Guest Blog: "Please, Let's Talk Before It's Too Late..."

"Please, Let's Talk Before It's Too Late..."

by Patti Barr Hagadorn, Guest Blogger and Don Drake, Connelly Law Offices, Ltd.

Patti Barr Hagadorn

As we enter the so-called "dog days of summer", we want to thank Patti Barr Hagadorn, who was diagnosed with Early Onset Dementia (EOD) a few years ago, for being a major contributor to the Connelly Law Senior Issues blog. She is a friend and supporter of Connelly Law Offices and the work we do here - not only for our elder law services but also for the support and advocacy that Attorney Connelly and his staff give to those with Alzheimer's and other forms of dementia and those organizations and individuals who work with them.

Patti, who we first met in 2019, was writing a column for the Fort Wayne Sentinel, a well-known Indiana newspaper in America's Heartland, and used that column to document her descent into the mysterious world of dementia. She continues to document that descent here in our blog with the hope that it helps others understand what someone with dementia experiences and the effects upon those that love them. With that, we present Patti's latest blog, "Please, Let's Talk Before It's Too Late...".

Patti's Blog

Webster defines Fear as a noun, a distressing emotion, anxiety, or concern; as a verb, something unpleasant may happen; a feeling of awe towards God. At our home, the definition is, “I’m sorry, sir, but your wife is in the early stages of dementia.”

I’m an elderly lady who has had several head injuries over the years. The worst injury by far was an automobile accident that left me in a coma for just shy of a week. A drunk driver ran the red light at the corner of Pontiac and Clinton and left me with a seizure disorder and the diagnosis of dementia.

When I started writing about this ordeal, I searched my mind for humor in anything I could! As of late, I am struggling hard now to find anything humorous at all.

Patti and her husband, Jim

My daughters Jamie and Amy Jo are trying to be kind and understanding, but when my new normal is going to bed at 3 p.m. and getting up at midnight to start my day, it’s a little unsettling for family plans.

My husband of nearly 45 years, Jim, tries to be understanding as well, but I see his face as he struggles when I’m having a horrible day. My bad days are when I cannot think of objects, so everything becomes a thingamajig or a whatchamacallit. I struggle with Sundowners Syndrome, too. This means that I need to be in familiar surroundings or in bed before the sun goes down. If I’m not near my home I have a complete meltdown, my husband says.

I cry, I say things that should never be said to someone that you love, but the words just come, and I don’t know how to stop them. I believe that I have hurt my husband’s feelings many times over the years since I was diagnosed, but he rallies around me and tries to do the best he can to accommodate my weird hours.

I have been trying to engage my family in talking about nursing homes. I know in my mind that this is a reality. I know that this discussion needs to happen between Jamie, Amy, my husband Jim, and my sweet son-in-law Christopher. Whenever I try to bring this subject to the forefront, my family shuts me down. All I get from Jim is, “I can’t do that to you, Patti. I will take care of you as long as I can.”

A discussion that must occur

Therein lies the problem when he says, “I will take care of you as long as I can.” There is going to be a day that he’s going to have to say to himself, “I need to put my wife into a nursing home for her safety and for the safety of my family. I don’t know why he struggles with talking to me about this. I believe we need to talk about it, do tours of nursing homes and find out what our options are financially. My family doesn’t see it that way.

So, I’m left to my own devices in what I believe will happen when that time comes. It’s frightening. It’s unsettling. And it’s a scary thing that I’m facing right now!

I adore my family, and this includes my sisters and brothers as well. I see them trying to deal with me and it’s hard for them to understand what I’m going through. One particular time that sticks out in my mind is when we had a family outing at a local restaurant. It was close to the time that I needed to be near my home, and we hadn’t even ordered our food yet. I dropped some butter on the floor and had a complete meltdown. I embarrassed my family so much. One of my family members said, “Good grief, she’s crying now.” It hurt me to the quick. But all I could do was sit there and cry.

I have a little notebook that I carry at all times and write down things that I might want to write about at a later date, and I picked the restaurant incident to focus on today. I feel bad for doing this. If I could control it, I would. My friends bend over backward to accommodate my needs. And it’s hurtful that they must do so.

Sundowners Syndrome is difficult to manage

I have another friend who believes that this disease was brought on by my childhood sins. She believes that I should pray about it, leave it in God’s lap and I will be healed! I have prayed and prayed and for whatever reason God has not chosen to heal me yet. I stepped away from that friendship for a while because all she would do would be to belittle me on how I am not cured – and the fact that I’m not trying hard enough "in my prayers."

There are some days when I just want to curl up in a ball and stay in bed. But I get up each day and I find joy in painting my pictures. I find joy in my family. And I find joy in cooking with my husband. Although I do think he stays in there with me because he’s afraid I’m going to burn something. LOL.

I hope that if you have someone in this situation in your family you sit down with them after their diagnosis and set the parameters of where and when this person would need more care than they could get at home. Don’t just leave them to their own devices in their mind. They deserve to know when and exactly why you will be sheltering them in a nursing home.

I am hoping by writing this that it will open a conversation in my family, and we can figure something out together before I can no longer figure things out on my own. I am grateful to God that he allowed me to write just one more column.