Last week I wrote this post about how proud I am of my Grandparents and how they are coping with my Grandads decent into Dementia.
I mentioned that my Dad was a mental health care professional before he retired a few years ago. This is a massive factor in our family as a whole unit coping with dementia.
As some of you may have experienced, it isn’t easy watching a loved one slip further away right in-front of your eyes knowing that there is nothing that you can do to save them. There is nothing in the world that can make this better… but there are a few things that can help…
Grab a brew – this is a long one…
Over to you Dad…
How dementia affects families…
What is dementia: How adults, teenagers and children can be affected.
Betty and Alf met in 1948.
Alf had recently completed his post war conscription in the Ulster Rifles, serving for two years in Egypt, Israel and what was then known as Palestine.
He’d returned to his job in a local iron foundry on completion of his national service and this was where he met Betty.
Betty left school aged fifteen, which was usual back then, and started work almost immediately, which was also usual. She spent her working day sorting hinges and other hardware at the iron foundry while Alf worked casting molten iron.
Happily their lunch breaks coincided and as often happens when groups of young men and women “coincide” teasing and flirting takes place. Alf seemed so mature and worldly wise to Betty. And Betty was a very attractive young woman. Soon Alf and Betty were very much in love.
Times were hard, rationing was still in place following the war and young workers were expected to contribute most, if not all, of their hard earned wages to help support their families.
Betty’s Mum and Dad were none too pleased when their sixteen year old daughter brought a young man home to meet them, announcing that they were in love and wanted to get married. They were opposed to marriage at so early an age and were also hoping to get a little more financially from their long term investment in their daughter before she wed, and they refused to give their consent.
Betty and Alf were determined to marry and spend the rest of their lives together. To these ends they devised a cunning plan…
In those days a child being born out of wedlock was considered shameful and was still very much frowned upon by society. Tongues would wag and shame would fall upon the family.
Alf and Betty were married on New Year’s Eve 1949 and young Alf (their cunning plan) was born on 15th May 1950. Their marriage was blessed with a further three children over the years. Three boys and a girl in total.
After sixty-five years of marriage the current running total is four children, eight grandchildren and two great grandchildren. Counting: in laws, outlaws and exes the extended family is considerably larger.
Betty had always managed the family finances, paid the bills and budgeted. Alf was a man of his time. He went to work every day and brought home the wages. That was his role in life. His wife’s was to manage the house and family, and sort out any problems.
As Alf entered his late seventies Betty began to notice small changes in his behaviour. She had once described Alf as having a dependant personality, meaning he depended on her to sort out any problems, but it was more than that. Betty had suspected for quite some time that there was something wrong. Alf was becoming increasingly forgetful and his judgement, planning and problem solving were also affected. In particular she was becoming increasingly worried about his ability to drive safely, especially on the busy motorway network.
She discussed her fears with her family and they took the responsibility for driving on any journeys which included motorways. She was still far from happy but Alf was stubborn and wanted to remain independent, maintaining he was safe to drive and continued to take his car on local journeys. He seemed able to manage short local journeys but anything out of the norm was clearly a struggle.
However, an incident which resulted in a small dent shook his confidence. Betty’s dwindling confidence was exhausted and she refused to be a passenger any longer.
Following further discussions with members of her family Betty persuaded Alf to visit his GP with regard to his growing cognitive difficulties and his GP referred him to the Long Life and Memory Service (LLAMS) which is part of the local NHS Community Services.
They carried out an assessment on Alf and interviewed Betty and their eldest son. Following an assessment on Alf and interviewing his wife and son the consultant gave Alf a diagnosis of “mixed dementia”. The Consultant psychiatrist advised him to give up his driving licence, warning him that his insurance would no longer be valid and he must inform his insurance company of his condition.
He agreed to stop driving.
She also prescribed medication for him. It is not a cure for dementia, there is no cure, but hopefully it would slow down the process of his illness.
The team at LLAMS also put them in touch with other services.
Social Services have a duty to assess the needs of those diagnosed with dementia. They can offer help in the form of home care, laundry services, meals on wheels or even nursing care. These services may be means tested.
Day care centres can be a great source of help for those who suffer from dementia and their carers. They are often run by voluntary organisations such as the Alzheimer’s Society or Age Concern.
So what is dementia?
Dementia is an umbrella term covering a number of conditions which have similar symptoms, the most common of which is Alzheimer’s disease, which is estimated to affect 60% to 80% of the total number of dementia sufferers in the UK. The second most common form or dementia is vascular dementia, which affects a further estimated 10% of dementia sufferers.
