Late last year, we started a “Community Spotlight” series to introduce our partners in the Little Rock Metro’s long term care network. It started with the “It Takes A Village'' statement about how imperative it is to have a collective group of like minded people, with diverse skills and professions, working together to provide services to our seniors who are growing infirm over time. Alzheimer’s Disease is a devastating progressive brain disease that destroys memories and thinking skills over time. It is the only top 10 death in our country without any known cure. The cost of care is staggering, both in terms of medical care and in terms of the physical and emotional toil it takes on family caregivers.
Doug and Cindy Orlicek Jones (Elder Law Practice) have devoted their professional lives to serving seniors and families of seniors in aspects of life care planning. In the course of their work, they identified a need for information and support of family members taking care of their loved ones. In 2018, they established Help Me Help Momma, a separate company to their law practice. They use various e-venues to provide information, online training and coaching to adult children of aging parents. Their research and experiences led them to develop the Alzheimer’s Survival Guide. They post weekly YouTube broadcasts to provide caregiver tips, produce and release HMHM Podcast and Blog, FaceBook Group, and have a daily e-newsletter on matters of interest to those providing or managing the care of a declining senior. All these resources are provided free of charge. They also produced a resource called the Alzheimer’s Survival Guide.
The Alzheimer's Survival Guide is for Family Caregivers who have made the decision to provide hands on care, assistance, and supervision to someone they love who has been diagnosed with Alzheimer’s disease. That is a huge commitment.
This Guide is a Roadmap to help Family Caregivers understand their Loved One’s life – their mental and physical condition, their fears of losing their identity and ability to do basic daily tasks for themselves. It guides the Caregiver so they can prepare for their future – what they will need to know and to do and most importantly to take care of themself. Without this devoted Caregiver, the Alzheimer’s patient would experience a much different quality of life. So the Caregiver must take care of themselves.
The Alzheimer’s Survival Guide is laid out along what they call the Four Journey Stops of caregiving.
At Journey Stop One. You're spending maybe one to three hours of focused attention on your Loved One. At Journey Stop One there are four Assessments for the Family Caregiver to complete. This will help them assess their Loved One’s abilities to perform daily tasks that they have performed since becoming an adult. There’s also an explanation about some basic legal documents that need to be in place.
Journey Stop Two. If you're a spouse caring for your Loved One with Alzheimer's, at Journey Stop Two you might be providing hands-on care for four to six hours, plus every time you turn around, they're trying to slip out the door. At this point, you really need to do things to make sure that your Loved One is going to be safe, like the home Assessment. That Assessment is three pages long because there are a lot of issues to look at - in each room of the home.
At this level, caregiving is becoming more difficult. Without proper care and attention, the caregiver might exhaust themselves and become unable to properly care for their loved one. The Guide includes recommendations for several different books to read and things to do for the caregiver.
At Journey Stop Two there are six Assessments to help the Caregiver in specific areas so they will be better prepared for what lies ahead.
Journey Stop Three. You can't leave your Loved One alone. Behaviors such as sleep disorders, nocturnal wandering, and proper toileting and other activities of daily living might become more prevalent.
If you are caring for a Loved One with Alzheimer’s you have to take care of yourself. In the Guide they also talk about what happens if something happens to you, first. You need to be prepared for what will happen to your Loved One. You need to put a plan together and be prepared for them to transition maybe to an assisted living or skilled facility if something does happen to you. So, it's all about taking care of you - the caregiver spouse and being prepared.
Journey Stop Four. The disease has advanced to the point where facility care is likely a necessity. Prepare for this by evaluating several facilities to find the best fit for your Loved One and for your family in advance of the potential need. Several facilities have waiting lists and might require advance planning.
If your Loved One does enter either an assisted living facility, a memory unit, or a long-term care facility, whether it’s a private or a big corporate facility, then your role shifts – the caregiver becomes the Advocate. As an Advocate, you may go to the care plan meeting and tell them what your spouse likes, what scares them, what calms them down, what may help them sleep. You need to have input into that initial Care Plan Meeting and then get a copy of the care plan and carry it with you and make sure it's being followed.
Cindy also speak to an additional Journey Stop - Five, Which follows when our loved one with Alzheimer’s Disease passes. This is the phase where we deal with grief.
If you want to subscribe to or receive further information on resources available through Help Me Help Momma or Elder Care Practice, email support@helpmehelpmomma.com or help.mom/cc.
Doug and Cindy, thank you for the passion with which you have pursued your mission. You are truly making a difference in our community and across the country.