Our Trip Was Cancelled
Three days ago when I mentioned some minor detail about the trip she basically froze, didn't say a word for several minutes and then blurted out..."I'm not going to Idaho". Her rationale is she does not want to stay in hotels due to the pandemic. She is also concerned long hours in the car will cause her bladder and kidneys to hurt or even fail. She conjured up other reasons but you get the idea.
After my best, albeit it pointless, attempt at reasoning and common sense, she flatly refused to make the journey. Period. Even crying and expressing anger the more I tried to convince her the trip would be good for both of us.
Yesterday our PC doctor told her it would be good to get away, see new things, be with friends and just relax. Essentially the same things I told her. While with the doctor she smiled, nodded and kind of agreed, but after the appointment still flatly refused to go.
Comments
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It is incredibly hard to visualize what this disease does to a a person's brain.
Please she is a sick person and thinking of her as a "petulant child" can only hurt YOU. The brain is BROKEN. We were on a trip when my wife started conversations with the lady in the mirror. We were on a trip when she handed me a bowel movement and asked "what am I supposed to do with this ? We were on a trip when she stood in the apartment and urinated on the floor without noticing it. On planes I had to take her to the bathroom and stand with my foot in the door . I carried a small light since the light would not go on with the door not closed.
I assure you a demented person's fears become overwhelming and delusions are very real0 -
DJnAZ - I can imagine your frustration and disappointment. I will tell you that we have cancelled many, many things in the past two years and it still disappoints me each time. Just takes the wind out of my sails. And I mean even just getting my hopes up of making it to the bank before it closes (just the drive through!) is not a given.
It doesn't take much to make my day these days, as it has gotten quite isolated and insulated -- focused on keeping the peace with someone in stage 6c, whose world has shrunk exponentially through no fault of his own. And we are both helpless to change the downward spiral. Yes, its a real sobering reality.
We could not go to celebrate the life of a suddenly departed friend today, and it hurt (me) plus probably hurt the particular circle of friends who shared that loss without us. In dementia land there is no remorse nor empathy. We (or I) couldn't go? Well, that's just too bad. Because DH felt like staying inside all day, wearing a ladies' stretch shirt (mine...it kinda does look a little like it might be a guys' t-shirt. If you squint. or have AD), and a heavy winter robe, with his Depends (backwards but at least he changed it (them?) at 3am after 24 hrs+of refusing). Come to think of it, why would I want to drag him anywhere public under the circumstances anyway?
And that makes me think maybe you should at least consider getting respite coverage and taking that trip yourself. If the doc says time away is good for your spouse, well its good for the caregiver too, right? I'd think about it if I were you. You deserve it, and once you reach our stage, even your restaurant and store outings may disappear. Every once in a while we need to put ourselves first -- so we can keep going once we're back on caregiving assignment. Good luck to you.
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I’m sorry your trip was cancelled. Could you sneak things into the car and then pretend you are going to a store and just keep driving? Probably not but wouldn’t it be great if you could! I plan trips in my mind and as soon as I am able either thru placement or respite care I will take them. I have cooked all meals and run the house for 51 years and I need/ deserve a break. My husband had 19 good years in retirement while I actually worked longer than I planned because I knew placement might be in our future and the money would be necessary. I keep saying my time will come. It might sound selfish but it really isn’t. My goal is to live long enough to enjoy it.0
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Butterfly wings, just wanted to say I’m sorry you are at the stage where going to the store or grocery might not happen. It’s sad isn’t it? I did more shopping during Covid than I do now. It’s a tough spot and my heart goes out to you.0
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DJ, I agree that you should consider placing your wife in respite and going on the trip yourself. Traveling gets harder for people with dementia, often their anxiety increases and their behavior regresses in unfamiliar surroundings. My last trip with DH did not go well and we won't be attempting that again. But you need a break, a chance to recharge your batteries if you are going to continue this caregiving journey. Most facilities in my area, from assisted living on up, are happy to do respites although most have a 2 week minimum. I sent my DH to a lovely memory care while I recovered from hip surgery and he did just fine. Now that COVID is winding down, I hope to repeat it so I can get away, like you I really need a change of scenery. You can't expect to reason with your wife at this point in her disease process, but that doesn't mean you shouldn't take care of yourself.0
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DJnAZ-
Early in our dementia journey, we had a trip planned to Wisconsin to see one of my brothers and his family. Shortly before leaving, plane tickets in hand, she refused to go. Same sort of excuses, but basically she just didn’t want to go. It was hard on me, my SIL didn’t understand (she does now!) and we lost the money on the tickets. Now, I wouldn’t even attempt the drive to the airport.
