The 21st of September is World Alzheimer’s Day.
You’ve Earned It takes a look at what is available for the carer of the Alzheimer patient
Recently, Hilary witnessed an elderly acquaintance of hers, wearing herself thin taking care of her husband. This husband and wife had promised each other many years ago that they would look after each other till the end. Hilary did not see her for a while, and when she did, she asked her if she had moved to a place with more assistance. Her acquaintance told her with tears in her eyes, that she had suffered a stroke and while she was in hospital, her children had realised exactly what she was going through day after day with their father/her husband. They then arranged for their father to be put into care. When Hilary saw her, she looked like an enormous burden had been lifted – because her husband was adjusting well to his new environment and was well cared for, she is now able to get on with her life.
The Dementias are a group of progressive diseases that affect the structure and chemistry of the brain, which ultimately affect one’s day-to-day functioning, especially the ability to communicate, think and plan. Alzheimer’s is just one in this category of diseases. Dementia does not discriminate with regard to age, colour or creed, but is most prevalent in people who are in their late sixties and over. For those living with, and caring for, somebody suffering from any of the dementias, they will burn themselves out because their lives are progressively changed and disrupted.
YEI met with Jill Robson who represents Alzheimer’s South Africa (SA) in the greater Cape Town area. Alzheimer’s SA is a national body and is an informed advocate for people with the disease, as well as their caregivers and families. They are an excellent source of information on the disease and the ramifications within the family. Alzheimer’s SA have made a commitment to help people with the disease and their families. They also provide counselling and run support groups for caregivers.
So what does this all mean? If you contact Alzheimer’s SA, the first suggestion that they will make is that you get confirmation of the diagnosis. There are other diseases that cause memory loss, disorientation, paranoia and loss of judgement. It is important to rule these out. They will recommend that you see a Geriatrician, Psychiatrist or Neurologist – all of whom have the specialist knowledge and screening tools to make the diagnosis. Alzheimer’s SA will have advice for the family members on how to get the patient to that initial screening, because 9 times out of 10, the patient will resist and give very plausible reasons why they do not need to see a doctor. Jill gave me many examples of people trying to mask their degeneration and convince themselves, as well as their families, that everything was absolutely fine.
Once the diagnosis is confirmed, the carers and families (most of the time these are one and the same person) have access to not only as much information as they can digest from Alzheimer’s SA, but also counselling and support groups. Booklets such as the ‘Caregiver’s Guide to Dementia’ and ‘Every Day a New Day, a guide for those who care for people with Alzheimer’s disease’, are packed with useful information on how to deal with the disease as well as the Alzheimer’s patient .
A monthly newsletter lists dates and venues for support groups. Getting together with a group of people who are usually going through the same problems and difficulties as oneself is a powerful way to overcome these difficulties. The advice dispensed is usually tried and tested in a setting very similar to your own.
Alzheimer’s SA also strives to keep an updated list of facilities that care specifically for the Alzheimer patient. These are homes geared for the problems relating to those with dementia. They understand that Alzheimer patients are disoriented and tend to wander off if not attended to 24/7. Even if you do not want to put your family member into a home permanently, a temporary stay is important to give the carer some time for themselves. It is so important to realise that the carer needs to take a break every now and then to ensure that they remain healthy so they can continue giving the care that is needed.
Some facilities offer day care where the patient can be dropped, perhaps one day a week and they will be showered, fed and stimulated, in order to give the carer a break. It is important to understand that the carer does not always want to get out of home in order to have a rest, they may simply want to spend a day alone at home catching up. In this case, day care is ideal.
The same facilities will care for the patient while the carer takes an annual holiday. Perhaps a visit to the grandchildren, or a trip with a friend – so essential for renewing one’s energy and enthusiasm for life. Living with someone who does not remember things from one minute to the next, who consistently shadows your every move or who has to be constantly watched in case they slip off and get lost, is very wearying, stressful and will ultimately take its toll on your health. Don’t let it happen to you.
YEI asked Jill to make a comment from her perspective, in closing:
Having met with many families dealing with dementia over the years, I see the huge toll that being a caregiver can take. It is so important that caregivers learn as much about this disease as possible. The person with dementia is doing the best they can with a brain that isn’t working properly and the only person who can change in this journey is you, the caregiver. Constantly arguing with your loved one is just going to make the process harder and we are not on this caregiver journey when we are 25 years old – we are usually closer to 75 years old and likely to have health issues of our own. Alzheimer’s disease is often called ‘the long goodbye’. I recall a man I met a few years ago who was a caregiver for his wife telling me – my wife died three years ago – we just haven’t had the funeral yet. I have learnt many lessons from caregivers over the years. The most important lesson is to ask for help and support, tell other family members what you are going through, and remember that you can’t do this alone
You will find the contact details for Alzheimer’s SA on their website: www.alzheimers.org.za or
you can phone their National office on (011) 792 2511 to get details for the office nearest you.
If this article was of interest to you, read:
Alzheimer’s – the ten warning signs – click here