Plane trips are now in the past for us, but my wife and I can and still do take car trips. The worst part of each trip, however, used to be the pre-trip packing beforehand ... it could take days ... and the daily morning and nightime hotel rituals when Clare would say that she forgot to pack this or that, couldn't find this or that, etc. Some women in my support group do all the packing for their AD husbands before they travel and that has worked for them, but I can't do that for Clare. She is in stage 5, but still too aware, and stubborn, for me to get away with that! However, on our last trip, I told my wife to place on our bed all the clothes she would need for 11 days. Then I took out some heavy plastic zippered bags (the ones that pillows, sheets, etc. come packed in) and would say something like ... OK, now give me 2 outfits for our first stop. I'd then then pack those 2 complete outfits into that plastic bag (along with outfits for me) and label it for that stop. After I had packed separately labeled zippered bags for each stop, I placed the bags inside one large suitcase. I also took along an empty cloth shopping bag. As for toiletries, I now keep a separate small toiletry bag (which she initially packed herself) for her to use only when we travel because, otherwise, each time we travel Clare will pack every toiletry item she owns and the bag will weigh 5 pounds! Now I just replenish stuff in the small travel bag after each trip. I keep our travel toiletry bags, plus all meds, in my backpack. On our last trip, when we got to each stop I'd open the suitcase, grab just the plastic bag labeled for that city/hotel, and transfer it into that empty cloth shopping bag. That shopping bag, plus my backpack, was all I'd bring inside the hotel. Each night in each hotel, my wife had only those clothing items she'd need while we were in that hotel. It made each morning and evening a lot easier because I'd simply set out each outfit for her and that was that! I'd still have to listen to her briefly scream at me ... things like, "Who told you to decide what I should wear?" But I'd calmly remind her that she chose her clothing, not me ... that she decided before we left that this was the outfit she wanted to wear on this day, etc. That would calm her down right away. Packing separately for each new hotel worked extremely well, and I also no longer needed to carry heavy suitcases ... just my backpack and the one cloth bag. When leaving each hotel stay, I'd place our 'dirty clothing' in that same plastic bag, remove the label, and place it in the cloth bag. At the next hotel stop, I'd remove the dirty clothing bag from the cloth bag and place the next stop's labeled bag inside, grab my backpack, and that was that! Having pre-packed toiletry bags and 'modular packing' for each separate city/hotel visit made a huge difference! Pre-trip packing that used to take days now took about an hour, and hotel mornings and evenings that used to be panic/crisis times now went smoothly as Clare had fewer decisions to make.
acvann, you are so organized! These are very good ideas and it makes me want to go on a vacation. I loved traveling when DH was doing all the driving but not so much fun since I have to and he doesn't do as well when we're away from home.
That was one of the first things to go with DH - traveling. Even a day trip is totally out. I can drive him around for about an hour and that's it. He thinks we have been on the road for days and days! And he always loved to travel and vacations, etc. Glad we did it when we were younger!
acvann, that's a wonderful idea you have for you and your wife, and for others who can still hit the road!
Acvann....Super. You need to submit your travel ideas to some magazine or send it to the travel editors at newspapers. My dh is past his travel days but that would be helpful for younger people that have children also.
Allan: (Hi NY, I am formerly from Westchester) Ask me to select 11 days of outfits?? No way could I plan that far ahead! A thought to add to another thread "Advantageous of ALZ. would be, I don't have to wait for DW to pick out what to wear any longer. I dress her. Bad joke !
My DW's former employer offer an incredible benefit to their employee's. In order to retain employee's they offered a 3 month sabbatical at full pay (6 wks at double) after each five years of employment. Needless to say only their most valued employee's worked hard enough to last long enough to earn the perk. In 1987 & 1992 a round the world ticket unlimited stops cost $1800/2200 Twice we did six weeks going round the world with two shoulder suit bags and 2 wheelies. Never having to spend more than a few $'s above and beyond her pay Redefining traveling and packing light.
