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Going on Vacation... what to tell her?
mostlyme
Posted: Saturday, March 2, 2019 3:48 AM
Joined: 12/17/2018
Posts: 163


I've left this too late!

I'm leaving on a 10 day holiday on Sunday and I'm wondering what I should tell my mother who is approx. early stage 6 living in a facility.

Last year when we went away she was more cognizant and so I told her we were leaving and made a calendar for her that the care aides crossed off each day.

I don't feel that is the right thing to do this time.

She relies on me greatly and is used to phoning me several times a day.  I am getting the nurses to redirect her calls to her companion who knows her well.  

I have a cool reminder clock called the Memrabel that allows you to upload your own video to play at a certain time.  I think I will make a video to say hello and let her know that I know where she is and that I'll see her... tomorrow?  the next day?  I'm not sure!  She won't remember if she sees me say 'see you tomorrow' 10 times...  I don't think...

Would love your suggestions...

Tell her I'm on holiday and will see her ____

Tell her I'm away for work and will see her____

Tell her my phone isn't working right now.

Tell her hello and not mention when I'll see her?

Thanks!


mostlyme
Posted: Saturday, March 2, 2019 4:03 AM
Joined: 12/17/2018
Posts: 163


Me again... I'm feeling torn up; guilty.

I'm worried about how Mom will react with me gone.

I'm determined not to contact her as I desperately need a break.  But it's so weird to think of just ignoring her for 10 days.

My brother who lives out of town is the emergency contact and I have her companion set to go over.  But she's been sundowning this past week and it's me that the facility calls to talk her down.  I'm good at it now but my brother doesn't have any experience with it - and honestly, I'm afraid it will scare her companion off if she talks to her like that!

Without going into the long story, I can't rely on her facility to be much help emotionally.  We're waiting on a room for mom in a more suitable facility.

I guess this is what happens when you feel so darned responsible for everything.  How to detach and have a break...

 


Rescue mom
Posted: Saturday, March 2, 2019 7:41 AM
Joined: 10/12/2018
Posts: 573


I’ve been lucky to be able to take some vacations while kids looked after DH, also stage 6.

I’d tell him I’ll be away for a few days (not dwell length of trip or being away, more in terms of preparing him that others would be around more), really stressing that others will be there. He did not like it —much like many kids don’t like being left with a sitter— and let me know, but I had to get away for my own sanity. Again, like leaving kids with a sitter or first days at school).

Your brother will take on your role of “talking her down” in sundowning if others don’t. (sounds like you do need a new place that can handle that, glad to see it’s in the works).

Once I got away, kids said DH he was fine until or unless I called, then he got upset, so I did not call him much. He seems a little upset/angry right when I get back. But he almost immediately forgets it and is over it, a few hours after I’m back it’s like I never went. 

Those trips keep me sane. Everybody needs a break and something positive to look forward to.


EN85
Posted: Saturday, March 2, 2019 8:06 AM
Joined: 1/10/2019
Posts: 64


I so wish I could offer you some advice, but I am the same way. Even relaxing is stressful. How can I relax when so much has the potential to go wrong or be problematic. Even if my mom spends a night with my sister, I have to be in a constant state of preparedness, and my sister does this for a living, however the relationship is different. I think that being the primary caregiver conditions you for things that you know your siblings are not conditioned for. The only way that you will be able to relax is if you let go and trust that the companion and your brother will be able to handle it, whatever it may be. I hope that you enjoy your trip and able to clear your mind without worrying about mom so much.
jfkoc
Posted: Saturday, March 2, 2019 8:55 AM
Joined: 12/4/2011
Posts: 16783


Is there a holiday from this? Perhaps the closest thing is a change. 

If your mother is not remembering then I would not worry about what to tell her about being gone 10 days. 

