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Mom's travel update.... So it's time to decide to take mom to Texas for Thanksgiving or not and I desperately need advice. 3 weeks ago I was for it but now I feel that it would be very difficult to travel with mom at this point especially with the crowds at the airport and possible delays (Which is likely during holiday travel). My brother feels that he promised mom that one of us would go with her this holiday for a visit, therefore he wants to send her. He said if I didn't want to take her, he would send her with a friend of the family. He can't get off from work during holidays. So, she may be going either way as I am not her POA and my brother feels he should honor his promise (regardless of moms status). I know I will feel guilty and worry if I don't go but, I don't think it's a good idea anymore and I think we'd both be miserable. What do I do? Do I say, I don't think it's a good idea again and then just let her go with our family friend? I also feel like all my relatives are going to judge me for not wanting to travel with mom for the visit. I want to take her but I don't think it the best thing for her. Feeling stuck between a rock and a hard place. Please give me your thoughts.

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No way in Hades would I make that trip. None. At the stage your mother is at, I would bet getting out to dinner is a colossal challenge.

Just decline... it sounds like you have already told him why it isn’t a good idea. You don’t have to convince him... that isn’t your responsibility. As POA, it is HIS responsibility to understand his mom’s condition. Nothing you say will sink in, although I have used condescension successfully in the past, lol.

Just say, “Yup, well, since you are committed to arranging this trip, I wish you the best. We’ll have to agree to disagree on this one. If you get stuck, I am sure you will figure it out.”

And do ABSOLUTELY NOTHING. Don’t talk about it. Don’t brainstorm ideas with him. Don’t talk about it with your mom. Don’t help pack. Don’t talk to relatives about how to get mom there or what they need to know.

You are back to your own life. Ball is officially in his court.

When the rubber meets the road, I would imagine this trip will not happen. He may be suggesting family friend without having yet had a conversation with family friend about any of this. Even if she has indicated she might do this, that doesn’t mean she will follow through.

If she asks what you think - and if she has half a brain in her head, she will - go through what this would look like step-by-step with her including possible pitfalls listed above... do this ONCE. You say, “Sure, I can share with you what I see based on my experience and knowledge of dementia. I ultimately don’t think it is a good idea, but I do understand how it can look appealing from arm’s length. You have a good heart, and it is completely up to you whether you want to take on this level of responsibility.” Then, you don’t talk about it again.

I cannot imagine anyone with caregiving experience would take this on at this stage. It will probably just fall through the cracks.

If anyone in the family asks you if you are bringing mom, keep saying, “Brother wanted to handle that, you’d have to ask him what he is planning to do.” You can even add a “bless his heart, so sweet of him to want to, but he has a lot to sort out because anyone who understands (implying of course that the person you are talking to and you both are very knowledgeable, lol) dementia even at a basic level has to weigh the risks of causing rapid decline for mom. It’s a hard position to be in... so colored by emotion. Poor guy.” And maybe tack on a “I think it is just harder to see for someone who isn’t really in the trenches. My day to day interactions with Mom probably give me an advantage in having a better grasp on her reality... he’ll get there in his own time. I am not worried:)”

(snicker)

It can be very hard for people to understand that people with dementia are experiencing life on a totally different plane than we are. Putting yourself in their shoes, as we try to do for others, no longer works. It is hard to wrap the mind around that. They don’t experience joys as joys most of the time. He needs to realize that just because he THINKS it will be good for her because, in his right mind, he would like it, doesn’t mean it will be good for her. Even if she wants to. The fear and anxiety that comes along with anything outside of a very, narrow routine is huge and hurtful to the dementia patient. It is not kind. Such a paradigm shift, I know.

But, his not seeing it doesn’t make it your problem. Whatever happens, your mother will live. You can’t protect her from everything. Even if it isn’t great, she isn’t likely to remember it anyway. So let it be. Once you have educated him (which you already did) and the family friend (if she asks), this is no longer your burden.

Any family talk goes right back to him. You do not defend, you deflect. This is not on you. And you may have to put your armor on and realize people will talk about you. Oh well. In most families, people do anyway. Good luck.
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Floridagirl, after reading your responses on another thread I would bet that this is all about them not having to ruin their holiday by having to see mom.

Tell them that you have plans for the day that you believe mom will enjoy as much as she did last Christmas.

I am sorry that your brother and his wife have such disregard for you and your daughter, now mom is included. It is unfortunate that they can't see how shallow they are behaving.
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I see, Florida and Isthisreal. My mom loves long drives. She sings and tells stories and is really happy when in the car, but as I think about it, I wouldn't take my eyes off of her for a minute. Never know what she might do at a gas station if I had to go in to pay. Sorry, bad idea.
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Isthisrealyreal Nov 2019
Good idea for your mom. You are lucky that you have an activity that makes mom happy.

