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My sister lives a couple thousand miles away, but we've always maintained contact, usually by me visiting once a year, phone calls in between -- a few years ago I moved her across the country, at her request, and then, nothing -- she seemed to disappear. I thought she might be dead -- a complicating factor: her children would not respond to any of my attempts at getting info about her whereabouts -- I finally located her in a care facility this week, and spoke with her on the phone yesterday -- she said "they tell me I have dementia" -- I assume its some early stage, cause other than a few long term memory slips, she was her old self on the phone -- I told her I wanted to come visit, she was ok with that -- I'll have to somehow get through to her kids, who live near to her -- I've also contacted the facility to see if they can tell me anything about her current state -- but I'm also wondering, before I fly there, what to expect -- I suppose this will need to be just a brief visit? -- I hope this will not make her feel sad, she's very aware that she has lost her independence, and resents that, refers to the facility as a prison? -- Could my visit actually be harmful to her? -- am I sticking my nose in where it doesn't belong, and should just leave it to her kids (who she says have control of her affairs)?

Plan your visiting hours around meals, this will give you something to do and help if the conversation is awkward. At least for the first day or two. I would stay as long as you want and visit for short periods each day, maybe take a day off for your mental health. It is traumatic to see our LO in a facility, prepare by having a box of Kleenex in the car. Be joyous and happy around her, praise the facility, staff, food, activities and how well she is doing, this will help her (maybe) not start an escape plan with you as the getaway driver.

If she is still able, you could find out if you can take her out. Do something that she really enjoys.

The hard thing with dementia is you never know how the day will be, good days and bad days. Some days you wonder why they are in a care facility and the next day you wonder where your loved one went.

Play it by ear, if you go in the am and she is confused, come back after lunch. Talk with the care providers, the aids and nurses, they can tell you if she has a time that is better. If she has sundowner syndrome, usually they are very helpful once you identify yourself and explain that you want to make the most of your visit for her and you don't want to create any type of upset. They know when she is easier to deal with if she even has any issues. Bring some kind of special treat for all the caregivers to share, cupcakes, donuts, fruit basket or whatever, I found that they appreciate being acknowledged for caring for your LO and are way more helpful. Don't forget some little treat for your sister as well. Something she can share with her friends there.

Be prepared, this will be hard on you. The 1st time I saw my dad, I had to go to the bathroom to get my composure back. It did get easier, so take heart.

Enjoy your visit with your sister.
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Reply to Isthisrealyreal
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Yes, you should visit. Let sis take the lead.

See if she will sign a HIPPA release for you if she is able and wants to do that. Then you could get health information. Her kids should not be able to stop that as it sounds as if she would still be considered competent. Maybe she wants to change her POA's even. Have kids been granted guardianship by a court? If so, there is little you can do unless they are not seeing she is properly cared for.

How did you find out where she is?
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Reply to gladimhere
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You may consider taking some old photos with you of family or the town you grew up in. If her long term memory is still pretty good, these can give you good conversation starters. Showing off recent photos of your family can work too but she may or may not remember seeing those photos from day to day.

Music you enjoyed in your youth can also help make an enjoyable visit too.
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Reply to TNtechie
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I'm a Caregiver and see this way to many times. Yes, by all means go to visit with your Sister. In many cases the Short Term Memory is affected first. What is very clear in the mind is the past. Most likely going down memory lane. Things you haven't thought about in years. Yes, She might tell you the same story several times & that's okay. I ask the Person different question about the subject. This encourages them to tell the Story different. Also open up another part of the brain. This also gives you both an opportunity to write a journal about other Family members. Your life history.

How long should your daily visits be? I find you have to play it by ear. Many times you can tell they just want to talk for hours. Other times one hour is enough. Depends on the day. I find the first day the hardest. You both will be getting comfortable with each other. So 3 visits for 1 hour works well. By the second day you will both relax and have a great time. If She becomes agitated, excuse yourself for an hour and then come back.

Should I bring anything - Photo Albums are great for beginning a conversation. Food She Loves. Pictures of your Children & Grandchildren. The best thing you are taking is yourself. Take some pictures of the 2 of you and frame them so She has them.

This is your Sister & you have every right to Call, Visit, Send Items etc. Please don't let Her Children keep you away. Just breathe & relax. I hope you have a wonderful visit. God Bless you both
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Reply to leslie3
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Goodness I feel for you. What has been your relationship with your sis? What is it with her kids? I have found that short visits are good. When they run out of things they can remember, they resort to virulent anger. So,maybe stay a few days. Talk to staff. Short visits.