Travel now is out of the question. The moment we depart on anything other than local shopping the first thing DW will communicates is her desire to go home. This request rapidly become a heart wrenching plea and coming from a woman who can barely communicate it's a horror scene. I keep her in her nest as much a possible. Regrettably the only packing I've done for her in the last several years is for a hospital stay
Vickie same here. If I just take him for a short drive he is satisfied. No matter how many times I tell him, WE ARE NOT GOING ANYWHERE, he will at some point in the day sit in the car and wait anyway.
It is really hard to go to town with him now though, he takes his belt off and on, off and on, and fidgets. Very distracting and of course no matter how often I tell him he does not remember.
He too used to be the driver, and I loved it. It seems like forever now that those days have been over, and it has only been 1 and a half years.
You are organized. I don't even have enough clothes to change everyday for 11 days. But, I like your idea. Maybe Joan will post on the home page under one of the subjects on the left.
Luckily, when Jeff was still travelable, I could pack everything. It's been years since he thought or worried about his own clothes. Interesting though, many of the ladies who live in his memory-care ALF wing are still very interested in their outfits, and choose. Jeff puts on whatever they dress him in. No surprise.
We still travel - mostly up to Orlando to DIsney World. I do all the packing. I don't even consult DH - he will wear whatever I hand him, and he is always happy with the choice. I let him choose a couple watches to pack - he is obsessed with watches and has about 30.
I have 2 weeks of vacation time left for 2012 and would love to take a really restful vacation. Disney is not restful - we are always tired when we get back! I want to go on a cruise - we had to cancel the last 2 we booked because he was in too ill. But I have to first wrap my head around the fact that I will not be able to get off in port [unless we call on Key West, which would be governed by ADA]. Also, not thrilled about cruising with him alone - but can't find anyone who wants to cruise this fall.
Anyone interested??? LOL
Road trips longer than a couple hours are out for us -- DH can't sit in the van that long. And I am always worried he'll need to make a pit stop, and the bathrooms are disgusting at the rest areas here!
We just returned from an overnight road trip. We hadn't been anywhere overnight for almost a year. On that trip a year ago, my DH was so disoriented that I decided that he probably needed the security of our home surroundings.
But winter is long and gloomy, and he had saved up some money, so we thought we might take a week long vacation to Manitoulin Island - an area we had never visited before. But I got remembering our last trip, and decided that maybe we should try an overnight vacation first. So I booked us in to a resort that is only a couple of hours away, and that we had stayed at before, and after checking to see that DH had appropriate attire in his suitcase, we hit the road on Thursday morning. I realized about 15 minutes into the trip when hubby accidentally put the car out of gear while he was jamming the power cord of his GPS into the console that I was probably not going to enjoy the trip. We drove through some beautiful scenery - he kept his eyes glued to the GPS. We did stop for a bit of a walk at a waterfall shortly before we got to the resort, and that was probably the highlight of the trip for me. Once we got to the resort, I had to watch him like a hawk to make sure that he wouldn't trip over something or drown in the pool. At dinner, I had to tell him to butter his roll on the bread plate, and not on the tablecloth in front of him (this is a man whose manners used to be impeccable). At least he didn't wipe his nose on the napkin like he does at home! The next morning we headed home by way of the city so we could have lunch with our children and do some grocery shopping. Every 5 minutes he gave me an ETA as per the GPS. I discovered he has a fixation with ATM's. Every one we passed he had to examine as if he had never seen one before.
When we got home, he immediately went for a nap, while I put the groceries away and unpacked. When he got up an hour later we watched some TV, and then he was back in bed by 10. He got up this morning at 8, but after half an hour was back in bed and didn't get up until 11:30. After lunch, he took a two hour nap. So, the trip obviously tired him out. I And I don't think that he got much out of the trip, since he hasn't mentioned it since we got home. And having to be ever watchful of my DH stressed me out so I don't know whether I want to try it again or not. The change was nice, but was it worth it?