I am just a captive that can be chewed on.
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I would object heavily about her going and would REFUSE to be a part of "that foolishness." (and it IS a foolish thing to do) If the family friend is asked to go with her and consults you, give her your opinion as well. I highly suspect when the rubber meets the road, NOBODY in their right mind will want to take on the task of taking a dementia patient on a plane, during Thanksgiving travel no less!
EGADS!

Tell him NO, it is not a good idea and NO you will not be involved in traveling with her. If he wants to come to FL and travel to TX with her, LET HIM. Sometimes a person needs to experience what it really means to take care of someone with dementia.
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Here's another thing to consider -- there is a good chance that your mother could get sick from traveling through airports with holiday crowds. All of the other points already made are great, but I wanted to mention the good possibility of illness.

If your relatives want to see her, there are ways to do that with technology.

Do not be guilted or bullied into taking her yourself. You would become her personal attendant at all times. That is not fair to you.
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I would tell your brother that if he is going to do this really bad idea then he needs to send 2 others with you so that mom, who was moved into MC because she requires 24/7 care has enough assistance.

Please don't let him coerce you into taking this on single handed. It is so unfair that he promised that one of you would do this, knowing when he said it that he couldn't get time off over the holidays.

Change is so difficult when dementia is involved and you honestly don't know what her response will be. What happens if she panics 35000.00 feet high. Can't be calmed down, emergency landing at the closest airport and hospitalization in who knows where. Because they will not keep a plane in the air with a highly disruptive passenger on board. That is only one scenario that could happen with dementia.

Can you print something that explains how difficult being out of their comfort zone is for dementia patients, something short and to the point so your brother can read how difficult this is going to be on mom? He is playing ostrich and your mom can't make good choices, she may think it will all be okay and she can deal with all of it, but her brain is broken and she shouldn't be involved in deciding these things dear brother.

If it is dropped will she even remember that she was planning on going?

(My dad can remember the darndest things, and it is never the beneficial things either. Always the worst things he could remember are engraved in his head. Ugh!)

I do feel that your brother should provide you with assistance if he is insistent about sending mom. His great friend will not be a friend afterwards if it is solo. To many potential pitfalls for 1 person to handle. I would demand 2 aides so that everyone gets rest and has someone to help them help her.

Best of luck, it is such a difficult journey.
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Would it be possible to drive? That way you have so much more control over any situation that might come up.
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Isthisrealyreal Nov 2019
Oh my, that is not a good idea. Being trapped in a car with someone that has dementia by yourself for hours or days. BTDT, craziest idea of my life and I think that there is a recent post about driving our elderly loved ones any distance.

I think that you need 3 able bodied people to do a road trip with a demented senior, it is exhausting.
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I'd seriously consider if the trip could be very upsetting to her and likely cause her extreme emotional distress and sudden further decline. Plus, who cares for her when she arrives? Can you discuss it with her doctor? Is the brother POA? If so, it sounds like he's not listening to the truth or considering what's best for her, only trying to appease his conscience.

I'd likely consult with an attorney in your jurisdiction to see what the options are. I might consider taking legal action to prevent the trip. It's a lot, I know, and no one wants to create discord within the family, but, some things are just too ridiculous to tolerate. No one would take action that was not good for my mom, who can't protect herself. So, no, I wouldn't stand by and let him do this, if I felt it was detrimental to her well being. Other's opinions of me are fine, if, they are based on me standing up for my mom. But, that's just me.
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Yes, what does the doctor or even the head RN think about this. Maybe brother needs to talk to them. There was a video on FB where they searched an elderly lady who was in a wheelchair. Poor thing, she shook the whole time the security woman was doing the search. The woman was gentle but I think there was some Dementia involved. Not that this would happen but the anxiety this poor woman felt. For a Dementia patient the world is a scary place.

