Looking for ideas - upcoming travel planned and I'm at a loss as to what to tell Mom.

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Looking for ideas - upcoming travel planned and I'm at a loss as to what to tell Mom.

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My 97 year old mother was recently diagnosed with moderate dementia and is now in a skilled nursing facility, which causes her a great deal of angst. She constantly talks about going home. But that’s not the issue, just gives you an idea of her psyche. She also frequently believes that I am dead. I see her every other day (the SNF is 45 minutes away from me), yet often enough on the days that I am NOT there, I get a call from nursing because Mom is just inconsolable because she believes that I am dead, that someone is bringing caskets to her, etc. Talking to me on the phone is not good enough, I can tell her facts that nobody else could possibly know, and she’ll respond, “Anyone could find that out! You’re an imposter!” She has asked me to drop what I’m doing and drive there so she can see me in person, which I have refused to do, telling her I’ll see her the next morning.

So, the problem is, my husband and I planned a 2-week trip to Europe a year ago, before any of these current issues. The trip is coming up quickly, and I am just at a loss as to what to tell her. Do I tell her I’m going on vacation for 2 weeks and won’t be able to visit? Do I tell her I’m going to Europe (which could cause her to worry more) or tell her that I’m going a couple of states away (which could lead to frequent phone calls)? I want her to worry as little as possible, although I may be fooling myself on that one because she will probably worry equally no matter where she thinks I am. I’m purchasing the full international cell phone service because I’m expecting phone calls at all hours from the nursing staff asking me to talk to Mom and assure her I’m ok. Maybe I should put a sign on her bulletin board that says, “Louise is on vacation from X until X (dates),” although I didn’t really want to tell her that I’ll be away for two weeks because her sense of time is warped and if I don’t tell her I’m gone for 2 weeks, she may not realize it’s that long. But, on the other hand, she may think I’m gone forever.

I can’t cancel this trip. My husband would not forgive me. I cancelled a trip to Canada in July because my mother was melting down really badly (that was before she was in SNF), that was bad enough. Plus, we are traveling with a single friend, and I can’t leave her in the lurch, either. Oh, and I am the only child, so there is that. I have two daughters who will go see her on weekends, but they are both working with very limited time off available, I’m not asking them to take days off to go visit her during the week. I have friends of hers lined up to go visit, but it’s not the same ... she doesn’t obsess about THEM being dead.

I welcome all of your suggestions!

Family Caregiver Skilled Nursing Facility

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Get your mother a consult with a geriatric psychiatrist! She needs meds for her anxiety and agitation. They might also suggest an antipsychotic for her delusions.

Please be open to medication suggestions. Your mother doesnt deserve to be in this kind of psychic pain.

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Hi Barb--Yes, it's true that her mother doesn't deserve to be in this kind of psychic pain, but sometimes only so much can be done to prevent or alleviate it. There are a lot of things we don't "deserve" (such as diseases and other misfortunes), but they happen anyway and a certain number of them are inevitable.

Having said the foregoing, I believe your suggestions are excellent.

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Have you tried telling Mom you're feeling under the weather and need to stay away a couple of days? Bad cold or flu that you would not want to risk transmitting to her?

Have you tried a video call to see if that is more reassuring than just a voice call? If the SNF has internet access a cheap android tablet can run the google hangout or skype app.

Worrying about you may be a way of your mother expressing her own anxiety as her health declines. Does she take any anti-anxiety medication?

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I really see where your coming from but I would not allow the facility to call you to just to console Mom. Maybe in an emergency, like they need permission for something, but you are on vacation. Your daughters can handle what comes up. These people are professionals, they should know how to calm her down. I would ask to see if there is an anxiety med that can be given to her. Dementia patients get something in their head and they won't let it go. My Mom believed the staff over me. If they said it was so, it was so.

