Dementia Care Help Tips For Family Caregivers
"Our reality depends on what our biology is up to."
(Incognito- The secret lives of the brain)
It happened on a Sunday, exactly nine years ago. My grandfather went missing all of a sudden. He was with us during breakfast, but after that, he just disappeared. It was not typical of him to leave without saying goodbye or singing a folk song he loved so much. We approached the police station, but all our efforts were in vain.
He was nowhere to be found. After 13 tensed hours, we got a phone call from a stranger saying that he found grandpa lying on the footpath in a remote place at Yorkshire. Grandpa was crying and could not recall his address, phone number and sadly, even his name. Fortunately, the stranger got my number from the diary grandpa used to carry and informed us at the right time.
The next day I asked my grandpa to sing his favourite song to loosen his mind from the stress caused the other day. When he said "hmm", he sounded uncharacteristically slurred. Then he began to cry. He could not recall anything that happened after his childhood and didn't recognize any of us. We were all so sad to hear from the doctor that grandpa had Alzheimer's disease. But the doctor motivated us by saying that it's not the end. It was only the beginning of a sweet caregiving journey.
CARING FOR THE NEEDY - THINGS TO KEEP IN MIND
Caring for someone with Alzheimer's disease or any dementia is not a piece of cake. It can be a long, tiring, stressful and intensely emotional journey. But that should not stop you from going forward because in this journey, you are not alone. It is said that more than 16 million people are caring for people with dementia in the United States itself. And there are many millions more around the world. Like Mother Theresa said in 'A Gift for God' (1975),"We feel that what we are doing is just a drop in the ocean.
But if that drop was not in the ocean, I think the ocean would be less because of that missing drop. A small act can create a big result. I can't entirely agree with the big way of doing things."As Alzheimer's disease progresses differently in different people, the caring experience too can vary widely from person to person. This makes the caring experience even more challenging. Unfortunately, there is currently no cure for Alzheimer's or dementia. More than the limited medical treatment available for the symptoms, the caring you provide can bring positive changes in the lives of the patients.
Becoming a caretaker
So if your mind is not ready 100% to assist and care the Alzheimer's patients, it's not even worth a try. This is the first thing to keep in mind before you venture into becoming a caretaker. If you can give a 100%, it can change the life of many who have dementia or Alzheimer's. The person with dementia will sometimes behave in alarming and upsetting ways. As the disease advances, their needs and your responsibility will increase. Prepare to be disappointed by the patients as they might not be able to appreciate your hard work.
Caring the dementia patients is almost a thankless act. It should feel like Sun Myung Moon said, "give love and forget that you gave it". The caregiving experience can even be exhausting and all-consuming, but the ability to heal wounded minds is a remarkable gift. If you are gifted with this quality, you should also ensure that it reaches the right hands.
As you watch a person's cognitive, functional, emotional abilities and skills diminish over some time, it is easy for you to feel drained by it. This could lead you to neglect your health and wellbeing. The burden of caregiving can bring serious health issues into your life. It is not uncommon for the caregivers to experience depression, loneliness and exhaustion at times. But if this kind of stress and burnout make frequent visits in your life, it can put you at an increased risk for serious health problems like anxiety disorders or even chronic depression. The caregiving days may probably feel like a series of grief experiences of watching your loved ones' memories erode.
So it's unhealthy to neglect the exhaustion your mind and body feels. At such moments, seeking physical help or mental support from others is not a luxury but a crucial necessity. Some specific strategies and techniques can help and guide you in your caregiving journey.
Researchers say that the best way to get a mental lift is to bend your body backwards. Different yoga postures like forwarding bends, backbends and standing poses were evaluated, and it was found that bending over backwards can improve your mental situation. So caregivers of Alzheimer's and dementia patients should never forget to enrol at a local yoga class. Yoga is the best way to raise your spirits.
ADVANTAGES AND DISADVANTAGES OF CAREGIVING
Advantages: First of all, you will lose nothing by spending some time loving and taking care of someone. It will only help you deepen the bond that you share with that person. Happiness is not something that you should keep to yourself; it should reflect on the faces of your loved ones in the form of genuine smiles.
This is the most significant advantage of healing someone; you become the source of their happiness. Caregiving experience can also help you develop personal skills like problem-solving. It can also boost your confidence level. Through support groups, you will be able to form new relationships and contacts. Above all, you might also receive unexpected rewards for your service. Goodness is never unnoticed; it is always returned through unexpected channels.
Disadvantages: The only disadvantage is the exhaustion you feel at the beginning of the caregiving journey. But you will come to terms with it eventually. Some might also experience a financial crisis. You can seek the help of support groups that assist patient's families financially.
POINTS TO REMEMBER BEFORE STARTING THE CAREGIVING JOURNEY
POINT 1.PREPARING THE GROUND FOR CAREGIVING
The first and foremost thing to do is to prepare your mind for future challenges. Unlike other diseases, Alzheimer's demands 24-hour care. It can be all-consuming and frustrating. Once you are all set with your personal needs, the second thing to do is learn about the person you will be taking care of.
You should be well aware of the disease symptoms and their needs. Suppose you are taking care of someone who is not family. In that case, it is essential to discuss the legal and, if needed, financial arrangements, especially if the caregiving is a long term service. In the early stages of Alzheimer's, it will be easier for you to deal with the patients. But as the disease progresses, it can turn very frustrating. So you should also take care of your mental health. During this stage of caregiving, you should be aware of three things:
Who makes the health care and financial decisions of the patient?
