My brother, who has lived out of state for 30 years and comes to visit once a year at most, is complaining about me not taking mom with late-stage dementia out to do fun things/trips. She lives in a memory care facility and has been on hospice for a long time and I visit with her there and go to the family functions. I also set up and take her to all her medical appointments and take care of her necessities (bills, taxes, clothing, etc.).
Mom is completely incontinent, difficult to get in and out of the car (most of the time I have to get help from others to get her in the car and it's not an easy task to get her out), and she has tried to unlock the door while I'm driving. Mom is also a fall risk.
My brother is out for about a week and wants to use mom's money to pay for her to stay a day in the desert at some huge house because as he told me, "I asked her if she wanted to go and she said yes" Mind you, my mom says yes, all the time, and she does not understand. My brother has also told me she sees dead people/ghosts... hmm. She hasn't known who he is for years.
He wants to use her money for a caregiver to assist him.
My issue is him complaining about me that I don't take her anywhere. I pretty much told him to shove it and asked him what he has done for her, except plan on taking her on this one-day trip? She is safe at her memory care, is well taken care of, more than happy when I spend time with her there, and I have taken her on more trips he ever has. He comes and visits once a year or less and thinks it's okay to bash me because he plans to take her on a one-day trip. Is there something wrong with me not taking her on trips and just visiting with her at her place? It's a lot of work already at her stage for me to just take her to her appointments and I take care of her needs. I also have a young family to take care of and work full time. He badmouths me when I'm the one who has always been here for my mom, and he's the black sheep/troublemaker. I've had to finally block him from contacting me. Every time he visits, he starts drama, and I can't take it anymore.
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 🤗
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
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.
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. :)
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.
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!
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).
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.
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.
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.
Don’t rule out having a caregiver help you with an appointment if it would be easier on your mom or you.
You might even think of a short excursion you could do after the appointment if you didn’t have to handle everything yourself.
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.
Of course, it isn’t safe for your mom to go on a “fun” trip as your brother describes it but I wouldn’t appreciate that your mom appointed him as POA. It certainly would make me feel differently about how things should be handled since he is the POA.
I would be tempted to say, ‘Well, go for it! If you and the memory care feel comfortable with this and think it’s appropriate, then go ahead!’ But, it’s tricky because you are proving a point at your mother’s expense. It doesn’t seem like you are willing to do that.
I bet he would gain some respect for you though if he saw first hand how things are.
When my mom played my brother and I against each other. I got fed up and told mom that he could take over her care! Guess what happened?
He ended up apologizing to me. He even said that he heard my words over and over again in his head. It took him being in my position to realize the reality of mom’s situation.
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.
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.
Good catch JoAnn29.
I know that when my late husband was under hospice care in our home for the last 22 months of his life, all doctors appointments ceased and the hospice nurse or hospice PA handled any issues that arose.
Perhaps the OP meant that mom is under Palliative care as that is very different than hospice care. Perhaps she'll be back to explain.
An old woman with severe dementia who lives in a MC facility, is incontinent, a fall risk, and on hospice should not have to be put through the ordeal of being taken to the desert for the day with her son (who is a stranger to her now) to prove a point that it's a bad 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.
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.
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?
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.