With a Dementia patient less is best. If you feel you need to tell Mom you will be away, just say you will not be able to see her because hubby is taking you away for a few days. You will see her when you come back. In the meantime, so and so will be there to visit. Not being aware of time anymore, she may not realize 2 weeks from 2 days. And I will bet, she will forget what you said by the next day. Wait to tell her the day before you leave and at the end of your visit. Have an aide near by if she gets upset. Like a child, don't elaborate. Kiss her on the cheek, give her a hug and leave. The aide will be there.

You and your husband need this. Mom is in a safe place being cared for. This trip is a once in a lifetime thing. Don't spoil it by worrying about Mom. Enjoy!

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I agree with Joann29 and BarbBrooklyn. I’ve gotten to the point of not telling my mother much because she won’t remember anyway. She doesn’t know if I was there 5 minutes ago or 5 days ago. She is currently living at her own home with a live-in so she’s being cared for and the aide would call if there was an issue. She was put on medication about 5 months ago because of her delusions and its helped immensely. Good luck and enjoy your trip.

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Would it be possible to have someone use a cell phone and video you with your mom? You could stand next to her with a calendar. State what day it is and then show her when you leave and when you will be back. You could have the short video show you writing this on her calendar. Then, if she does go through grief again someone can play her the video. She will see the date and herself with you, showing and telling her that you will be on vacation. It could just take 1 min or less on a video. Just a thought.

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I think this is a great idea! Make videos of you saying hello and talking about different things for a minute or so. Tell her you’re alive and well.

The nurse can say say that you left videos for her to watch.

Go and enjoy your vacation! Try not to worry because you’re mom really is being taken care of. You and your husband need this vacation. (I know I do! So, if you decide not to go... I’ll fill in!)

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Thanks, folks. Barb, mom is in a SNF. She was just moved there after 2 weeks in Geri psych at hospital. She’s on meds, and doc in SNF has tweaked them already when needed. Biggest issue is the drugs tend to knock her out, which isn’t good either.

JoAnn, it’s great that your mother believes someone! My mother doesn’t believe ANYONE, not the staff, not me, not my daughters. But, then, she’s always been a paranoid woman, it’s just intensified now.

Mom’s sense of time is bad, but varies. When she has those psychotic episodes thinking I’m dead, she never remembers them the next day. Sometimes she remembers that I visited, most times not. However, friends from our old neighborhood visited Wednesday and she still remembered that visit on Thursday (the nurse said they were having a very good time). Hubby and I went camping for a week, and every day she asked where I was and if I was coming home that day, so she couldn’t remember any of that. She’ll read me the same newspaper article 8 times within 15 minutes.

There is no way I could tell her I’m “under the weather” and then disappear for 2 weeks!

This dementia stuff is very new to all of us, and we’re still trying to figure it out.

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I'm sure this will seem cruel, but there really is a way you can tell her that you are going and then disappear for 2 weeks. Just do it! There is no way that you can stop her worrying - you can't do it now when you are more or less on the spot. You are not causing her worries and you are not responsible for them. You shouldn't turn them into your own worries. It doesn't solve hers, and it will ruin your life. Please give yourself a leave pass and just go.

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When my DH and I would be able to go away on vacation, if Moms health was pretty stable, I would hire a private caregiver to visit her for about 4 hours a day in the NH. She could answer the (constant) question of where I was, keep her occupied, and she’d text me how mom was doing. This would keep Mom from driving the NH aids crazy with her questions for a few hours. I brought her into the facility in advance to show her the ropes and introduce her to the staff. It was a huge relief for me and well worth it.

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Now THAT is a great idea!! She used to love her cleaning lady. I am going to give her a call and see if she has time to do this for me! Thanks for this idea!

