She experiences sundowning and occasional incontinence. We are going on a family cruise in about a month. I'm hoping that the family will help with caregiving, but I anticipate problems. She often likes to sleep during the day as well as at nighttime. Do I dare leave her alone in the cabin? She does not currently want to wander when alone at home, but she can get scared when by herself.
You'll need a handicapped bathroom because that gives more maneuvering room for those who help with showering and toileting her. You cannot leave wife in the bathroom alone because she might throw things into the toilet that shouldn't be there. Even if she hasn't done such a thing before, she's not going to be in her safe space, and you never know what they're going to do. Toilets on a ship are different from those in our homes. She may be scared of the noise and action. Also, your wife should be wearing disposable underwear if she has accidents. That's a lot to dispose of on a ship, where amounts of trash and garbage are a huge problem anyway. Accidents in public are another thing. Other passengers might not be understanding about the smells and visual aspects. They're there to have a good time, not to put up with sickroom issues.
Expecting family to help on a ship is unrealistic. They have no idea what needs doing, and family often isn't helpful on dry land much less on a ship.
Years ago I was part of a friends-and-family group on a one-week cruise. One of the older men had Alzheimers in an early stage. While his wife was in the shower, he left their room and started wandering around the ship asking people where Margaret was. It ended well but could have been disastrous. What if he'd somehow climbed into a lifeboat and no one could find him? What if he'd leaned too far over the railing?
Please don't take your wife on this cruise. She isn't as she was before, and it's not fair to her to expect her to handle situations as if she were still normal.
She urinated on the beautiful hardwood floor in the ship's gorgeous spa, much to the horror and surprise of everyone present.
The next afternoon she fell in the dining room and had to be evacuated from the ship to a local hospital. I had to frantically pack our belongings and leave the ship with her while we were at port. The ship sailed on without us.
I learned my lesson the hard way.
What an ordeal that must have been for you.
Taking a person with Alzheimer's out of their usual surroundings and disrupting their routine is always a detriment to them and it also causes setbacks in whatever level of independence they still possess.
Your wife will not enjoy herself on the cruise. What will likely happen is she will grow increasingly scared because she's away from her normal environment and this will cause her to panic. The panicking will then cause some regression in her cognitive ability. This will also lead to her becoming more incontinent. Why put her through that?
Spend whatever it would cost to bring her on a private caregiver who will stay with her in the home while you are away. Or put her in a care facility for a respite stay (Medicare pays for up to two weeks a year respite in a care facility). Then hire a private caregiver to go daily to visit her while she's there.
I think this will be the best for you, her, and your family.
I am probably pessimistic, but I like to think I'm a realist. I suppose it depends on one's POV.
As her husband and carer, it is up to you to ensure that your wife's dignity is maintained. Please consider if that will be possible when you are taking your wife into a public space for an extended period of time.
Your wife has occasional incontinence and she is sundowning; these could expose her to unwelcome attention in a public space. Also, having family members assist with looking after your wife could mean that they will be present during situations that, before her dementia, your wife would have been loathe to be seen in.
Following spinal surgery, when my mobility was severely limited, I was resigned to the fact that I needed nurses and carers helping me with intimate tasks - toiletting and bathing - but I would have been more than humiliated if other members of my extended family had been present.
Professionals know how to preserve one's dignity, and this is paramount even when the person being assisted with personal care has diminished awareness.
Let me simplify things here for you. Do you really want to have to deal with a scared, hysterical, incontinent Alzheimer's meltdown in the middle of the ocean? Or on the flight to get to the ship?
Please keep in mind that only a few months ago a plane in fight had to make an emergency landing and be grounded because someone was incontinent in the aisle.
Granted the person 'couldn't help it' but still. Your wife will not be the only person on that flight or ship. There will be people like me whose time off is precious and very limited. I work six a days a week, I don't deserve to have my vacation ruined because a flight has to be grounded because of incontinent or because some demented elder or child is having a meltdown. Please consider everyone else taking a vacation on that plane and ship.
Why should your family (that paid plenty for their cruise tickets) be even expected to help with her care on their vacation? Did any of them offer? That is selfish to even expect of them. If she likes sleeping all the time, why on earth bring her?
Arrange respite care for her (so she won't be alone) and take your trip. Tell her the house has termites, you both have to leave a week while they tent and spray it. She is staying in a "nice hotel" while you must stay behind to supervise the repairs. You said yourself she will sleep most of the day anyway. The time will fly. You will have a well deserved break.
Do the right thing for EVERYONE. Bon Voyage!
If you aren’t sure family will help, they may not know how much her illness has progressed. Not a good sign.
You may think she’s safe alone in the cabin but remember, she is in a whole different world… she’s never been there before and it may frighten her to be alone in a strange place. What will you do when she wants to go home immediately? Will she be able to enjoy dinners and all the other fun stuff on a cruise?
I also vote “don’t take her”. I understand it’s maybe a last hurrah before it gets really awful…. But this is not going to help you feel better when she can’t enjoy herself and is afraid.
I was invited to my niece's wedding 8 hrs away. My Mom had been living with us for 20 months and in the 6/7th stage of Dementia. She was incontinent. She only lasted about an hour when we took her out, ready to go home. I knew she would not make a 8hr drive and she would have no idea what was going on at the wedding. I wanted to have some time away with no worries. I checked out a local AL and they agreed they would take her in Oct. I was told though, a 50% sale was going on for room and Board. This meant Mom had enough money for a year in the AL with hopes of her house selling. So I placed her then, August. She acclimated very well. For me, it was a good decision and I was able to enjoy my nieces wedding knowing Mom was safe and cared for.
If you would like to go, place her in respite for the time you are gone, she will be safe and cared for.
As for other saying they will help, I would neither depend on them or put them in that position, they are going cruising to enjoy themselves not care for a person with dementia.