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A strong second to what cynbar and butterfly wings said. Try to think how you might be able to go alone. I also had a couple heartbreaking (for me, not him) cancellations, money was lost but worse was the experience lost. If I could not take some trips without him, I’d be crazier than I am now. He has mixed, and unpredictable, reactions to being left, but he absolutely cannot, does not even want to, go himself. When I return, my absence is forgotten within hours.0
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I have sort of the opposite going on now. My husband is a huge Star Trek fan. Trekkie? Trekkor? and I am not but have tagged along with him to the Star Trek Convention in Las Vegas every August where it is always over 100 degrees everyday. It's about a 9 hour drive from where we live and I always thought the road trip was the best part. Two years ago is when I really started to notice things wern't right with him. I started off driving then after breakfast I asked him to drive. I wasn't really paying a lot of attention until I started to notice we were being passed by vehicles I thought were going really fast and some honking at us. When I looked at the speedometer and noticed he was going 40mph in a 75mph zone and getting slower and slower. I told him to pull off and took over driving again. Once at the hotel in Las Vegas and he wasn't sure where the convention activities were being held and I had to walk him there. Every day there after he would call me because he couldn't remember what our room number was or where the elevators were. There are 1000s of people who go to this convention and every day we were there it was clear the people were agitating him to the point we actually left two days early.
Probably the only time you will here this but thank goodness for Covid last year and the convention was canceled. He was at a place for a long time this year that he was comfortable with not going again this year until yesterday. All he could talk about was going again to get some of the actors autographs and seeing old friends he missed last year. The thought of going makes me nauseous. Not only is is horribly expensive I'm fearing the worst. I tried talking him out of it by saying that I'm a substitute teacher and school will be in session when the convention starts. He reacts by saying he could fly, take a bus or hitchhike which I know he won't do but it does send my anxiety level into overdrive. So for me staying at home on a staycation is the best idea.
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Oh I forgot DJnAZ, is that a Westie in your profile picture? I have two and love them so much, they are so much fun.0
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Hi, Kevcoy. Our pup was a Cairn Terrier, a close cousin of your Westies. She passed away last November 26 days before what would have been her 17th birthday. She was a great dog, friend and companion. I miss having her around, especially now. At the risk of being overly dramatic, I've lost my two best friends in the past year.0
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DJ / I went back and found your post from last week introducing yourself and your wife. First, I think your doctor that told you MCI is trying to slowly guide you into this world of dementia. Thoughts like what you have mentioned here are more likely mild dementia than MCI. Someone with MCI would be ok for a few days while you left, your wife will not. Second, I think you are still thinking that your wife has some control over her behavior. She does not. I know you are not happy with your Nurse Practitioner, but if your wife is not on medication for her anxiety.,, get her on it. Develop a close relationship with her PCP so that you can report troubling behaviors
I am not a member of any in person or zoom support groups, just this forum and asimilsr Facebook group, However many are and they find it helpful.
Please research and educate yourself about what is coming, I know you find different threads in these forums disturbing and you are trying to deny that your wife is going down this path. Many find the book ‘ the 36 hour day’ helpful as a reference guide. Not for cover to cover reading like a novel though.
I’m sorry that it’s already come to the point that trips are cancelled. It must seem like this has gone out of the blue for you, especially if your wife has always pulled her own weight in your relationship.