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I would "remind" her about the trip, talk to her about how excited you and your husband are about it each time you see her and then I like the idea of writing it down too. Maybe put a calendar up in her room or a date book something that shows the month and maybe other appointments too but mark the day you leave and the day you come back (or an extra day or two on either end if you want them) with a line that connects them running through the days so she can see the block. Then have someone, you mom if she wants mark off each day or do that with her each day so she can visually see Sarah and Mike away (for instance) as well as how many more days before you come back. I also like the idea of video chats here and there unless you think it will create more problems. You could even try it a couple of times before you leave maybe, say on the day's you don't go see her. Find someone at the NH who will be around while your gone who can do it with her so it's the same person each time maybe. So she get's used to seeing that video chatting with is like having you there, it means you are alive and can't be fabricated. My mom has an Amazon Show which is nice because we can just "drop in" the way we would if we were physically visiting and she doesn't have to do anything to answer the call or anything. We used it the last time she was in the hospital too and it enabled us to be there whenever the doctor visited or anything else happened, it was great. The sound and ability to "be in the room" with the Show is better than FaceTime on the Ipad.

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I really don’t want to tell her too far in advance about our trip, because she will start worrying the minute I tell her about it. Why extend her trauma? I think I’ll try FaceTiming the next time my daughter is there and then see if someone on the staff can FaceTime with me maybe once or twice a week. There is no way I can afford an Amazon Show just for this trip. We sank every penny we had into this trip!

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I am going away for 3 days and I am not telling my mom. It will just upset her. I will tell the staff and they can call me anytime. It has taken me 3 months with my mom in the hospital and rehab to be able to do this!
I just tell myself she is in good hands and She is Safe!!

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If I were going for 3 days I wouldn’t say anything either. Two weeks is a much longer time. I can’t just disappear for two weeks when this woman frequently thinks I’m dead if she hasn’t seen me in two days.

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I hope you have a nice time, you deserve it. Do you think if you called her everyday she would recognize your voice? Or wouldn't she get the connection?

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I always get good information from this forum and even if It doesn’t pertain to my circumstances now, it may in the future. The two best suggestions: hiring a person to spend time with your mother daily, and recording a video to show your mother; the same video could be played every day. Also, the facility should not call you for the purpose of consoling your mother. I understand how you feel being her only child, but at your age you can’t put your life on hold indefinitely.

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FaceTime or skype

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"I want her to worry as little as possible, although I may be fooling myself on that one because she will probably worry equally no matter where she thinks I am."

Your statement above basically says it all. It won't matter if it is 2 hours, 2 days, 2 weeks or 2 years - she has NO concept of time! I would not tell her anything about your planned trip AND you need to focus on your trip, not mom. She is in (hopefully) good hands. If she is stressing about your being MIA even an hour or a day after a visit, nothing will assuage that, so there is no point to telling her (she will forget it anyway) AND there is no point to you worrying about it either!

As for meds, they should not be so strong that they knock your mom out. Our mother periodically gets in a snit about something (generally it has been thinking she has guests coming and needs to get home!) We got Rx for this (Lorazepam), AS NEEDED only - she does not get this on a regular basis, it generally works in a very short time (doesn't need to build up in her system) and calms her down (they try all other tricks of the trade first, sometimes for an hour or more before resorting to medication.)

I also would not have the staff calling you at all hours, just to "console" her. If it even works (sounds from your posts it does NOT), it will only work for a short time. If there is a REAL issue, yes, they can call, otherwise no. You have already said that talking to her now by phone does not work (you are an impostor), so what purpose would calls at all hours serve, other than to interrupt your trip and/or sleep?

I also think the idea suggested about hiring someone to come in every day and visit with her might be a good one. Changing focus/redirection sometimes can move the person on to some other topic. Also, write up some cards and letters, addressed and stamped and have one mailed by your daughters each day, so she has something to look at/forward to. Sure, it likely will not alleviate these delusions, but it might give her something to focus on, especially with her "visitor".

No matter what, she already experiences these delusions, so let the staff deal with her and GO ENJOY YOUR TRIP!!!