Who ever talks to her can say something like your phone line is down or your car is being repaired. ..a short term problem.


zauberflote
Posted: Saturday, March 2, 2019 11:02 AM
Joined: 10/24/2018
Posts: 151


Hi mostlyme! I am in a similarish situation, and don’t have a concrete script yet. Mom moved to my city in October, leaving behind 90 years of being a New Englander. It’s a culture shock, to move south of the Mason-Dixon Line! I used to visit her once a month in the AL where she was. Now I visit 2-3/week plus every Sunday at the MC. Anyway, in a couple weeks we are going on a “working vacation” to our usual vacation spot, Which She Remembers from having visited us there a few times. So just the name of the place is a bad trigger. I plan to say that hubby and I are having a little “just us” time, which is only his three sisters shy of the total truth. If there is an ER emergency, which is the thing I dread the most all the time anyway, I can get there the next day at the latest, as can my brother. My brother is visiting once (800 mile one way trip) during our 7-day trip. Maybe he can arrange it for Sunday, because if she doesn’t have me and hubby to take her to church, hall ell breaks loose. 

Telephone is a terrible method of chatting, as her slight hearing loss and today’s phones, ever how retro they may look, do not play nicely at all together, so she becomes very very agitated. A lower circle of ell. I will have to play it by ear. 

I wish you a soothing, calming, relaxing vacation!


Abuela
Posted: Saturday, March 2, 2019 1:22 PM
Joined: 6/24/2012
Posts: 294


I can no longer tell my mom anything about going away. She gets too anxious.  But here is a funny thing...  at least every other visit she will ask me how my trip was.  So in her mind I go on vacation every week.... not really, but if I tell her ahead of time its a disaster.  Creative fiblets get easier as time goes on.  Hang in there.
mostlyme
Posted: Saturday, March 2, 2019 11:35 PM
Joined: 12/17/2018
Posts: 163


You guys are awesome!  Thank you for your words and wisdom.  It helped me come up with something to say.

When I get back I'll write out what I scripted (but only if it works!)

 

 


NC caregiver
Posted: Sunday, March 3, 2019 6:13 AM
Joined: 2/7/2018
Posts: 856


Im glad you are taking a respite for yourself . Let yourself enjoy the time & put the guilt and worry away. I don't have any advice to give because I am a worrier too !   I have a weekend soon where my brother is going to stay with Mom so I can go to my daughter's concert 4 hours away.  Im just going for one night for the first time in a year & also worry Mom will get agitated .  Please let us know about your trip.  I do hope it goes well for you!   You deserve this!
MacyRose
Posted: Sunday, March 3, 2019 1:40 PM
Joined: 12/15/2011
Posts: 3895


Explain to your brother what to do to talk your mom down if she is agitated.  He needs to know how to do this, too!  This is just a vacation but you need to think in terms of what would happen if you were 100% out of the picture?  Then your brother would have no choice but to take over 100% himself.  So let him know how to do that.

I would not tell your mother about the trip.  When my mom was stage 6, I told her we were going on a Med cruise and she immediately started obsessing that our ship would be attacked by pirates.  (Pirates of the Mediterranean!  LOL!)   But the bad thing is she started calling me constantly insisting I must cancel the cruise which made the week prior getting ready to leave very stressful.  The funny thing was, on the first night we were on the ship (NCL Jade), one of entertainment crew members dressed up as Jack Sparrow and came in Le Bistro (restaurant) with a photographer to take a picture with passengers. When he got to me I had to laugh and ask "What on earth are you doing in the Med?" and he played along and said  "Uh...I got lost."  I was so tempted to buy the photo to show mom, but not with her in that condition.  

I think your Memrabel video is a great idea!  I would say "See you in a couple of days!"  Do you remember the magic mirror on "Romper Room?"  I would make the video a lot like that.  "Hi mom! (pause)  "I'm just checking in on you. How are you doing?" (pause).  "Well, I've got to go, but I'll see you in a few days!  Until then, I love you!"  (pause). "Bye for now!"


Rockym
Posted: Monday, March 4, 2019 9:23 AM
Joined: 1/17/2016
Posts: 873


My mom was in the middle of stage 5 when  my family went on a trip for 7 days.  I told the caregiving community, but not my mom.  She would not have remembered anyway and there was no reason to get her anxious.  I believe I called once and she may have called me 2 or 3 times.  Her AL community would give her the phone when they couldn't redirect her.

