November is National Family Caregivers Month and National Alzheimer’s Disease Awareness Month. To mark these events, the Alzheimer’s Association Michigan Chapter is recognizing a few of the more than 518,000 Michigan family members and friends serving as Alzheimer’s and dementia caregivers with a Caregiver Q&A.
Caregiver name: Michele Beresh
Loved one living with dementia: Arnold Beresh
Relationship to one another: Wife and husband
In what year was Arnold diagnosed with early-onset Alzheimer's? 2015 with early-onset dementia.
Can you tell us a little bit about your journey with the disease? At this point it’s been five years and I feel Arnie is doing well. There are some deficiencies; he sees them more than I do. He is always working to find a way to solve his problems, like having news feeds on his watch so he can be up to date with breaking news and participate in conversations. As with most people with dementia he has to work harder to do the things he used to do easily, such as putting together a TV stand or bookcase.
The diagnosis was very much a surprise — Arnie first said something because he couldn’t find his way back from a familiar location. Then the appointments and testing began. As with a lot of high-achieving people, he had already taken compensating steps and didn’t know it. For example, he was always quick to respond to someone’s request for something, but it became even more important to him. I later realized that it was so he didn’t forget to do it.
We have found ways to work around many challenges like sharing a calendar on our phones, which was one of the first suggestions from a friend that helped tremendously. At the time of Arnie’s diagnosis, I was working full-time and knowing each other’s agenda was especially helpful. I worked part-time after we sold the business to keep me from being such a helicopter wife and hovering over him every moment. In 2017 Arnie had triple bypass surgery and we determined that we needed to be closer to family so we moved back to Michigan.
Do you work outside the home? If so, where? If not, has dementia impacted your ability to do so? I do not work outside the home. In 2018 I was diagnosed with Stage IV Meta-static Breast Cancer so our plans have changed a bit.
What are some of the biggest challenges you face as a caregiver?
- Making sure that your partner has a clear diagnosis, treatment and is getting the best care.
- Being a good advocate and finding a doctor you can trust who has your best interest at heart.
- How to be a care partner and not a helicopter partner. The diagnosis is difficult for both parties.
- Fortunately Arnie was a saver, not a spender. Many caregivers face financial challenges.
- Finding the best routine that works for both of you and then being ready to find a new routine when that one doesn’t work anymore.
Has COVID-19 changed things for you and your loved one? COVID has been difficult for Arnie because he liked to go to the gym, get together with friends and family, and to meet in person with our social/support groups. For Arnie, Zoom meetings are difficult unless they are fully moderated so that everyone isn’t talking over the other person. Fortunately we are still safely at home and have ventured out in cautious ways.
We are very fortunate that Arnie is still living at home and doing many of the tasks he used to do at home like cooking, walking the dog, grocery shopping etc.
Due to my cancer diagnosis — he is the carepartner somedays.
What would you tell a family or future caregivers who are new to this journey?
- Find a good doctor, advocate for your partner, call the Alzheimer’s Association and ask for help.
- Tell family and friends about the diagnosis. It may be difficult because they may question you because they don’t see what you are seeing.
- Ask for help if you need it. Take care of yourself. And have backup plans. If the care partner gets sick—who will take care of your duties?
- Both the person with the diagnosis and the care partner should get help from a close trusted friend, clergy or mental health professional. There will be plenty of times that you have to dump that truck of emotional baggage.
- Also join a support group and try different groups if the first is not a good fit.
- Try some of the art programs or community engagement programs offered by the Alzheimer’s Association.
- You don’t have to do everything, but do not attempt to do this alone.
Any misconceptions you'd like to point out or advice you'd like to give? Not everyone gets the right diagnosis the first time. Make sure that the cause is not lack of vitamins, depression, etc. But, trust your gut and advocate for your partner.
When and why did you first connect with the Alzheimer's Association? We had been volunteer fundraisers for the organization for many years prior to Arnie’s diagnosis. This was something that we did for our community with our friends in Virginia.
How has the Alzheimer's Association helped? Knowing someone who understands what you are going through is only a phone call away is incredibly helpful. In Virginia, we had friends both inside and outside the Alzheimer’s community. Coming back to Michigan having a built-in group who knew what we were going through was extremely helpful. We joined support groups, got involved in advocacy and had a built in community.
Advocating for the Alzheimer’s Association also gives us a way to feel like we are fighting back against this disease.
Anything else you'd like to add? I know this seems like a very scary journey — and it can be. But, do not attempt to do it on your own. Get help from the Alzheimer’s Association. Get involved. Find what works for you and your partner. Art classes, art appreciation, social groups etc. Just realizing that someone has been down this path before you can be really helpful.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.