Expert: Mary Gordon - 2/22/2011

Question
I have been away from my family for 30 years and have come to what seems to be a disaster in the making...  
My Mother has middle stage Alzheimer's Disease, my sister's - (who is mum's caregiver)-only child is getting married in Chile and they want mum to attend.  In addition to the 12 hour flight, there will be a stop over of 4 hours in the US.

Mum finds it difficult to socialize and mostly stays at home, she creates a great fuss if she is "forced" to go out, more often that not she misses her once a week day program!  My sister thinks she will be just fine, and have made no back up plan should mum decide on the day of the flight that she is not going.

My sister isn't listening to me, but simply expects me to pick up the pieces every time she drops the ball, there isn,t even a power of attorney in place for mum.  What do you think about the trip? ANY Advice?

Answer
Hi Dee, if you want the honest truth, I think this is doubtless a kindly intentioned idea, but not a practical one - either for your mom's comfort and serenity, or for your sister and her daughter, and their ability to focus on enjoying a milestone day.  I suspect your sister is viewing your mother as the person she was before the illness and has not come to grips with how fundamentally different her needs are now. She looks like the old mom, she has some of her memories, most of her personality and mannerisms, she looks the same - but she is profoundly different, and all expectations of what she might enjoy, or what would be best for her, have to be based on who she is now, right now.  Your sister is really planning for what she wishes was true, rather than what is reality now.

A visit to a family member's home or even an event held in the same town as she lives is much more manageable than an out of town (never mind out of country) social event with many strangers. It is much less stressful - the environment is sheltered, she is with familiar faces, everyone understands her impairments, and the family has the flexibility to accommodate her - to let her retreat and rest if she needs it, to back off and change plans if an activity is too challenging, or to take her back "home" if things are overwhelming for her. An event  in another country, full of people she doesn't know - this is a whole other level of challenge. It's in the ay-yi-yi category.

A wedding is an exhausting and chaotic event, particularly one in another country - never mind after a long trip with layovers. She will be totally out of her routine and environment, surrounded by strangers, conversations she can't follow, and a riot of bustle and activities swirling around her.  All of this is very, very difficult for a person with memory and cognitive impairments. Her ability to cope with all of this and understand what is happening is very limited.  A person in mid to later dementia is basically just hanging on with their fingernails to get through a normal day.

In terms of your mother feeling in any way excluded if she does not come along. - I don't think this will happen. My mother in law's sister passed away when she was in mid Alzheimer's. She was still well able to carry on social conversations, and with supports and supervision was fully included in all family events around her sister's illness, passing and funeral. In very short order, she entirely forgot that her sister had died, even thought this was a hugely emotional event. She asked why her sister hadn't visited, and stunned by the question, we foolishly reminded her that Kay was gone. My mother in law was immediately grief stricken anew as though she'd never heard anything about it, and furiously angry with us because she was SURE we'd purposely and cruelly excluded her from everything. So, even a traumatic event had not stayed in her memory at all. And then, a few days later, she was again asking us where Kay was.

I would not be afraid of your mom being offended in any way if the family decided it would be better for her to stay in her secure environment. Her grip on time is very hazy because of her short term memory impairment. There is no guarantee she'd remember the event afterwards, or even be sure who her niece is. If it could be arranged, she could enjoy a video or pictures, a piece of cake, or having the bride and groom come for a visit later on.  By mid dementia, you can usually distract and divert the person on to a new subject if you think they are getting hung up on a particular idea.

If they are are seriously considering taking her along, it would be prudent to plan in a similar fashion as for the attendance of a very young child. The long plane trip with layovers is going to be EXTREMELY difficult if your sister is alone with your mom - I hope she has a second person traveling with her who can spell her off. She will need to be prepared for the relentless  24/7 supervision your mom will need (your sister should escort her to and from any washroom visits so your mom doesn't get lost or "escape").  She can't leave her alone anywhere for even 5 seconds - for example, if she wants to buy a sandwich, she will have to bring your mom to stand in line with her. Your sister will also need to be prepared that she may have to  bail out of planned activities and events around the the wedding if your mom is not doing well. It will be a full time job for her, so the wedding may not be the relaxed and enjoyable occasion the mother of the bride might hope for.

I'd also worry about your mom getting agitated and upset on the flights, because it is going to be exhausting, disorienting and stressful. Is your sister really prepared for this? I even wonder about your mom being able to use the bathroom on the plane - it's too small for two people, and it's very confusing in there. Your sister would be well advised to carry a total change of clothing for your mom in her carry on. Even being able to sit still on a plane that long. Yikes.  

I can recall by mid AD, we needed two people to wrangle my mother in law if we went anywhere at all in public with her - even to a restaurant or to an appointment. For example,  you couldn't get her to sit on a bench while you brought the car around and trust that she would stay there for 2 minutes. If you were in a restaurant, and you got up to use the washroom or pay the bill, she'd forget where you went and wander off to find you.  It's dangerous - and really - it is like supervising a toddler who doesn't recognize dangers and can't be trusted to stay put alone. Your sister will have to bring her everywhere she goes.

If your sister does insist on bringing your mom,  she would also be wise to arrange for a family friend or hired caregiver to be with her at all times for the ceremony and reception and any other events. This will free up your sister to enjoy the events and socialize - otherwise, she will have to stick to her like glue to supervise and support and be prepared to leave all and any events if she is not doing well. If your mom has a full time minder, that person can not only keep an eye on her and escort her so she doesn't get disoriented (including to the washroom), but also be there to remove her from the scene if she becomes agitated, or to take her back to wherever they are staying if she appears to be getting overwhelmed and tired out - and of course, sit with her until family returns so she is not left alone.  I would think it would be very, very difficult to concentrate on my daughter's big day, as mother of the bride, if I was also worried about my mother constantly.

Your sister has to be realistic about your mother's condition and her expectations both of your mom's abilities and how challenging this type of event may be for her. There are plusses and minuses to everything. My personal take is that although they want to bring her for the most kind and well intentioned reasons, this desire may not be the best idea given who she is now. Is she going to enjoy and understand the event, and recall her inclusion, or is this going to be difficult and stressful - and distracting - for your loved ones trying to share your nieces big day?

Your sister has to be a flinty eyed realists about what she is really prepared to deal with, what your mother's limitations are and what everyone will get out of this. If this ends up about getting some pictures, it won't be worth the stress.
Here is a good article about what your mother is going through
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

It is one horrible disease, and bless all of you for wanting the best for her. She is a lucky woman.

Congratulations on the coming marriage of your niece. I'm sure she has fond memories of her grandmother.  You may not be able to influence what your sister decides, so all you can do is give her your thoughts and ideas, and stand back and not let it upset you. She's the one who is going to be in the soup.

Thinking of you. Hope this helps

Mary