Vacation, Guilt, Hard Decisions

RunningWorried76

Looking for advice on how all the caregivers on here handle vacations. Bear with me me, please, if you have time to read this.

Background: My mom lives with me and has roughly moderate level dementia. Long term memory great. Short term memory, focus level, and behaviors awful. With the help of a home aide, I give her her meds, make sure she showers properly (she can do it, she just sometimes steps in for 2 minutes then steps out without washing), cook for her, and basically just guide her through the day. She is completely non-aggressive and does whatever I ask, but denies anything is wrong with her. Cannot even say the D word around her (and I don't anymore).

Some of her worst behaviors are: Overeating: Especially whenever we have a party or small celebration, for example Mother's Day yesterday, she will just eat and eat and eat, no matter how many times we try to tell her to slow down. Many times she will then go into the bathroom and vomit. Taking the food away on an average day works, but at a party is not an option as everyone else is still eating. Trying to distract her doesn't help. She will just keep asking, or keep coming back to the food. Lack of activity: All she wants to do is sit in her recliner and watch Who Wants to Be A Millionaire and/or listen to music. All day long. We get her to walk sometimes for some exercise, but it's difficult. As a result of these two issues, she is gaining weight. What's comical is all she does is point out overweight people, particularly some of her brothers and sisters.

Lack of manners: This is probably the toughest thing to get used to for me. She burps and farts loudly no matter where we are or who is around, and often. I mean, I do this to an extent, but I know when not to! Lol. She will eat food and then decide she doesn't like it, and just spit it out on the table or wherever we are, and think nothing of it. She swears like a sailor when watching her game show and someone gets a question wrong. She's digustingly messy and does not clean up after herself. She almost never wears a bra, and it's obvious when she's not wearing one. She will often just take it off and stuff it into the couch or whatever.

So, my dilemma - my family (me, my wife, kids, and my wife's parents, her sisters, and sisters' kids) have a Mexico vacation planned. We took my mom last time we went a few years ago, but that was before the dementia was diagnosed. Even then I noticed some early problems with her. She would just disappear at times, not answer her phone, stay in her room while we were all enjoying ourselves at the resort. But now at the level she's at, I am torn on whether or not to bring her. On the one hand, I'm thinking she doesn't have much time left. She's 78 and has health issues. And she keeps she telling me she wants to go back to Mexico with us. So I feel like this could be my last vacation with her. On the other hand, and this is where I feel guilty, I REALLY DON'T WANT TO BRING HER. And I know my wife and family don't want her to go. I can't blame them. If she goes, my time and focus will be divided between her and them, and that's not fair to them. But I can't put not bringing her on them. It's mainly me. I need a break from all this. And I feel if I brought her, it would just really put a massive damper on the vacation.

There's an AL/MC place local that offers respite care, but I'm hesitant to do that. I'm trying to ask other family members to take care of her, but not having luck. Regardless, I don't know how to lie to her without her knowing we are going on a vacation. She's not so far gone that she's unaware to the point she can't figure it out.

I just don't know what do about this....

Marianne*

I can totally relate to the guilt about leaving and going somewhere you know your LO with D would want to go.  It's so hard and I'm sorry for all of us dealing with guilt.  

Here's the thing, if you bring her you're not going to enjoy yourself.  It's the simple truth.  Your time will be dedicated to making sure that she is safe, not doing things that might disgust others, etc.  The vacation for you will be all about her.  Is this a vacation for her or you?  It sounds like on many levels this vacation is for you and your other family.  Your mom takes a lot of your time and energy and your other family misses you.  

Something that helps me a little with guilt is to think about what the PWD would have thought if they were in my shoes at my age.  My LO would want me to go and have fun with the family.  They would understand the emotional demand the disease requires and that relaxing and disconnecting from the disease can't happen if the PWD is there.

Honestly, using respite at AL/MC is probably the best scenario.  They will be equipped to deal with her. I  wonder if a family member who took her in, begrudgingly, will try contacting you to help them deal with her D behaviors.  That too, will put a damper on your time away as you'll still be "there".  

Telling some little therapeutic lies about the trip will probably need to happen.  Is there a physical condition she has where you can forge a letter from one of her doctors that she can't fly or cruise, or whatever? Is she legally incompetent?  Again, a letter stating that due to Covid those who are more "at risk" can't fly, cruise, etc.  It's important that the "you can't go" comes from some entity other than yourself that way you have nothing to do with it.  This might work.  

jfkoc

We went on a family vacation to the Bahamas. My husband had a family member with him at all times...mostly me. The whole time he thought he was back in Key West at Navel training and was happy as a clam sitting on the porch.

