Medical Forum / Diseases and Disorders / Alzheimer's / July 2005
Mother gets lost
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meg - 10 Jul 2005 18:36 GMT One of the things I feared most happened, but it turned out ok. My mother moved into assisted living about a month and a half ago. She's adjusting nicely. On Fridays she goes across the street to the independent living apartments for a knitting group. I had assumed one of the ladies from indpendent living escorted my mother, because Mom still can't find her own apt. But mom went on her own, and got lost for 2-3 hours. She eventually found a truck driver who gave her directions, then found her still wandering 20 minutes later and gave her a ride to her facility. She was carrying a salad and 3 bottles of salad dressing. She wasn't scared (she said she knew she wouldn't starve because she had the salad!) but more frustrated and very tired after all the walking. I felt proud of her for handling the situation so well. It reminded me, that despite her dementia, she still is a grown, experienced woman who has always had good coping skills. She deserves more credit than I give her. Of course, from now on, we're making sure she has an escort to the independent living place.
Please, don't anyone suggest she needs to be in a locked facility. Her short term memory, and physical orientation skills are shot. But in many ways she still functions quite indpendently, making her own bed, doing laundry, cleaning so for quality of life needs as much independence as possible.
The Turd Burglar - 10 Jul 2005 19:56 GMT SOUNDS LIKE SHES BEIN A TURD.
Evelyn Ruut - 10 Jul 2005 23:01 GMT > One of the things I feared most happened, but it turned out ok. My > mother moved into assisted living about a month and a half ago. She's [quoted text clipped - 18 lines] > doing laundry, cleaning so for quality of life needs as much > independence as possible. Of course she probably isn't anywhere near ready for that yet. But that isn't the only option either, there are in-between sort of things you can do.
I recall when my mother in law was still living on her own, paying her own bills and cooking for herself, when her sister became ill and went into a local hospital. My MIL knew the whole area and had lived there for almost 45 years, yet she got lost for hours and hours, walking in circles, didn't know how to get to the house or to the hospital. When she finally did get back home she was so traumatized she wouldn't go anywhere anymore.
Remember this is a progressively worsening kind of an illness. Unfortunately some sort of regular assessment is needed, otherwise we (and they) think they can do something because they always WERE able to do it. But one day they can't. Just as this one day your mother couldn't find her way across the street where she has been going for a long time already, one day she just couldn't do it.
I am glad you arranged for someone to help her find her way, because you never know when this could happen again, and it might not be a friendly kind helpful person who noticed her wandering lost, it might be a bad person with bad intentions.
When my MIL was finally examined and fully assessed, we were told to NEVER leave her unattended again, and we didn't. She was also at that time still able to make her bed, get dressed, apply makeup, and had many other skills that you would hardly know that she was as impaired as she really was. If you asked her what to put into a chicken soup, she could sit and name the things that went into it, just fine. She knew what she wanted and could articulate it well. At that time she was still doing pretty much OK except for a few little glitches, like getting lost in her own neighborhood.
She wasn't ready for anything vaguely like a locked ward either, but she really did need someone around at all times to keep an eye on her that she didn't get into a situation she didn't know how to get out of. That meant coming to live with us, but it still took a long time till we could get it all together.
 Signature Best Regards, Evelyn
(to reply to me personally, remove 'sox')
John Inzer - 11 Jul 2005 00:59 GMT Well said Evelyn.
And truth is...until a caregiver spends 24/7 with their loved one they may not realize just how far the disease has progressed. Family members who visited Rosie thought she was doing fine. They didn't see her at 3:00AM when she was running up and down the hall screaming that the devil was chasing her.
Being in a locked facility may be extreme but an ankle bracelet that sets off an alarm may be a good alternative. Also, it's a good idea to provide a picture and description of your loved one to the local Police Department.
 Signature John Inzer
>> One of the things I feared most happened, but it turned out ok. My >> mother moved into assisted living about a month and a half ago. She's [quoted text clipped - 57 lines] > meant coming to live with us, but it still took a long time till we could > get it all together. genileuqcaj@aol.com - 11 Jul 2005 02:07 GMT > One of the things I feared most happened, but it turned out ok. My > mother moved into assisted living about a month and a half ago. She's [quoted text clipped - 18 lines] > doing laundry, cleaning so for quality of life needs as much > independence as possible. I assume the independent living facility and assisted living facility are owned by the same company. Why was your mother permitted outside alone? Especially since these are employees who are familiar with the level of care she requires. Could her knitting group be rearranged, so that the independent living ladies could cross the street and meet up with your mother in the assisted living area? A few weeks ago, a woman with Alzheimers wandered away from her nursing home in my area (Philly suburbs). Her body was found about two miles from the home, near the cemetary where her husband is buried.