I recall using fiblets while I was gone.  Told her I would be by "soon."  Often said I would talk to her "later."  I may have even shared with her when we all went boating or something to that effect.  My mom just wanted to talk to me so I do not think she was clinging to where I was or me being gone.  In fact, I recall she may have even been happy we all were together.  I have a strange sensation of being on the balcony talking to her, but I do not recall stress or anything negative from her.  Some of the more stressful times in the past are sort of etched in my mind and this trip wasn't one of them.

If your mom is stage 6, my guess is there would be less recall for her and therefore you could pretend you are nearby if need be.  Also, I don't know how you feel about the several calls a day situation, but when this was my mom's mode (she had a cell phone for the first 2 years), it was making me a mess.  I tried everything to get her to cut back and in the end, I did take her phone to "be fixed."  She never missed it, called from the office now and then and my mental state began to look up.

As for the clock you mention, I personally think technology can just make things worse.  I will say there was a time I changed my voicemail message to say something like "Hi mom, I can't get to the phone, but I love you and I will call you soon.  Anyone else, leave a message please."  She did leave messages (lengthy and long) and later on, I recorded about 10 or so to document where her mind was at.  I still have those recordings and now I am crying/tearing so I will leave you with that.  I hope you have an enjoyable, safe trip.


EN85
Posted: Wednesday, March 6, 2019 7:18 AM
Joined: 1/10/2019
Posts: 64


Hey Mostlyme I hope that you are enjoying your trip and able to relax. I feel like such a hypocrite for giving the advice I gave Saturday morning. By Saturday evening I was losing my *hit because my mom was with my uncle at a senior jamboree. I thought, ok great, I can take a nap, watch some tv, and maybe clean my car. My mom can socialize with people she grew up with and this will be good for both of us. Within the first 30 mins my mind started racing and I was trying to calm down and just relax. By the next 30 mins I was in my car to just go sit in the parking lot just in case anything happened. So now I'm worried that when I go in vacation in April that I'm going to just worry about her and not enjoy myself. So I hope that you will come back refreshed with some pointers lol. Also hoping that your brother is holding it down while you're away
ButterflyWings
Posted: Wednesday, March 6, 2019 8:08 AM
Joined: 12/11/2018
Posts: 67


What a great thread with many good suggestions I will need down the road, I'm sure. If I read mostlyme's initial post correctly, you may already be on vacation (as of Sunday?!) and I hope you are enjoying your respite.

As I read your concerns about leaving and who would fill in while you are away, it occurred to me that this is like a good practice opportunity for your backup person/team to get experience supporting your LO in a non-emergency situation, rather than if you had some urgent issue with no choice but to suddenly turn the reins over to someone else (temporarily or otherwise). So this way, you are taking care of yourself as you deserve (and need), and at the same time helping prepare a Plan B or C for future getaways or possible emergencies that we hope never happen. That seems like a very good idea to me, though I do understand your nervousness. It is hard not to worry when you are the "go to" person and primary caregiver. And at least for me, it can be hard to think about self-care as just as high of a priority as I do care of others (DH, children, elders, etc.).

These boards are full of so much knowledge, wisdom, and experience -- and one thing I had no idea of is how many caregivers do not survive their loved ones' dementia, and how many also end up with AD themselves (!). I had no idea. Someone, maybe Crushed, posted a short while back something to the effect that Job #1 for folks like us, is to survive AD. Getaways/respite is key to surviving and thriving, plus helping our PWD. Good for you! Thank you for setting a good example for me to follow.


dashwood60
Posted: Wednesday, March 6, 2019 9:28 AM
Joined: 4/9/2018
Posts: 59


Good for you! I hope you're enjoying your vacation.

The past few years I've only been able to get to go away once a year for a week. I tell my mom repeatedly for a few days before I leave. My sister comes down while I'm gone and my mom always says "She never told me. I didn't know." When I get back she doesn't remember. I find the less I say, the better for me since she doesn't remember anyway.


