In 2021, Oakwood Creative Care announced plans for the opening of the Dementia Hub, the newest initiative toward sparking joy for older persons living with dementia and their care partners. The first of its kind in the state of Arizona, the Dementia Hub is a wrap-around and all-inclusive care model designed to create positive waves of change in the lives of families, caregivers, and seniors living with Alzheimer’s disease or related dementia. As a core piece of the Dementia Hub’s system of creative and innovative support, the COPE program offers families and care partners evidence-based strategies to address dementia-specific challenges at home. Led by Oakwood’s COPE trained Occupational Therapist and Physician Assistant, the COPE program focuses on incorporating practical management solutions for the present and developing new plans for the future.
Having experienced first-hand the enhancement and envisionment of life post-diagnosis, care partner Dan reflects in an interview on the support he and his wife received after they enrolled in the Dementia Hub’s COPE program. Here is their story…
Life Before An Alzheimer’s Diagnosis
Life was pretty great before Dan’s wife, Becky, was diagnosed with Alzheimer’s disease. They had both recently retired and were looking forward to spending their time at home and enjoying each other’s company, while also making plans to travel. After living in a small town, Dan and Becky had dreamed of visiting different countries, stopping by to see family who lived out-of-state, and even visiting some of the places they had once been to separately but wished to experience together as a couple.
Their retirement experience was off to a great start, and Dan says they enjoyed living at home, listening to music, and sharing great meals together. In looking forward to the future, Dan says they simply envisioned spending their time together – growing old and enjoying all the things they had been doing together for most of their married life.
Then, Dementia Changed All Of Their Plans
Following their retirement, Becky began experiencing some issues with her memory, which quickly set all of their life plans on a new trajectory. When they began to notice more of these new changes, Dan and Becky sought help to see exactly what was happening. It was then that Becky was diagnosed with dementia, and their new path slowly began to unfold.
Becky was still in a state where she could function pretty well and even drive a little. So, we didn’t really go looking for any help at that time. It wasn’t until a full year later, when she started exhibiting some out-of-character personality traits, that we started looking for help.
Upon discovering Oakwood Creative Care, Dan and Becky decided to visit the Dementia Hub’s Memory Cafe, a free class where family care partners and persons living with memory impairment can come to experience an Engagement Activity or Care Partner Support Group. Dan says that, at that time, Becky was not interested in participating in the class; however, they did sign up for Oakwood’s mailing list, through which they later began to learn more about the Dementia Hub’s COPE program.
Dan Found Care Partner Support Within The COPE Program
Dan says that part of the appeal to the COPE program was gaining new information about dementia and understanding why his wife was acting the way she was. Monika, Oakwood Creative Care’s COPE-trained Occupational Therapist and Dementia Hub Clinic Director, streamlined Dan and Becky’s experience through the COPE program, covering everything from introducing stimulating activities to enhancing safety within their home.
“Stimulation is what I was looking for when we signed up for COPE. She was pacing a lot, and it seemed like she didn’t have a lot of meaning in her life. So, I was looking for some activities that would stimulate her mind… so she could focus on something and not feel so restless and bored.
Monika was very thorough in our COPE sessions. Oakwood has a set program they follow, and everything is covered, including the environment, the caregiver, and the patient themselves.
Plus, Monika would come up with all kinds of different ideas that she had on her own just from her past experiences.”
The COPE Program Can Change The Lives Of Older Adults With Dementia AND Their Care Partners
At the start of their COPE journey, Dan says he was looking for something that would mostly focus on his wife. But, what Dan says he came out of the experience with was something much more tangible for himself.
I think COPE is an amazing eye-opener for a caregiver. I am able to handle my emotions better and the way Becky acts or behaves – all in a way that I may not have gotten to without COPE (or may have gotten there, but it would have taken a long time). I thought it was a wonderful experience where I could get to the point where I could be willing to try different things, whether they worked or not. Some things didn’t work in the beginning, but they work now.
The COPE program has been something that I think everyone should experience, and I wish I would have done it earlier on in the diagnosis because then I would have been more prepared for what is going on now.
How The COPE Program Helped Dan Load Up His Tool Kit
With Monika’s help, Dan was able to use his experience within the COPE program to reset the foundation for himself and his wife. Life since Becky’s diagnosis has been different compared to the start of their retirement, but Dan now feels comfortable and confident with his role as his wife’s care partner thanks to some of the tools he gained during the program.
Reflecting on past COPE sessions, Dan adds that the greatest impact of being a part of the Dementia Hub’s COPE program was mainly finding an attitude of being willing to open himself up to different ideas. Dan says that he knows that routines are important for dementia patients, but there are times when he thinks it is good to break out of his own personal routine so he can open his mind and find something that can help Becky a little more than what he was initially doing.
“I had thought I had the safety of our home pretty well covered, but Monika pointed out some things that were important. There were things I overlooked or didn’t realize were unsafe, so focusing on safety was a big help from COPE. Plus, I now have ideas I could continue to recycle, like ones that maybe didn’t work in the beginning but might later on. I have those in a tool kit if I need them or want to try them again.
Mostly, what has helped Becky and me is learning about myself – how I need to care for myself, but also not focus so much on myself that I am not putting my wife number one. Everyone thinks that that is what you do automatically, but when changes come so rapidly, we have a tendency to fall back into survival instincts. COPE has helped me take care of myself and have respite, but I also know that I can’t fall into this rabbit hole of self-pity to where I can’t care for my partner. That attitude has really made a change in how I take care of my wife.”
Dan’s Final Words Of Advice For Caregivers On The Same Journey…
Dementia is different for every person, and no two experiences are hardly ever the same. Unfortunately, watching someone you love change with the progression of their disease and move further away from the person you once knew can make the whole experience more heartbreaking and difficult to navigate. When asked what advice he had for other caregivers who are just beginning their journey after a new diagnosis, Dan had these words of encouragement to offer:
My wife, because she was still able to make decisions at the time of her diagnosis, rejected the truth completely. Because of that, I didn’t look more deeply into what Alzheimer’s disease was. So with that, I must say, learn everything that you can – even if you think it might create a quarrel with your loved one, so you can prepare yourself.
You’re just not ready for what comes your way emotionally. Your partner changes so erratically. Not overnight, but certainly, over a period of weeks, you find yourself dumbfounded and wound up in your emotions on what is going on between you and your loved one that it’s really difficult to focus on, ‘OK, what can I do?’ That’s why it is so important to have help – from family, Oakwood, COPE, and other agencies like the Area Agency on Aging that can reach out and want to help you.
Without faith in God, I would not be able to do this – absolutely not. God has placed my family, COPE, and the Area Agency on Aging in a position to help me. For others, it’s just a matter of if you are willing to look at these things and say, “These things that are coming my way are things that are going to make my life easier and hopefully a little more meaningful for a little while longer.”
Did You Know?
Oakwood Creative Care is bringing back the JOY in aging! We believe a diagnosis should not have to define your life. Instead, we have devoted our mission to reigniting hope for caregivers and older adults with Alzheimer’s, dementia, and other age-related challenges. Click the button below to learn more about how we do this through our research-based, cutting-edge, creative care model found at each of our Day Clubs.