No Place Like Home

The saying is that there is no place like home. Home is a haven where we can kick off our shoes, remove our make-up, and get comfy under a blanket on the couch.

But what if you never felt at home, always longed for that security, and couldn’t ever find it? That is how it is for most people with Alzheimer’s disease.

My husband, Marshall, is in advanced stages of Alzheimer’s. He’s had it at least 12 years. I cared for him myself for 10. He now resides in an assisted living home for memory care.

Every day he asks to come home. This would break my heart if I didn’t know there is more to what he is saying. I can no longer handle him. Caring for him nearly cost me my life. The round-the-clock responsibilities and stress resulted in numerous health conditions for me, some of which are permanent.

Marshall needs a team of people working together. I now believe I’m an important part of that team.

When I pick him up, I tell him we will stay out all day if he wants. Initially, he is happy about that, but after only an hour or two at the most, he tells me he has to go back. He has an important meeting, or his friends are waiting for him. If a restaurant is too noisy, he puts his head down toward the end of the meal. He needs to shut out the over-stimulating outside world. It is too much for him to process.

I’ve found from speaking to groups of caregivers that this is common even when a person with Alzheimer’s is in their own house. They may be where they’ve lived for 40 years and still ask to go home. Nothing looks familiar anymore, no matter where they are. As they lose their memories, everything is new and different every minute of the day. And when I look back, I remember Marshall asking to go home when we still lived together. He would think we were at a hotel or someone else’s house.

I’m learning how to understand him and what he truly is saying. When he asks to come home, he’s really asking to be with me. I’m “home.” With little ability to communicate, he repeatedly tells me how much he loves and needs me. As long as he continues to recognize me, or at least our emotional connection, he wants to be wherever I am.

Marshall’s ultimate choice would be for me to live in the memory care home with him. He’s asked me several times if we could do this. It is his dream—and my fear.

(For more information on loving and caring for someone with Alzheimer’s disease, see my book, Navigating Alzheimer’s.)

©2016, Mary K. Doyle

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2 comments

  1. Penny Conklin · · Reply

    Thanks for sharing, Mary, and I so know what you are going through. My mom died May 31st of 2015 and before we stepped in 6 years ago and told my dad he needed to put her in a home he suffered a heart attack from the combination of stress and heart disease. I remember my dad calling me and telling me mom wondered when he was taking her home. In the beginning he tried to explain to her they were home bur that only made things worse.

    After much investigating by me, I learned you don’t argue with them so I started telling him to take her for a drive and go back home and 99% of the time that worked.

    I learned so much by reading The 36 Hour Day. My mom was never much of a loving person but when I gave her the very first doll at her first home, I saw a change in her. She had someone to care for, some to talk to and someone to keep her company. She carried that doll everywhere and I was not the least bit ashamed when I took her out and the doll went with us. In fact, she adopted many babies over the years and could be seen carrying 3 at times with her. There was a woman in the 2nd of my mom’s homes who was becoming agitated, so I asked her daughter if I could give her a plush dog to keep her company, since she had a dog of her own before moving in. She gave me the ok to give her one, so I found a real looking plush dog, put a collar on it and at Christmas gave it to her with a note from the dog saying he needed adopted. I couldn’t believe how she cared for that dog and it brought me to tears to know “her friend” was buried in the foot of her casket with her.

    You just never know what object will make a connection with someone with Alzheimers.

    For the last 1 1/2 years of her life, my mom didn’t know my dad or me and that was one of the hardest things for me as her daughter. I remember vividly the last time she knew me and verbalized I was her daughter. I will cherish that memory forever.

    My prayers for you and Marshall as you travel on this journey together…it’s not an easy thing to do.

    Like

    1. Thank you, Penny, for sharing your story. I’m sorry about your mother’s passing and all the pain surrounding her health. This is an extraordinary difficult disease to deal with because our loved one requires every ounce of us every moment of the day and it lasts so very long without remission. I pray every day for those with dementia, their caregivers, and their families. God bless you, Penny.

      Like

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