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Comfort and safety
Ask her if she would go if you sleep in the car, her in the backseat with child lock engaged and the both of you can use depends. You will only stop at places that have family bathrooms so you can keep her safe. N95 masks are available, you can bring Lysol wipes. lysol spray for hotel if she changes her mind.
Or invite your friends to your house
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My partner also has unrealistic expectations about travel. She never was a great traveller, but two years ago I took her to her 60th high school reunion in her small East Texas town. We splurged, flew first class to make it easy, and had a great time, stayed with her sister in Houston, and over 20 of the 41 people in her high school class showed up. I was very glad we went when we did, because things have definitely gone way south since then.
Well I recently got an email that they are having another reunion this year, and I made the dumb mistake of mentioning it to her (could have kicked myself, I should have never mentioned it). She's still in touch with a couple of classmates by rare telephone calls, and I don't know if they are aware of her dementia diagnosis (I don't see how they couldn't be, frankly, or at least suspicious). I don't think she's up to the trip at all, now, nor is her sister in a position to host us because of other family drama. But she's absolutely convinced she could fly there by herself and have her classmates take her, which is ludicrous from start to finish. I don't know whether to contact the classmates and explain the situation, she would consider it a huge betrayal for me to do that (in certain moments, she asks repeatedly if "everyone" knows about her diagnosis). So I'm thinking it's best to just not mention it or come up with some other excuse not to go. COVID resurgence might be a valid one--could be a valid reason for you to not go to Las Vegas too, Kevcoy. Masks being reimposed indoors, it seems.
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My husband and I will be traveling to visit family out of state in a few days. I am dreading it. My husband is OK at home but anything unfamiliar is a danger zone. I just packed a huge bag with all the incontinence products I could think of. My goal is to try to prevent accidents of all kinds. I hope I am prepared for almost anything.
I’ll be seeing my 99 year old mother. I try not to think too much about whether this could be the last time. It tears me apart. Our dog will be in the kennel but her cancer has returned and she has about six months left. The veterinary oncologist said there’d be no problem in the kennel and I pray he’s right. Everything about this trip either scares me or saddens me. My husband and I traveled all over Europe and North America for decades. Now I’m afraid to go to New Jersey.
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M1, that reminds me of the recent poster who mentioned—to her later great regret—a semi-“hidden” room that was her hideaway, until she mentioned it in some other context to her DH, who seized on it with not-great results. My DH is mostly past all that now, but I remember how stressful and hard it was to constantly weigh what you said or told them, because the consequences *might* be unpleasant….0
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Battlebuddy - thanks so much for your thoughtfulness. It means a lot. Yes, it is sad. Very sad. I am trying to just slow my mind down and not fret about it today though. I really do need to go out to take care of some business loose ends (post office drop off, banking, notary, yard work) let alone just get outside to feel the summer breeze, but that is not happening.
So, I am redirecting myself not to stress or feel too glum about it by keeping busy with all the many to-dos inside the house. And we know with our PWD LOs there is much work but few hands, so I definitely won't run out of tasks and get bored lol.
It is what it is. And it could be (will be) worse. This is AD after all. A real drag. I hope to have better luck with the home help search, soon. Meanwhile, many others have it far worse than I, so I'm sending well-wishes and positive energy right back to you and to all. Keep breathing!
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Hi DJnAZ,
One of my pleasures was travelling. I made a couple of trips to North Africa and had the time of my life. My husband hates travelling, whereas I love it, especially to interesting places like Morocco, Tunisia and Turkey.
He tells me my travelling days are over, in many ways he is right, I can’t leave him without care, he panics if I am away from the house for too long. I feel like I am drowning in quicksand but this is my reality.
I feel for you having to forgo the looked forward to trip. But I think the idea of a short term stay in care is a good one. It might be a good way of seeing what the future will look like. It sounds like this trip is something you need.
I realize Crushed is right, the person with dementia’s brain is broken. They can’t help their fears and even though it is annoying, they are what they are.