Vascular dementia is a result of a reduced supply of oxygen to the brain which is usually because of a narrowing or blocking of blood vessels. The results of these assaults on the brain can be large or small and cause the symptoms of vascular dementia to appear gradually or suddenly, dependent upon the scale of the insult to the brain. Typically a number of small incidents, which are called Transient Ischemic Attacks (TIAs), cause a gradual worsening of the symptoms of dementia.
There are a number of other different causes of dementia which make up the remaining 10% of sufferers including:
- Dementia with Lewy bodies; which shares many of the symptoms of Alzheimer’s disease but can also include visual hallucinations.
- Frontotemporal dementia: typically include some changes in emotion, personality and behaviour. They may also lose some of their inhibitions which might lead to tactlessness or inappropriate comments.
Some rarer causes of dementia include:
- Alcohol related brain damage or Korsakoff’s syndrome
- HIV infection related dementia
- Huntingdon’s Chorea
- Creutzfeldt Jacobs’s disease
- A number of other conditions which are fortunately rare
Some people suffer from more than one type of dementia: frequently both Alzheimer’s disease and vascular dementia concurrently. This is referred to as mixed dementia.
Each individual is unique and they will experience dementia in their own way particularly in the early stages.
The symptoms of dementia may include:
- Memory loss, especially for recent events
- Increasing difficulty with tasks, planning or problem solving
- Becoming confused in unfamiliar surroundings
- Difficulty following a conversation or finding the correct words
- Difficulty with numbers or money
- Changes in personality, mood or behaviour
- Problems judging distances for example on stairs
Dementia usually effects older people and becomes more common with age. About 1 in 20 people over 65 will develop some degree of dementia. This figure increases to 1 in 6 people over the age of 85.
Dementia can occur in younger people but is much less common.
Although most people who develop dementia are over the age of 65, it’s important to remember that dementia and the loss of short term memory are not a normal part of growing old.
Becoming a bit more forgetful does not necessarily mean you have dementia many people notice that their memory becomes less reliable as they become older. Memory loss can also be a sign of stress, depression or certain types of illness.
Unfortunately dementia is a progressive illness with symptoms becoming gradually worse over a period of time. Memory loss and difficulties with communication can become severe. In the later stages the person is likely to neglect their own hygiene and health needs and require constant care and attention.
On average people with Alzheimer’s disease live for around 8 to 10 years following onset, however this can vary considerably from person to person. Alzheimer’s is often not the cause of death but a contributing factor for example a leading cause of death for those suffering Alzheimer’s is pneumonia.
Dementia has a devastating effect upon the individual but also a significant affect upon the whole of the family. Perhaps the most significant is the effect it has upon the spouse who will almost certainly become the main carer, although in some cases it can be an adult child.
Without the benefit of close family and friends they may sometimes be the only carer, which can seem catastrophic to the individual experiencing it.
Even before Alf’s diagnosis Betty had a good idea what the problem was, but even forearmed as she was, the confirmation was a shock. A happy comfortable life into late old age with a lifelong partner was potentially being replaced by a nightmare. She had visualised bouncing great grandchildren on her knee and sharing memories of her children and grandchildren with Alf. He was struggling to remember their names and figuratively speaking the man she married was beginning to disappear before her eyes, leaving her with a deep sense of loss, and fears for the future.
Some of the most common feelings families and carers experience are shock on diagnosis, followed by feelings of denial, anger and guilt. These same feelings have long been identified as part of the grieving process and are commonly felt following the death of a loved one.
The same process can occur as a result of other forms of loss, for example the breakdown of a relationship, loss of a home and loss through illness. Although their loved one remains as a physical presence their personality, shared memories and intimacy slowly disappear.
Unsurprisingly the “grieving process” can often lead to depression.
It’s not all doom and gloom for Alf’s family and his diagnosis of mixed dementia.
The consultant didn’t make it clear what the components of the mixed dementia she had diagnosed were.
Although his cognitive abilities continue to decline his personality seems to be remaining intact for the most part as does his sense of humour. It’s possible that Alf has vascular dementia, when personality is more likely to remain intact than with Alzheimer’s, combined with a degree of Frontotemporal dementia, when disinhibition can occur and lead to tactlessness or inappropriate remarks and other disinhibited behaviour.
This behaviour may be upsetting to others but not always.
One of Alf’s adult grandchildren remarked that Alf sometimes seems like a naughty schoolboy, full of fun and mischief. Not a bad description.
Dementia affects the whole family, not just the adults but also the younger members of the family and children.
Although the bulk of caring often falls to the partner, the adult children also often choose to become involved. Sometimes an adult child may become the only carer through necessity. When adult children become involved in care it’s likely that this will impact upon their children.
The adults may have conflicting emotions, be tired or stressed or simply not there. All of these changes can cause a child or young person experience a variety of reactions ranging from anxiety, to hiding their true feelings. They may feel embarrassed or hide their emotions by seeming to be uninterested or detached.