Such a helpful topic for me today. My DH and I enjoyed traveling and had some timeshares. Since he was dx in September as moderate already, I felt a huge sense of time urgency. We just returned from Florida where we vacationed with my brother and sister in law. I no longer feel comfortable being a plane ride away alone with him. We enjoyed the time away. But, it was a lot of work . As some of you said packing and transitions from place to place are stressful for him and me. I have to do all the planning, packing and deal with his confusion. Then , I have to anticipate all his needs and follow him even to go up to the room. Since he is about stage 5 , he gets annoyed if he figures I am watching hm or as he says telling him what to do.
Yet, as long as I can manage I am still planning trips to enjoy with him. But, the sad thing is he will not retain these memories . That made me wonder about the value of the experience when it disappears. Will it be the same as if it never existed? It is so emotionally exhausting to deal with this dreaded disease!!!
Update from my 6/29/12 posting ... I just canceled plans for a 4 day mini-trip to NH planned for late June. I've accepted the reality that our travel days are now behind us. It's just too much of a hassle now. As bqd noted, having to be ever watchful makes trips very stressful. Clare is now so confused all the time that I cannot ask her to do anything to help me anymore, I can't let her out of my sight for a second, and on our last trip in April all she wanted to do was sleep. I thought I could squeeze in one last trip, but decided this week that I just can't handle that kind of stress anymore. As Lorrie noted, there is no retention of any trip memories anymore either. Clare has zero short term memory left ... when I pick her up at day care, for example, she cannot tell me one single thing she did that day, what she ate there for lunch, etc. Not one detail. Wait 30 minutes and ask her what she did that day and she won't even remember being at day care. Not that this surprises me, because we still go out to eat but by the time we reach the parking lot Clare can't remember what she ate. In recent months, her long term memories have started disappearing, faster and faster. We took some marvelous international trips in the past decade ... China, Russia, the Mideast, Europe, South America, etc. ... and she remembers almost nothing. SO sad.
I stopped taking over night trips after the time we stayed over night at our daughters and in the middle of the night he got up and was confused and scared because he didn't know where he was. I thought why put him through this. When I got him back home he also slept alot because he was so stressed out. He is very happy here in his little world so I fiqure why upset him. I"ll find someone to stay with him while I go on trips.
I stopped taking DH on any trips 3-4 years ago, except we did travel 700 miles to my Mom's funeral in 2010. Then DH' son (neurologist) and wife came out and took us to a beautiful resort 3 hours away. They did it for me, I know...but....DH could't/didn't appreciate anything, didn't know why or where we were and so I was still 'stuck' many hours in our room - as he wouldn't stay with them withou getting so agitated. So..no more and I mean no more trips of anykind overnight. Like Amber said, he is happy in his own little world right here at home - and it's a lot less stressful for me too.
The last long trip we took was in January 2010. We bought a "Class B" motorhome (a Chevy extended Van) in October and went to CT and NH to visit relatives and that went well though I did all the driving. In January we went to Florida, visiting friends on the way and arrived at a friend's Condo in Bradenton where we planned to spend a week and then then go on a cruise out of Tampa. WE arrived there on Thursday afternoon and at 3 AM Saturday morning he woke me from a sound sleep and announced we were going home. No amount of reasoning would deter him. He said if I wouldn't go he'd go by himself. He still had a key to the vehicle but had never driven it. He wouldn't have been able to find his way out of town to the highway but I figured he'd have an accident for sure.
During the summer on 2010 he wanted to go camping so we went on a few short trips. Each time we went he wanted to go home as soon as he woke up the next morning. I had told him in no uncertain terms that I would not leave before daylight. Then the vehicle sat here going nowhere until the spring of 2012 when I sold it. He was mad but I was glad to be rid of it. Good thing DD is his power of Attorney . We just told him since it was in both names I could sell it.
Last Saturday DH wanted to go to Denny's for breakfast. He loves their senior's omelette. So off we go to a city about 45 mi away. It is very hot. I have asthma and need the air on. He is cold but will not put his jacket on so he is trying to turn it off and I am trying to turn it on. I should have just turned the car around and gone home, but not me. We get to the restaurant and it is usually very cold. So, you guessed it, I said " maybe you should bring your jacket" , he says " No, I don't need it". We get in the restaurant, and you guessed it" I'm cold, I want my jacket" I gave him the keys and said " go and get it" The trip home was not good as he refused to put his jacket back on and would not let me turn on the air. That is the last trip to Denny's for him for a long time unless we have someone else in the car. I'm afraid we will have an accident with him cring up and the car being so hot. I was really sleepy.
