Sunday, May 07, 2017

She Went A-Wanderin'


Well, we learned the statistical probability of Alzheimer's behavior the other day when my mom managed to escape the 24/7 Board and Care facility and wander out on to the suburban streets of the neighborhood she hardly knows. Sixty-percent of Alzheimer's sufferers will wander, and sadly 50% of them not found within 24 hours will suffer serious injury or death. On the beautiful, hot spring day my mother managed to find a way out, pushed her walker beyond the cul-de-sac on to another street and continued walking. A woman in the neighborhood saw her and thought she looked unsteady and confused, so approached her and struck up a conversation. She thought my mother definitely needed assistance and called the police. The police came and questioned her. My mother knew her name, but not where she lives. She knew my sister's name, but not how to contact her. It took the police about an hour to find my sister's contact number and call her. Imagine getting that phone call. My sister was utterly devastated to hear the police say they had our mother in the back of their car, that she had escaped from the facility and needed assistance.

Luckily, all was okay. My sister picked her up and took her to her house rather than back to the 24/7 care facility. My mother was dehydrated and exhausted. She slept for several hours before my sister took her back to the facility. So, of course, now we're looking at other facilities that have more onsight care and a true safe environment that can't be fled. We had already been considering moving her to a place where there is more mental stimulation, at least more than a TV turned on in the living room for distraction. My mother needs engagement in all ways... music, dancing, card games, and conversation. She needs staff who are completely skilled in the ways of personal resistant behavior, and not perplexed or stymied by the answer "No" to every suggestion of personal care.

Lately my mother has been saying that she wants to go home. We try to make sense of it, wonder what it meants for her... a place? a time? her former brain? death? But in researching wandering behavior I found this:
I learned that people suffering from Alzheimer's want to go back -- back home. It doesn't matter if they are at home. They yearn to go home.

I get email all the time from readers telling me they are being driven nuts because their loved one wants to go home.

A word to the wise is sufficient. When they start saying this get your eyes and ears open. They might decide to try and make it home on their own --
they are ready to wander.
My mother continues to try and find ways out of the house. The restlessness and desire to wander is a hallmark of Alzheimer's, as is resistant behavior. I cannot tell you how tragic and heartbreaking this has been for my family. There are no words to convey this ongoing loss.

34 comments:

  1. Unfortunately, that's the experience I had with my mother. Home for her was West Seattle, which just happened to be 140 miles to the north, and if it hadn't been for someone who cared enough to talk to her and call the police she might have made it there.

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    1. Loren-- The things we learn as our parents age, and sometimes wind up with Alzheimer's. It's an unfolding sad story everyday. I'm glad someone found your mother too. Ah, the kindness of strangers.

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  2. My mom disappeared on me one day, when I had sat her down on a couch at the entrance to their apartment (she was still with Dad, with care aides coming in twice daily). I went a few steps away to check their mailbox, turned around, and Mom was gone. I found her on another floor, wandering the hallway, looking for "home".
    I was glad that the building had an exit code on the door; 1234*, nothing difficult, but enough to stymie an Alzheimer's patient.

    After that, I looked for those safeguards in every place she stayed.

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    1. Susannah-- It surprised me to learn how often wandering is part of the Alzheimer's behavior. Oh, the things we learn watching our aging parents decline. In her next facility, we're hoping for more safeguards. Thank you for sharing your story. So much to learn.

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  3. This is indeed a tragic situation and I hope you can find a better home for your mother.
    As a short term solution, just in case, can you fit your mother with a small ID badge with contact phone numbers and any other vital info? There are all sorts available that are non-intrusive and easy to wear.

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    1. Sabine-- The badge/bracelet idea was suggested to my sister by the police officer who was with my mom. It's such a good idea. It's amazing how much we have to learn in such a short time. Thank you so much for your excellent suggestion.

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  4. I am so glad the ID has been addressed. I have found a few escapees in my days working for the power company and an ID with address and a phone number were really helpful finding where they belonged.
    This has to be so frightening for your whole family. I so hope you can find a more secure facility.

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    1. Patti-- How interesting that you found a few escapees. That must have been so interesting. It's not something I would ever think about, and yet it happens so often. Yes to IDs!

