Follow
Share

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.

This question has been closed for answers. Ask a New Question.
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)
Report

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)
Report

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)
Report

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)
Report

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)
Report

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)
Report

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)
Report

Lucy, thanks for your thoughts. Very informative. A good insight into what people deal with.
Helpful Answer (2)
Report

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)
Report

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.
Helpful Answer (2)
Report

Sunny, my father has used a can, walker and rollator (rolling walker). We both prefer the rollator.

We learned that one particular doctor (a young one who didn't really seem to be familiar with older people) advised a cane with what I call a frog type apparatus at the base was best. A therapist recommended a cane w/o the frog. A therapist at a rehab center recommended a walker. We tried a rollator and found it was best.

The advantage of a rollator is that it's easier to push, has handle brakes which can lock it in position, has a chair for someone to sit down on when tired or just wanting to rest, and has a basket to carry some small items, which can free up the hands for holding the rollator.

Walkers don't have any of those (although baskets can be purchased for specific brands of walkers) , and my personal opinion is that they're just not as stable or safe.

You can take your mother to a DME store so she can try a cane, walker and rollator and see which she likes best. With a prescription from one of her doctors, Medicare will pay for the rollator. The walkers were acquired are at least 12 or so years old, and I don't really remember if we bought them or Medicare aid for them.

Dad's rollator has red hot pink bars, and is kind of jazzy, unlike the walkers which are rather dull. The attention from people is more on the spiffy rollator than the fact that he's using one.

He's discussed adding some lights but we haven't gotten around to that yet. A nice "ooggaaaa" submarine horn would also be a nice touch, especially for any cars driving down the street when he's walking.

I've decided if I ever need one, I'm going to decorate it with faux flowers.
Helpful Answer (1)
Report

Oh, geez, what a goof! The first sentence should read that my father has used a "cane", not a can!

Fifth paragraph should read "....walkers we acquired..." and "Medicare paid".
Helpful Answer (0)
Report

Sunnygirl before I became wheelchair bound I used a walker and decorated according to the season. My first was Christmas and was decked out with tinsel, tiny baubles and lights. It was great having people admire the decor not pitying looks for needing a walker when I was still so young.
For a man though, how about sport team colours? If served in army/navy then those colours or Grandchildren's favourite colours? I had a "Paddington Bear" type luggage label "If found with without my human being, please locate Mrs. L C W who can not be far away. Thanks" This after I left it outside a very small toilet and someone wheeled it away!
The important thing is your loved one is xxxx with a disability, not disabled xxxx.
This helps that to be the perspective. Even my wheelchair I try to personalise, so you see the decor & Lucy before you appreciate it's a chair.
Helpful Answer (2)
Report

Thanks WindyRidge & GardenArtist :~)
Just returned from pottery. I had the Norovirus last week and was shocked today at how weak I still am. This intensified all my usual anxieties, not helped by my Support Worker being 45 mins late. Not her fault, but it really makes a huge difference to someone with dementia. You know what you are doing and when, normally a change like this I would once have done something else while I waited. I can not do that now. The plan is this, if it doesn't happen I'm adrift. There is no contingency for unexpected changes.
Helpful Answer (1)
Report

LucyCW, oh my gosh, thank you so much for writing how things are from your views. That gave me a lot of ah-ha moments with trying to figure out why it was so difficult trying to get my late Mom [98] to do any traveling in her earlier years. All those "what ifs".

Sunny, I also vote yes on the rolling walker. My Dad figured out the hand brakes pretty quick, but my Mom wouldn't use it because she didn't have the coordination to use the hand bakes [Mom couldn't ride a bike with hand brakes, either, in her younger years]. My Dad's rolling walker is bright royal blue, and he loves it whenever someone stops him to ask about his walker :)
Helpful Answer (2)
Report

Lucy, thanks for sharing the great ideas for a walker and wheelchair decoration. It's like having a portable seasonal decoration. I LOVE that idea!

Sluggish when I got up this morning, my mind is now off like a sleek racing horse thinking about ways to decorate my father's rollator.

I also admire your adaptive attitude - you're an inspiration for others.

And your post reminded me of an artist I "cyber"knew from a few years ago; she created person specific paintings and artwork for legs of walkers, focusing on a few specific facilities locally where most of the residents used walkers.
Helpful Answer (1)
Report

Suzana, perhaps Lucy's suggestion would be something you can do when you visit your mother. Instead of going out, have a walker or wheelchair decorating session. Your mother might remember something like that because it's a form of art therapy. And perhaps it might leave her calmer than if she had gone out, even though I think it's wonderful that you have done that and still want to take her for a change of pace and sightseeing.
Helpful Answer (1)
Report

Thanks folks, was feeling really low and you've cheered me up no end :~)
GardenArtist, there are so many holidays to use, but you could also make your own Celebrate Great Daughter's Day (or Sons), The Japanese have Kite Days, Seaside days, if your loved one goes out in community buy/make little buckets to hang on walker, fill with small lollipops and give one to every (random number here) person you meet. Not just children adults deserve a surprise too. Helium balloons are great, I used to have a dolphin a) my late partner could find me if we got separated, b) it could take my troubles far out to sea and leave them there.
Helpful Answer (0)
Report

Have Mom evaluated before buying a cane or walker. Canes are only good if one leg is effected. If both legs need support, you need a walker. Mom was using a cane and it endedup being the cause of a fall.
Helpful Answer (0)
Report

My Mom is used to going out but not for more than an hour. She has told me she didn't want to go but she can't be left alone. I tell her she has no option. I feel I'm entitled some time away even if only for an hour. She does this as we r getting ready to leave so not enough time to find someone to sit with her. I do agree though, you can't dissrupt their routine. This is how they deal, having things familiar. I no longer take Mom to church because its overwhelming. TG our Church posts videos soshe has "Church" in her own room. Most ALs will allow you to eat lunch/dinner there for a small price and advanced notice. I agree that taking pictures and videos would be nice. You could take her outside or the common room.
Helpful Answer (0)
Report

All I did was to take my mom out to the front porch of her facility (alz/dem) to get some fresh air and watch the cars and it really threw her off. I am sole caregiver and thought this would be a great idea. Bless her heart, we were out for about 15 min. and I could tell that she was so uncomfortable and disoriented. Her inside world was what she knew and was comfortable with. I thought I was doing a great thing for her and that's all we can do. Don't think anything about it and just plan to go see her for a little while when you can. Not anyone's fault. It's this disease and you can only do what you can do. I remember when I would try to take my mom for outings to give my dad a break 6 years ago. I would take her to a store to shop for clothes (her favorite thing)(or was). We wouldn't be gone an hour and she would turn into a different person. Anxious, nervous, and disoriented. Would keep saying she needed to go home and check on dad. He needed the rest so badly and loved the time alone. Anyway, to answer your question, yes, it does throw them off. It's not you or what you are trying to do. It's the disease and their brain not being able to process all the activities going on. Just visit and enjoy the time you have. Good Luck and God Bless #horribledisease
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter