My father has lewy body dementia.. Can't see, is wheelchair bound, has some horrible hallucinations (little people w/ big black eyes that want to kill him and my dogs), and his short-term memory is failing a bit..
Here is my dilemna.. He wants to go on vacation.. Ideal vacation spot for him is Florida.. This would mean either 24 hours in the car or a 2 - 3 hour flight.. Part of me wants to take him, but realistically, I wouldn't be able to handle him on my own..
Has anyone travelled w/ a loved one who has dementia / AD..? Should I take his caregiver..? Find someone in the vacation state..? It's just me.. Torn..!
Just want to say that you need to delegate the responsibility that you are under to some other sources: adult daycare, meals on wheels - and what about assisted living? It is obvious you are burned out and miserable - but there are options and alternatives. Perhaps you can go to counseling at your church if you go to one. Pastors and counselors usually have resources to offer. That's their job! I hope that you can find some help - keep searching and pray that God will lessen your load and open the door for some relief and alternative living arrangements for your mother and step-father. Taking care of family members doesn't always mean in your home.
I live in the Washington DC metropolitan area, and I was able to drive my mother to the Ocean City, MD, and Rehoboth Beach, DE beach on Mother's Day weekend. I was (frankly) terrified to do it, but my wife was visiting her mother out of town that weekend, and I didn't know how much longer I would be able to take that trip with my 83 year old mother with Alzheimers. It was about a three hour drive each way (because of when I left and was off-season in May, luckily it was a warm weekend (thank you God).
So very early on Saturday morning, after she had her medicine I took her out to the car for a drive (which I had packed the night before). We sang songs in the car (her favorite activity) and I kept her distracted. We stopped for MCDonalds, decaf coffee (for her), and made frequent bathroom breaks. Since we got there very early, I was able to basically sail right through the Chesapeake Bay Bridge (thank you again, God), and we arrived in Ocean City before noon. I drove down to the beach and parked in a handicapped spot and took her for a walk to stretch her legs. She was surprised when we were at the beach, and she thought the ocean was pretty, but was a little afraid of walking on the sand. We walked on it for a little bit, and then we turned around and left in the car going north to Rehoboth Beach, DE.
The nice thing about Rehoboth Beach (which is a lot smaller/less people) is that it has a lot of hotels on a smaller boardwalk. OC does too, but a lot of families, kids, noise. So we went to a hotel parked, and we were able to leave the hotel and walk directly on the boardwalk. She liked that because it was flat and solid (not like sand). We walked a bit, sat a bit on benches on the boardwalk. Then we got a diet coke, sat some more, then went back to the hotel.
Now yes Mom has lots of mental delusions, etc. One thing is that she knows a lot of people she sees. They are strangers, but she thinks they are not. God Bless. Some she thinks are in movies and TV shows. OK. In terms of hallucinations, they come and go, and we just try to talk around them. Yes, I am going to see another geriatric psych, but I am really sure how much we can do.
We stayed overnight and went back early on Sunday - around 10-11 AM.
Getting her to sleep in hotel room was a little tough. But we focused on TV and newspapers, snacks, and things "normal" for her routine. Nightlights, PJs, her pink bunny that she sleeps with, etc., etc. Her pajamas were hung up in the bathroom like they were at home, and in the morning her new clothes were laid out in the bathroom like at home. I tried to keep everything as "normal" as possible. Then on Sunday, we went downstairs, had some breakfast, walked on the boardwalk again, sat and watched the ocean for a while, then sat the other way and watched people on the boardwalk, bought her a new pair of sunglasses, got some sand in a medicine vial, got some shells from a store, and then we went home.
Sleeping was tough. During the night, she got up even more than at home; not EVERY HOUR, but almost. So I was pretty tired driving home (you might say "exhausted," but yeah, once again - so what.)
Once again on the way home, lots of bathroom breaks, distractions, songs, and before you know it we were on our way home.
Two hours after we got home, she forgot that she was at the beach. That's life with dementia. But for a while, she had a good time. Was it frustrating at times? Of course. Was she confused at times? Of course. But so what else is new, that's the story of every day of her life. But for a few hours/days she had some sunshine on her face and the sound of the ocean. It is really tough, but I am grateful to God that I could do it. I hope you can too.
If not the ocean, hey find a nearby lake or river. It really isn't the beach per se. It is the idea of having some "normalcy" that you are still a "person," not just a patient.
The next year, we took a trip to Branson for only 3 days. Once again we had lots of help--6 grandkids, a son and daughter and their spouses and hired a caregiver from a Branson agency before we left. We took our own wheelchair that trip, as he was needing it almost constantly.
I would never have taken him on any overnight trips without the help of several other people-hired and voluntary. If you decide to go, see if you can get a son, daughter, niece, etc. to go too. When you get there, plan your adventures according to your husband's abilities and do hire some help from an agency.
Enjoy!
Then there is security, those who are wheelchair bound cannot go through the metal detectors, thus the person and the wheelchair itself need to be individually pat down... if you Dad can stand, he will be asked to stand as the security check is easier if standing....
Call *TSA Cares* toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. Travelers may also request a *Passenger Support Specialist* ahead of time to help out at a checkpoint.
If it were me, I would take the caregiver to give him/her a nice *vacation* but work out the payment schedule ahead of time. My boss ran into a situation with his wife's caregiver's employer regarding hours to be paid.... my boss argued that the caregiver was given a vacation so no payment, and the employer argued the caregiver was on the clock 24 hours each day.
Sounds like maybe YOU need a vacation... leave dad home ; )