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Whatever you decide, don't rely heavily on wifi. Coverage can be spotty if best while traveling. I went on a river cruise in France; we were supposed to have wifi on the boat, but rarely could get connection. Coupling that with the time difference, we couldn't communicate most times with the laptop. The only message that I got from my brother (who was supposed to be covering for me as poa from several states away) was that my dad's nursing home had lost his teeth! At the time of my trip, my mother also required care at home and what she wanted was a very detailed itinerary of each of her days that she could refer to which I did. It made me feel better to know that I had planned out every hour of every day for her care too. My recommendation for you would be to hire someone to visit with your mom each day (I did that for my dad); I might leave an itinerary with pictures so if she does bring up the subject of where you are (and only if she does) someone can point to where you are and what you will be seeing! Do buy her a little something from wherever you're going (I brought dad a little music box and mom a beret) to personally give when you get back:) Ultimately, you need to chose a strategy that will allow YOU to relax and enjoy this trip. By the way, I had a wonderful time on my trip and mom and dad did just fine; dad's teeth would have disappeared whether I was there or not and they were replaced by the facility. A lot of preparation? Yes. Worth it? Absolutely!

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please don't cancel your trip. Go and enjoy it to the fullest. Your mom will be fine and many of the posters are correct, anything that might go wrong would go wrong whether you were there are not. I love the idea of hiring someone, maybe even a close friend would be willing to do it, to visit your mom every day or every other day. Maybe you can hire a retired person who wouldn't mind just sitting with her and reading or talking. Just to make sure things are running smoothly, keep her company and maybe remind her that you are on a trip. I would also make sure the home knows you give them permission to talk to that person if he/she has any questions, etc.

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My mother is one of the toughest narcissists out there. She sits in her room alone all day long, refuses to go to most social events at the SNF, doesn’t even want to go to the dining room for meals. When she was in her apartment she would sit there alone for days in her recliner watching out the window and making up stories about the lives of her neighbors. She would bitch that nobody came to visit her, but when someone DID visit she would bitch that people knock on her door and bother her, then bitch that the sat and talked about boring things and stayed too long. Now that she’s in the NH, she’s bitching about everyone who walks by her room (“I’m sick of hearing that one, all she does is sing all day!” about a woman with dementia ... what I wouldn’t give for a CHEERFUL mother with dementia). After her friends visit her, she bitches: “She talks SO LOUD! It drives me crazy!” (The friend is hard of hearing, Mom is not.) “She talks constantly!” “She was wearing the ugliest outfit!” (At least they are VISITING you, Mom!) It is very difficult being her daughter. VERY difficult. So, hiring someone to go visit her? She would be on to that like white on rice, and then I’d have to hear about THAT, “How dare you treat me like a child and hire a BABYSITTER for me! Who do you think you are?!” Yup.

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Would taking photos of various places you go and emailing them be a simply way to show you are "alive and well" but away (e.g., smiling with the Eiffel Tower behind you)? Hopedly she would recognize your face so that you aren't accused of being an "imposter".

I was away for over three weeks, and when I saw my mother yesterday (after having returned the night before) she said she had no idea that I had been away that long!

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What medications is she taking? Whew! Is she just presenting actressing~I hate to ask?

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Check with PMD what Medications are being taken and reasons for taking them ...may need to be adjusted or a new one started.

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Hum, maybe you can pre record some quick videos on a tablet or phone and send them to her caregivers before you leave to show to your mom to placate her in your absence. Some quick little snipets like, “ Hi Mom, can’t wait to see you. I hope you are having a good day, Love you Mom. See you soon.” This has worked for my folks to watch video messages( with the help of others working the technology) They think whatever they are watching is in the here and now most times but they also light up when they see and hear the messages I’ve been told. Good luck to you and ENJOY your trip. You deserve happiness now. Tomorrow is never promised and waiting for a “ good time to leave her” is not healthy for anyone. Hugs to you.