Does she have to go during the Holidays? You may get bumped, then what r u going to do? I would wait until after the New Year. Has ur brother ever flown. And asking friends to do it! Must have good friends or everyone is in LaLa land when it comes to Dementia.
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Floridagirl6 Nov 2019
Just to clarify, the family friend of 20+ years has helped in the Caretaking of mom over the last year before she went into MCF. She cared for my mom 1 day every other week while she lived at my brothers house and she visits her at the MCF occasionally. I'm not saying it's right to ask her because I wouldn't have felt comfortable asking her to travel with mom (only because, of mom's delicate situation that declines more with each day, not because of the friend). There's definitely plenty of people in LaLa Land when it comes to Dementia- I've encountered many of them. Thanks JoAnn29!
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Do not worry or care one bit about being judged. You could do the very best job in the world taking care of your mother and some people will still find something to judge you on, if you do not think it is in her best interest, or yours don't do it, and have regrets later. Your brother should be doing all the planning and traveling with her regardless of his job, he made the promise. I never would allow anyone outside our family take my mother on a plane to visit family, and now I would not let anyone take her out of the house without me for that matter. Go with your instincts. Tell brother how you feel in a tactful way, and decline if you feel it is the right thing to do. My brother wanted me to care for my dear brother at home for the remaining year of his life. He was a veteran, but I was caring for my mom 24/7, I declined, but we were still very involved. I would pack up my mother and rest of family and off we would go for a week and every other for about a year while my brother had chemo therapy. We stayed across from the VA. I do not feel at all guilty, we were very supportive up to the day he died. I did consider taking my brother in, but told my brother if we took him in he would have the responsibility to take care of him completely , make his meals, shower, and so on. My brother decided not to do it. What does the doctor think? Does he/she feel she will do ok traveling with a family friend. Is she stable enough to travel? Does it only take one person to care for her? Who will clean and change her? Who will feed her? I can certainly understand why you would be worried. Many questions, and concerns your brother should be made aware of. Sometimes siblings do not have a clue what is involved. Follow your instincts and go from there. Wishing you peace with your decision.
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Knowing your mom's condition and thinking it would be a bad idea says it all. Airports can be confusing for those us with our minds intact. How would it be for your mom? It was many years ago that my sister died and my mom decided for herself that she would be too much trouble to fly across the country to the funeral. I would have taken her with us - one son, one niece, and me. At the various airports and car rides I thought about what it would have been like if Mom had been along. Waking up in a strange place and not knowing where she was and freaking out, not remembering anyone there, getting tired where there was no place to rest, and all the possible conditions that would have been so awful for her. And I would have had two people helping me with her. Doing this trip alone with your mom may just be too difficult. Sad, but true. Does your brother really understand her condition?
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Floridagirl6 Nov 2019
Thank you for your comments ArtistDaughter! No, he doesn't understand the details just that mom isn't mom anymore and that she's declining and is more unaware of everything around her as each day passes. Since the day she was diagnosed I've offered him books I've read, told him about this platform and how helpful it is, told him about caregiver seminars I that are upcoming so he can go if he wants to but, he always declines and says he knows she's getting worse. In all fairness, he has 2 school aged kids (10 & 15years old) and works 8-10 hours 5 days a week so he doesn't have a bunch of free time. I'm not excusing anything just stating the facts. I believe everyone makes their own choices when faced with the diagnosis of a LO with Dementia or other cognitive issues on how to deal or not deal with life going forward. Although he has been very involved in moms care in many ways, I'm not sure but, I don't believe he's done much research on Dementia ALZ Patients as far as stages (and what to expect in them) and behaviors and what's actually behind them and how to cope with them and help mom cope with them and feel better, safe and loved.
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Your brother promised not you. If he is going to make this happen I would step out and say, "I refuse to participate in this situation, I believe that it will be traumatic for mom and I am not going to put her through it. You do as you please, but I won't be a party to it."

Anyone that judges you for standing up for your convictions is free to travel with her. Just because someone wants something doesn't mean it is a good idea to give it to them. It is easy for your brother to say he is going to do this, because he is dumping the doing part on you.

Stand strong and know that you are doing the best thing by saying it is such a bad idea, I refuse to participate.
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Floridagirl6 Nov 2019
Thank you for your comments isthisrealyreal!
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What others think of you is Not your business. Let them think whatever they want. Since your brother committed her to go to Texas, let him figure it out.

Guilt about what? This is a self imposed emotion, you seem to be suffering from FOG..
Fear leads to Obligation which leads to Guilt. All these are non productive ideals.

You can't control what others say or do.
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Floridagirl6 Nov 2019
Thank you DollyMe for your response. I feel guilt because I feel like my mom would do best if it was me there with her because I know her and her condition better than anyone (outside of the MCF employees, CGs and her drs) as I see her daily and I spend the most time with her; I feel very protective of her. By the same token, I do also understand that I can't always be there for her.
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Does she even remember that a promise was made?
Late stage dementia and crowds do not mix.
Do not be guilted or bullied into doing this.
Go with your gut.
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Floridagirl6 Nov 2019
She has not mentioned the promise but has mentioned wanting to go to Texas. After all, we used to visit atleast 2x a year when I was a kid and probably once every 2-3 years throughout my adulthood life. She's only been twice since her diagnosis (over the last 5-6 years). My mom is the oldest of 10 kids and the only 1 that moved away from Texas and (all her siblings but 2 had at least 4 kids, some had 6) so we visited often because all of our extended family was there.
So, are you saying that I should let them take her and just stay home and wait to hear about it or should I object more than I already have that she shouldn't go. I don't think my brother will change his mind. He doesn't have a full grasp of the details of what dementia patients are actually going through during their journey, (I can't educate him on it)he has to do that. That's not to say he doesn't love her or want what is best for our mother. I think he thinks she will enjoy it, and she may for a few minutes, but I think that about it. The cons of her traveling at this point in my opinion outweigh the pros considerably.
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