That said he did not belch/fart/spit out food or remove his clothes and mostly we did nothing but relax.

I am sorry that her family is not onboard to share with her care. I would make the decision easier.

Whatever you decide I would stop talking about the trip in front of her.

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King Boo

Mixing emotions with decision making happens to all of us, but the outcome is seldom good.

Care needs drive the decision making.

It would be a disastrous waste of money to go to Mexico and ruin 10plue other persons vacation.  Not to mention YOURS.

This is your time away to recover from the demands of caregiving and re connect with others in your family.

Absolutely use respite services - helps evaluate the basics of the facility too (though you really cannot compare a respite stay to a placement with an adjustment period).

Learn the art of the 'fiblet'.  Frank truth is no longer productive.  She cannot process it.

Stop mentioning the vacation..  If it comes up, tell her you have to 'cancel' it because you have to be away for work at a conference.  When it is time to leave, you have a flood, or roofing problem, that will be fixed while you and your family are away at the conference (which was limited to spouse and kids).  She's staying nearby for a few days to be 'safe.'

Don't bring this up in advance, she'll obsess and pitch a fit. 

It will be easier if you recognize that such international travel is beyond her skill set at this point.  And possibly, a safety issue for all.

harshedbuzz

RunningWorried76 wrote:

Looking for advice on how all the caregivers on here handle vacations. Bear with me me, please, if you have time to read this.

I am sorry you are dealing with this situation. 

Background: My mom lives with me and has roughly moderate level dementia. Long term memory great. Short term memory, focus level, and behaviors awful. With the help of a home aide, I give her her meds, make sure she showers properly (she can do it, she just sometimes steps in for 2 minutes then steps out without washing), cook for her, and basically just guide her through the day. She is completely non-aggressive and does whatever I ask, but denies anything is wrong with her. Cannot even say the D word around her (and I don't anymore).

It's great that you have realized that reminding her she has dementia was a non-starter. It took me some time to get there and I wish I'd smartened up sooner. 

Her denial is likely anosognosia- a condition that prevents a person with dementia from recognizing that they have had a cognitive shift. In their mind- their reality- they are perfectly capable same as they have always been. 

Some of her worst behaviors are: Overeating: Especially whenever we have a party or small celebration, for example Mother's Day yesterday, she will just eat and eat and eat, no matter how many times we try to tell her to slow down. Many times she will then go into the bathroom and vomit. Taking the food away on an average day works, but at a party is not an option as everyone else is still eating. Trying to distract her doesn't help. She will just keep asking, or keep coming back to the food.

So long as your home is her home, she should be accommodated in it. Perhaps by setting her up to be successful at the party. This might mean a sit down dinner rather than a buffet or having a celebration that is less foodcentric and focused on an activity. 

Lack of activity: All she wants to do is sit in her recliner and watch Who Wants to Be A Millionaire and/or listen to music. All day long. We get her to walk sometimes for some exercise, but it's difficult. As a result of these two issues, she is gaining weight. What's comical is all she does is point out overweight people, particularly some of her brothers and sisters.

My dad was like this, too. He basically held down the couch until he went into MC and then lounged all day on his bed. We tried walking with him and even bringing in PT but nothing helped. Since mom likes music, would she be open to dancing?

Lack of manners: This is probably the toughest thing to get used to for me. She burps and farts loudly no matter where we are or who is around, and often. I mean, I do this to an extent, but I know when not to! Lol. She will eat food and then decide she doesn't like it, and just spit it out on the table or wherever we are, and think nothing of it. She swears like a sailor when watching her game show and someone gets a question wrong. She's digustingly messy and does not clean up after herself. She almost never wears a bra, and it's obvious when she's not wearing one. She will often just take it off and stuff it into the couch or whatever.

This is a combination of a lack of social filter and of empathy. It sounds as though she no longer cares or perhaps even understands how her behavior makes others feel. 

So, my dilemma - my family (me, my wife, kids, and my wife's parents, her sisters, and sisters' kids) have a Mexico vacation planned.

So this would basically be your mom crashing your wife's family's vacation? I kind of feel you don't have a right to potentially spoil an expensive vacation for others. 

We took my mom last time we went a few years ago, but that was before the dementia was diagnosed. Even then I noticed some early problems with her. She would just disappear at times, not answer her phone, stay in her room while we were all enjoying ourselves at the resort. But now at the level she's at, I am torn on whether or not to bring her. On the one hand, I'm thinking she doesn't have much time left. She's 78 and has health issues.

