Anything wrong with taking your mom, who lives in memory care with severe dementia, to doctor appointments but not on trips?

Welcome.
"Is there something wrong with me..?"

NO. NO & More NO.
You sound like a loving daughter, with a kind heart & sensible thinking mind.

Your brother however..

Full of nice ideas without the common sense. Wishing thinking. Even fantasy level... enter the wavy lines & sparkles ✨️

I can see Mother & he, blissfully sipping on tropical drinks by the pool, enjoyjng a stroll around a local market, staying up late giggling over a funny late night classic movie..

He's a dreamer.

Your brother is crazy! He doesn’t have a clue what is going on.

First of all, he lives out of state and only sees her once a year! I’m glad that you told him to shove it and blocked his number.

He isn’t going to listen to reason so why even bother trying to get through to him. It would be a waste of time and energy.

Plus the only thing that a conversation with him would accomplish is that you would become more frustrated.

I am so sorry that you are going through this situation. You have enough to deal with.

Are you POA for your mom?

Of course, your mom needs to be in memory care. She isn’t able to go running around doing “fun” things. Your brother is completely delusional.

Nothing wrong with you, you are realistic. Your brother is a dreamer. You could ask him to try something simpler, like a stroll around the grounds or a lunch out to get a better idea of the difficulties. A full day out could be a disaster for all involved. But as others said, it sounds like he won't listen to reason.
Beyond the necessary doctor visits, my mom and I go out twice a week, to a bingo morning at the senior center and to church on Sundays. Last year my sister suggested I take her out more. She really didn't understand the energy it takes, even just to think of and plan for something we might enjoy.

I skimmed some of your past posts. You have a lot going on. You are the only one who ever took care of your mother. You are spending your own money. She has a husband who left her when her dementia got to the point where she didn't recognize him. You used to have POA, but your mother switched it to your brother because of his manipulation. Your brother has taken money from your mother. You have health issues.

Is all of this correct?

I'm not sure about the POA situation now, because you pay all of her bills and taxes? Did you get POA back from him?

I assume you are her HCPOA. I also assume her husband is totally out of the picture, and has divorced her. He can't lay any claim on her estate? Was there a prenuptial agreement?

Why is your brother using your mother's money for this ridiculous trip to the desert, while you spend your own money on her?

I'd make him pay (out of your mother's money) for anything you spend for your mother, AND for your TIME doing all the things for her. I know you say the money doesn't matter, but in my case it made me feel less resentful of my brothers because I was the one who had to do all the local sibling stuff for my mother (and my mother was not nice to me; perhaps I would have felt differently for being paid for my time if this wasn't the case...regardless, I was always paid for any out-of-pocket expenses).

In my case, my brothers didn't fight me about being paid (actually, gifted the money), because they were glad it wasn't them. My mother in a fit of pique took away POA from me, too. At that point, I referred all q's re payments to my brother the out of state POA.

BTW, it sounds dangerous for you to be hauling your mother to medical appointments. Isn't there a facility van that will take her? That's what I did for my mother. I went along for free. Yes, there was a charge, but I didn't pay it -- she did.

I get the sense that you really aren't going to make any demands of your brother like I suggested above. That is a shame. Or will you?

Because you're the one in the midst of all your mom has going on in her everyday life, you have to be more of the realist. And that's a good thing. You're doing a great job.
I say let your brother take your mom away on a little trip so he can experience first hand exactly the care she requires and I'll bet anything that he'll come back singing a different tune, and won't ever again want to take her out of the facility or have you to.
So just hang tight. Reality will be heading his way soon.

From what you describe, the likelihood that there will be a huge problem is very high. I don't think taking her on trips is a good idea.

Aside from going to the doctor and taking my mother for an occasional visit to my father at his NH, I do not take her anywhere anymore. Going out takes a huge toll on her, she is exhausted and I am a nervous wreck worrying about getting her in and out of the car and worrying she might fall. No additional trips for her or for me.

Let him take her somewhere local for just the day all by himself with her. See if he gets his eyes opened.

Will Hospice allow this? I can't believe they allow u to still take her to doctor visits. Late stage Dementia, I would not even bother. The facility doctor should be able to handle anything Mom needs.

Tell brother that if he wants to take Mom on a short vacation, like you he pays out of his own pocket and he talks to the head Nurse at the facility to see if what he wants to do is feasible. If he still wants to do it, allow him. He will see that even being around someone this late in their Dementia is no fun. He will probably bring her back early because he is taking her out of her comfort zone and he is a stranger and so is the aide. Some people have to learn by doing. Let him do.

She has severe dementia, lives in a MC facility, and is on hospice. Her life at this point is pretty much being kept calm, clean, and out of pain. Maybe she has good days and can enjoy a meal or treat still.

