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.
The cruise ships ought to add respite care right on the ship !!
Looking forward to hearing how the trip went. I'm sure it was, shall we say, eventful.
If you get no commitment from family, you might want to see if there is still availability for another room and find a friend that might want to go too, for sole purpose of helping you out. You pay their fare.
My husband's mom had thrown away her state ID since she was no longer driving and we found out the day before a domestic flight. So always hold onto the LO's important stuff. She kept packing and unpacking her suitcase before and during the trip.
My mom's last trip for me was when we discovered she was beginning to be incontinent at our rental with brand new mattresses.
You hire a caregiver to be with her at all times (when you / others are not).
If you know she 'gets scared when by herself,' I question why you do not know the optimal / necessary stance to take.
I question if she 'should' go on this trip considering her brain chemistry and your knowledge of how to handle critical situations. Get a CNA to accompany you on this cruise. She could easily / possibly get very frightened of anything ie the water, the waves, the motion on the ship. Do you have a back up plan if she 'sees things' that are not there / not happening? If she gets very frightened? Do you have / have you discussed medication management with her MD?
You need to really think through this trip.
You need to put her needs / welfare FIRST.
You need to educate yourself about Alz / dementia.
You need to speak to her MD.
Gena / Touch Matters
I would NOT take someone with Alzheimer's on a cruise ship!
Maybe - if she has round the clock supervision and care. But, really, who wants to do that while on a cruise?
No, Do Not leave her alone. Especially in a strange place. She is likely to not recognize her surroundings and get scared. She is better off at home with a caregiver, or a short term stay in a memory care center, while the family enjoys the cruise. Take lots of family photos to share with her when you return.
But God forbid you found yourself in any of the scarier cruise scenarios - bad weather, an emergency drill, illnesses on board, taking her off ship and missing the ship, power outages for examples - you are already playing with fire with just the change in location - how would she handle much more difficult situations - especially when she can't get off of the ship to her home? What if you found yourself in an emergency situation where she needed to be sedated?
I guess my point is - is it worth the risk?
I had tickets for a cruise when my husband displayed unsafe moments, wandering, etc. What to do with the ticket? I took him on the ship anyway, but had to keep heavy eye on him. Check with the cruise line, if there are any caregivers on the ship to see to him while you are out having family time and enjoying the shore. Sometimes they do. I found a place in my town where I placed my husband while I went on the cruise. We had already paid for the tickets so I took my sister with me. I placed my husband in a facility for the 3 weeks or so that advertised this kind of "baby sitting" care for dementia patients. It worked for me. He didn't even know I was gone. But the facility told me he waited at the door a lot, and looked out the window for my return.
I had no one to take or buy the tickets from me, so I arranged for this type care. Call several care companies to see what they offer. If you can't find any, call the Alzheimers group and they may have info for your area. on places to put your loved one while you take a break. I did that. Worked. Yeah, he stood by the window looking for me the whole time, but the facility was great. Escorted hm to a dining area for people in same situation,. Took him for walks and to play games or watch a movie. He really didn't even know I was gone. I had the tickets, didn't want to waste those thousands of dollars, took sister, and all worked out well.
At home she is comfortable, she knows you and her surroundings.
let's not even get to the cruise ship yet...the trip to the airport will be one thing. Getting through security (if you do go please arrange wheelchair help to the gate) may be a challenge then all the people at the gate, the flight, once those doors close just hope she remains calm. (If you decide to use medication to keep her calm do know that can make her a fall risk) then reverse all this once you land and get transported to the ship.
Once on the ship the confusion, the people, the lights, noise...very confusing.
If you do leave her in the cabin, (and I would hope you would not leave her unattended) she will be confused with the new surroundings.
She will want to go home.
To ask family members to help in caregiving is not fair to them for their vacation.
You could bring a hired caregiver with you that their sole job would be to care for your wife. but that is an expense to you and it may be difficult to find a caregiver that would be able to do this (passport needed) and it would be very expensive.
