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By mytngenes On 2013.04.01 21:38
My PWP (hubby) is a wanderer, as he has on several ocassions left the house late at night while I have been asleep~twice climbing out his bedroom window. Recently he "escaped" one night about 11:15pm with the car keys and my debit card. He had not driven in 5 years and had sleep meds (chloral hydrate) and Valium at bedtime (10pm). Needless to say when I woke up to the sound of the car starting, I went in to a full blown panic. I waited longer than I wanted to before calling the police, thinking he had just gone to the near-by all night grocery store. Hubby walks in the door about and an hour and a half later (while 2 officers are at the house) after a trip to Walmart across town, where he "walked around the store" without his walker. This happened on a Sat night. Two days later, on Monday evening he left home as while I was changing clothes after work he took off walking down a major highway next to our apartment. I could not find him, went outside looking in the immediate area then drove around the area until I saw him walking towards home after getting a total stranger to take him to a local video store!!!

I am frustrated with what to do~what are the options to prevent such actions? I had my purse next to me when I went to sleep the night he drove to Walmart, but he had gotten the keys and debit card while I was preparing for bed. So now I immediately lock my keys up in a small safe when I walk in the door after work, yet he "escapes" while I'm changing clothes.

How do you know it's time for full-time monitoring, like an in-house facility? I welcome ideas and thoughts!

By Onedayatatime On 2013.04.01 22:26
How terrifying for you, my heart goes out to you. We are fairly new to this disease and have not had this situation, so I don't have any advice from experience. My first thought would be to install a security system...that is if you do not already have one and if your apartment complex would allow you to install one. I hope that you find a solution that will be the best you the both of you.

By LOHENGR1N On 2013.04.02 00:31
Tenn, Wow that brings back memories! It's been awhile since I've heard tales of action like that. 10 or 15 years ago those things seemed to be quite common. First I'd say check with the Neuro about tweaking His med's I'm sorry I don't remember if He had DBS if so it might be time to check the adjustments there to. Many people used to put a horn or siren, some kind of alarm on the doors or windows to alert if opened. Also it may be that while His sleep med's are putting him to sleep He isn't achieving deep sleep. Or to put it another way when We sleep there is a "switch" at the base of the brain that shuts off the impulses to our bodies so when we dream we don't act the dreams out. People who sleep walk have this problem and end up acting out dreams. I'd discuss this with his doctor also. Hope this helps a little at least. Take care, best of luck and hang in there

By mytngenes On 2013.04.02 08:50
Thank you Onedayatatime and LOHENGRIN for your suggestions and thoughts. We currently do not have any alarms on the doors or windows. We live in an independent living apartment which is part of an assisted living community. I'm afraid that if I mention the need for alarms they will place him in-facility in the "secured area", meaning dementia wing. I'm not sure if we are ready for that. The facility does know that he's "wandered" out. They do not know the details of the "out-the-window" event. I guess I am too afraid to reveal that.

Yes, he had DBS in 2006 (dx'd in 1998 at the age of 46 aft 4 years of not knowing what was going on with him). He's on a lot of Sinemet (roughly every 3 hrs from 5am to 10pm). The impulsivity is so heightened. The psych drs are trying to manage that with 75mg of Seroquel.

I have hired a full-time caregiver during the day while I'm at work. Since the independent-living apartment is not working for us and because he's a wanderer he's not able to take part in any activities at the assisted living facility (unless he's in the "secured area"), I'm in the process of securing an apartment in a non-facility complex so that I can afford to still have the full daytime caregiver (can no longer afford the independent-living apartment plus full time caregiver).

He rarely sleeps more than 3 hrs a night, so that means I don't either. I fear that my health and job performance are suffering because of lack of sleep and stress. I cannot afford a second sitter to stay at night. Family and friends are mentioning in-resident care at a facility, but I'm not 100% sure it's needed at this point. I don't want to give up too soon. I'm really struggling and grieving over this decision.

Thanks for listening.

By susger8 On 2013.04.02 09:26
My dad went through a wandering phase. We had to put a chain on the top of the door that was too high for him to reach and undo. Fortunately he could not figure out how to open the windows, which slid to the side instead of up and down.

Our community has a program for locating people who have wandered away from home. The person wears an electronic bracelet that the police can activate when they are notified that the person has wandered. They can track the location, like a Lo-Jack for people. Here it is a free service. We heard about it from our county social worker, although we did not ever try using it. You could ask if it's available where you live. I can't remember what it was called.


By Reflection On 2013.04.02 09:39
You mentioned that your husband rarely sleeps more than 3 hours a night. That, and his restlessness, might be a sign that he is overmedicated.

The right level of medications is a delicate balancing act, and changes over time. There are also trade-offs: with lower medication levels, your husband might well sleep better, and not feel so compelled to "get out" - but his motor function might be worse. Just something to consider as one piece of the puzzle. It must be so scary, and I hope it resolves, very soon. Good luck.

By jcoff012 On 2013.04.02 22:50
My, and I am treading lightly here, as I understand this is a terrible problem to face, I was the Activity Director in an assisted living two years prior to my husband's transfer to Northern California. We had extensive training in the management and care of the residents; however, knowing your concerns, I went directly to my ex-boss, who has owned and/or operated several large complexes here and in Texas...

Here is his response when I asked him about wandering and mandated reporting: I asked who reports the resident who wanders, if the staff of the facility are mandated reporters? (We were required by CA law to report safety issues to the owners...remember, CA law is pretty strict about everything.)

"The answer to placement is usually determined by the family. However, if the resident begins to exhibit behaviors that are problematic in a more independent social setting, the staff may ask the resident to relocate to either assisted living or the dementia care facility. Doctors orders are required for admission to either AL or MC. Hope this answers your question, Jane."

I also asked a friend who was the nurse there. She agrees that you should check to make sure his meds are correct, because there is the possiblity of him being overstimulated. Her advice was to talk directly to his neuro and explain your fears for his safety and your concerns about possible adjustments to his meds. She said the same thing *my* doctor tells me..."Your doctor works FOR you; they need to be your advocate. BUT, they cannot help if you don't tell them everything. Talk openly and frankly."

I sincerely hope some of this helps. I did not mention anyone's names, nor did I refer to this board. All I said was, "A friend needs to know..." ;) Good luck, Jane

By mytngenes On 2013.04.03 11:00
Thank you, Jane. This information is very helpful to me. I appreciate you taking the time to ask these questions and to seek some answers for me. I will contact my husband's neurologist and ask about the possibility of his meds contributing to this behavior.

By jcoff012 On 2013.04.03 17:40
My, I never present myself as an expert, but I do have good friends who work in/own assisted living facilities and/or Alzheimer's units, so I have no problem asking for help.

As my nurse friend said, there are several possibilities here, but always start with the doctor who is treating the patient. She also followed up this morning and basically repeated the earlier comments that "doctors work FOR, so you need to be upfront and forceful."

She said, "Jane, she cannot go on under this stress. She needs answers and help tell her that it IS true: she cannot be an effective caregiver if she is always under such stress."

Good luck. Please listen to others on here with much longer experience than I. Al and others here are excellent resources, and better yet, are friends. Hugs and love. Jane

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