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Hi Quint41,
I am writing from the perspective of a Certified Travel Counselor with 38 yrs experience. Over almost 4 decades of Counseling people and helping them plan dream trips, I suggest you take two weeks of your time and devote it to your DH. I believe both of you owe this trip to yourselves. I can't tell you how many clients I had who put off taking their dream trips because of a sick relative. What frequently happens is you put off taking care of you and your LO and one of you develops their own health issue and one of you is so stricken, you and your LO will no longer be able to realize a dream of your own. I saw this happen to my Mother and Step Father. They put off traveling because my Grandmother was in a SNF and my mother was DON for the facility. My Grandmother died and shortly thereafter my mother was diagnosed with Coronary Heart Disease after almost 17 months of testing, medication, PT, the doctors decided they had to operate. Keep in mind my mother was an RN for 25 plus years. While recovering from the Bypass operation she was given medication which she was allergic to, went into a coma and died 6 wks before her 51st Birthday.
My mother and step father dreamed of going many places, they never got to do them, even after my grandmother was dead for 18mos. I learned at the age of 25 to not put off my dreams, I realized three childhood dreams during my career. I was diagnosed 2 1/2 yrs ago at the age of 56 with Early Onset Dementia/ Prob ALZ. We've taken two family trips in the last three years, and a big Alaska Cruise is planned for summer 2019. I've been to Alaska three times and never seen Glacier Bay. I can tell you I believe I am further along with this disease than the doctor says, but I am going to reach out and realize this last dream.
I recommend you leave detailed plans with the NH as to where you will be and how to get in touch with you while traveling and what your wishes are for things to be handled if your mother passes away while you are on your trip. When we grow up we leave our parents and move on with a spouse and become one. The entire of you needs some attention give it to yourselves, hopefully, you'll have a long time to explore the world, but don't cheat yourself of this chance. My prayers go up for you and your DH, God Bless you all.

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Wow! I hope you get to go on your Alaska cruise next year (and several more exciting trips after that). I've always felt that the earlier in life we realize that life is short, the better use we will make of our lives, including taking the time to enjoy ourselves. Even if we live to 100, life is still short, and probably a sizeable number of those years would find us too old to enjoy a lot of things, including travel. I like the idea of a "bucket list"--this past year I spent a tidy (some might say outrageous) sum to purchase two items that had been on my bucket list for many years but I didn't realize I would ever be able to afford, and I don't regret it (even though I'm one who otherwise routinely buys taped bananas!). I also manage to travel quite a bit each year, and don't really intend to stop; I can't say I've ever regretted a trip I've taken. Because I've traveled to many places, others sometimes come to me when they're contemplating a trip, and I enjoy convincing them to do so by showing them how to work out the logistics, and then hearing them tell how much they enjoyed it. I don't want to wake up some day thinking "I wish I had ____" especially if it was something I would have been able to do.

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Don't put off life with with your husband because of her. When she said, "There’s plenty of time for you to travel after I’m gone.” She was being ultra selfish. There may not be plenty of time. The year my dad was going to retire and he and mom were going to travel, he died. I know a of other people who did the same. When you married you were supposed to cleave to your husband. He deserves your undivided attention for a couple of weeks.

Also, tell the facility, to call one of your daughters only if it is a true emergency, she can make the decision to call you or not. Your husband needs the break. If your mom dies while you are gone, it won't be your fault, she is 97 years old. You could be killed just driving to see her, what would happen then? You are not indispensable, no one is.

Please, go on your trip, have a great time, give your husband your love and attention. He deserves that.

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Hi Mary Kathleen,
Once again you are right on the mark. An excellent reply. We were both on the same track on this one. Glad to see you writing again. Glad to have made a new friend.

God Bless,
John

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When I went away, I left several packages with the staff - wrapped like you would through post with return address label etc - I even used some stickers to look like stamps - they gave them to her when needed & she liked getting mail

Do something similar with post cards, small items that you 'bought' that you think she would like [here I'd get some lotion, hair barettes, etc but your call on how many] - this will show her you are well & away with nothing to worry about - I did something for every other day but if you are worried then 2 a day to help staff & they will appreciate your effort to keep her calm

Enjoy your trip but you missed the best in my country of Canada - please rebook as you'll love it

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I love love love your country and said in my response something similar...I'd rather have come visited you and would have cancelled Europe LOL...

