Dementia, a Carers storyor both sides of the fence
These notes, comments and observations are not based on theory or book
learning but from on the job practical learning the hard way, nobody is born a
Carer and nobody can provide the tuition. Form filling, box ticking is the easy
bit based on assumption but the reality of reacting to the immense daily and
constant challenges are the creator of a Carer.
I Cared for my first wife for twenty nine years, she had Parkinsons Disease
followed by Lewy Bodies, I have now had appx. Three years Caring for Angela
with Dementia. I also formed and ran Costessey Carers Group for seventeen
years, ran an Age UK Carers Group of Dementia sufferers and was Carers UK
Norfolk representative for several years. Over the years this has all given me an
accumulation of experience of the constant challenge of this disease and it’s
effect on people.
Looking after a loved one with Dementia has many varied challenges that
increase as the disease progresses making the delivering person centred care
rarely easy and straight forward. Depending on how far the condition
progressed the responsibility of every aspect of the loved one’s life is intensive
and all encompassing. Merely from eye contact the Carer has to make their
decision due to lack of communication, a very often overlooked and not
recognised challenge of the Carer’s ability and skill to support that person to
maintain an identity, someone who still has feelings and dignity.
Many changes are necessary to create a Dementia friendly home as well as
keeping the person engaged, keeping their spirits up and a positive mood. Are
they depressed? How do you know? They are unable to tell you. Do they feel
pain? Again as with everything else, they are unable to tell you, you have to
attempt to guess the answer but logic says yes to both questions..
The day begins the moment you get them up and out of bed as the first
challenge, it takes a special kind of person to take the responsibility for another
person’s wellbeing with every action being a seperate and different challange.
Washed and dressed, breakfast like all meals your decision is crucial to their
health and wellbeing. Feeding is not easy as they do not readily open their mouth
to take or chew the food to any command or request, their thought process is no
longer functioning so that what they did five minutes ago is gone and forgotten,
they may not do it again thus requiring patience, persistence and understanding.
Then follows a long day of inaction, mostly watching TV and trying to fall
asleep, this is not ideal and should be discouraged as night sleeping is often a
problem and increases as the severity of the disease progresses. Frequent waking
may cause confusion, agitation and disorientation.
The constant challenges, both mental and physical for a Carer are immense at
any age but when the Carer is older, maybe not in the best of health, possibly not
as nimble or agile as they used to be, contending with multi arthritis problems,
maybe not getting a proper nights sleep, all this contributes to the necessity of
having incoming Carers so as to give a short deserved and hard earned break
without having to concern their thoughts on the possible funding problems.
Recommend0 recommendationsPublished in Senior Chatters
Hi, as I was reading this blog I was thinking of how difficult it would be to be a carer for so many years, especially with someone with dementia. I admire you!
I am travelling interstate to visit a friend who has been diagnosed with early stage of dementia. As I speak to him on the phone I have noticed how much his personality has changed in such a short time. He spends a lot of time alone and this seems to play havoc with his mental state. Some days he sounds suicidal, other times he says things I’m not sure if they are true or imagined and he goes on and on in circles. I am afraid I won’t know how to deal with it when I’m there.
We have been friends for many years and we get along really well however this time I don’t know how to prepare myself to help him.
He has some support for domestic and physical needs but he doesn’t have emotional support and he is lonely. He begs me to come over and spend some time with him ,which I intend to.
Thank you for your blog .
Many thanks for your reply, have you seen my other post “Dementia or Alzheimers”? It is a hard subject to deal with and there is no one way to handle face to face but try to be as normal as possible, do not pick up on his changes, let him tell you and react in a positive way towards him, wish you the best of luck as he could well see or hear things that are imagined
Les
PS I have now been a 24/7 Carer for two wives for 34 years.
Wow I cannot imagine the level of care you have been giving for so many years. Having supported 2 parents through dementia until care at home became impossible. I am in awe of your obvious skill, patience and care. 💔
Thank you for understanding, it is said that we are put on this earth for a reason! I have also run Carers Groups for many years but have cut back now and only do telephone befriending for a London based charity were my knowledge and experience can help others.
Its such a gift to support others who will be so grateful for your experience. No ones knows who has not lived it. 💔
Hello, I truly admire the number of years you have been in a Caring role. I am in my sixth year as a Carer for a husband who suffered a stroke after having a Pacemaker put in, the stroke damaged hubby’s brain, leading to Dementia. There is no training in this role, it is straight into it. Thank you so much for reaching out to others.
I believe we are put on this earth for a reason.
You are so right, there is no training or manual to read, straight in and learn as you go and sadly my experience is that friends and relatives soon drift away, your circle gets smaller, your trips out reduce but although it is frustrating there is reward when you get an unexpected smile and you sense gratitude from a partner. Good luck Jenna
Thank you for your reply Les. Oh my goodness, so it’s not just me who is becoming isolated ? How you described what happens as a Carer is how my life is. Thank you so much for your kind words.