I would find a Memory Care facility near you, check out a few and do a Respite Stay of 1 or 2 weeks however long your trip is, make the respite at least 2 days longer this way you can bring her the day before and pick her up the day after you get home, gives you a chance to pack and unpack.
You deserve a break. Use this as a way to get a chance to relax.
She was fine, just a little banged up. But my point is this. Do not simply place her in a facity she is unfamiliar with and leave on vacation. If she is ever placed in a facility, wait about six months until you are confident she is mostly adjusted. Then you could probably get away with going for a long weekend yourself.
Also, I don't think that you should feel bad about not being on the end of a phone 24/7; carers need rest and that means not being constantly on-call.
"I'm hoping that the family will help with caregiving, but I anticipate problems."
Yes, you will have problems unless your family has a strong desire to share the responsibility and support you all the way (which is unlikely in most families). Your family will be on vacation and may only help when it is convenient and probably not available when you need/want it the most. I did not want to hamper our son's enjoyment while wanting my husband safe and not left out of too much so I was caught in the middle. Unfortunately none of us were able to totally enjoy ALL the fun and adventure that we could have had. The question you have to answer first, do your family members already step up to help while you are not on a cruise. You will be the only one sleeping with one eye open and tuned into what she may need when both eyes are open. It can brew a lot of resentment among the family because they can't understand if you won't leave her asleep (or awake) in the cabin and you don't understand why they won't take turns to give you a break.
"Do I dare leave her alone in the cabin?"
As someone said, a cruise ship is not always totally stable but often rocks... which can feel very peaceful or upsetting to someone who can not understand why it is happening. The cabin doors are not the widest and the thresholds are a several inches high and can result in tripping. I made sure we had a window because as I was concerned how much time we would need to stay in the cabin. I would definitely not leave her alone because should she want to find you, the ship is a huge place to get disoriented and strangers not wanting to be involved. My sons and I often had to focus and think clearly to find our way around going and coming back to our cabin. The excursions were tiring which made my husband want to stay in one place when we returned... meaning someone had to stay nearby... meaning mostly me.
I would love to go on one again with my husband, but memories of responsibility come flooding back and I know we don't have the money to risk either or both of us not being able to enjoy the experience. I now have the added stress of "what ifs" due to his dementia and the biggest concern is if something happens and we need to return home before the cruise is over. Yes, cruise lines are very capable assisting someone with emergencies but I'd rather not have to wonder what will they do for us.
If after all the consideration, you decide to take her along here was the best part of our trip. When we saw we would be in line quite a while before boarding, I went to see if there was some place I could sit with him while our sons held our place in line. The crew member I asked, went and found a wheel chair. I thought we would simply use it while we were waiting. He actually took us (and our sons) to the front of the line, handled the registration, then escorted us all the way to our cabin! At the end of the cruise, the same person escorted us through the check out process to leave the ship.
I continue to wonder how the OP, rhcarle, is doing. What did he decide to do? Maybe he and the wife jumped ship in Tahiti and they're living on Pitcairn Island where there's no internet.
Our cruise begins at the end of June. It is a 7-day cruise to Alaska in a cabin with a balcony. The adjoining stateroom will house my daughter and another person who I asked to come along specifically to help as a caregiver. That was one of the suggestions that was made on this forum.
No flights are required, just a 2-hour car trip to the cruise pier. We have been cruising many times in the past, so don't anticipate my wife being upset by being in unfamiliar surroundings. She gets out frequently when I take her on errands or shopping and she deals with that nicely.
I will let you know how things went once we return in mid-July.
:)
He was not then incontinent. Your taking a shower is the difficult part because spouse does not stay put. So, work something out! I opened the bathroom door which blocked the exit door.
Despite all the grave concerns of others, there is no one answer for all cases. You are in the best place to judge your wife's issues.