Hello, my name is David Myers and I am the primary caregiver for my wife, Cheryl. Cheryl was diagnosed with Alzheimer’s disease in 2012 after a couple of years of not knowing what was happening to her. The trouble with the diagnosis was that Cheryl was only 47, and dementia wasn’t even considered until things got really bad.
There are issues when your spouse can’t function alone and the family’s world is turned upside down. Cheryl was ok to live by herself for about 18 months after the diagnosis, but we lived in the country and I worked 30 minutes from where we lived. So we sold our dream home and moved to a smaller home in town where I could get to Cheryl quickly if need be.
I had ADT come in and install alarms if doors or windows were opened and they provided a camera so that I could watch to see what she was doing while I was at work. I didn’t realize the stress I was carrying until my mom offered to stay with Cheryl. My parents only live 40 minutes away and I start work at 6:30 a.m., so mom would come over on Sunday night and live with us. She took care of Cheryl during the day while I worked, and then stayed overnight so that she didn’t have to drive back to our house the next day. Mom did this for over a year until we were able to hire personal assistants to take care of Cheryl while I worked.
A long time ago, when our children were little (we have two – Kara who is married to Ryan and lives in Indianapolis and Kevin who lives in West Chester, Pennsylvania), we were told that raising a child takes a village. Being a caregiver takes a village as well. We have relied heavily on our church family who has provided over 400 meals, lots of visits and volunteer time to sit with Cheryl – allowing me to get some windshield therapy. (Windshield therapy = going for a motorcycle ride to enjoy the freedom of not having anyone needing you for an hour or two).
I would like to say that hiring the assistants solved all of our problems, but in my opinion, nobody could take care of Cheryl like I could. I struggled with allowing someone to come in and care for her, and it took several months for me to let someone else to care for her in ways that I couldn’t. I had no idea that I was a control freak, but the longer we are on this journey the more I realize that I want things a certain way, and I like to have things go my way. Things stopped going my way in July of 2012 when a nurse said to me: “I am so sorry for what you are about to go through”.
The nurse was trying to tell me that it was going to get worse before it got better (if it really ever does). You see, I married the woman of my dreams. Cheryl and I met at church camp where we both worked for the summer. Long story short, we fell in love and married after I graduated from college. We truly had the perfect marriage. You may be wondering why this is important… Well, I have had several people tell me that they probably wouldn’t be able to do what I do for her. I don’t understand this way of thinking because I made two promises the day I married her. I promised her that we would be together in sickness and in health until death do us part. When I made that promise, I meant it. I may have only been 22 years old, but I knew what it meant to make a promise – and that is what I am doing. The second promise I made was to a man that loved Cheryl more than a father could. He leaned into my ear in the receiving line and said: “you better take care of her.” I remember that day like it was yesterday, and I am doing everything I can to keep that promise to him.
I have done many things to keep Cheryl comfortable and happy through this journey we’re on together. If you told me before the kinds of things I’d have to do for her, I would have said I couldn’t do it. But I did do them, and I have overcome things that I would’ve struggled to do for anyone else. After 31 years, I truly believe that there is nothing I wouldn’t do for her.
For those people who are on the front end of the diagnosis, let me share a few things that I have learned both through my experiences and from others observations of our journey.
- Laughter truly is the best medicine. Find the things that make you smile because there will be several things that make you sad, angry, confused, emotional and lonely.
- People will always ask “How are you?” You will have about five seconds to determine if this is a generic question where “fine” will work or if they want to know how you are really doing. You need to be ready to answer people when they ask the question. If you are not prepared you might tell an executive about Cheryl’s bowel movements before you realize what you are saying because that is what is on your mind and end up sharing way too much.
- Friends will ask “what can we do for you?”, “what do you need?”, and “are you taking care of yourself?”
- I struggle with these questions. I am the one that takes care of my family, and now that I am on this journey. I have realized that I can’t do this on my own.
- Asking for help is a problem I have. I believe it is called pride. You know when this started happening; I truly believed I had so many tokens of help. Each time someone gave me help one of the tokens was taken out of the jar. Since I don’t know how long this journey is I was afraid I would run out of tokens. Guess what? We are in year six and there are still tokens in the jar and our church, friends and family are still asking these questions.
- I still struggle with asking for help, but there is a website that the Alzheimer’s Association provides called “Lotsa Helping Hands” that allows me to post things I need help with and it goes out to everyone who at one time or another has asked one of these questions. We named our page Cheryl’s Helping Hands.
- Everyone (including myself) wants to know what the prognosis is. This is the answer I seek every day. When I talk to others who have been on this journey or are on this journey now, I compare their story with mine and try and figure out just where Cheryl is and how much time we still have together. Hospice came in three months ago and her decline is more obvious now. Hospice has been awesome at taking some of the caring responsibility away and tracking her progression. They are the partner I was looking for during this journey. They can’t tell me what I want to know because no one can, but they are now on this journey with me and are helping me make the decisions that I was putting off because no one was holding me accountable.
- When will she stop knowing who you are? This is what everyone thinks about when they hear about Alzheimer’s. I was so afraid of the day when she would not know who I was. That day came and went so quickly, but people still ask. My answer has always been: “I don’t know if she knows me or not but she trusts me.” And I know that this is still true to this day because she allows me to do everything for her without any pushback.
- Crying is ok! Purging your emotions is better than keeping them inside.
- What will this do to you financially? I don’t know. I prepared for the worst and hoped for the best. There are not a lot of options for someone her age that has Alzheimer’s. It is extremely difficult because I have to work full time, but I have found help. Early on, I worried about the financials, now I worry how to say goodbye.
- Why Cheryl? Why Us? Why Me? I don’t know, but I have a feeling that I am supposed to take what I am learning and share with others. My Lord promises in 2 Corinthians 1:3-5 that He will come alongside us when we go through hard times, and before you know it, He brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.
I will close my story with the things I wish I knew about at the beginning of the Alzheimer’s journey:
- The medication will cause weight gain and does not cure Alzheimer’s. Nothing does.
- Tell people what is happening.
- The Alzheimer’s Association is a huge help.
- Get involved in a support group as soon as you can.
- Don’t keep it in; tell people what is going on.
- Be honest with yourself and your friends.
- This is not about you, but it affects you in every aspect.
- Your friends want to help but don’t know how. Allow them to help and think of ways to allow them to support you. You will need them.
- It is going to get worse.
- There is no cure. (Yet!)
- Find something you love to do and find time to do it.
- Most everybody has been touched by Alzheimer’s. Let them tell you their story.