Should my aunt- having recently moved into AL - have a phone?

three4rd

Hi,

Part of her sundowning has been to have episodes where she's very confused and worried about where her sister is, or, most recently, where her (deceased) father is. Generally, someone in the family (but unfortunately most recently the police) gets a frantic call from her at all hours about these types of concerns.

Now, being in an AL memory care unit as of the past Thursday, she as of yet has no phone. Is it advisable to give her one? My brother is of the mind to hold off for fear that she'll again start calling neighbors, us, or even the police. My thought, however, is that what's the difference if we wait 2 weeks or 2 months? The disease does not adhere to a timeline. One concern I have is - if she gets into an episode and discovers there's no phone in the room, will that make it worse? How will she react? Will she then start wondering around and ask another resident or staff member (that would probably be the best since they can then say the right words to calm her down) to use a phone? I'd say hook up the phone and see what happens.

Another question - my brother wants to take her out for a Labor Day gathering at his house tomorrow. His adult children and grandkids will be there as well as my Mom. Is this advisable given that my aunt has only been in the place a few days? Since he'll be driving around her old stomping grounds to pick her up not that far from her house, will it result in her thinking that he'll be taking her back home afterwards? He's also picking up my Mom (different AL place) as well and taking them both over to his place together.

I understand the nice idea of wanting to get them together - especially since my aunt is 99 and my mom nearly 102 - but is it the best thing from the respects of my aunt getting oriented and used to her new surroundings? I don't know, but I can see a few red flags. Also, I don't think that thus far my Mom has been told anything as to what happened to her sister. They generally used to call each other every night, so I have no idea what my Mom thinks if she's been trying and can't get ahold of her at her house. AND, what happens if she asks (in the midst of this Labor Day gathering)…why haven't you been answering your phone? I think we need to be careful here. I'm hoping that my brother's side of the family has all been made aware of the entire situation and have been told that, so far at least, we've been saying that my aunt is in "for rehab" after having been taken to the hospital by the police after she called them this past Monday evening. I personally would have not done this quite so soon. Pretty sure my aunt is of the mind that, at some point, she'll be going back home.

Thanks for any thoughts.

H1235

If she has a history of making frantic calls to the police I would not give her the phone, especially if she is upset about the move(to rehab). As far as waiting a few weeks and then giving it to her? I’m not so sure things are going to go any better in a couple of weeks. I suppose if you give it back and start having any problems at all you just take it away and be done with it. I’ve wondered how much longer mom is going to be able to use her phone. She keeps changing settings so calls won’t come in(it’s a very simple phone). She says it’s the phone that’s not working right and wants a new one. Labor Day with family. I wouldn’t recommend it. Most discussions I’ve seen usually suggest not taking your LO out for a couple of weeks after the move so they have time to adjust to their new surroundings. I would also be worried that someone lets it slip that she is not in rehab and not going home again. Kids hear mom and dad talking then say something, it could get ugly. My brother is taking mom to his house for the holiday. She lived with him for a year before moving to AL. He still has not cleaned out her room and brought her unneeded things back to her house. (she is a hoarder). I expect her to make a big fuss about wanting to bring a bunch of unnecessary things back to AL. Getting family on the same page can be difficult that is for sure. I hope all goes well.

three4rd

H125…thanks for all that. I remain a bit unsure about the whole phone issue, but definitely agree about not taking my aunt out quite this soon. The intentions are surely good and no harm intended - basically that of giving my Mom and her sister a chance to see each other - but I think there's the potential for things to go awry. I don't know what sort of ideas it might instill in my aunt's mind. You're exposing her to a familiar setting (since my brother often has these gatherings and tries to involve the two ladies), but this is a totally different and new situation. No idea how she'll react, especially afterwards. It could make for awkward conversation at the least. He assumedly contacted the AL center and told them he's taking her out, so it remains to see how it goes I imagine. I'm not going to be there so will probably hear from him later tomorrow evening. If anything, I would have said for maybe his son and daughter to go over and visit for a bit. It was mentioned to him that it's best to keep the initial weeks free of much intervention - and that makes sense - but it would seem to me that it also works the other way - that of not exposing her to too much excitement by taking her out for visits.

