Could use your help/support, MC visit today

sandwichone123

We had a member here a while back who couldn't visit for similar reasons who decided to go in costume--I don't remember what, but you could buy a set of scrubs like the employees wear and try changing your hair/glasses/whatever you can think of so you don't look like you. Then just interact like someone she doesn't know? Just throwing it out there--you know your chances better than I do.

GothicGremlin

I'm so sorry, M1. That's a definition of nightmarish.

I don't trigger Peggy, so I have the luxury of being able to see her without setting her off. Still - I'm not there every day, and I feel like (whether true or not) residents who have family and friends in and out all the time get better treatment. Maybe it's not even a conscious thing on the part of staff. All I know is that when we go see her, she's always clean and tidy, her clothes are clean, and her hair looks great.

When I first placed Peggy, I didn't get a lot of communication from staff, so asked for email addresses in case I had questions. I have the email addresses of the memory care director, the activities director, and the executive director. I think I've only emailed the e.d. once, but I talk to the memory care and activities directors all the time. Like aod326, I've also made friends with the front desk people, various med-techs, and memory care caregivers. I introduce myself to new staff. So far, it's worked for me.

Sometimes I get photos from the activities director - only of Peggy. No one else is in the photo. This particular memory care also has a newsletter - it's not all that useful, but maybe some people like it.

I've made friends with all of Peggy's friends who go visit. We all report to each other. I'd say that someone is visiting Peggy three to four days a week.

The one other thing I do is I have a caregiver who goes there once a week and reports back to me, so that gives me a fourth or fifth day. Peggy views her as a friend, not a caregiver, which is also great.

I don't know if any of this is useful, but I'm throwing it all out there just in case.

jmlarue

Well, her television should have a USB port on it that you could plug a camera into. Placing it high on a wall and covering the USB cable with a cable cover to disguise it might work. If she asks staff about it, the fiblet could be that it's a part of their safety/security system like smoke detectors and such. Maybe you could arrange to meet a maintenance guy to help with the install while your DW in occupied at lunchtime so she won't see you. Yeah, I know, it's seems a bit "Mission Impossible," but it might work.

Ed1937

I love the security camera possibility. If hooking it up to the usb port doesn't work, there are also battery run cameras. https://www.amazon.com/battery-operated-security-cameras/s?k=battery+operated+security+cameras  Just another possibility.

M1

I'll look into the USB port thing, I really will.

Sandwich, I think she's still too cognizant to try the disguise thing.  That's part of the problem, she's still pretty functional, compared to a lot of the other residents.

Stuck, I totally understand how she feels, I do.  Again, it's almost like she's too functional to be there.  But she's not AL material either.  And Gremlin, I think one of the differences with Peggy, if I remember, is that Peggy was pretty accepting of MC before you moved her.  My partner was not/is not/likely will never be.  And unfortunately, there are simply not a lot of other people in her life who can or will visit.  So the isolation becomes a self-fulfilling prophecy.

I truly wish I knew a different way to handle it, all of it.

dayn2nite2

You can also hire a companion for her to visit weekly or more often, that person can take pictures of just your wife, visit with her and give you a report on how she's doing.

M1

That's a good idea day2nite.  I will explore right away.

ButterflyWings

M1 - I so hope and pray for a positive change in this situation! I don' t have any good ideas but some of the earlier suggestions seem wise. I only had the respite experience, and had similar concerns of them not having LO communication be a priority. I assumed it was partly due to them knowing DH was only there temporarily, but still - it is important to keep their LO updated even if there is no major "news". 

Updates and proper med management didn't happen but our situation was different. My goal was for him to be safe, not able to elope, and ideally have his meds maintained properly, and of course not neglected or mistreated. Minimal expectations for a short term stay. I wasn't thrilled to choose a place I had only been able to tour virtually, but resigned myself to that because some urgent and important things needed taking care of and also because I was almost tapped out in resilience and needed a mental health break.