I am so sorry for the loss you are probably feeling. This is a wonderful helpful group of people. Stick around. We will help best we can. We have been in your shoes.
Take care of yourself.
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Reply to Segoline
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i'm sorry for not responding sooner, i thought i would receive an email when anyone replied, which i didn't, so good i just checked -- thanks for all your input

lets just say that we're dealing with a dysfunctional family here -- my sister did her best as a single mom after the kid's father walked, but for whatever reasons, these adult kids have issues of their own(don't we all?) -- maybe they don't see me as a very significant person, considering that they've seen me sporadically over the years, and we've all been scattered across the country -- who knows -- i'd like some support from them in this, but that may not be coming

one thing i will need to be careful about is that my role with my sister has always been to "rescue" her -- and she does not want to be where she is -- but when i did research online, this appears to be a good facility(my career was in health administration)

thanks again for all your support, it really was helpful -- i'm getting over the initial shock and am beginning to see the direction to take to do whats best for my sister, myself, and my family
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Reply to roky1141
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Hopefully since you’re flying, you’ll be able to make a few daily visits to see her. You’ll know a lot more after day 1. Definitely call the floor nurse ahead...but my observation is that most residents are at their best from about 10-2, but verify that in your case. You could make your first visit maybe just from 10:30 to 12, just to get a lay of the land, and check out the activity calendar for your remaining days. Maybe the next day you could bring her lunch in and eat with her. Maybe you could go to an activity with her, or just sit and chat.
If you’re worried that a visit may upset her, you could call the floor in the evening after day 1 visit and ask the nurse if there’s any negative change in your sisters behavior.

Good luck, I think this is a good thing you're doing. At Moms NH I’ve spoken to many family members to can only fly in to visit their loved ones occasionally, and although the trips are hard the reconnections are worth it. And then you’ll know her situation first hand.
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Reply to rocketjcat
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These rules from the Alzheimer's Ass'n really helped me in visits with Mom.

Never reason, instead divert.
 
Never shame, instead distract.
 
Never say “you can’t,” instead say “do what you can.”
 
Never command or demand, instead ask or model.
 
Never condescend, instead encourage and praise.
 
Never say “remember,” instead reminisce.
 
Never say “I told you,” instead repeat.
 
Never lecture, instead reassure.
 
Never force, instead reinforce.

From me: It can be better to lie. As in, if a close family member or friend has died, and your sister asks after them, you might not remind her of the death.

My mom forgot that my brother died, and she asked how he was. I told her he had died, and she became very upset. The nurses said it was better not to "remind" her, as she mourned all over again, plus was sad she forgot.

But, there are also good times, laughter, and jokes. Cookies and cocoa are great fun to share.
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Reply to BethandDan
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jacobsonbob Feb 7, 2019
If asked about someone who has died and the person whom you are visiting had been told about it in the past, you could simply say that the person "is about the same". This worked when my great aunt asked my mother how her sister and BIL [my mother's parents] were, and this great aunt had been to both their funerals. My mother simply said "oh, they're about the same" and the conversation just went on to another topic--and my mother's answer was completely truthful!
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Beginning stages of dementia doesn't mean she's going to be very different, yet she may have had a small stroke or some type of neurological shift that cannot be medically proven.

Don't make it brief...
Stay and visit her as long as you can...
I'm sure she'll appreciate it even though she's adjusting to a new environment and experience.

Bring her favorite foods or treats (that always works on my dad to brighten his day).

I'm a bit surprised by the children's lack of communication with you, especially since they must know you two keep in touch. That sounds a little fishy to me. I would talk to them directly as well and ask them why you weren't told, and to please keep you in the loop of developments.

Love to you both!
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Reply to Savitaa
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Please go and enjoy the time with your sister. If you know anybody in the area, maybe schedule yourself a coffee break, to help with your stress level, which most likely be high. Agree, see about getting a HIPPA release signed, on file. Your sister, like a child, needs a village here. Suggest if family living nearby, be careful as to not intrude on their visits with her. Time for you, and hopefully they will respect that. Definitely call ahead to let staff know you are coming into town. I know, as the disease progresses, visits get more difficult. I was fortunate to be able to visit my paternal grandmother, last time, with two sisters with me. We had a Royal good time, enjoying her for who she was in the moment, instead of mourning the person taken from us. If she has made any friends at the facility, it’s good to encourage her to take part in activities, to help fill her days. As for family, the best approach, when you do speak, either at a visit, over the phone, whatever, is to reassure them you love your sister, and will understand if they want to take a break from visiting while you are there. Graciously indicate if they come by during your visit, you love them, and would welcome their visit, if that’s what they want. Acknowledge and appreciate all they do for your sister, even if it appears to be not as much as you would want for her. She is their mother, and they are new to this as well, so they may not be as gracious as you wish. Get to know the staff, a bit, while visiting, and thank them for giving sister good care. This sets up a positive relationship with them, for the sometimes rocky times ahead. Especially helpful when they call you about problems that crop up, if you get that HIPPA release.
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Reply to Girlsaylor
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