More often than not, many care givers are thrust into the position of caring for an elderly parent, partner or loved one without fair warning. Maybe it was a bad fall, a sudden bout of illness or a turn for the worse for an Alzheimer’s patient. Either way, full-time care giving and the financial strain is just not something you had / have prepared for.
As a care giver you may feel frustrated, lost and overwhelmed due to the toll that Alzheimer’s and dementia can have on your loved ones.
Parkinson’s disease (PD) is a neurological condition affecting millions of people across South Africa. Typically characterised by shaky hands, an unsteady walk and rigid limbs, PD is a progressive disease which can worsen over time. Aside from the problems associated with movement, PD can produce lesser-known neurological issues, such as Parkinson’s disease psychosis.
As a caregiver do you ever feel like you are being taken advantage of by a loved one or care receiver suffering from dementia? Perhaps you feel like their behaviour is manipulative because it’s just so out-of-character from the loved one or person you once knew?
Whether we like it or not, the world is changing – daily, with new and improved forms of innovation released to the public more frequently than ever before.
This is an inspiring story of dementia patients finding a way back to themselves through the wonder of music therapy and its stimulation of memories, buried deep in the brain.
2016 saw Edward Hardy, an advanced stage dementia sufferer of Somerset in the United Kingdom, reunited with his former jazz band mates after a 25 year hiatus.
Staff member of Somerset’s Mellifont Abbey Care Home and fellow musician, Sam Kinsella, reintroduced the wonders of music therapy to Edward after realising they shared a mutual love for music. As a former jazz pianist with over 30 years performing in his own jazz band, Edward was offered the chance by Sam to sit down at a piano and strike a chord.
A truly amazing story:
‘I remember the day Ed started playing again. He hesitated for about 30 seconds and then started playing some amazing tracks to a ridiculous standard. It's really amazing because even though he's got dementia - you can name a tune and he can just play it’, said Sam Kinsella.
Shortly after this, Sam set out on a mission to bring together a jazz band of sorts, allowing Ed the opportunity to once again perform to a live audience. An online ad was placed searching for jazz band mates, with over 80 musicians offering their talent.
Amazingly, Ed’s former band mates saw the ad and came forward to perform with him – the first time in over 20 years!
"He hadn’t played with the band for the last 20 or 30 years and couldn't really comprehend it until they actually came together but when they started playing together and talking about the old times - that's when it started coming back to him." – Sam Kinsella.
The story of Edward Hardy, an advanced-stage, 93-year old dementia patient just goes to show the true power of music and how it not only enriches the human spirit, but also the human brain.
Music and dementia
Over the past decade, music therapy has gradually developed into a legitimate form of therapy for dementia patients across the globe, with dramatic effect.
The power of music, whether it’s jazz, 60’s soul, operatic arias or bible hymns has proven to aid dramatically in memory recall and improve quality of life for many dementia patients.
Additionally, the power of singing has also been found to unlock memories and kick start grey matter. It would seem that this form of therapy is able to reach deep into the brain in ways other forms of communication cannot.
This therapy has proven that even if dementia sufferers can no longer communicate, they still have the faculty to reach down into themselves and draw out a small piece of who they once were through singing, whistling, clapping, dancing and the playing of an instrument.
Music therapy has become a proven avenue of access to the part of the brain which remains undamaged by the ravages of dementia, bringing hope and increased quality of life for all dementia patients, no matter their stage of the disease.
If you have a loved one who is suffering from dementia, but is determined to live with you, or in their own home, you may need to make a few adjustments to the living space.
One of the most vital organs to look after as you age is your brain. Research has shown that there is a direct link between certain compounds found in foods and a decreased rate of the onset of certain mental diseases, such as Alzheimer’s and dementia.
As a child, grandchild, spouse or sibling of an aging loved one, the day is bound to come when the house they have lived in for many years needs to be sold. This could be for any number of reasons, but the most common is generally when they need to be moved into a care facility or retirement community.
Before this day comes, there will be so much to organise, including the packing and moving of their decades of belongings. To add to this there is a high emotional price tag attached to many of these items. Consequently, decluttering the lives of an aging loved one can be a highly sensitive task for all involved.
Here are a few simple steps to encourage aging loved ones to begin the decluttering process before a mountain of memories is left for family members to deal with!
Declutter with the S.T.U.F.F. method
The S.T.U.F.F. method of decluttering and untangling an aging loved one’s home stands for: Start, Trust, Understand, Focus and Finish.
Start as early on as you can with the decluttering, selling and cleaning process. Get the process underway by discussing it openly. Help your aging loved one to understand the great burden which will fall on other family members if they don’t begin the decluttering process early on. The key is to start small – such as throwing out used / expired medications, cosmetics, books, magazines and newspapers. Be patient in this process, rushing your loved ones can result in resistance and feelings of resentment.
This sensitive process is built on trust. In order to strengthen a parent or loved one’s trust, you need to remain patient and understanding throughout the process of letting sentimental items go. Once trust is established, your loved one will realise you have their best interest at heart, and the entire process will become much easier.
It’s important to understand that letting go of certain possessions will take some time. It has taken years to accumulate so much stuff, it may take just as long to let some of it go. Tell your loved one if you have fond memories or value a certain item, and they may give it to you. Many aging loved ones may find it easier to part with certain items if they know they will be well taken care of.
Divide up their home into sections and focus on one area at a time. It takes a lot of mental, emotional and physical effort to clear out a life-time’s worth of possessions, so the only way to avoid becoming overwhelmed is by focusing on one room at a time. It’s important to guide your loved one where needed, removing as much stress from the process as possible.
Once a certain room or area of the home is finished, it’s vital that you agree with your loved one on the next area to tackle. Agreeing on a new area to declutter will make it easier to return to the clear out process the next time you visit. Try and install confidence in them by letting them know you care about their feelings and will only declutter a certain area if they are 100% comfortable with it.
Depending on how much stuff your loved ones have, the process may take weeks, months or even years. While your goal is to eliminate clutter, it's important to preserve your relationship with a loved one. If you don't have the time or patience, find someone who does –be it a sibling or a professional, and get the process started as early as possible!
As a care giver of someone living with dementia, you most likely encounter a set of the same questions which tend to play on a loop, day in and day out. The repetition of questions and answers is largely dependent on the stage of Alzheimer’s or dementia.
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