I would be wracking my brain as you are, if in the same situation. I resorted to calling 2x a day, talking briefly to either the CNA or nurse, and asking them to let me speak with DH which you can't do of course. Half the time I could tell he had no idea who I was. But it let them know he was a priority and someone was keeping up with how he was being treated. I also was able to get his hospice team to send a volunteer, and their social worker stopped by -- so he had those visitors 1 week. None of this is easy and you have my admiration for taking steps to keep her safe and yourself as well, though she can't understand nor accept that. I'm so sorry you have to go through such an impossible stage on this journey. Praying for a breakthrough and relief!

M1

Hiring someone feels like the first true feasible lifeline--thanks again, day2nite, I am so not thinking straight in my distress.  I am so, so lucky that she was careful with her money so that that's even possible.  It's worth a shot, anyway:  anyone out there who has done that, either for someone in AL or MC?  Ups and downs?  This would truly be companionship as she's still independent in ADL's.  But for instance, there's a putting green on the property, if she had someone to accompnay her she could at least try it (her good buddy/old trim carpenter has her putter and brought it back to me).  Could maybe even find someone with a well-behaved animal/therapy dog, they would allow that.  At least it gives me a way to maybe move forward.

Meanwhile, I truly am about to drown in deferred maintenance on the farm.  There's a two-acre lake on the property, spillway damaged in a bad flood twelve years ago.   She deferred fixing it--part of the early dementia I think--and I discovered this week what terrible shape it's in.  Probably $50- $100K job, OMG.  But has to be done, we could literally flood out downstream neighbors.  The dam is not in danger yet, but it will only get more expensive with time and I won't be able to sell the property if this is not fixed.  If she'd done it promptly, insurance might have covered some of it, but not now.  

jfkoc

Seeing how your wife is either via camera or a "hidden"visit may relieve some worry. You will still be left with the rest....the grief for which there is no cure. 

While there is no cure I do think that the raw pain lessons and at some point we learn to live not in the middle of it but to travel with it by our side.

How long does that take? Since it seems to have a life of it's own one never knows.

Our hearts are with you...........

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Stuck in the middle

My mother, in her late 80s, worked as a companion to people with dementia or other health issues such as CHF.  She wasn't expected to do much, just fix lunch, call 911 in an emergency, etc.  I think she worked through a faith-based nonprofit.

Her last client developed VD and went to a NH.  The clients sons paid my mother to visit at the NH, not because they were triggers, but because the client had a lifelong difficult personality and they didn't want to see her very often.  The client had no idea Mom was being paid to visit (she'd have pitched a fit if she had known she was paying for it), and it worked well until the end of the clients life.  

MN Chickadee

M1 a companion who is hired by you sounds like a great idea. They could find what she will engage in and encourage that and also give you regular updates. Perhaps put an ad on care.com.  I also wonder if there is a way for you to connect with other family members of residents living there. Many are visiting all the time and could probably give you a quick update on how she seems today if they only knew you needed one. I sure would have done so for someone. I was there regularly and got to know other residents and would have happily sent a family member a picture of them at an activity or given a heads up they seemed upset today or whatever. There was a camaraderie between some family members, a feeling of being fellow travelers on the road no one wants to be on. Is there a family council, family-only facebook group, anything where you could connect? 

Most facilities are not great at the level communication you are seeking. They have their set protocols for communication (either when something is wrong or at scheduled care conferences) and beyond not much; usually no news is good news. It can be very difficult to get used to when you are worried sick about your LO. Is there a care conference scheduled? Many places do it a month after move in. If not perhaps you could request one? That would give you a more comprehensive update, and also an opportunity for you to ask them of any ideas they may have so that you get more regular updates and tell them how much you would like them more regularly. 

toolbeltexpert

M1,  Mn Chickadee idea about getting folks from where your dw is placed is something I can speak to. I used to visit mcf three times a week I would stop in the foyers and got to know all the folks , I greeted folks in hallways ect. The families that visit were really each other's eyes they knew everything and everyone in a good way. You might talk to the activity director, they know all the volunteers and they all like to help. Praying for that day when it's a great visit.