Quip
Posted: Thursday, March 7, 2019 8:26 AM
Joined: 2/25/2019
Posts: 20


This made me laugh out loud!!

Abuela wrote:
I can no longer tell my mom anything about going away. She gets too anxious.  But here is a funny thing...  at least every other visit she will ask me how my trip was.  So in her mind I go on vacation every week.... not really, but if I tell her ahead of time its a disaster.  Creative fiblets get easier as time goes on.  Hang in there.

When I will be away, I tell my mom I'll going to be working long long hours on a big project, and might not be able to visit and/or call, because it would be 9 pm or later, and of course she's asleep by ... 6.  Then, I do find a way to call when I know I can talk with her, and say, hey, I'm just at work, but won't be able to visit on my way to work tomorrow [ which is our routine ] , but I'm just not busy right now for 5 minutes, and thought I'd call to say hi.  [ Sometime, this is actually the truth because I do travel for work, but I don['t tell her i'm out of town, that brings on great anxiety. ] 

This approach works for me and my mom.  For some reason she doe not begrudge me 'being busy', but this approach does NOT work between my sister and my mom.  Mom begrudges my sister for any slight, actual or perceived.  Therefore, we have shifted my sister to the backup position in terms of mom-care.  This is painful, and sad, but sister and I agree it is the best thing.

Anyway, ENJOY YOUR HOLIDAY!!!!

Quip


Rockym
Posted: Thursday, March 7, 2019 9:07 AM
Joined: 1/17/2016
Posts: 873


Quip, I love your fiblet conversation with your mom.  It reminds me of how I was talking with my mom and I recall telling my family how proud I was of my lies (fibs).  I went from feeling guilty and uncomfortable to sharp and empowered.  I think it's a gift to our LO to be able to tell them what will make them feel better instead of selfishly trying to make them understand.
Sweetwater
Posted: Thursday, March 7, 2019 9:16 AM
Joined: 10/6/2016
Posts: 151


Mostlyme, No vacation for me, but last Oct. I had hip replacement surgery. I was worried about not being able to visit my LO in MC while I recovered. Phone calls were not an option since he is almost deaf. The nursing director suggested that I write him a brief letter that he could refer to until I could visit again. His son also visited him every day and the staff did a good job of explaining my absence. His son told me the letter seemed to give him comfort. Luckily my recovery was fast and I was able to resume visiting after a week or so and I felt kind of foolish that I had worried so much. Hope you are able to make the most of your vacation. Good luck, Sweetwater.
Eric L
Posted: Thursday, March 7, 2019 11:01 AM
Joined: 12/5/2014
Posts: 1004


During winter break last year (2017-18), our family went away for about a week. MIL spent the whole week we were gone being angry at us because "we didn't tell her and no one said goodbye to her". Of course, we had it on the calendar, she saw us packing, she told us goodbye when we left and all the rest of that stuff.

EN85
Posted: Thursday, March 14, 2019 10:14 AM
Joined: 1/10/2019
Posts: 64


Mostlyme how was your trip and your return? Did you relax and was everything good while you were gone? Just wanted to check in God Bless
mostlyme
Posted: Friday, March 22, 2019 1:37 AM
Joined: 12/17/2018
Posts: 163


Hello all,

I'm back from vacation and it was fantastic.  

Even though I was worrying before leaving and I have a hard time releasing control to someone else, I was great!  I didn't worry about Mom on vacation at all.  That's not like me on a normal day.  A few times I wondered how it was going but I deliberately told everyone that I didn't want any communication.  I needed a break and I needed to learn how to separate myself from my mother.  

My mother was also good.  I was nervous going to see her when I got back.  I walked into the facility and she was sitting in the common room.  I took my cue from her and she just said 'Hello' like she had seen me 5 minutes ago.  Then she said 'have a seat'.  We chatted about this and that and then I told her that I had been away 'a few days' (fib) and she was surprised and asked how I liked it.  I couldn't believe it.  I knew her memory had deteriorated but I think we never really comprehend how our own LO is following the pattern just like everyone else.  I know I often equate her changes to something other than Alzheimer's.  