M1

So glad to hear she's moved. No, she does not need a phone, and no, I would not take her out. Covid is still a risk at big gatherings, as are other respiratory illnesses now that the kids are back in school. The big groups are probably overwhelming for her too. I would let her settle in.

three4rd

M1….thanks for that reply. So it appears my brother is on target with regards to the phone. That's fine. I'd rather see her have TV for now. What should we tell our Mom though? I ask this being that she and my aunt have always called each other, usually every day.

Covid, also, is a HUGE concern, not to mention that my brother's grandkids are often sick the way it seems. The girl just started kindergarten, so who knows what germs she might be bringing along. I have to wonder what sort of response he got from the AL staff when mentioning that he plans to take our aunt out for a decent-sized family gathering. I'd hazard to guess that they would have advised against it. Well, I wasn't party to any of it so it's out of my hands!

towhee

Happy to hear your aunt is safe. If your aunt is used to a landline just tell her it will take a while to get a phone hooked up, or if she was using a cell tell her it is a new service area and will take a while to change. Repeat as necessary. If you are worried about your mom not hearing from her you could ask the staff to put on your aunts care plan that she gets to call her sister each day, but honestly unless she fixates on it during the day I would let the phone be, at least for a while. It is barely possible that once her care needs are fully met she might improve a little, but such improvement would only be temporary.

As for the family get-together, yes, it is probably a mistake but not something that you can control if you are not POA. If you can advise your brother that your aunt will need someone assigned to look after her, that she might need a quiet place to retreat to if she starts to be overwhelmed or seems tired, and that someone needs to be available to take her back to AL early if necessary, that would be helpful. Sometimes, what happens in these situations is that the PWD seems to be perfectly fine at an outside excursion, but when they get back to the AL they are overtired and have a meltdown, leaving the staff to deal with the aftermath. So you do want to check and see how she does when she gets back, and the day after.

three4rd

Towhee…thanks for your thoughts! Actually, my brother and I are both POA for our aunt. I shared some thoughts with my brother but haven't heard back from him and very likely won't until later today. I do know my Mom gets tired during these family gatherings and likely won't know where she is, but I'm sure will enjoy seeing everyone. About 2 weeks ago - before having fully decided on an AL place for my aunt - we took my aunt for a lunch at my Mom's AL place (with the idea of maybe getting the sisters together at the same facility). It went well and gave the staff a chance to casually observe and gain some insight into my aunt's behavior, but then later my aunt didn't seem all that impressed. She said the room and the place is "too small". Also my Mom's facility, from all I've heard from others who worked there, is not trained for MC, so we decided against it. Our hope is that just maybe my aunt will do really well where she is and possibly have greater interaction with the PC side of the facility. My brother and I were admittedly shocked to find that all the toiletries, etc. wind up going in a bag and safely stored in a closet, so that she has to ask everytime she wants something. I understand the rationale but we were disappointed to learn about this. Surely an inconvenience and, in her case, truly wouldn't be needed cause she's not about to start chomping on a bar of soap or drink from a bottle of shampoo. But, it is what it is.

harshedbuzz

@three4rd

In the interest of allowing your aunt to settle in, it would be best to avoid the family gatherings especially if she is oriented to place to a degree she would recognize where she is. Your brother might have a struggle getting her back into the facility, especially if they're staffed differently on weekends/holidays.

Because it is very early days, I would avoid visitors for now. It would be appropriate for you or your brother to stop in "to see how the rehab is coming along?" but not with an entourage.

I would hold off on the phone. There's no good that can come of it especially if it escalates to repeated calls to 911. In PA, this is a 3rd degree misdemeanor punishable by a fine of <$2500 and <1 year in jail. As POAs, you and your brother could be liable. This isn't likely outside of allowing a PWD to drive AMA, but why chance it?