If the patient is healthy enough to make decisions and receives good support from family, you can consult an attorney to discuss matters related to finance and caregiving options. If not, you may need to apply for guardianship.
How will be the care needs met?
Communication with the patient's family and other support groups is essential since caregiving is such a big commitment.
If the patient lives far away from family or support groups, they become your sole responsibility. You have to make sure that all needs related to healthcare are met on time.
POINT 2: SUPPORTING YOUR-SELF
The caregiver can get support from mainly three sources: In-home help, adult daycares or nursing homes and support groups. Although these supports are temporary, it can help you enjoy your personal life. The most important support comes from you.
To create a balance between your personal life and caregiving, a skill for meticulous planning is essential. Your health care plan should include:
Ask for support and help if needed
Develop new caregiving skills every day
Make new friendships at support groups.
Try to stay healthy(both mentally and physically).
Talk to a therapist or friend to de-stress
Practice yoga or any other relaxation technique
Listen to music. (Music is the most natural way of dealing with mood swings)
Encourage your talents like singing or dancing.
Read and develop knowledge regarding dementia
Deepen the bond between you and the person you are taking care of.
POINT 3: COMMUNICATION
Some of the initial changes in the person with dementia or Alzheimer's are mostly associated with communication skills. When there is trouble finding words, they begin to use more hand gestures. The confusion caused by the brain and senses can sometimes lead to sudden outbursts, typical among people with dementia.
During this stage of caregiving, there are certain things you need to keep in mind:
Hide your frustration from the patient
Try to empathize with them
Never be angry with them
Be patient and calm
Make your instructions short, simple and clear
Be kind to them.
Use positive affirmations to lift their mood
Do not force them to recall past events
Do not use a harsh voice and speak slowly
When asking questions, use close-ended ones
If they don't understand what you say, don't hesitate to repeat it again and again.
Keep a happy face.
Do not ignore them when there are visitors at home.
Do not talk to them about their disease.
Do not use "baby talk" or sarcastic comments in your conversation with them.
POINT 4: DEVELOP A CAREGIVING ROUTINE
Create a structure for each day according to the needs of the patient. Keeping a timetable and to-do lists can come in handy. Discuss daily routine with the person whom you are taking care of. Allow them to involve in activities which they are capable of doing. For example, small activities like playing kid's puzzles, arranging clothes in a wardrobe or watering plants. But keep monitoring them while encouraging and appreciating what they did. Assist them in keeping up with their daily routine.
Never force them to do anything, but gently ask them to follow the routine. Associating activities with the right time can help people with dementia orientate themselves. At least once in a while, you have to plan activities that that can help them socialize with other people. These activities should always be associated with the patient's interests. For example, if they are interested in painting, take them to a painting exhibition. But never take them to a crowded place since that might disrupt their mental peace. Activities that can stimulate them are highly recommended.
I still remember my grandfather singing his favourite folk song during his final days. He didn't recognize his family, but the song lines always cheered him up despite his mental confusions and grief. You can allow them to play with their pets too. If it is big dogs, don't forget to keep an eye on them since even small playful bites can tamper the happy mood of dementia patients. If guided by the caretaker properly, gardening, painting, singing, telling stories, dancing, playing with pets or children can all improve the mental situation of the patient.
Outdoor group activities
Outdoor group activities in adult care centres and support groups are also helpful. If would help them socialize easily. Do not forget to plan visitors according to the time convenient to the patient. As they cannot handle overwhelming emotions, ask the visitors to deal with the patient calmly.
POINT 5: DEALING WITH MOOD SWINGS
Mood swings and problem behaviours are the two significant challenges in taking care of a dementia patient. As the disease progresses, the frustration increases. Troubling behaviours begin to appear in life. They might even turn aggressive, but it is your responsibility to calm them. Distract them by reminding them of the things they like the most. These mood swings are usually created by the patient's inability to deal with stress. So keeping them motivated is an essential thing to do.
POINT 6: KEEP A DIARY TO RECORD PROGRESS
Behind every good human, there is a past of struggle, compassion, pain and love. Caring for the needy is the most divine act a person can do in their life. Rewarded or unrewarded, memories related to caregiving will give you a sense of satisfaction. No material comforts in this world can provide you with that. A diary of caregiving is a memorial of your goodness. It reminds you of the progress you made in the lives of people. It also helps you analyze the improvement you made in your own life. You will become more mature and confident after spending time with dementia patients
HELPING A DEMENTIA CAREGIVER
If you know someone who takes care of dementia patients, it is essential to offer all the help and support you can provide them. More than physical or financial support, what they need is mental support. There are certain things you can do for them:
Be a consistent listener
Appreciate their goodness
Offer them all the help you can provide
Help them de-stress.
Ask them to take part in social events during their free time
Assist them in caregiving
What makes a life special is not what you gain but what you give. There is nothing happier than making others happy, especially the disadvantaged people. Normal people can fake smiles. If you want to see a genuine smile, approach a child or a dementia patient. It is as serene as a morning dew drop which reflects the sunlight leaking from wet clouds. If you want to learn to smile like that, be a caregiver.
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