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  5. Definitely need a place that has a fenced yard and doors that they can't go out without someone seeing. What happened could have been catastrophic instead of an awakening for the family. I have a good friend whose mother was senile, possibly Alzheimer's but not sure at that time of the positive diagnosis. She found doing art with her mother (my friend and her mother were/are artists) gave her a connection that nothing else did.

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    1. Rain-- I think my mom may have been the first person to escape there. It really is a secure facility with alarms and a fenced yard. On the day of her escape it was very hot, a door was opened, and the staff was showering another resident. My left through the open door. We're hoping that the next facility has more mental stimulation, which we know she truly loves and needs.

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  6. ((( Robin ))) So scary! I'm so glad she was found and is OK.

    My relative has a different kind of dementia, early onset -- but she was definitely a wanderer and would-be escape artist a few years ago. She also talked about wanting to go home, or to get her own apartment (which was out of the question, she could not manage that). It is very hard, seeing those changes.

    The suggestions about places with keypads, with a secure fence that can't just be pushed open, those are excellent! And so is the thought that she needs more stimulation than a running TV set. Most care facilities focused on dementia have the safety features, and also daily activities. My relative is not into art, but there is a good music program at her place, and lots of people respond to music.

    Meanwhile, can't hurt to get ahold of an ID bracelet or necklace, or there are GPS things that can be attached to shoes, I think.

    Sending so much love to your family. xoxo

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    1. kathy a-- I think one of the saddest aspects of Alzheimer's and Dementia is how each family has to learn the path to care on their own. Yes, there are places that help, but finding those places is part of the chaos. We have learned a lot in the past five months since my mom was diagnosed. Still learning our way and hopefully finding the right answers for our mother. Thank you for your love and support.

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  7. So sorry to hear about your mom's wandering off. I do hope you can find a "memory care" facility that specializes with people like your mother.

    I had an uncle with Alzheimer's. Despite the fact that he was living at home, he constantly wanted to go home. After an hour or so, my aunt would put him in the car and take him for a short drive. And for a while when they returned he was "home." The cycle continued until he was no longer able to ambulate.

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    1. NCmountainwoman-- We're checking out several memory care facilities. The tough decision is trying to figure out which one will be the best for her. Your story about your uncle is so compelling. Alzheimer's is such a heartbreaking diagnosis. There are no easy answers for anything.

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  8. Oh, Robin - My heart goes out to you as always. We had a few "adventures" with my mom when she lived with us. Now she can't get around on her own, and it's hard to tell what stimulates her at age 99+. They are very kind and attentive to her where she lives, and keep her safe, but you never
    know really how with it she is.
    Things sure can suck when ya get so old.

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    1. isabelita-- Wow! Your mom is 99+. That's quite an age. My mom is going to be 92 in September. It's so hard to know what to do for our elderly parents. Things definitely do such when ya get so old.

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  9. Hello Robin so sorry this has happened. My Dad was in a facility that required all patients to wear wrist bands. Whe the patients tried to go through any outside doors an alarm went off. Sounds horrible but no one wandered off.
    I hope you find somewhere your Mom feels like at home.
    Take care.
    Robin

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    1. Robin-- My mom is definitely getting a wrist band. I think that will go a long way in helping keep her safe. And we'll be able to let out a sigh of relief. We're working on finding a new place and truly hoping for the best.

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  10. Robin, we were so sorry to hear about how your mother's condition. I don't think there is anything anyone can say to make it any easier. It's just one of those things you try to make it through. I'm sure it's not much consolation to know that others have gone through the same thing, but, of course, we have. I was lucky that my parents didn't suffer dementia, except for a little that my mother had as a result of multiple TIA's and falls. But Leah's father went though it. As NCmountainwoman said, he wanted to go home even though he was in the house where he had lived for more than 45 years. Leah found some good caretakers so he could stay at home. One of them would take him for a ride and then come "back home." But as you surmised, I think "home" meant something more than the house where he lived. I think he wanted the life he had back when he was healthy and his wife was still alive.

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    1. Mark-- I can't tell you how much I appreciate the shared stories. The modern world makes it so difficult for us to know the paths and trajectories of our aging loved ones. We all have to make the discoveries on our own, instead of telling the stories around the campfires late into the night. Thank you and Leah for your story. It really helps.