Taking her on a trip somewhere is beyond total nonsense. It's reckless. It will endanger her safety an well-being. The staff of the memory care she lives in should explain this to your brother.

If he starts drama with you tell him to (6th letter of the alphabet)-off. Then walk away.

I don't know which of you has your mother's POA. If it's you then you can simply tell the MC facility that she is not allowed to go.

I’m with Geaton! Let HIM haul her somewhere for a day or two, you don’t interfere ONE IOTA (not even helping pack or offering advice)—and let him see for himself that it is just 1000x easier to leave her right where she is, all the time, seen to by the HIGHLY PAID staff. Back awaaayyyy!

Your brother is unrealistic. You have to be POA? You need to tell him what the rules are and why ONCE and he needs to act as you tell him to. Or not at all. Sorry this is all on you and when "help" comes it presents only more problems.

Thank you all! My thoughts exactly. Mom has so many medical conditions. I didn't think it was safe at all. To answer some questions, my brother is POA as previous poster said, but I do mom's taxes. I collect her forms, etc and my tax lady does her taxes, but the money for it comes out of my mom's account. My brother said he couldn't handle doing them after doing them for one year. As for mom's mc place, I make sure it continues to get paid, but it comes out of my mom's account, and that her insurance is paying up. And, yes I had to get her house ready for sale years ago, got the realtor, and did all the paperwork for it. My brother just docusigned. My mom was a realist also, I like how you framed that, and she made sure everything was taken care of. I pay for things for my mom and then write myself a check from her account. It's just hard keeping up with how much I've spent at times. I was shocked but the director at mom's place told him it was a good idea for him to take her, at least that's what he told me. He is taking one of their caregivers with him. Yes, I'm the only one here for my mom and there has been a lot of drama with my dreamer brother. He is really spacy/defiant and we have never really gotten along. I still take my mom to the doctor because she has to see a urologist for her pessary/uterine/bladder prolapse. I tried to have her go without the pessary but the caregivers said it was uncomfortable for her and they would always have to push her parts back inside. I'm trying to get that taken care of as much as I can now, because I don't know how much longer she'll be able to go out to get it done. I'll post again after this trip.

Well I know as well as you do that hospice doesn’t forbid much. At most, they can’t double bill, so she would have to go off hospice, for instance, if she broke her leg and needed to go into the hospital to have it taken care of. Then right back on hospice which is very simple to do.

My DH aunt, dementia,bedbound and on hospice behaves as if she is on a parade float when being placed in a gurney to take an ambulance to go out.
When there was a Hurricane near her home, she had to evacuate. I took her hours away to a hotel. She was a champ. At that point she was using a walker.
Each person is different and responds differently to others and to different circumstances.
Let’s all hope she has moments of clarity and enjoys being with her son, warts and all and that brother has a few moments of clarity as well.

Why do you care what he says and thinks?

The one day trip went well. There was a caregiver or two from my mom's place that went so I don't think my brother had to do any changing or helping my mom, just spending time with her in the desert at the Airbnb. Mom came back safely today and my family and I was able to hang out with her at her place. He just needs to remember I don't have caregivers who help me at my mom's appointments and when I take her anywhere. He didn't get the real experience of the work it takes, but I'm thankful mom was safe and he was able to spend time with her.

When my mom with dementia was in a NH, I had them transport her with an aide via ambulette to appointments.

In my view, this was the only safe way to accomplish outside "trips" of any sort

I think you should consider not trying to do these appointments alone in the future.

Tell your brother that he can pick up your mom and take her on any trip that he feels like.

Rose,

I am glad that your mom and brother had an enjoyable time. It was wise of him to bring help along. This certainly reduces anxiety and additional work caring for your mom. I would do the same thing when you have to take her places. Hire additional people to assist you.

I can’t imagine taking someone in that condition on a vacation. My in-laws recently described their cruise friend who took a husband with dementia on the boat. She had a miserable time trying to keep up with him. I don’t take my own mother, who is 75 and mentally ill, anywhere just for fun. I only take her to the doctor, and that is more than the amount of time I want to spend with her.

Rose
I want to thank you for coming back to the forum and letting us know that all went well and that you and brother worked together. We do have some posters who report partnership with siblings on caring for their parents but usually at most it seems to be all on the one child and their spouse if they are lucky enough to have a spouse who will assist.

I also want to agree with the others that you should have help to take your mom when you decide to take her out, doctor appointment or whatever.
I have had those moments where I realized I should never go alone with an elder. Like with any other undertaking, the right tools make the job so much easier, like a transport wheel chair when needed, help with getting in and out of the car, etc. and yes, assistance with hygiene if necessary.