No travelling here either. Now that he can no longer drive he has no desire to go anywhere .As Vickie said, it was one of the first things to go---not even a day trip. He's very content sitting in the den doing crossword puzzles, reading magazines, and surfing the television, but then he'll complain that he's bored. Go figure
My DH is always complaining about being bored as well!! It will be better when he is in LTC as there are lots of things to stimulate him and I will not have to drive him anywhere. It sure scared me the other day as we were on a major HWY. my son said if you can't get him to behave you will have make him sit in the back or take someone with you. Last spring he opened the door of the car to try to get out, he was mad, at a major intersection as I was turning. Scared the blazes out of me.
OMG Jazzy the a/c story reads like a bad comedy!! As I was reading, I could imagine me yelling "Put your #@! jacket on!' Last summer my DH tried to jump out of our car as I was making a left-hand turn in a busy intersection, so there I was steering with one hand and trying to pull him back in with the other. Cripes, how do we survive all this? Thank God (and Joan) for these discussion boards.
Luckily right now my DH does very well in a car and loves to go for drives. Yesterday afternoon we drove to a village about 1 1/2 hrs. away to go to a play. All the way home he asked questions about where we had gone and why and what day it was and what time it was. sigh. Although he did really seem to enjoy the outing so I guess that's what really matters.
I've been trying to decide whether to take dh on a cruise to Alaska. My inner voice keeps telling me not to do it, but the outside world tells me to take him, he'll enjoy it. But, just like most of your spouses, he's more comfortable and secure right here at home. Why pay thousands of dollars to go on a trip that neither of us will enjoy?? Think I'll just have to put this trip on the shelf and go another day with one of the kids. Thank you all for helping me to make a decision.
One of my support group took her DH to the south last year and he just stayed in his room as he was just so scared, then when they were travelling back on the interstate he tried to get out of the car a number of times and she says never again. It must have been terrifying for her. She had taken him a number of times before with o problem but she can't do it anymore and she goes on trips with friends or family. Much safer for him and for her. Can you even imagine how serious that could have ended up??
I would listen to your "inner voice" and not go on the Alaskan cruise. Our spouses like routine and don't do well in unknown environments. There could be so many unforeseen circumstances that could happen. Could you could really relax and enjoy yourself? I think you are very wise not going.
My thoughts exactly. In this case the man encouraging me to do this is dh's lifelong friend (I mean since pre-school and dh is 83). He's still out traveling and loves to travel and thinks that this would be just wonderful for dh. As you said, he hasn't walked in our shoes. Might be fun for me someday, but not now when I would have to watch him like a hawk and field questions about home and everythi9ng else.
Claude passed on in 2009. In 2005 when he was still in a moderate stage, we took a cross country car trip with our daughter. Cathie was "Daddy's Little Girl" and he would listen to her much better than me at times. We got as far as west Kansas and he started throwing a fit. She told him if he didn't stop and settle down, she would turn the truck around and we would go home!! He settled down. During the two weeks, he pitched a few more fits. My niece asked Cathie one time how we could put up with him when he did this!!
I wish I had listened to my "inner voice" then and not done the trip. Even being in a moderate state, he was very upset by a change in his routine, new people and places etc. We all were constantly on edge and it wasn't a vacation for any of us.
knowing what I know now, I too took DH on several cruises and trips thinking he would be ok. it was not a vacation in any sense. you have to be vigilant 24/7 or they can wander. its just a lot of work and in a new and uncontrolled space where they get more ansy. if it were me, mother I would wait and do a vacation with your family members and find respite for the DH. that way you know DH will be looked after and everyone will be more confortable and you will be able to enjoy yours.
