Expert: Mary Gordon - 11/3/2010

Question
Hi Mary,
my dad is in a long term care facility but is still somewhat cognitive and active. He comes for visits and is calm and pleasant around his family. He asks why he "has to go back - why can't he stay here" (at my brother's home) My daughter is getting married in two weeks and my mother would like to bring my dad to the wedding but the issues are: the drive is far (how would he fare?) how would he do staying overnight in an unfamiliar room (with my mother and brother) I should note that he does get somewhat agitated in the facility but not so when he is at my brother's home.
He mentions the wedding periodically and occasionally will ask my mom what he should wear to the wedding. This makes my mom think he knows about the wedding and would feel hurt if he couldn't attend. Please let me know what you think. Thanks in advance.

Answer
Hi Zoe, if you want the honest truth, I think this is a kindly intentioned idea, but not a practical one - either for your dad's comfort and serenity, or for your mother and brother's.

A visit to a family member's home, especially in the same town as his long term care facility, is much more manageable than an out of town social event with many strangers. It is much less stressful to visit a home - the environment is sheltered, he is with familiar faces, everyone understands his impairments, and the family has the flexibility to accommodate him - to let him retreat and rest if he needs it, to back off and change plans if an activity is too challenging, or to take him back to the care facility if things are overwhelming for him.

A wedding is an exhausting and chaotic event, particularly one out of town.  He will be totally out of his routine and environment, surrounded by strangers, conversations he can't follow, and a riot of bustle and activities swirling around him.  All of this is very, very difficult for a person with memory and cognitive impairments. His 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.

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. 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 deeply emotional event had not stayed in her memory at all.

I would not be afraid of your dad being offended in any way if you decide it would be better for him to stay in his secure environment. His grip on time is very hazy because of his short term memory impairment. There is no guarantee he'd remember the event afterwards, or even be sure who your daughter is. If you want, he could enjoy a video or pictures, a piece of cake, or having the bride and groom come for a visit.  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 him along, it would be prudent to plan in a similar fashion as for the attendance of a very young child. The long car ride may be do-able, because your brother is there, and between your mother and brother, they could likely  manage the 24/7 supervision he needs (your brother should escort him to and from any washroom visits so your dad doesn't get lost or "escape").  They can't leave him alone anywhere for even 5 seconds, and both of them have to be prepared that they may have to bail out of planned activities and events if your dad is not doing well. It will be a full time job for them, so the wedding may not be the relaxed and enjoyable occasion a proud grandmother and fond uncle might hope for.

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 or be trusted to stay put alone.

If they do decide to take him, they would also be wise to arrange for a family friend or hired caregiver to be with him at all times for the ceremony and reception. This will free up your mother and brother to enjoy the events and socialize - otherwise, they will have to stick to him like glue to supervise and support and be prepared to leave all and any events if he is not doing well. If he has a full time minder, that person can not only keep an eye on him and escort him so he doesn't get disoriented (including to the washroom), but also be there to remove him from the scene if he becomes agitated, or to take him back to wherever they are staying if he appears to be getting overwhelmed and tired out - and of course, sit with him until family returns so he is not left alone.  

They have to be realistic about his condition and their expectations both of his abilities and how challenging this type of event may be for him. There are plusses and minuses to everything. My personal take is that although they want to bring him for the most kind and loving reasons, this desire may be based more on who he has been in the past, rather than who he is now. Is he going to enjoy and understand the event, and recall his inclusion, or is this going to be difficult and stressful - and distracting - for your loved ones trying to share your daughter's special day.

You all know him best and what his current limitations are. Be flinty eyed realists about what you all are prepared to deal with, and what everyone will get out of this.
Here is a good article about what your father 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 loving him and wanting the best for him. He is a lucky man.

Congratulations on the coming marriage of your daughter. I'm sure she has fond memories of her grandparents.

Hope this helps

Mary