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  11. Robin Andrea,
    My Mom has dementia and is at the sad stage of knowing that, as she says "I am really losing my mind."
    I have just commented to my family that her mood/behavior/aggressiveness seems to get worse with the moon phases, full moon being the worst. Being in the medical field, I have always discussed this anecdotally with colleagues and we have seen evidence of altered behavior in dementia patients. Unfortunately there is no scientific data regarding this phenomenon.
    I am wondering if that affects the need to "go home" or wander in some patients.
    I know it sounds kooky, but as an RN I have seen this happen for years.
    Best wishes to you and your Mom on this difficult journey,
    Cathy McDonald

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    1. Cathy-- I am so glad you shared this. The moon is waxing and soon to be full. I will remember this. I have often wondered about the moon, and sense that even the light at fullness can be too much for a restless sleeper. Thank you so much for your good wishes.

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  12. I am sorry for the stress, but that really does not seem like a good care facility. Any dementia caregiver should be able to recognize that most/all of the time "No" is Alzheimer-patient-speak for "I don't remember how to do that." They need to be trained to treat the patient with respect and to guide her appropriately through what is, essentially, the first time she has ever taken a bath. or brushed her teeth, or dressed herself. So instead of suggesting that someone take a bath, you run the bath, show them what to do with the washcloth and the soap. Same with brushing teeth. Explain the task and how to do it. Every. Single. Time.

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    1. Unknown-- Thank you so much for this thoughtful comment. I will remember this the next time I'm with my mom and she resists. We are learning, and it is truly one heartbreaking step at a time.

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  13. I'm really happy to hear that your mom was okay after her little trip. Still scary though. It's such a sad and terrible disease. It seems to be hard on everyone involved. That sure was nice of that lady to take action.

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    1. Pat-- The thought of what might have happened to my mom if that kind stranger had not intervened is the kind of stuff that keeps me up at night. You are so right: It is such a sad and terrible disease.

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  14. My youngest son is developmentally disabled and requires our 24x7 care; I sure empathize with your situation. Did the care facility initiate a search? How long can a patient be missing before they are aware of the situation? best,df

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    1. def59485-- I'm so sorry that you really do know what it's like. The care facility did not initiate the search. We don't know when they actually realized my mother was not in the house. They did arrive when my sister was with my mother and the police, and my sister waved them away. And the communication since then has not been completely clear. Thank you for stopping by. It's always good to hear from you, df.

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  15. My elderly neighbor went on 2 walkabouts yesterday, and his wife was beside herself! He didn't get very far, fortunately, and she noticed he wasn't in the house and went to find him. The first time, he had taken the car keys from her purse, and was sitting behind the wheel of the car -- fortunately, he hasn't driven in years and seemed to be stuck on what to do next. Then he went missing again, and she found him in the front yard -- it was only later that a neighbor noticed that 3 of the car doors were standing open, so he evidently tried again but abandoned the effort. Oh, his wife was so upset....

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    1. kathya-- That all happened yesterday! Oh my. Your neighbor is really going to have her hands full. She needs to set her house up with all kinds of alarms. He needs to have a wristband with emergency info, and the doorknobs should be somewhat camouflaged so he won't recognize how to exit. There are all kinds of great advice on some wandering alzheimer's sites. I wish them good luck.

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  16. Dear Robin Andrea,
    I'm so very sorry to hear what happened with your dear Mother. I agree with you, so sad to see our aging parents decline...
    But I'm very happy to hear that your Mom was okay. Wishing to her all the best.
    Many hugs.

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    1. Sonia-- Thank you for your kind words. It is so much appreciated. It has not been easy, and we are planning a move for my mom to a more secure and better prepared Memory Care facility.

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  17. Such a familiar story-- it is certainly a tough time of life for us, watching and worrying about them, and especially for them! My mom too wanted to go "home," and also wanted to see her mother. How can you answer questions like that?

    I wish you all the best in getting thru this sad and challenging life process.

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    1. Sally-- It really is such a sad and challenging life process for all involved. We are learning, everyday a new lesson in communication and love.

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