“We have people who are struggling all over the place and it is time to quit acting like this is a rare disease and only a few families are giving up their lives, this is everywhere….it’s affecting everyone in every class level, in every age level, and every gender, all demographics across the board.”
The video delves into the lives of those caring for loved ones suffering from Alzheimer’s. It talks about the various facets of the disease and the effect it can have on a person’s behavior and personality. Several caregivers share their experiences and how they have learned to cope with it over time.
The initial diagnosis (2: 17 – 5: 41)
“Dementia is the umbrella term that means cognitive impairment. There are many different diseases that can cause dementia. Alzheimer’s disease is the most common making up about 65 to 70 percent of all the dementias.”
The initial testing can be scary but the information obtained from joining a support group is immense. To tackle a disease like Alzheimer’s, it helps for a caregiver to learn more about it. Studying and reading up on the condition can help a caregiver gain a better understanding.
The good and bad days and coping techniques (9: 57 – 17: 05)
“Some days are clear and then I will get this…where suddenly everything is just jumbled up.”
Incorporating exercise as part of the daily routine is essential and it could in varied forms such as say gardening and taking the dog for a walk. The attempt is to make the best out of each day and not let despair take over. There might be certain times during the day when the loved one might function relatively better and the caregiver must utilize that. It could be hard for the loved one to stay cooped up within the house all day and spending time in the sun could do wonders. It helps to focus on the things that they still enjoy doing so engage them in activities such as listening to music or painting or doing a puzzle together.
The caregiver’s struggle (17: 11 – 30: 00)
“They show you on TV that the person leaves their keys in the freezer that is nothing compared to what we have to manage….the unpredictable nature that comes and goes.”
It can be very hard to communicate with an Alzheimer’s patient. It requires a lot of patience. The caregiver must seek support from the doctor. Well-wishers should refrain from advising unless a caregiver asks for it. The challenge that a caregiver undergoes cannot be understood by everyone. It can be mentally taxing for a caregiver as the burden of the entire household rests on their shoulders, not to mention that they are responsible for another person’s well-being. Having family chip in can be a relief. The change in personality that the patient undergoes can be difficult for a caregiver to come to terms with. The unpredictability of it all can rattle a caregiver.
Loss of hope and survival mechanisms (30:05 – 40:48)
“We all have negative thoughts about what we’re going through and the sooner we can stop feeling those terrible thoughts the better we can start restoring our energy. So meditation is very powerful…..acupuncture, cranial-sacral therapy, aromatherapy will help clear the negativity.”
Caregivers must open up to others as it is easy to feel bitter and lonely. A caregiver barely gets any time for themselves or for other people in their life which can cause rifts. Every day presents a new challenge and it can hurt to see the loved one’s condition continue to deteriorate. In the midst of all of this, a caregiver might find it impossible to take care of their health. However, that is a must as the caregiver should not find themselves in a position where they are unable to take care of the loved one. Taking breaks in between where the extended family helps out can ease the stress on a caregiver.
Assisted Living Facility and Finances (44:06 – 48: 38)
“Just trying to figure out where all that money was coming from and how we were going to do it was the big push for me…I didn’t know how were we going to pay it.”
Sending the loved one to an assisted living facility poses its own set of problems. The finances can take a toll on a caregiver. The loved one might not readily agree to go to an assisted living facility and might throw a tantrum or put their foot down making it even more difficult for the caregiver.
The final stage (49:25 – 55:41)
“The greatest gift you can give them is to let them know that they’re cared for.”
It can be very hard to see the loved one slip away and often a caregiver recollects happier memories from when they had been well. The caregiver struggles to come to terms with the new reality. Although the caregiver might have expected the result, it can still take a toll on them.
If you can identify with this story, please share it with others who care for someone and help them share too. The feeling of understanding, not being alone and access to support is what keeps caregivers going.
Sharing your story helps understand yourself — feelings, passions, hopes. It lightens the load and offers relief from loneliness, anxiety, anger or guilt. Our experiences and hopes can benefit others – to know that the challenges are the same, learn new ways to cope and care… they aren’t alone but part of a team.
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Source: VPM News
This video has been curated by Caregiver Saathi. All Rights are Reserved with the original publisher and creators.