The hard part has been getting back to my caregiver role.  I'm extremely patient with Mom and never lose my cool.  But a few days after my return she started sundowning and it was like I had never experienced it before and had to learn all over how to fib etc.  And I felt really agitated with her.  It was hard to talk her down and not just hang up the phone.  sigh...

I'm getting better now.

MacyRose, I did as you suggested and gave my brother and her companion lots of notes on what works.  I included general notes on good communication with an Alzheimer's person and then gave specifics for her stuff (agitation, sundowning) and how to get her out of it stressing story telling and fiblets.  I also gave examples of some habits she has and how I respond to them.  

I felt good about it - and you're right ButterflyWings, it was good practice for my brother.  He hadn't had to deal with her in that way before and he was pretty proud of himself and did a good job.  

If I had to do it all over again, I think I would add some of Quip's suggestions in there too!

Here's a summary of how I prepared:

1)  Set up companion schedule with lots of visits.

2)  Gave notes to brother and companion about communication.

3)  Gave notes to facility giving them contact info and schedules for brother and companion.  Also upcoming appointments and ideas on how to redirect her without me there.

4)  Made a video for her that came on automatically after supper which is when she is at her worst wondering where she is, where I am, do I know where she is, do the people know she's staying there etc.  I made sure I was positive and upbeat in the video and told her I was doing really well and I'll see her soon.  I addressed all of her worries in a positive way and told her how safe it was where she is staying.  She responds well to her video machine and even talks back to my brother who's video plays every day.  

5)  As I have a dedicated answering machine for my mother, I made a message just for her saying that she reached the answering machine because I'm not home right now but I know where she is and I'm doing really well and other chitchat.  I also told her that she could phone my brother or the companion by pressing their button on the phone.  Again, I kept it very upbeat and told her I would call her soon.  I ended with 'love you, bye for now'.  Some of the messages she left were 'OK, bye'.  

6)  I have some 'talking tiles' which are great.  You record a message on them and they can be played back by pressing them.  I left a message on one that I left with the staff for when she got agitated.  It was similar to the other messages but with more detail saying that it's best that she sleep there tonight; that she's safe and that she and her kitty (fake cat) will have a good sleep there and I'll stay here and sleep where I am and that I'm safe too.  I also told her on this one that I'll see her in the morning and we'll have a good chat then.  When she's agitated she doesn't remember much so I wasn't too worried about that big fiblet.  I made sure to speak slowly and use pauses and to sound very confident.  

I didn't tell her that I was going away and that worked out given her stage.  It's made me confident that I'll be able to go away again without issue.  That's so important in this role.  And I don't think I would allow any communication next time either.  I think it's better for both of us.  I often find it upsetting when she's agitated so it would definitely dampen my holiday to have to deal with that.  And I think if I was speaking to her regularly, she would expect to lean on me and have me there to respond to her as usual.

Rockym, thanks for mentioning the phone and how it was making you a mess until you took it to be 'fixed'.  I so feel that way when she's agitated.  But then she'll be great for days and it's such a nice tool that she can have to feel connected.  I'm still torn.  I'm getting closer to taking it in to be fixed though.

Sweetwater, I agree with you about feeling foolish for worrying so much.  When I was reading EN85's post about worrying so much and not being able to put it down, I totally related.  I really think it's something we need to work on in order to get it right.  I don't know about anyone else, but I feel like I have PTSD.  I'm sure that's why it's been so hard to get back into the caregiving role.  I don't want to.  It's so hard for me.  And I don't have much reserve left to always be kind and understanding.  We often talk about what they need but don't care for ourselves with the same compassion.  It is a big price we pay and sometimes I wonder if we're doing the right thing.  We can't save them yet many of us are 'killing ourselves' trying to plug all the holes so they will always be happy.  But it never works.  And so we try something else.  We really do need to learn that 'good enough is good enough'.  I'm sure this isn't the case with everyone, but for me - with my mother obsessed with me - I really do need to choose myself or I won't survive this.  

Well this has been a long one.  I hope it helps especially you EN85 to have a wonderful vacation in April.  Let us know how you do!

 

 


 
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