I hope being able to discuss this on the forum helped with your understandable anxiety over moms vaca with brother.

It sounds like you are the POA for your mother. If that is correct, you make the decisions for her well being and safety. Not your brother nor other family. You are absolutely correct that to take a person with dementia and other health challenges as you describe on any trip is not in the best interest of the patient. Dementia patients do best with routines and familiar surroundings and, changing any of this can actually cause the pt much anxiety and distress to put it mildly.
It sounds like your brother may have some guilt about not being around and,trying to soothe himself and shortcomings by such a ' trip'.
As the POA, you can tell and explain this to him and suggest he find something else to do special with his mother at her familiar place of residence. If necessary, get her PCP involved to explain her fragile status to the brother ( her son).

Sometimes I'm really glad I'm an only child!

If you are no longer your mother's POA and your brother is, I would sure not be paying anything toward her care because your brother needs to see exactly how much it costs for her care.

As far as the "fun" stuff. My mom used to love to go and do, even if she just rode around town with me while I ran errands. As her mind deteriorated, even those little trips were harder on her - she was perpetually disoriented in the car - so I quit taking her out on those types of trips. She and my stepdad also traveled extensively, so I thought it would be nice to take one last trip before her mind was too far gone. She never liked flying, so we made it a driving vacation. I can't tell you how many times I answered "are we there yet?" or "why do we have to drive so far?". And I kept losing her. I couldn't even go into a gas station to go to the bathroom without getting her out of the car to go in with me, or she would (and did) get out and wander off while I was inside, and once she even tried to drive the car from the pump to the door of the store for me (yikes!). I had to be constantly vigilant of her so that I did NOT enjoy the trip myself, which I had thought when we started out it would be more like a mother/daughter road trip - my foolish thoughts. Once I changed my mindset about my role on the trip, it wasn't so bad (although it was far from a vacation for me), but she wasn't enjoying it either. She was perpetually confused which caused several angry outbursts every day, meals were a big challenge because she struggles with reading comprehension and decision-making but she still wanted to know everything on the menu (mercy fibs helped here), and she basically didn't sleep in hotels due to sundowning and unfamiliarity. It's true - I could've hired a caregiver to take the trip with us, but it wouldn't have made her enjoyment any greater and really, I would still have had to tend her quite a bit because I couldn't expect a paid person to do 24 hour a day care. As far as what we went and saw? She couldn't have told you even one thing we saw a week later. A day trip - maybe - but based on my experience on our vacation, I don't really think she would get any enjoyment from it. I believe that for dementia patients, familiarity is comforting and even critical.

She still asks to go places and do things, but I know from experience that she really doesn't want to do any of what she asks to do. She is so much happier and settled at home in her memory care. I often take pictures of her old trips when I visit with her and we walk down "memory" lane and I think she enjoys that just as much as she would enjoy a trip now, except that I'm pretty sure she makes up stories to go with the pictures rather than remembering the trip itself. I'm good with that!

My suggestion is this. Next time "out of state brother" whines about your not taking your cognitive disabled and incontinent Mother for a visit to see him or go on day visits, say "that you hope he can arrange those activities soon. Tell him mom may not know who he is but his spending time traveling with Mom would be good for him." Any time that know-it-all, fake loving son suggests something that YOU should do, turn it around on him.

Hey Rose, thanks for the memories your story evoked in me. My mother had lung cancer and was dying in a nursing home, I was 8+ months pregnant and I had reached my limit of exhaustion physically and emotionally. I got a call from one of the nurses that my errant brother had waited for the night shift and removed my mother to his home where he and his wife planned to keep her in their home 24 hours a day, but they would care for her after working all day. I didn't say a word to either of them, because I knew they had no clue about end-of-life care.

Well, much to my delight, she was returned to the nursing home within 2 days because she had crapped all over their beautiful new sofa and had crapped standing up in their hallway.............all the way down to the floor. That's the gift they received after arriving home from work. I was so proud of my mom for teaching a farewell lesson.

Never saw him or heard from him again............he shirked back into the darkness where he lived. It's such an endearing memory I carry with me that always brings a smile.

Unfortunately, there will always be those people who either demand too much of you as a caregiver, or criticize what you do. They never offer to take on any of your burden. Here is a simple but hopefully instructive example: a friend kept pestering me to set up a "Caring Bridge" account so everyone could find out what is going on with my husband and his ongoing dementia. I said I did not have the time to do that, and that I was okay with sending occasional updates via email. Then she offered to take care of this. Well, all she did was set up a Caring Bridge website and then email me to be the "co-sponsor" and to starting sending photos, updates, and other info to that website. D'oh! No one other than a caregiver understands how much time is required to do a job correctly.