Older children and teenagers may be resentful that their parent’s attention is being diverted elsewhere or perhaps fear that they may expect to take on some responsibility’s themselves. Younger children may even be afraid that they might catch dementia or that some other person, like one of their parents, may inherit it genetically.
It’s even possible with very young children that they might feel that they somehow caused it to happen. As unlikely as it seems this is not unheard of. When parents’ divorce something similar can happen with the child feeling that somehow they are the cause of the breakup.
So what can be done to minimise these problem reactions?
- Although it is natural to want to protect children in many ways it is better to be honest and forthright.
- The key is to share information with them that is clear and pitched at their level of understanding.
- Talk openly. Explain that the changes in behaviour they are seeing are as a result of an illness and that no one is to blame.
- Make it clear that dementia is not contagious. Dementia doesn’t happen to children and nobody can catch it.
- Explain that there is little evidence to suggest that dementia runs in families, and it only happens to some people, not everyone!
- Make it OK to laugh but not in a hurtful or spiteful way. It often helps to laugh about a situation.
- Try to be patient and repeat information if necessary.
- Once the facts have been set out encourage questions. If you don’t know the answer why not find out together. Children are often more computer literate than their parents. Don’t pull away: share activities such as computer searches.
- Let them know that you need their support and understanding.
- Without obligating them explain how they may be able to help. If they offer to help, take them up on it!
Betty had her own health issues including angina and other problems with circulation, which were beginning to affect her mobility. Her secret fear was about what would happen to Alf if she ever needed to be hospitalised or, God forbid, she should ‘go’ before him?
She also has anxieties about how she will cope as his mental health inevitably deteriorates.
Conversely Alf worries about Betty’s health and confides that he feels that he has to keep an eye on her. He admits he couldn’t cope without her and wouldn’t want to.
Despite her fears Betty bounced back as usual. Her motto being, “Well, you just have to get on with it! What choice have you got?”
Her family helped by giving her respite on a regular basis. Even an hour of “me” time is beneficial on a regular basis. They also helped by taking Betty shopping and whatever else they could do to help alleviate some of the stress. Sometimes showing that you care or keeping in touch on a daily basis can be a great comfort.
She often talks through her thoughts and problems with members of her family. She says she feels lucky to have such a supportive family and sympathises with those who, “Have nobody”.
Alf is slowly getting worse but she tries to remain positive, coping with what she has to cope with and focusing on what Alf can do and not what he can’t do, encouraging him to lead as normal a life as possible.
Small changes can help a lot, for example, Alf is no longer able to use the TV controls and is beginning to struggle with the phone. Simple measures like, keeping an easily visible, short list, of important names and numbers next to the phone helps considerably… and she always wanted exclusive access to the TV controls!
Betty has a lot more patience than she ever thought she’d have, and if the patience runs thin she puts the kettle on. Her mother once told her that there are few problems which can’t be solved with a cup of tea and time to think, or talking things through with someone. In today’s world we now call that counselling! To be fair, sometimes it is easier to talk to a professional counsellor or an outsider rather than someone close to you.
Betty is looking forward to another few years of Alf before he finally disappears.
Her advice to those in a similar situation to herself is:
“Don’t be afraid to ask for help.”
See your GP and get an early diagnosis. An early diagnosis can help you to get help and support. Finding out sooner can give family and friends valuable time to adjust and prepare for the future.
Don’t give in to feelings of catastrophe, do the best that you can, rather than feeling overwhelmed by it all. Try to stay positive.
Local social services and organisations like the Alzheimer’s Society and Age UK can also offer help, but not if you don’t ask for it!
There are also other local non statutory organisations which may be able to help.
Finally; a few simple tips which may help those suffering from dementia, especially in the early stages, and also carers.
- Get yourself a large calendar and put important dates such as birthdays and medical appointments on it. Get into the habit of consulting it every day.
- Keep a small diary on your person. Not just for important dates but also for important addresses and phone numbers. Your own address and contact numbers might be useful in some circumstances.
- Get into the habit of putting important things like keys, glasses and dentures in the same place.
- Put labels on doors and cupboards e.g. tea and coffee, or Toilet!
- Place important numbers near the phone.
- Put a reminder on the back of the door to pick up your keys on the way out or get a key chain which fastens to your clothing.
- Label family photos with the names of those in them on the back. Label photo albums. It might be nice to go through them together.
- Maintain medical treatments.
- Buy a labelled compartmentalised pill box and make them up weekly or if it’s a struggle get someone to do it for you.
- Keep calm and carry on!
If you have any advice to add – please feel free to comment below.
Thanks for reading When Betty Met Alf
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