Adult couple holds hands as one hand disappears

Interview With Jena: My Honey's Diagnosis and Coping With Loss

Jena is a part of the AlzheimersDisease.net community and has first-hand experience with a spouse being diagnosed with early-onset Alzheimer's disease. She shares advice with others who find themselves in situations similar to hers.

This is Jena's story about her husband Neal's early-onset Alzheimer's diagnosis and how she has coped with the aftermath of great loss.

Getting diagnosed with early-onset Alzheimer's

It sounds like Neal was really tuned into his mind and body. Did he notice his early symptoms before anyone else? If you noticed any changes in the very beginning, what were they?

I began noticing that I had to remind Neal (Honey) of things several times. I would ask, and we both chalked it up to tax season, long hours, and 7 days a week for 4 and a half months! Then, in September 2014, he came to me very serious and emotional and said he thought something was wrong because he was forgetting things.

I took him to our general doctor, who checked him and asked questions, then told us he was normal. We knew he wasn't, so I called my nephew, a doctor, and asked him for a neurologist. His neighbor was one and excellent! We didn't want to wait 2 months to see him, so our nephew got us in the next week. Thank God.

Familial ties and a spouse's diagnosis

Neal's mother had Alzheimer's disease, and he talked about how he would one day get it too. Was any genetic testing done?

Honey's mom was diagnosed with Alzheimer's in her 70s, and we did not get a genetic test. Not sure why other than we just didn't want to know!

We have caregivers in our community taking care of or helping to support their parents, grandparents, friends, and spouses. Each relationship carries its own sense of devastation and grief. Can you share your feelings about learning that your spouse had Alzheimer's? What went through your mind, and how did you process it?

After his examination, there was lots of testing. It was determined that he did have dementia. I felt my world falling apart before my eyes. He always knew he'd get this horrible disease. He ignored it and hoped medications would give him time. I had to stay strong and slowly prepare to deal!

Coping with Honey's early-onset Alzheimer's

You've talked about the questions you didn't know that you didn't know and that you found "an angel who helped find a place for all of his needs." Can you talk about how you found this support service and what they helped you with?

Our support system was our large family and lots of close friends. I had tried a support group with my mother-in-law but found no help, just problems. This was a new disease and not a lot of information.

Our families were all very close, and without them, we would have been lost!

It has been more than a year since Neal passed. What has helped you cope?

Unfortunately, I learned 6 years before I lost my Honey that our only child, Ashley, was diagnosed with bone cancer. We lost her 6 months later. During our loss, I had to split my time with Honey in East Texas and my grandchildren in Denton, Texas.

They were 3 and 1. I was so depressed, sad, and overwhelmed! But I also was strong from the outside – I had to be. I did go on medication for depression, and I started writing in a journal. I had to get my feelings out, and I wanted our grands to know their mommy through my eyes and heart. I couldn't believe how I got better day by day, just writing.

Advice to other couples

What advice would you give to a caregiver or person just recently diagnosed with Alzheimer's? To someone who has recently lost their loved one?

I'd first tell them to get all their paperwork updated and signed before things get worse. Wills, power of attorney forms, living wills – all the legal stuff. Then talk about what they want to happen to them when things turn for the worse.

Honey didn’t want to talk about that part, but after being married to him for over 40 years I knew what to do. As far as what to do after your loss, we each handle loss in our own way.

Some need help, some just sit and be sad, and some can't be happy again. Life goes on, and you can choose how you go on. My choice was to write in my journals, talk about my life with Honey, and try to educate people about this horrible disease.

Is there anything else that you'd like to share?

What I want to share with everybody is to educate family, friends, and anyone who will listen about this disease. There are still things to learn, share and communicate with others! Mourn your loss in your way – only you know what that is – and in your time. Then, start living again for those who are still around you.

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