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)?
Enjoy your visit and have a great time.
www.huduser.gov/portal/periodicals/em/fall13/highlight1.html
Aging in Place
The overwhelming majority of older adults prefer to age in place, remaining in their current homes or communities. Most seniors — 93 percent of Medicare enrollees aged 65 and older in 2009 — are already aging in place in traditional communities.27 But as Robyn Stone, executive director of the LeadingAge Center for Applied Research, puts it, “Most people are doing that until they aren’t doing it… it’s only when they reach either a crisis or a change in their condition or functional status or in, many times, their family support” that they can no longer remain in their homes.28 Such a crisis or change often happens after age 85. In 2009, only 7 percent of Medicare enrollees between the ages of 75 and 84 resided in long-term care facilities or community housing with services compared with 22 percent of those aged 85 and older.29 The aging-in-place initiatives that successfully keep seniors from entering institutional long-term care facilities will likely be those that target this most vulnerable and high-need group.
In tension with both the strong desire to age in place and the reality that many already do so, many seniors feel that their current homes are not well suited for aging. Slightly less than half of the respondents to an AARP/Roper Public Affairs and Media group of NOP World poll reported that their home would not fully meet their physical needs as they age.30 A home environment that does not meet physical needs — one that lacks a bathroom and bedroom on the first floor, for example — is just one of several barriers to aging in place. Community features, housing affordability, and accessibility of services all contribute to the ability of seniors to successfully age in their current homes and neighborhoods.31 Several current initiatives aim to improve home and community environments that are ill-suited for aging residents as well as increase the range of affordable housing options. To the extent that these efforts can succeed, housing can be a platform for accessing needed medical and other services that facilitate aging in place.
its been a very busy 24hrs -- with a release signed i was able to get info about her condition -- after speaking with the charge nurse, it would appear that she is in very early stages, no problem with going out to eat, an all day visit, etc. -- also, someone must have alerted her kids to my contact with her, and both of them have now responded to me -- it certainly seems they were on the defensive, and once they realized that i am not coming there to "break her out", all is well(although their failure to contact me in the 2 yrs she has been there is not ok)
Listen to her. Listen to everything she says. Be supportive and compassionate. Be yourself. she knows you so don’t be phony. If she does have dementia she should be on some low-dose medication for it. Who has the power of attorney? I mean how involved do you want to get in caring for your sister? Some family members are controlling, some family members don’t want any responsibility, it’s going to be up to you. If you love her, be there to the best of your ability. Check out everything is right and appropriate for her. If it isn’t, then fight for her. I don’t know you so I’m not accusing, but some family members turn a blind eye while others destroy somebody’s life. If you love her don’t let that happen. Bottom line, love her. Care for her the way you would want someone to care for you.
I’m sorry to hear about your sister. My mom was diagnosed with vascular dementia when she was in her mid 70’s and we watched her decline over many years.
If your sister wants you to come, I say go! It was important for me to talk with my mom in the early stages of the disease things we needed to share with each other, and how much I loved her.
Be in the moment with your sister, provide her with things she likes (for example..my mom loved books so I would read aloud) Your sister may have so many emotions knowing of her diagnose so be prepared for this and reach out to your own support. I journaled for years about my mom. It was my comfort and support.
Good Luck and know you are not alone.
MELLIE
Sounds like she is in the early stages, so be patient... expect some repeating of what is on her mind, or what recently happened in your conversations together which may show up in person. Use humor... laugh. Take an "exploring tour" of the hallways in the facility with her if she is up to it. ( walker or w/chair ) Be honest with her and don't pull away as your friendship and support are important.
The facility won't tell you much of her condition by law, but you could ask the staff as what they think that she could use for you to get her to help out, such as socks, leggins (I live in snow country), Depends pull-ups, shower gels or lotion, etc. for her to use.
Memory units do not allow a lot of things... (depending on the facility) such as no live flowers or plants, only fake, silk kind... no perfumes, room sprays or wall plug-in scent things, no hair dryers, curling irons, or pointy things like scissors or nail files... for all of the resident's safety. While, assisted living places do allow all of those things. Ask ahead of what they allow, if you can.
Yes, that place may feel like a 'prison' to your sister, but you can reassure her that it is for her BEST interest right now, to keep her safe because she is loved. You could let her know that you have challenges as well (unless you are significantly younger than she is and have no issues whatsoever) and that you like the place where she is at... as that may give her some comfort. Your visit should not harm her in the least... you could even ask her that.
Ask her what activities they have to offer (there usually is a monthly newsletter or info sheet around)... see if there is some activity going on when you are there to check out with her.
You have what her kids do not have... a long history with her as your sister. Bring photos... reminisce.... (there usually isn't too much table space at facilities, but a smaller framed photo of the two of you that could be hung near her bed would be nice.)
You will know more when you see her. Also, her kids really don't need to know (unless she has something scheduled and will be out of the building...) if you don't wish to tell them... that is your choice.
Wishing you all the best ~
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.
Btw, when my aunt comes my mom is thrilled, and yes they hatch an escape plan! In the end they mutually plan for next visit. Yes, it’s very hard on aunt but my mom loves her sister dearly. They talk on the phone everyday.
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!
Your Visit will determine how she feels that day, As to how long you See you should say. Don't Over think it, Just book up that trip soon to get a good price.
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
Most don't want to be in a facility. what a terrible way to end one's life.
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.
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
I agree with everyone. After dinner would not be a good time. They start sundowning. Plus staff is getting them ready for the night. Early morning staff is trying to get them up, dressed and to breakfast. I would do lunch with her. You will be charged for your meal. Ask if you can sit away from others so you can have a nice visit. There is usually a common area where people congregate so u can sit and talk. Some have court yards. Have her take u on a tour of the place and her room. If she naps, you can leave then. Before you go, check out the area, you may be able to do some sightseeing.
Music you enjoyed in your youth can also help make an enjoyable visit too.
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.
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?
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.