It sounds like the disease has progressed since your last trip. There is every possibility that being in a new place and away from her routines will cause an uptick in anxiety and disruptive behavior. It's even possible she won't get much out of the trip. My parents had a house in Florida where they spent winters; after dad was diagnosed in midstages I felt terrible keeping him here up north where I could keep an eye and help my mom. Dad complained constantly about all of the fun and activities he was missing- daily swims, golf with the guys a couple times a week and dinner with a group of friends weekly. It wasn't until I'd gone down to sell the place that the neighbors with whom he claimed he'd been socializing revealed he hadn't been doing any of those things. 

And she keeps she telling me she wants to go back to Mexico with us. So I feel like this could be my last vacation with her. On the other hand, and this is where I feel guilty, I REALLY DON'T WANT TO BRING HER. And I know my wife and family don't want her to go. I can't blame them.

I'd say majority rules here. You could always try a shorter and closer trip with her if you feel guilty about not taking her. Perhaps do that first so you would have a sense of how poorly this might go in Mexico so you can lose the guilt when you take that trip. 

If she goes, my time and focus will be divided between her and them, and that's not fair to them. But I can't put not bringing her on them. It's mainly me. I need a break from all this. And I feel if I brought her, it would just really put a massive damper on the vacation.

So don't bring her. You deserve a vacation that is a vacation from the things that are stressors in your daily life. A break will likely make you a better and more patient caregiver. 

There's an AL/MC place local that offers respite care, but I'm hesitant to do that. I'm trying to ask other family members to take care of her, but not having luck. Regardless, I don't know how to lie to her without her knowing we are going on a vacation. She's not so far gone that she's unaware to the point she can't figure it out.

A well chosen MCF will likely provide better care than a reluctant relative. Perhaps you could ask her regular caregiver to visit there as a "friend" to provide some continuity. 

Given that she has other health issues, I might pose the MCF as a short term rehab related to getting her stronger on her feet. Most respite stays are a minimum 2 weeks or more; perhaps you can move her in before you start packing for the trip. 

I just don't know what do about this....

May flowers

My husband and I were in the same boat planning a vacation in February. While we don’t have as much family going as you do, we do have our children and have had very little “down time” with them in the past year. 

We went back and forth over whether to take his dad. It came down to this, if he came we would not all be able to do activities together. One person would have to be with my FIL all the time as he would not want to be out on the boat, at the beach, etc. Plus, it would have been a huge source of stress for him trying to learn a new place and he would probably just sit and do nothing. So it came down to this for us, would it be fun for him? No. And it would have not been much of a vacation for us either. 

I think sometimes their memory of things makes us think they will enjoy them again, but the fact is my FIL didn’t enjoy things he used to. Anything out of his routine is just added stress and anxiety.

abc123

I think you and your family deserve a vacation without having to be caregivers. PWD always seem to consume everyone’s time and energy. A true vacation should not include a PWD who is in advanced stages. I’m sorry you are having a rough time.

RunningWorried76

Thank you all for taking the time to respond. It still feels difficult, but the responses here do make me feel better to decide not to bring her. She likely would not *really* enjoy the trip, even though she might say otherwise. When we last took her 2 years ago, pre-diagnosis, her hiding out in her room most of the time led me to believe she didn't really enjoy it then, even though she swears it was the best time of her life. It will be even worse now, I'm sure, and very difficult for all of the rest of us.     

So, I have decided not to take her. Someone mentioned not to tell her. We have not told her at all yet. But sometimes the kids or the in-laws will forget and accidentally talk about the trip in front of her, and I have to shut down or divert the conversation.

Now the hard part is what do with her while we are gone. The two best options based on what you have all said (and what I feel based on my circumstances) are to either let her stay here at the house and have the hired caregiver watch her near fulltime, or put her in respite care for 2 weeks. Both options frighten/stress me out! The good news is I have signed her up for the Adult Day Care at the place that offers respite care. She'll be going there 1-2 days a week (at first, hopefully more eventually...) starting next month. So if we leave her there for 2 weeks it at least won't be a complete shock to her. But it still causes me to feel guilty....

Why couldn't I be more 'cold' and less guilt-ridden. lol. Sigh.

Iris L.

RunningWorried76 wrote:

 So if we leave her there for 2 weeks 

But it still causes me to feel guilty....

Why couldn't I be more 'cold' and less guilt-ridden. lol. Sigh.

---

May I add something?  I think it will help you to change your perspective and change your language.  You are not "leaving her" anywhere; you would be placing her in the best environment for her situation.  In other words, you would be providing for her needs.  She needs safety and consistency and a low level of stressors.

As time goes on, many PWDs don't remember specific events, but do "remember" feelings.  They remember feeling confused or feeling bad about something, even if they don't remember why.  PWDs also pick up emotional temperature from the people around them.  If people feel guilty or are acting surupticiuosly, they often become anxious without knowing why.    

Iris L