We had been going to Florida for c couple months each winter and then going on a cruise before coming home. In 2009 we bought a small class B motorhome (built on a Chevy Express Van) and went to Bradenton, FL to visit a friend. Arrived on a Thursday afternoon, and spent all day Friday booking a cruise to go out the following weekend. Went to bed Friday night and DH woke me at 2 AM and announced we were going home. He still had a key to the vehicle, though he had never driven it. He said he was leaving with me or without me. He was so agitated I really had no choice but to go. We left there at 4 am and I drove all the way home with one overnight stop. Lost over $600 on the cruise (the cost of the cancellation insurance and a penalty for cancelling within 5 days of the booking). At that point I said never again. We did a few camping trips locally that summer but he could never last more than 1 night even though we had planned for 2 or 3. The next spring I sold the motorhome. Now I wouldn't dream of taking him anywhere.
How about a good test to confirm your 'inner voice' - go away overnight or a couple nights, which is a lot cheaper than a cruise. How he handles the change would give you a good indication. Then you can tell his lifelong friend you did a test run and found it would not be a good idea.
mothert, isn't is funny how friends, relatives, etc can think of things we should do that would make our spouses happier, feel good, and so on. They have absolutely no idea what happens when you take an alz person out of their element. Just a trip to the doctor or family reunion or a drive can throw them out of sync. A cruise would be very stressful for you and your spouse, what if he fell overboard? What if he go so aggitated that you could not cope with it? I don't think that a cruise ship would be equipped to handle something like that. Tell the friend that it just isn't possible, unless he wants to take him. If some of these friendly advisers would take alz patient for 24 hours or more they might understand better. Sorry I guess I am doing a little venting here. I would advise you not to take the trip.
Charlotte, that is excellent advice for mothert. We had been planning a week long vacation and I was having second thoughts about going, knowing that my DH was more comfortable in our home setting. So I decided to try an overnight trip first (not much driving, to a resort we had been to before). It was a disaster - I was stressed the whole time, and when we got home, DH slept for 2 days! Never again!! Now we restrict ourselves to outings within a two hour drive from home. They serve the purpose of providing a change of scenery and a meal out, and are not stressful for either of us. mothert - listen to that inner voice - you know your situation better than anyone in the outside world and regardless of what others might think your DH would enjoy, you know the truth.
I had such a bad time taking my DH out a few weeks ago and decided never again but I am going to try again. This time he will have to agree to a few rules. He has to wear his sweater or jacket if the air is on in the car and no touching the controls or we turn around and go home. As I have posted, he is having a really hard time with "a purpose" to his life and needs all the stimulation he can get so shooting in the city will, I hope, do that for a while. Wish me luck and pray!!
I've been having problems with my DH in the car recently, although not as badly as you are. Primarily, he talks non-stop, tells me how to drive, and yells at me if he doesn't think I'm doing it right. A few weeks ago, he grabbed the steering wheel a couple of times when he thought I wasn't turning sharply enough. Using earlier advise from this site I told him it was getting too hard for me to concentrate enough to drive safely, but that we could keep going places if he rode in the back seat behind the passenger seat. I use the kid-lock on the door and lock the windows. He can't reach me or the controls now, and I can't hear his constant talking as well. He doesn't like it, but I have refused to start the car a couple of times when he resisted getting in the back, and he seems fairly much resigned to it. He resents that I have to come around and let him out because of the kid-lock, but it's become a condition of going anywhere. Would that work with your DH?
Hi Janet We have already been throughout the "your driving is not good" part like you went through earlier this year and now he is quieter but can't stand the air being on and refuses to wear a sweeter or Jacet and is always handling the heat and air controls. He s always freezing but refuses to wear the thing that will keep him warm. Just another part of the disease. He tried to jump out of the car as I made a left turn at a busy intersection this spring and had the door open. I told him I would call the police if he I'd that again and he closed the door. Scare the hell out of me. I can't find any child proof locks on my doors only on the windows.
There should be locks on the inside of the rear doors that only allow for the doors to be opened from the outside. I don't think this is offered on the front door.
mother, tell the life long friend that it would be good for your DH and you if he took him on a 2 day trip to give him a change of scenery. That should stop him from giving you advice to go. If not and he does take your husband, then he will know first hand how difficult it will be for both of you.