I live out of state, visit Mom as I can every 4-6 weeks, for 3-4 days. Like to take her out to eat, drive to the beach, etc. My Mom has dementia, early Alzheimers. Nursing Director at ALF told my sister, who lives five minutes from facility, that it might be better not to take Mom out as she is then 'extremely' anxious and out of sorts for a couple weeks following my visit due to this break in her routine. Normal? Or, if she got out more it would be better for her? Will I soon be told that my visits are provoking anxiety and it might be better not to visit? Sister and I have limited contact.

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I have Lewy Bodies and with help care for myself at home, and I'm a carer for BIL with dementia.
I find going out very hard, even though I decide where we go, when & for how long the fact is that I'd really rather not.
Going out, having a lovely outing and a change of scene seems like a lovely idea, but this is my perspective on it.
Going out:~ will I be warm enough? I have to put on shoes, go to the loo. Put on coat, scarf, go to the loo. Gloves, hat? where's my bag? Did I go to the loo? Better just in case. Have we got my blanket? Is it far? Should I go to the loo?
Arriving at destination:~ Where's the loo? Is it accessible? Clean? Get bundled up in covers, don't ask for the loo.
Strangers or should I know them? Don't know what to say. Wonder where the loo is.
Should I know where this is? They've made all this effort to bring me out ~ enjoy it! Oh, for the loo. Wonder if we can go soon?
We're going to eat ~eeek, what if I drop something? Will I have to choose? What if I can't, what if I don't like it? I don't like eating with people. Why do people talk to me when I eat? Oh, where's the loo.
Sand in my shoes, wheelchair. It's a lovely idea but I can't walk on the beach now, it reminds me of lost times. Where's the loo? Don't let me cry remembering. Don't let me not remember, make them cry.
All to be repeated getting home.
I'm almost 59, don't have a UTI but when you don't have the security of a known loo it becomes a constant anxiety.
When my late Aunt & Nanna were alive I was so pleased on my visits "to get them out" now I'm younger than they were and I'm sorry I never stopped to ask them what their idea of a fun time might be.
This is only my perspective, but it is easy to become paranoid about being pushed out when possible (and pointless) guilt gets a hold.
As others have said, familiarity becomes so very important and chances are you are far more aware of the absences than Mum is.
Helpful Answer (13)

Hi Sunnygirl, glad I could help. As I said I'm still pretty independent and yet what I described is what I go through. I go out because I know I need groceries for home/pets and I need to stay socialised but it is getting harder. On Wed I do a pottery class at Adult Ed (my choice) that involves my Support Worker accompanying me on the train, staying with me and bringing me home. Tues night I run through all the possible scenarios. What will weather be? Will it be Leanne or a stranger? Will my wheelchair be ok? Will my covers get caught in wheels? Which train staff will be there? Will there be room on the train (it's a pre-booked wheelchair assisted journey)? Will they get me off? Have I lost my tickets (Leanne looks after them). Can I get in the loo to change into pottery clothes? Is pottery room as I remember? Do they know I'm coming (this is my 3rd year!)? Similar anxieties about the return journey. I love my class, I have a couple of friends there and it is good for my joint movement. It is though a complete nightmare of anxiety, getting worse and no way (as yet) of stopping it.
Though I'm determined to go on attending as long as possible.
Helpful Answer (9)

Unfortunately, the change in surroundings might in fact be increasing her confusion, especially if she's sundowning and you return her in the afternoon or closer to evening.

I think perhaps when you visit you could try just staying in the facility, or go to rooms where she's familiar with the surroundings.

If she's used to where she is, the change of location in going out could provoke too much anxiety, frighten and destabilize her. She needs to be in a place where she knows where things are, where she feels comfortable and safe (to the extent possible with dementia).

Perhaps you could bring in a lunch for her, or bring photos of a beach you used to visit.

I'm sorry this has happened to you; it's very kind and thoughtful to want to take her out for a change of pace. That would be my inclination as well if it were not for the dementia.
Helpful Answer (8)

People with dementia need routine. They don't like much change. But this can be a judgement call. I have seen well meaning relatives go to great lengths to load granny into,the car for an outing. It's a big ordeal, granny is freaked and subjected to new sites etc. other dementia patients may enjoy a shopping trip.

How does your mom react? Enjoying herself? Nervous? Do what makes her the most calm and comfortable. Visit in her room, walk the halls, step outside, or go for a ride. But do what she needs and no more. It's hard for us to imagine looking at the same room all the time. For dementia patients it may very well be fine in many cases.
Helpful Answer (7)

Lucy, your determination and perseverance are admirable. You've given so much insight into thought processes that many people would not otherwise be aware of. And you have a good perspective on managing and balancing all the questions and issues that could arise.

It's really helpful to know that these kinds of questions might be concerns that people don't want to share with parents or adult children, but that affect their plans and desire to leave the house and/or go visiting to different places.
Helpful Answer (4)

It's normal.. A change in surroundings is confusing..

I took my Mom for lunch and what I thought would be a nice drive on Saturday, when we got home she kept saying she didn't know where she was and this isn't her home...
Helpful Answer (3)

That's a good perspective LucyCW. I think that sometimes the caregiver still sees things from our point of view and not from the person who has dementia. A nice day walking on the beach sounds great to us, but for someone with a different perspective, not so much.

I recall that once I had my cousin, who has dementia, at a doctor appointment in the afternoon.(It couldn't be avoided.) Due to a conflict with the facility, I had to transport her. Most of the trip she asked me if I would be returning her to the Manor. (AL facility where she resided.) I assured her that I would, however, when we pulled into the parking lot she was confused. She didn't recognize the place. I wheeled her in and she had no idea where she was! I was terrified that she was going to freak out. I took her to her room and it wasn't until I found some other residents to talk to her that she calmed down and recalled that she was at the Manor. I swore no more afternoon trips from the facility after that.

Then, one day, after she was moved to Secure Memory Care, I took her for a visit to a new visiting room for about 45 minutes. It's not in the Secure area. When we returned, she didn't know where she was and I had to locate the other residents and jog her memory. She was very unsettled until she realized she was back in her area. I no longer consider taking my cousin off the premises due to her disorientation and anxiety it brings when she is returned. I don't think she reacts that way when the staff transport her to doctor appointments.
Helpful Answer (3)

I agree with Windy, you need to use your best judgment. Since you are there for several days you should have a better idea how this is affecting her than family who just parachutes in for the afternoon and leave. Is she confused when you see her the next day? Do you have to coax her to go out or is she looking forward to it?
Take the time to talk to the people working around your mom to get their honest opinions. If you show yourself willing to work with them they will be less apt to view you as irresponsible (even if sis is badmouthing you when you aren't around).
Helpful Answer (2)

Lucy, thanks for your thoughts. Very informative. A good insight into what people deal with.
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My mother is apprehensive about going many places due to bathroom accidents. She has bladder issues and sudden bowel problems. She has to be near a restroom. Even though she may wear a Depends, it's still worrisome for her. She also worries over losing her balance. I've noticed it. In fact, I'm going to suggest that she start using something. What is best? A cane? A rolling walker? I know she will be embarrassed, but she is losing her balance too much. She's 75 years old.
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