to the day than usual, I don`t really know. Keeping the household running
smoothly and being able to do chores without him wanting my attention at least every
few minutes is becoming difficult. He watches TV a lot during the day and will call
me into the living room to discuss what he`s watching, or wants to show me something,
so I find ploughing through housework taking at least twice as long as it used to. He`s
also become much more verbal since the onset of the disease, so I feel bombarded with
sometimes repeated conversations and his obvious need to be talking until the cows
come home. He`s also become more controlling in his behaviour; has the need to be
fully informed about the way I intend to cook lunch or dinner, and will often follow me
into the kitchen to determine what I`m doing. He then will stand next to me and talk to
me constantly, trying to influence my preparation of the meal. He will find excuses to
be in the kitchen with me, so getting on with my tasks is sometimes very stressful, too.
Sitting by himself in the living room whilst I`m cooking seems virtually impossible for
him to achieve. The only time he can be distracted for a short while is when he`s looking
at films or pictures on the computer, or he has put his favourite music on to play whilst
he`s busy with the computer. I now often feel that I only ever get a short period of peace
and a little tranquillity for myself if I tell him that I`m popping out to the shops to get a
few food basics. But, as soon as I return from my little outing he feels the need to totally
bombard me with his constant talking and attention seeking, afresh. There is no let-off
with this, not even over dinner. His dinner will often get cold as he sits and talks all the
way through it, whilst I rush through mine so that I can escape to the kitchen to do the
washing up in a little bit of respite from his bombardment of words. - To think that he
used to be such a private and quiet individual that never talked much about his former
life before we met is now impossible to imagine. Back then I would have given much
for him to speak about his childhood and family life much more. Now, I often wish he
would be quiet to let me get on with what needs to be done. - In the evenings he seems
to calm down a little so I get at least an hour or so to sit at my computer upstairs as he
will watch something on his computer in the living room, downstairs. He doesn`t settle
easily to sleep at night and often comes to bed after me. I help him get ready into his
PJs and when he takes a shower or bath, then make him a cup of tea before I leave him
in front of his computer before I go to bed. Lately, he has often lost himself in several
films to watch and doesn`t go to bed until 3am or even 5am, only to get up again by
around 9.30am. The times in bed during night time seem to get shorter, but at least he
does take a nap during the day on at least two occasions in the week.
Tonight, he has taken it upon himself to do some easy cooking, but still needs some
help with that. He could not remember in what order he had to cook the food, so I
had to make sure he knew which bowl had the veggies in it that needed the longest
cooking time, and he was aware to use those first. He can be left to do some tasks,
but needs to be checked from time to time just in case he experiences some sudden
loss of muscle control, therefore is dropping things. Keeping him busy with easy
tasks seem to help divert his attention seeking and constant talking as well, so I will
need to find him some more bits to do in the home as long as I can supervise him.

The beginning of it all

I`ve began my journey as a full time carer for my partner in April 2017, just as we
discovered he might well be suffering from Vascular Dementia at the age of 55.
Tell tale signs of the disease started to emerge around 5-6 month prior to April, but
I had put those down to the fact that he had been made redundant 6 years earlier,
then had suffered several health problems including COPD, sleep apnoea and now
also diabetes that make him virtually house bound and slightly depressed. I was then
still in employment and often didn`t have the insight or understanding of what was
happening to him. I just put it down to normal aging process and wasn`t alarmed
until his youngest daughter who works as an employed carer, had taken him to the
GP one day when I could not get time of work to accompany him there myself.
She, then had to explain to me afterwards what was actually happening to my
previously loving and placid partner.
He was making himself cups of tea during days I was working and had experienced
some loss of muscle control in his hands, therefore dropping the hot cup of tea as
soon as he had picked it up, and his increasing slurred speech was now explainable.
I had put that down to his facial palsy he had suffered a few years prior, but it can now
be blamed on the onset of the dementia.
There had also been occasional lapses in memory, repeated questioning the time of day,
several times in one day. Then, the mood swings also started, and his already mild OCD
behaviour became far more apparent and intense. There now are verbally aggressive
bouts that become more frequent whenever he has to confront something that does not
comply with his OCD requirements. These outbursts are directed at me and will happen
at least once a day. He will engage me in arguments that he can not walk away from.
He winds himself up to the extend that he ends up shouting and blaming me for having
caused conflict; name calling is then used as aggression against me; his flair-ups then
also causing unnecessary stress for himself as well as me.
You could call it un-reasonable behaviour in normal circumstances. But, I know now
that I am no longer dealing with normal behaviour or even normal circumstances.
Having been made aware of how Vascular Dementia will show its ugly face at least
made me a little more prepared for it. It doesn`t mean it did not upset or stress me out.
No matter how prepared you might think you are, there are going to be moments where
your sensitive nature takes over and you do find yourself fuming on the inside at the
unreasonable behaviour of the person with onset of dementia. Trying to explain to him
that he had actually started the arguments was totally fruitless. Reasoning with him just
doesn`t work at all. So, I now just agree with his accusations, then try to divert his
attention from the subject of the matter. It works sometimes, but not all of the time.
When engaged in these arguments he will actually repeat himself over and over to
keep the momentum of the flair-up going; another symptom of this horrible disease, as
I found out by now through joining an advice group of Dementia and Altzheimer carers
on facebook.
More appointments to the GP will be necessary to deal with his behaviour. We`ve been
to see a neurologist at the hospital who is convinced that he needs something to treat his
depression, and has also suggested he should have a brain scan. The appointment for it
should be in the post within the next month.
He had been diagnosed with diabetes type 2 last year and is on mild medication for that.
What I wasn`t aware of is the connection between diabetes and the onset of dementia.
Several carers on the facebook advice group have now pointed this out to me, so I will
raise the subject with the GP at our next appointment, hoping that we can get some
medication that can slow the progress of the disease. In the meantime I try to keep it
together at home, look after him as best I can and hope to find some type of activities
that might occupy his brain in positive ways. Listening to his favourite music from the
60s and 70s seems to calm his mind and diverts his attention with help of the computer.
Music is therapy for dementia sufferers; at least that is some comfort for us carers, too.