More thresholds crossed

M1

Started the day by blocking all 24/7  news channels. Sent my first inquiry to the best MC facility in our area, got a prompt reply and an invitation to their zoom support group next Monday (iffy because of my slow internet). Sending in the fee for the wait list in the morning. The catch: they want to come out to do an assessment, there's no way she'll cooperate. But I'm sure they're used to that, I'll just have to see what they say.

Tfreedz

That’s a big move for you M1 and I’m proud of you for making that step. They are indeed used to all different scenarios during assessments so I have a feeling you will be surprised at how well it goes.

When my Mom had her zoom assessment, I was so stressed out! I didn’t know what to tell her or how she would react, ugh. My mom sat on the couch reading and I told her I had to talk to some medical people on zoom in the kitchen and that they might have some questions for her also. I started the zoom meeting and had some small talk while my mom was within hearing distance. I then called her over and said they wanted to say hi to her as well. She seemed confused but her interest was peeked so she came over. The questions were very simple..what do you like to do,do you need help with anything,are you able to eat on your own, could you stand up and walk across the room and back. My mom thought the question were quite funny but she answered them not entirely truthfully but it was enough. They said goodbye and told me they would call me later. I would think it would be similar in person as it was on zoom. Mom never bothered asking what it was all about she was just so happy to have other people to talk to besides me, so I never said anything more about it.

I’m most worried your internet won’t be up to par for the support group. Let us know how it turns out.

Beachfan

M1,

I hope everything goes well for you and your partner.  It’s very brave of you to press forward with plans for possible placement when you feel so conflicted.  I’ve been there, and trust me, you’ll feel much better just knowing that you have options lined up “just in case”.  

Don’t fret the assessment.  DH’s was more of a meet and greet.  The staff were pretty perceptive upon meeting him and when I was ready to place him, there were reams of paperwork giving me the opportunity to list his strengths, needs, preferences and dislikes.  Once placed, caregivers got to know DH as time passed, and DH adapted to the daily routine.

More than likely,  the whole process will be tougher on you than on your LO.  Stay strong; there are a lot of us thinking of you and wishing you well.

Buggsroo

M1,

I can imagine this step is hard but it sounds like you have made a hard decision. I am in the midst of getting a psw to help me, as well as getting him in a day program. I am nervous, sad and scared so I can imagine you must be feeling apprehensive as well. I hope your assessment of your partner goes well.

abc123

If I could be there with you, I'd hug you tight and tell you everything is going to be okay. I'm sorry that this dreadful disease has happened to you & her. To all of us.

Joe C.

M1, I wish you the best as you move forward with your future care planning. As for the assessment, I put a deposit down on the MC room almost 2 years before I placed DW. This facility also wanted to do an assessment right away but I explained that I was not ready for placement at that time and they agreed to hold off on the assessment until I was actually ready for placements If your not ready for placement maybe you could convince them to hold off on the assessment or just have a meet & greet with a staff(s) member rather than a full assessment at this time.

M1

Thanks all. Joe I think that's probably what I'll do, I think it wouldn't serve any purpose at the moment. They're going to help me think about home care options first I think. Still my preference if I can manage it.

Gmom28

Where are you located? My DH goes to a Day Center a few days a week.

harshedbuzz

M1-

I will be thinking of you as you navigate this next phase. It's hard stuff.

I am sure you have chosen a high quality MCF and that the professionals there will impress you with how discretely they manage to get the information they need. It's great that they'll come to her; many of the places near me want to see the resident-candidate at the facility for the assessment. I sat in on one assessment for dad- the DON was personable, and the visit felt more like social call. Of course, they didn't accept him on the basis of his WKS diagnosis. 

HB

Ed1937

M1, I know that was a hard thing to do. But you will feel better knowing that you have something on the burner if needed. I hope things go well for both of you. Keep us posted on it.

ButterflyWings

M1- good for you, though we know how very tough it is, just to open each door to new decisions and possible solutions for these declining stages. Like the serenity prayer says, it takes real courage to change the things we can (and one version adds, “and should”). 