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As new as this journey down hell's highway may be, it really isn't all that new or surprising. My wife's mother and maternal grandmother both died of AD and now, looking back, I realize my wife's fate was basically sealed at birth. Although she is much younger than her family members, according to our PC doctor she is advancing faster than expected.
Although she is quite capable with personal matters, housekeeping, food preparation and other things, she really suffers with language and communication. When confronted with questions or general conversation, she gets nervous and stressed which exacerbates her limited communication skills even more.
And, as someone said in another post, she has the attention span of a moth around a light bulb. If I respond to her question it is very unlikely she can listen for more than a few seconds before becoming distracted. Then she will ask the same question multiple times.
Overall she looks and seems totally normal. Until she tries to communicate. She has been taking memantine and will be changing to Namzaric next week as our doctor feels her "mild" cognitive impairment has advanced to moderate. Whether the new drug, a combination of memantine and donepizil, helps remains to be seen. I'm not very optimistic considering the speed at which her AD is advancing.
The doctor is also considering an anti-depressant to try and stabilize her mood swings. But the real problem is getting her to follow proper dosing. She gets on her phone and finds the side effects for meds and immediately assumes they all apply to her.
So, again, while I/we may be relatively new to AD and caregiving, I've learned a lot in a short period of time. This forum has been a wonderful source and as others have said, my sincere feelings go to those who are further along than me. This is an insidious disease for everyone involved.
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Sorry to hear that your DW’s AD is progressing apace, DJ, such that travel is now questionable.
With AD we get a seemingly endless series of losses, and for some of us the end of travel is a pretty big one. The last time my DW flew was two years ago, and it was clear to me that we couldn’t do that again. The airport/security process was daunting, bathroom issues arose (both at the airport and on the plane), and the flight itself was scary for her.
Travel any distance by car is also a thing of the past, as my DW has no sense of time and, after just a few minutes in the car, things we’ve been on the road for a very long time. She also seems fearful of any speed in the car, so that’s an issue, too.
With Covid, travel wasn’t exactly top of mind. But once vaccinated, I came to the conclusion that just because my DW isn’t travel-capable any more doesn’t mean that I should never go anywhere….as long as I have a good aide/care plan for while I’m gone, of course.
Every PWD progresses through AD at his or her own pace. AD can stretch on for years and years. For this reason and others, I am not going to endlessly defer travel for myself, even as I have to reinvent it for one, not two. YMMV
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Buggsroo wrote:Sounds like a short term stay in care might be good for you, too.
Hi DJnAZ,
One of my pleasures was travelling. I made a couple of trips to North Africa and had the time of my life. My husband hates travelling, whereas I love it, especially to interesting places like Morocco, Tunisia and Turkey.
He tells me my travelling days are over, in many ways he is right, I can’t leave him without care, he panics if I am away from the house for too long. I feel like I am drowning in quicksand but this is my reality.
I feel for you having to forgo the looked forward to trip. But I think the idea of a short term stay in care is a good one. It might be a good way of seeing what the future will look like. It sounds like this trip is something you need.
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Namzaric is just (memantine hydrochloride extended-release and donepezil hydrochloride)|\
It is a typical pharmaceutical scam Combine two old drugs where the patents have expired and and charge a fortune There is no pharmaceutical benefit in putting the drug together.
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147538108
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147538108
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I suspect you are correct, Crushed. After 90 days on memantine, if anything she has gotten slightly worse. And I doubt Namzaric is going to contribute anything other than pharmaceutical cash for those who make and sell it. But, since it isn't costing me anything other than time to go to Walgreen's, we may as well give it a try.
I realize drugs for AD have limited to no effect on slowing down the progress of the disease. Considering how long AD has been around and all of the lip service, advertising and fund raising activities in the name of 'finding a cure", it would seem there might be something that could help those suffering this insidious disease. As far as I can tell, there isn't. And that is shameful.
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My thoughts exactly on why there has been no progress with this insidious disease.0
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