Are outings/visits to home for LO in MC good or harmful?

Shan

My mom has been in MC for just over two months now and I’m really struggling with trying to figure out if it is better to always visit her there or if it is OK to take her for outings, or if taking her out of her safe surroundings and routine does more harm than good. For the most part, she has settled in to her new surroundings and my mom, who has always been more of a loaner is actually joining in on activities and even misses them if the activity director is off for a day. However, she does still say things like “I’m not sure how long I want to live here,” and “I have 4 daughters, I thought one of you would let me live with you”, and even “ I hate it hear and you need to take me to your home now,” on occasion. But she also talks about how much she likes her room and how nice all the people are there. So it’s not clear whether taking her to my home or my studio would make her sad seeing what she can’t have long term or if it gives some normality to her life because she can still do the things she enjoyed before MC. Because it took her a while to settle in, we didn’t take her out until about a month after the move I first started with short visits to my studio where I would let her help me with simple tasks like finding and removing discontinued samples from my library, or I’d let her look through paint sample books while I chose a color scheme for a job. She gets so excited to “go to work with me to help” and she tells all the staff that she’s going to work, and when she gets back they ask her how work was and she is thrilled to tell them she was a lot of help. So I know she enjoys it and it seems to give her purpose. In fact if I get busy and don’t have time to do the one day a week I started with her, she gets upset and asks why she can’t work with me anymore. On the reverse side, she will use it as a way to manipulate me, which I find shocking that her broken brain still knows how to manipulate. When she calls me crying to come get her, especially if it’s only a day or two since she last “worked with me”, she will say “ so that’s how you thank me for all the help I gave you, and you can’t help me when I need you.” I’ve only taken her to my studio a couple times since her move to MC and to our house for dinner once, so I’m not able to determine a definite pattern in her behavior to see if it makes her more anxious or more agitated about living where she is. Is that the best way to see if it is OK or not, as in how she seems to handle it based on her behavior afterwards? Or do those of you who are more experienced than I am about this caring journey feel it is usually not a good idea to take our LO out of their routines and safe spaces even if it gives them some joy in the moment. Does it do more harm than good?

harshedbuzz

There are two pieces to this. The first is the benefit; whether an excursion of some kind is enjoyable for you both and enhances mom's quality of life in the moment even if it is quickly forgotten by her. The second piece is whether the day-out is worth the cost in terms of potential agita it causes you.

It is striking how long personality persists in the disease process.

This is a situation in which it's the disease talking failed me. It seems like your mom gets her way through manipulation and guilt. Or perhaps I am projecting. My dad knew how to push my buttons because he was part of the installation team. I was never his favorite and worked with a professional on getting to a place emotionally where I could maintain boundaries that suited my needs in the years before he was diagnosed.

If taking her out ultimately leads to her being unsettled or unhappy which then leads to heaping on the manipulation to guilt you out further, then maybe it's not a good idea to continue the outings. I'm curious-- how do your sisters interact with her?

One thing that helped me with guilt was to appreciate that dementia was what robbed dad of his independent lifestyle following the warm weather up and down I-95 to golf and hang by the pool not me. I did not do this to him.

HB

Shan

HB, thank you for weighing in and sharing your experiences with your dad with his manipulative behaviors. I see the same thing with my mom, that her previous personality and pattern of interactions with her daughters has continued into her dementia and has even magnified in some aspects. Asking how my sisters interact with our mom is a loaded question and probably quite relevant to her manipulation and guilt she places on me. My oldest sister being a doctor, was the first one to notice she was having memory issues. She took it upon herself to choose an AL near her and across the cities from me and my other sister who also lives in the same state. I was not happy she would be 45 minutes from me, and didn’t agree on the facility she chose, but that sister used her POA to override my concerns. That placement only lasted a year before the sister who chose the place burned out in a psychotic break because the AL facility she chose ended up completely short staffed so she had to go to mom’s several times a day for all of her care needs, while still trying to work full time. And I am not exaggerating about the extent of the sister’s burn out. I received an early morning call from my mom telling me that something was wrong with my sister and she was sick and come immediately. My sister took the phone, let me know she was ok but couldn’t keep doing what she was doing and I needed to come get my mom and bring her to my house to give her a break. I had been my sisters respite care for the year so I knew the routine, but this was different because the respite care had advance notice with a planned start and stop date. I had to completely rearrange my work schedule at the last minute and had no idea how long she would need to be with me. Fortunately my sister that lives out of state was able to come for a week so we shared the care giving while I started looking for a place that would be able to care for our mom properly. After my out of state sister left, we arranged more agency care providers to come into her AL round the clock to keep her safe until we were ready to move her. I mention this back story to show why the oldest sister visits once, maybe twice a week when it’s convenient for her, but has not been willing to do more even when my mom’s dog Angel got sick and I need help with his care too. My sister that lives out of state visits once or twice a year, and tries to do a phone call at least once a month. I have one other sister that lives in the same state but she deals with our mom’s diagnosis by telling us it is too hard to see her mom like this so she can’t handle regular in person visits. She visited one day since moving mom to MC in February when I had to be on Covid quarantine because of close exposure and couldn’t be there for a couple weeks (I ended up getting it too which lengthened how long I had to stay away), and she did a short phone call with her on Easter, but that’s all she could handle these two months of mom’s transition to MC. So basically, I’m the one who has the most interaction with mom and the only one who has tried taking her out of the faciiity, so there is nothing to compare how she reacts when I take her out for short visits.

I like your suggestion to continue trying and monitor how it effects her behavior afterwards. I am less worried about how I feel when she manipulates or guilts me because I’ve become much more pragmatic about her behaviors; I know not to take them personally and am aware it is her disease making her behave so badly. I also know not to fall for the guilt trip and don’t go rushing over there when she calls. I found a good safe place for her and I enlist staff help when she needs redirecting when I’m not there. I just want to make sure she is not more anxious or obsessive because of the visits to my home or studio and I guess the only way to asses is to keep trying until I know for sure. At least for now: this disease just keeps changing her and how her reactions manifest. Plus, what works one day can completely fail the next. This is just so darn difficult.

Emily 123

Hi Shan,

It's hard to figure these things out sometimes, but keep in mind your mom probably doesn't have a good sense of the passage of time, or recall all the visits you've had. She may think she hasn't seen you in ages when in fact you were just there.

You may be right that she needs a little more time to settle in. It took my mom about 6 weeks to start to seem comfortable at her place, and about 3 months to really develop a routine. It's tough going early on because they have a limited resources to file away the information that helps build memory and a routine. That may be why your mom's kind of blowing hot and cold--things are still unfamiliar & she's a little lost, but she does like it there, which is great. it sounds like you have a good handle on the comments she makes to you.

Why not mix things up by selecting a neutral place rather than your home/studio and see if that makes a difference? Take her to lunch, out for a drive, go for a walk. If your mom is like mine the facility will become a familiar place, and in fact she may start to get antsy if she's out for a while. My mom's in stage 5, and she's good for about 1 1/2 hours before she tries to wrap things up with a ''Well, this has been lovely, but..."