Be careful around the TV. In some memory care communities, the model is for the residents' suite to function as a bedroom in a home is meant to— a place to rest. Residents are meant to be in living area, outside gardens and kitchen or at an activity. If they're successful watching alone, they miss out of socialization. If they struggle to operate the remote, then it becomes a source of frustration and upset.

Sometimes when PWD progress to a degree that they sundown, they have difficulty distinguishing between reality and what they saw on TV. This was a huge issue for dad. Initially, he would become afraid of hurricanes and wildfires thousands of miles from home believing they were right outside the door despite seeing otherwise through the windows. He also thought he was the victim of the crime dramas mom liked to watch at night. Sometimes he'd tell me the next day all about having been "raped and murdered by the bad guys the night before". He was still home with mom when this started, so she could oversee his viewing once we figured it out. I was able to put parental controls on their box to keep him off the channels that offer this kind of programming. We elected not to put a TV in his room when we moved him to MC. The facility had 5 communal TVs which they set to various popular genres— sports, game shows, old sit coms, old dramas and classic movies typically.

HB

MN Chickadee

I would not give her a phone now, or likely ever. They become huge issues for many families in your position and usually they have to take them away. I'd make a fib for that one - the company has to come install it, there's a wait list, maybe next week. The facility will call you if there's a problem, and I'm guessing will allow her to use the phone now and then. But I wouldn't go looking for ways to enable her calling you incessantly, or the police. I'd also skip the party. Taking them out of the facility in the first few weeks is often a bad idea unless the person is particularly easy going and compliant. Going back to old surroundings tends to reset their adjustment, and sometimes they refuse to return to the facility. Or when they get back they are doubly confused and sad. And PWD tend not to enjoy large parties, they get a sensory overload their broken minds can't process. I would keep her world small and simple in the coming weeks and let her adjust, and then decide what level of excitement she can tolerate. I guess it's up to your brother if he is going to insist on taking that on, but in my experience large gatherings are very hard on the PWD and not fair to them.

three4rd

HB….when you said, "In PA, this is a 3rd degree misdemeanor punishable by a fine of <$2500 and <1 year in jail. As POAs, you and your brother could be liable." - with regards to her calling the police - does that even apply if she's in AL? I figured that as long as she's no longer in her home, there'd be no issue. Most interesting for sure. I need to speak to the place about this - as well as the tv. It just seems so sad that my family will have no way to contact her, short of visiting. Also, I'm sure my Mom will greatly miss calling her since they've talked every day for many years.

MN…..your comment, "Taking them out of the facility in the first few weeks is often a bad idea unless the person is particularly easy going and compliant. Going back to old surroundings tends to reset their adjustment, and sometimes they refuse to return to the facility. Or when they get back they are doubly confused and sad" makes alot of sense. I'll have to find out how things went today. Haven't heard a word about it so far.

Thanks for the helpful replies!

harshedbuzz

@three4rd

I would imagine there's some leeway in the interpretation of the law. I've seen it applied to cars when POA did not prevent access.

My cousin was fined because her home security alarm made repeated false alarms. She had my then elderly grandmother with Parkinson's (in her 70s, slower but capable of independence) living with her because it was mutually beneficial. She would often be home alone or with her 2 young great-granddaughters and would let the dog in or out when the alarm was set which triggered an alarm. She never got the hang of over-riding the alarm with a passcode so police would turn up. My cousin, as owner of the system, was fined a couple hundred dollars.

HB

three4rd

Well, as it turned out, the Labor Day gathering went well. Sometime during the course of the afternoon my aunt was heard saying, "I live with a bunch of old ladies now!" Love it. So she was apparently way ahead of us. After all the fretting over how we were going to begin talking to her as to needing to leave her house, etc. she must have been thinking about it more than she let on. On the way home, instead of saying anything like "when am I going back home" she said to my brother, "what are we going to do about the house". Reports from the AL facility is that she's doing really well. Who would have thought? So far so good it seems.

Also, at this point we've decided to pass on hooking up either a tv or phone.

harshedbuzz

@three4rd

That is a great update.

H1235

Great news!