At her stage of dementia, being in a new place might actually be frightening and really hard for her. Especially with him, who she does not remember and regards as a stranger. It could be viewed as a cruel, rather than a nice, thing to do that to her. Dragging her out on a trip to satisfy his guilt over not being more helpful is a pretty selfish thing to do, in my opinion. You are right and there isn't a thing wrong with your not doing that for - TO! - her.

ETA: I just read the update and I'm glad you had a nice time! I still think there's nothing wrong with your not taking her on big trips like that. :)

Before he books her "vacation" at some desert house he better check the laws of the State and or the facility about taking someone on an Overnight outing. There may be payment needed to hold the bed.
The person that makes the decision here is the one that has POA.
If that person determines that it is not safe for mom to leave overnight then they can deny the request.
I think he has no idea what he is getting himself in for.
If he thinks he can handle it let him take her out for a day. I bet he will change his tune.

Lastly, although this is now first: copy and paste this, edit it and send it to your brother with one of the books I mention below).

He doesn't understand what dementia is nor how it affects a person's brain / behavior / mental and psychological state. Tell him to call and/or visit Teepa Snow's website / look at on-line webinars to educate himself.

I hope that you are managing your mom's finances and have all the legal authority to do so. Rather than 'get mad' at your bro - which will upset you, perhaps tell him about Teepa AND send him some 'easy to read' books on what dementia is.

Hopefully, when he understands the full picture, he will take another position and support you.

And only take your mom out on a day trip.
No vacation / no overnights.
The key to managing calmness is familar surroundings and people (staff, you).
Taking her away will / could really trigger her with lots of fear.
And REMIND him that she may not / likely won't remember him - who he is so taking her 'away' is like a stranger taking her somewhere. Not a good idea at all.

The 'most' one can do with a person with advanced dementia (as one of my client's has) is be there with them, be gentle / take their hand or touch / massage as appropriate (people with dementia usually do not get touched much and it is really important - they FEEL it if coming through as a loving gesture). Be aware of tone of voice.

On behalf of your bro's position / understanding, I offer the following from experience with my client, who is also incontinent with advanced dementia.
* Recently, I was her escort on a facility bus for a hospital appointment.
* She DID seem to enjoy the scenary outside (I had her facing gardens / flowers as best I could given the environment (a medical facility / waiting for the bus to return)
* With the lack of information your bro has, I, too, would want (and recommend) someone - an experienced caregiver - accompanying him on a day outing.

So ... he isn't as far off as I initially thought. He just is not educated about these things so pointing the finger at YOU due to his ignorance. I'd turn that finger around, and point one at him (no, not really). It is best to try to keep the peace by way of YOU blocking him out as you need. You are triggered by him and only YOU can change that. If you learn (?) to feel okay with the visiting / quality of care you are now giving (i.e., not feeling guilty), perhaps his words wouldn't trigger you as they do - and then this is a family dynamic. Feel more confident in yourself. This is not easy for you - at all. Plus you have a young family.

You are doing just fine. Gain more self-confidence in what you are doing for your mom.

When your bro 'starts in,' tell him

"I am doing the best I can. Mom enjoys my visits. I am going to hang up now." (And ... did you read the book(s) I sent you?) ... then do hang up. Meditate, do something nice for yourself to shift the energy. Bake something, give you child(s) a hug... go for a jog.

The difference is that I know / understand how the brain processes (or could, no one really knows) incoming information. They may feel frightened by some visuals, noise, sudden moves, tone of voice. And, they may be triggered and get angry - it depends on how your mom generally reacts, although that could change when the environment changes.

You and your bro may benefit from calling Teepa Snow's office or looking at her website on-line. Also, ask your brother to contact his 'local' dementia / Alzheimer Association for more information.

There is ABSOLUTELY nothing wrong with you. You are doing what you want and visiting her as you do is perfectly fine. Perhaps bring a portable DVD player and show her some gardens or animal documentaries (my client [and me . . .] loves watching those.

Gena / Touch Matters

Rose 🌹,
You are absolutely right. You do not have to take mom out to “fun” outings which can be a disaster! You would need an ambulette or an accessible vehicle so she can go in with her wheelchair …you already take her to doctors appointments…that’s enough. Brother has no clue whatsoever how difficult it is to get mother around. He’s never taken care of her! You have. I can’t believe how selfish and clueless he is. He doesn’t have mother’s best interests in mind. You do. Hugs 🤗

I hope you have POA and not him. You are caring for your mom. Bring whatever brings joy to her in her memory care unit. Don't worry about her having "fun outings" since that is beyond your abilities.