Pattycake - 11 Jul 2005 04:19 GMT Meg,
A locked facility. That sounds horrible doesn't it? It sounds like a prison. Well, it's not.
I work in an Assisted Living for persons with dementia. Our outside exit doors are alarmed. We do, however, have indoor courtyards and two side yards that our Residents enjoy when the weather is good.
Yes, we are a "locked facility" but we're not the evil prison that some people picture.
You need to know how lucky you are that she was picked up by a good and kind person like that truck driver. There are other people out there Meg, that aren't so good and kind.
I'm not trying to scare you. I'm sure you were proud of your mother. I watched my own mother go through different stages of assisted living, and it was difficult to see her become less and less independent.
Bottom line is, you were lucky this time. We hear about people everyday that wander away from home who are suffering from AD. Most of the time, the person isn't as lucky as your mom was. Her safety is in your hands. I'll bet you remember how she held your hand when you crossed the street. Now it's your turn to make sure she is safe.
It's a hard decision to make, but there are buildings that are locked that are still warm and welcoming. I suggest you look around at your options. I hope you will be pleasantly surprised.
All my best, Patty
Anthony Shipley - 11 Jul 2005 04:43 GMT >Please, don't anyone suggest she needs to be in a locked facility. Her >short term memory, and physical orientation skills are shot. But in >many ways she still functions quite indpendently, making her own bed, >doing laundry, cleaning so for quality of life needs as much >independence as possible. Meg, congratulations for treating her with dignity.
I sympathise with caregivers and the difficult choices they need to make. As a sufferer, I fear dying/injury more than loss of dignity or years of cloistering.
- Mind control is being able to make all the voices in your head take turns.
Mod as a hooter!
meg - 11 Jul 2005 17:15 GMT I guess I wasn't really looking for advice. One of the things I find so difficult with this disease is anticipating the future. Reading and hearing about the decline of others and anticipating that for my mother often makes me more anxious than the day to day care. It's a bit like a pregnant woman hearing story after story of terrible birthing experiences. I just wanted to express some relief to have met one of my worse fears for my mother and it turned out ok. I also think it's helpful for others going through this to not horriblize everything because the disease is already so horrible.
I am very aware of my mothers skills. She was independent until five months ago, as evidenced by her ability to manage her own complex medications which I monitored closely. I also visited with her every day for several hours. After several unfortunate events, she had a big decline and it was obvious she was no longer able to be alone. My sibblings and I and home health were with her 24/7 for three months until we found an assisted living facility. We chose a facility that has experience managing dementia patients and that locks it's doors after 4:00PM. However it is assisted living not memory care so residents are free to come and go. Of course we are aware all the dangers out there and are doing all we can to keep her safe, such as hiring someone to take her for walks and visiting daily for 1-2 hours, longer on weeknds.
I have visited several lovely locked down memory care facilities and she is on the waiting list for one when the time is right. However, the patients I met in memory care were much more severe than my mother which is why we don't want to consider a locked facility right now.
Evelyn Ruut - 11 Jul 2005 18:01 GMT >I guess I wasn't really looking for advice. One of the things I find > so difficult with this disease is anticipating the future. Reading and [quoted text clipped - 24 lines] > the patients I met in memory care were much more severe than my mother > which is why we don't want to consider a locked facility right now. Hi Meg,
This group serves a lot of purposes. We don't always want or need advice, but sometimes just having a place to vent or share can be helpful.
You don't need to take or even agree with any advice you get, but this is usenet, and advice may be given freely too. We can't always know if a person is seeking advice or just needing a place to express themselves.
 Signature Best Regards, Evelyn
(to reply to me personally, remove 'sox')
John Inzer - 11 Jul 2005 18:57 GMT "Evelyn" wrote:
> You don't need to take or even agree with > any advice you get, but this is usenet, and > advice may be given freely too. We can't > always know if a person is seeking advice > or just needing a place to express themselves. =============================== Absolutely correct and don't forget about countless lurkers who may benefit from the information.