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Take your vacation and I would mark the calendar also. Have a talk with the staff so they can show her what that day is and when you will be back. I’m sure they are familiar with having to tell their patients things over and over, that’s the reality of dementia.

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Wow...you do have your hands full...but you also have her number and a good head on your shoulders....you make very good points as only you can, knowing her best, and it sounds like you came hear to see if anyone had any better ideas...bottom line is it is one of those rough situations...and not likely to change no matter what. I hope you can disconnect and really enjoy the well-deserved break from this reality. Good luck with it all...

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Hi Quint, as you can see from all of these great answers PLEASE GO on your vacation and try not to worry. Most of the caregivers on this site would absolutely love to be able to take a 2 week vacation to Europe. I'm guessing that most would LOVE even to be able to have 24 hours off!! What happens to your mom will happen whether or not you are there. If you believe in a higher power, put your faith there and go and enjoy your time away. I heard a good saying about worry, which roughly is : Worrying is like paying interest on a loan that is not due. So true, another good one (again if you are a believer) : Let go and let God.

It's time for the 2 of you to take care of yourselves. How terrible it would be if you don't go because you're worried and one of you were to get sick (or God forbid) die without having this special time together. I'm willing to bet your mom went on vacation and so should you!

Please go! For you and for all of us that wish we could go. Blessings to you, Lindaz.

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Thank you, Linda. Yes, you are right. I think of that often (who’s to say we will be healthy enough to travel when Mom IS gone), and, yes, I have said to myself many, many times ... what were YOU doing when YOU were 61 years old, Mom? We’re YOU taking care of your mother? No, you weren’t. You were going wherever you wanted whenever you wanted. We are going. I’m going to do my best to not worry. Maybe those good Spanish Riojas will help.
Thank. You.

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Quint41 said: "I think of that often (who’s to say we will be healthy enough to travel when Mom IS gone), and, yes, I have said to myself many, many times ... what were YOU doing when YOU were 61 years old, Mom? We’re YOU taking care of your mother? No, you weren’t. You were going wherever you wanted whenever you wanted. We are going. I’m going to do my best to not worry."

I've said similar things on other threads regarding what mom and dad were doing for their retirement. Although mom and her sisters took turns keeping Nana at their homes, she was easy to care for and did not have dementia. They were all still likely in their 50s or so, but could still take trips, etc. All grandparents were gone before my parents retired and they lived the GOOD retirement - snow birds to FL for the winter, get together in their place or other family members' or friends' homes, and travel travel travel... They did it ALL. For MANY years! Mom still took shorter trips to FL after dad passed. Mom would have been about 85 when he passed, she is 95 now and in MC.

Now that we, the dementia generation, are of retirement age, we're getting stuck in this nasty rut. TAKE the time while you can! Do not delay as you may never get the chance to do whatever it is you have desired and/or planned. Dementia or not, anything can happen to any one of us and we will miss out those opportunities to do what we have desired to do. Tomorrow never comes, we must live in today. We can plan for our tomorrows, but keep your tomorrows close and don't keep delaying - never put off until tomorrow that which you can do today!

We never know what tomorrow will bring, so DO go, DO forget about mom and DO have a great time with your husband!! So many on this site cannot, either because they are providing care themselves and have no way to bring care in, or cannot afford to do this, or even worse have become so ill from care-giving that they are too infirm (or old) to go. GO GO GO GO!!! And turn the sound off on your phone - focus on hubby and your (possibly) once in a lifetime dream vacation!

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Sounds like your Ma has a severe case of anxiety and she may need to be medicated. There are several types and one should fit in with whatever other medications your Mom is taking. Do not expect immediate change as they may take a while. Good Luck.

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Looking for ideas - upcoming travel planned and I'm at a loss as to what to tell Mom.

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