My sister who is several years younger than I has been diagnosed with dementia and apparently is getting worse by the day. Any advice? - AgingCare.com

My sister who is several years younger than I has been diagnosed with dementia and apparently is getting worse by the day. Any advice?

Follow
Share

I live in Canada and she in U.K. we last saw each other two years ago and she didn’t know who I was. She looked at me with disdain most of the time and would not allow me to as much as make her tea. The day before she and her husband left for home she literally verbally attacked me and had such hatred in her eyes and I was so shaken I couldn’t be near her (this was NOT my sister). My husband drove her and her husband to the airport. They called me from the airport and when she spoke to me she was “my sister” again. I have condensed this incident and I am looking for advice. We are now going to visit her and her husband and we always stay at their house. By the way I do make regular phone calls, some I sense she doesn’t know me but others she is fine. Should we find other accommodations? I don’t want to offend anyone but I want to do what’s best for my sister. Her husband thinks she’ll be fine as long as she is kept to a routine. Any advice appreciated.

4

Answers

Show:
I would say it is probably best if you don't stay in the house given the interaction when she last visited you.
You will just have to test the waters and see how she reacts to your presence. As she is in familiar surroundings she may be just fine, there is no way of predicting the outcome.
Certainly ask BIL if there is anyway you can help but don't be suprised if he wants you to do things like shopping not laundry.
When she visited you in Canada there were lots of things that may have unsettled her. She had made a long plane trip, probably had jet lag and was in a strange environment, coundn't remember how to turn on the taps in the bathroom. (I struggle with strange bathrooms too) All of these things she blamed on you , the strange person who had taken over. She may not like you interacting with her husband who she considers her property. So many unknowns to deal with so try not be upset about anything that happens during this visit. it is not her fault and she had no reasoning power or control of her actions. try and enjoy the visit for what it is - a loving reunion between two siblings who have not seen each other for two years. If you decide to take them out don't go somewhere new. Ask her huband where she enjoys going even if it is fast food and you really want to that them to a fancy restaurant. Take everything slowly and keep to a routine.
This is about her and not you so don't let hurt feelings get in the way. Your sister is slowly moving into a new world of her own and there is no way of bringing her back so all anyone can do is keep her safe. There should be no guilt, no one has done anything wrong. learn all you can but everycase is different and the disease moves at it's own pace. Above all enjoy your visit to the UK and do some fun things for yourselves. take BIL with you if sister is safe to leave in someone else's care, he needs a break too.
Helpful Answer (2)
Reply to Veronica91
Report

Notmysister,
I'm sorry for your sister and your family.

If it were me, I would remember the past visits (both at your home and hers), then ask your BIL how she "is". Is she easily agitated? Does she take anxiety meds? Is she frightened or violent or more confused with other family members or friends coming in her home?
I'd take it from there. 

Now, if YOU guys want or need an escape during tense visiting moments, then a hotel or Bed and Breakfast close to their house would be ideal, if it's in the budget. You also mentioned you got very upset after she verbally attacked you. It may be better for you to have a "safe place" (hotel room) to be upset or even cry. You could excuse yourselves, saying you'll come back in a few hours, if need be.

Also, if she's up all night, (which many dementia victims are), you wouldn't have to be also. And poor BIL wouldn't have to worry about your accommodations with all the other things he's doing for her.

Take cues from them both. Be attentive to what they're doing. Is she yawning at 7:30 pm? Maybe he gets her ready for bed then?

I would "play it by ear" (your visit). You may not get to "go out" to shows, dinner or other outings like you thought. Go visit them but have no schedule.

It's really all about what keeps her mentally comfortable.
Helpful Answer (2)
Reply to SueC1957
Report

I would make other accomadations. If she has declined since your last visit together, it will be worse now. You will be strangers in her house. This will definitely effect her. She may show some anxiety even be violent to a point. Dementia is a weird decease. She could be happy one minute and lash out the next. I think you may put pressure on the husband. It's hard taking care of a Dementia patient. I think paying a visit and feeling her out would be good. If she gets irritated, then you can leave. I would ask the husband if there is anything you can do. Washing dishes, making beds, throwing in a load of laundry could be a big help. Bringing lunch or dinner. If u go out, go somewhere without crowds. Crowds are too overwhelming for Dementia people. Don't argue with her. If she says your Jane and ur Mary, correct her but if she insists ur Jane than ur Jane. She may know u as someone she knows but not a sister. Let her carry the ball. Go with the flow. Their dreams, TV and reality become all and the same. Here's a poem that explains it pretty well.

alzheimers.net/2013-08-05/do-not-ask-me-to-remember-poem/
Helpful Answer (3)
Reply to JoAnn29
Report

I’m sorry about your sister. I’m glad you will get to see her and extended family.
Routine is very important. It might be a good idea for your BIL to give you a written guideline on what her routine is so that you can plan your days accordingly. By that I mean don’t plan a dinner for 8 when she routinely is in bed by 7.
It would be helpful for you to read about dementia. It would be helpful to know things like not asking too many questions and also how to answer questions that she might ask you that would be upsetting. Like asking about going to see her mother who may have been dead for 20 years. You would let her know that you plan to go tomorrow. That sort of thing. It will be determined on how you find her. Some days are better than others.
Last week I visited a dear friend who has just been placed on hospice. We had a wonderful visit. She knew I was someone who loved her but she did not know my name. Just meet her where she is and enjoy every moment of being with her. If you are like me you will be excited but on guard that you not upset her. And by the way, she might know you better from on the phone than in person. So try both while you are there. We do change. My friend has pictures at her house where we are all 40 years younger. I’m not sure I would recognize me either. If you have photos of the two of you in younger years that might be appropriate to take along. Enjoy your visit.
Helpful Answer (4)
Reply to 97yroldmom
Report

Related
Questions