 Signature John Inzer
Evelyn Ruut - 11 Jul 2005 19:14 GMT > "Evelyn" wrote: >> You don't need to take or even agree with any advice you get, but this is [quoted text clipped - 3 lines] > Absolutely correct and don't forget about countless lurkers who may > benefit from the information. Yes, exactly. I can't tell you how many times someone has written me privately about something they read on the newsgroup, and they'd prefer not to post anything publicly.
 Signature
Best Regards, Evelyn
(to reply to me personally, remove 'sox')
MaryD - 11 Jul 2005 22:28 GMT > I have visited several lovely locked down memory care facilities and > she is on the waiting list for one when the time is right. However, > the patients I met in memory care were much more severe than my mother > which is why we don't want to consider a locked facility right now. Meg, I hope that what I'm about to say doesn't come across as unwanted advice. My previous job was as an Alzheimer's Unit Coordinator in a large Assisted Living Facility. We were a "locked unit" with a secure courtyard. All of our residents were encouraged to be as independent as possible - that included making their own beds, getting dressed, toileting, doing laundry, etc. It was very common for future residents and their families to come in and only see the very low functioning people - it's only natural. But, believe me, the majority of people in any Assisted Living Alzheimer's unit I've been in have been in stages 4-6 and moderate to high functioning.
I quit my last job because they did *not* have a secure Alzheimer's unit and, as a result, residents were doing as your mom did - wandering off the premises. It broke my heart to know that these people could have been in a secure, loving environment with people of their own cognitive level and yet the facility didn't see the need. I went home every day just sick with worry.
I know that you will do what's best for your mother, I would just be remiss if I didn't speak to my own experiences. Locked Unit, in many cases, does *not* equal low functioning.
Respectfully,
Mary D. board certified music therapist certified dementia practitioner Director, Adult Day Care Center
Mary_Gordon@tvo.org - 12 Jul 2005 01:55 GMT I'm with you Mary.
Meg, the line between what happened and what could have happened is a razor's edge. Personally, having been through this with a loved one - I think the line of defence needs some beefing up because the incredible luck that protected her this time may not hold yet again. You are depending on your mother to be able to be able to read a calendar and tell time, so she knows when her next get together is, and you are praying she will remember she is not to go alone and must wait for an escort. You won't get a registered letter announcing the disappearance of the key skills that are already wobbling.
There is nothing to stop her from getting up tomorrow morning, not recalling that she got lost or that she needs an escort, not recalling that the meeting has already happened or that the next one is not scheduled for tomorrow.......and blithely sailing out the door with another salad in hand.
You've had a narrow escape, although I know you don't yet see it that way just yet. She needs something in place to preclude her going out unescorted - anywhere. And that something can't be dependent on her being able to recall that that is the rule.
Mary G.
Karen - 12 Jul 2005 04:21 GMT One locked facility I visited for my MIL, we rejected outright because the only activity we saw was the residents engaged in activities like gluing cotton balls onto pictures of sheep. And that place had a horrible alarm that went off every time someone tried the outside door (which they did constantly). And they were the most expensive of all the places we saw. Thankfully, they weren't all that way.
The facility my MIL went to initially was assisted living. But my MIL felt very shunned because the other residents treated the people with memory problems like they were lepers. She has been so much happier since moving to the memory care place in our town. Everyone there has memory problems so no one feels shunned and once you pass the initial (locking) entrance doors, the entire facility is open inside and out. There's not a feeling of being shut in. It is very dependant on the facility though.
We found out when she started wandering that there had been a few questionable incidents before but they happened during the day so the staff didn't think much of it until looking back AFTER she had wandered off into a field nearby at 2 AM because "her parents called her and told her it was time to come home". It still took 2 more incidents before her doc and the facility would agree there was a serious problem.
My experience with wandering is that it seems to be more likely to happen at night where there is also less staff in an assisted living place. And there was no warning with the first time she wandered out at night. My MIL remained much more functional during the day, but at night she became very restless (still does). I'm not trying to offer advice as much as the experience that things accelerated much faster than we thought they would. Good Luck.
Karen
> > I have visited several lovely locked down memory care facilities and > > she is on the waiting list for one when the time is right. However, [quoted text clipped - 28 lines] > certified dementia practitioner > Director, Adult Day Care Center
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