Chronic Disease and The Sandwich Generation: Caring For A Parent With Alzheimer's
Alzheimer’s is a chronic disease that affects hundreds of thousands of people worldwide. In Ireland it is estimated that 38,000 people are affected by Alzheimer’s. Irish Health says “due to Ireland’s rapidly ageing population, that number is predicted to rise to 58,000 by 2021 and 104,000 by 2036.” A 2015 Alzheimer’s Society report in the UK found 850,000 people in the UK live with dementia.
Alzheimer’s and dementia do not just affect the person with the chronic illness. The friends and family of the person with dementia or Alzheimer’s can be deeply affected by the disease as well. For those women in the Sandwich Generation, Alzheimer’s can take a toll on both you and your parent. Coping with this stress and strain can be difficult. We spoke to one of our Jingas Carmen Xavier, 68, who is taking care of her mother Dinorah who is 88 years old.
Carmen and Dinorah’s Story…
The First Signs
Dinorah first presented with symptoms of Alzheimer’s when she was 74 years old. At first, she started to forget little things; where she left her purse, her clothes, she would forget to eat her lunch or dinner.
At this time in her life, Dinorah had a routine to be out and about 3 times a week. Soon, however, she started to forget her own address. A few weeks later she got lost completely. Ever since that day, 12 years ago, Carmen has decided to be the main caregiver for her mom. The decision to take on this role has completely changed Carmen’s routine.
A New Way of Living
Carmen decided the best way to care for her mother was to be close by, so she brought Dinorah to live with her.
In the beginning things were super tough. This was due to a number of things.
Firstly, Dinorah did not understand why she was forced to leave her home. Secondly, due to the illness, Dinorah started to be very aggressive towards Carmen. This aggression would start over little things like taking a shower, or going to bed. Lastly, financially speaking, all the medication that Dinorah was required to take heavily influenced Carmen’s expenses.
In the second year of taking care of her mom, Carmen researched alternative therapies that could improve Dinorah’s health. Carmen read about music therapy and decided to introduce her Mom to it. This was a good help because the music helped in calming down the nervous system, and kept Dinorah entertained for hours every day.
Carmen also found that other exercises like a jigsaw puzzle, arts and crafts, Jumbo Slide-Slot Bingo Cards, which fascinated her Mom in previous years, kept her Mom’s attention. These activities helped to keep the mind alive for both Carmen and Dinorah.
Caring for an aging parent with a chronic illness can damage the relationship between you, as you cope with their frustrations as well as your own.
But Carmen found a way to improve her relationship with her mother - love. “One day I noticed that my mother was very aggressive, nothing could calm her. I remembered I was crying because I was totally stressed with the situation, and started to hug her. Suddenly she started to calm down, and hug me back too. People with Alzheimer’s need loads of hugs and kisses to calm them down. “Since then, I’ve been able to improve my caring for her. Our relationship has also improved,” said Carmen, our Jinga.
As much as your parent needs your help and caring nature, on the other hand the primary caregiver, the Jinga, also needs lots of attention. It’s important for your own sake to take some time for yourself, and recharge.
It is not easy to take care of elderly people with Alzheimer’s, it’s ok to admit that. For Carmen a good way to release the stress was getting some exercise and doing yoga. “By exercising, I noticed that this was a great opportunity to take care of myself. Because all of my attention was concentrated on my mum, but I just realised that I also needed some extra care. Three times a week I go to the gym, and once a week I do a yoga class. Apart from that, I started to do some guided meditation before going to bed and that is helping me to wind down after a stressful day!”
Since Carmen has started to focus on herself, she has improved her own quality of life, as well as her Moms. Her caring for her mom improved, and now she feels so much happier than in the early days of caring for her Mom. “Alzheimer’s is a chronic disease that you need to manage. At the beginning it is hard but every family can try to find tools, and therapies in order to not suffer because of the disease. I found mine!’
Find Your Coping Mechanism
No two people are alike, what Carmen found helpful might not work for you. However, her message is clear: you can only care for your aging parent(s) by caring for yourself first. In the Sandwich Generation you may feel as though you are being pulled in two different directions, however it is vital that you put yourself first in some situations. Jinga Life can help you in organising and keeping track of your and your family’s health. You can sign up here, it’s one less thing to worry about!