Rather than go into the many physical causes of dementia, I would like to share my personal experience with it, and also what it can be like to be a carer.
Very often, people with dementia only exhibit symptoms to their closest family or partner, which means that sometimes the rest of the family can be in denial and not recognise the symptoms – they may not even believe the immediate carer that the person is deteriorating. I certainly found that to be the case in my experience caring for my husband.
The first signs for us were Tom’s sudden lack of interest in old hobbies after what we now know to have been transient ischemic attack (TIA). He suddenly found that he couldn’t focus or concentrate; for example, we had to ask the pharmacy to organise his medications in trays. Everything became too much trouble and when he did make an effort he would become disheartened when he made a lot of mistakes. He became forgetful, and there would be arguments between us over silly things. Eventually, he realised himself that there was something amiss.
After struggling for eighteen months or so we went to see his GP. The doctor carried out a simple memory test in the surgery and referred Tom to a Memory Centre for an ACE test. A brain scan followed a month later, and eventually Tom was diagnosed with Vascular Dementia. After he died a Post Mortem examination revealed that his arteries were blocked: atherosclerosis.
It is worth noting that with his other conditions, including Type 2 Diabetes and COPD, Tom‘s blood pressure and cholesterol were at normal levels. We hear a lot about keeping those levels down and that they cause heart attacks and other vascular events, but in Tom‘s case, and in many others, that was not what happened.
Dementia is Not Just Forgetting
Dementia is not just forgetting things or going into another room and wondering what you went in there for, or forgetting where you put things. At times you may wonder whether the little silly things you do from time to time may be a sign, but that happens to all of us, doesn’t it?
Alzheimer’s is the most common form of dementia, and there is treatment in the early stages. But with other kinds of dementia including Vascular, there is often no treatment.
What about prevention? You can change your lifestyle: enjoying a good diet and making sure that you take care of your cardiac system in general, with plenty of activity. This advice is general for ageing well and for all kinds of disease, and is best begun while you are young.
Once a diagnosis is in place, there are very often courses for you and the person who is diagnosed to learn what dementia is and how to live with it. The Memory Clinic organised that for Tom and me, and we found it very helpful. They gave lots of information about the condition, and support for it.
It is very important to take care of the carer as well as the patient. Not everyone is aware that in 2014 parliament passed a bill to make sure of support for carers.
It’s up to us as carers to look into what support may be available. A lot of people carry on caring, not realising what kind of support may be available. Age UK or your local volunteer group will assist you in finding support. Go online and find groups such as Dementia UK.
Put Your Oxygen Mask On!
Take care of yourself, like being in a plane in an emergency: put your oxygen mask on before you can take care of others. With dementia and other illnesses the oxygen mask is essential. If you don’t take care of yourself, you will find the going even tougher when taking care of another.
It can be a very lonely existence looking after someone you love and whose condition you see deteriorating, even more so when other people don’t see what’s happening day-to-day.
Caring For Carers
In my part of the country, Plymouth, Devon, UK we have an excellent Caring For Carers movement where you can take the person you care for with you to a monthly meeting. They go into another room with carers looking after them to give you a break, and you meet other carers and share your problems, ask questions and find support. There are events, such as theatre outings at reduced prices, arranged for you either with or without the cared for.
Recognise that you need help; don’t struggle on your own. It isn’t worth it, and at the end of the day you could lose your own health and not be able to take care of the person anyway.
Make sure that you claim any financial support that may be available. In the UK look first at Attendance Allowance (not means-tested). It is a long form to fill in, so it’s best if you get help from someone like Age UK.
Don’t be too proud; claim your entitlement, irrespective of financial circumstances.
Investigate respite care, available for those who need a break. It may just be someone coming in for a couple of hours to sit with your loved one, or it may even be a week’s stay somewhere where they will be safe, and you can get away for a break. You can take this out of the Attendance Allowance.
Getting away for a break can be very difficult if the person you are caring for objects to it. But please be assured that the most important thing is for you to have a break, and the person with dementia needs to learn the importance of that.
If you start the process while they’re still reasonably well, perhaps you could get a carer in for an hour or two once a week, just to get to know each other.
I’m afraid that it’s not easy in many cases. But you must be firm. In my case, I persuaded my husband that an hour off was necessary for my needs rather than his.
Living With Dementia
People with dementia do not like to be seen as someone who is suffering from dementia. It is preferable to refer it as living with dementia because that’s exactly what it is. At first, it can be quite mild and the phrase living with dementia maintains dignity.
As a person with dementia deteriorates, it can be very hard on the carer. Recently BBC’s Casualty featured a senior nurse, Duffy, with Vascular Dementia. Although every case is unique, the story was quite accurate, except that Duffy, who was married to Charlie the head nurse, had a very fast progression. In the last stages, Charlie wondered if he could watch the person gradually deteriorating. People often have the thought in their minds, (though they rarely voice it), that they wish the person would just pass away before things get any worse.
My personal experience was that when Tom died suddenly, I felt relieved that he wouldn’t have to go through anything worse than he already had, and I know his family felt like that too. So if you get those thoughts don’t let them worry you. Don’t dwell on the thought that you shouldn’t be thinking like that. It is quite natural that you simply want the best for both you and the person you are caring for.
Do your research, be open to as much support as possible. And remember: whether you are the person living with Dementia, or a carer, YOU are the only person who can witness what is happening.
See it as a journey, and look to those people you know will listen, and understand.
Thank goodness that society is becoming more aware of Dementia.
Artwork courtesy of Tavistock artist Monty Shulberg
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