It complicates matters to just not be sure exactly what or when we “should” or should not take a certain step though, well do we all know. Dementia is such a trickster! One day they seem pretty stable and manageable, and then...So having one or two vetted options is definitely the way to go. 

Something to think about, it may be good to allow the home visit sooner rather than later anyway, especially if they are going to help you identify home care options? 

I know you don’t want to rile your LO, but maybe frame it as getting help for you, so you can spend more quality time together? It’s not exactly untrue...And the visitor will have to play along. I suggest that because from the Agency on Aging SW, to the palliative team, to the hospice team, they all have seen things in the floor plan or our interaction, or his navigation and habits at home that let them give me many great tips. Little hacks that have been super helpful, that only occurred to them because they saw our space and could also observe DH in his element. 

It’s worth thinking about, even though hopefully you will find good live-in help if that is still your first priority. I was told the MCs and hospices can be a great source of referrals for staff that are excellent but no longer with them, or want more hours or even visiting/travel(?) nurses whose long term client has transitioned. Haven’t tried it yet though. 

Congratulations again on all your progress on this. It will surely really help to do this exploration now, and definitely cannot hurt. We are pulling for you and your partner to get  a good solution in place soon. If your WiFi becomes iffy, maybe you can at least phone into the support group Zoom. I do that sometimes and using my cell & earbud it is less obvious to DH that I’m occupied, and it has the added benefit of keeping me mobile if I need to redirect or follow him to a different room to observe. 

Marie58

M1, I know it's hard but it's good that you're taking this step. It'll ease your mind that you have a plan in place. Be sure to ask what happens if your LO's name comes to the top and you're not ready to place. Will she stay at the top? That was the case for us, but when DH reached the top, it was time to place him. But it was nice to know we would have had the option to say no and not lose our spot. Blessings to you both!

jfkoc

I view having their own support group as a huge plus.

M1

jfkoc they really are the best around, they have designation as a center for excellence and there's no question this is where I would want her should it come to that, and thanks to her frugality she can afford it, we are so fortunate in that regard.   So yes I have no qualms about that.  And yes, I'll discuss further with them how to go about the assessment etc.  I am truly the one that needs help, so we'll see whether I can sell that.  And yes, this needs to happen, I know that.  

I appreciate you all so much......

Jo C.

Can imagine how difficult and uncomfortable that must have been; you have made a wise though difficult decision which will keep you in good stead as changes continue to evolve.  I remember what it felt like when I first put my toes into the alternative living placement water.  Mixed feelings and not many of them positive.  When the assessment was to be done in the home, it was simply fiblet stated as a Medicare visit benefit and avoiding going to the doctor's office.  The assessment was more of a social visit; during that time they talked very nicely to my LO and were very circumspect re questions, etc.  They wore no badges saying where they were from which was a plus.

We were actually not quite ready to transfer and as it was, the facility of choice was full at the time and was often that way.  I made a check deposit of about $700 that was held in a file until such time a bed was ready and we were ready.  We had to work our way up to the top of the list for an available room.  Not long after, we were at the top of the list for first offer.

Each time a spot became available, I would get a call so I could make a decision.  If we were not ready, we still stayed on top of the list rather than sinking to the bottom.  This went on for months. My LO had unexpected sudden changes that really made placement an abrupt necessity, not a choice. I had to hang on until a spot came up not long after, and when it did, we took the space.  The check to keep us on the list became part of the admission fees and all went fairly smoothly. 

You are a kind, thoughtful ad caring person; I send warmest thoughts your way along with a hug.  Let us know how you, yourself are doing.  We certainly are thinking of you.

J.

Joydean

M1, thoughts and prayers for you and your dear wife. I look at this as a time for information and constructive ideas. You’re still in charge. Helpful ideas are always welcome and if you can get a little help for even a while is a win.  Best of luck to you both!

M1

I am having immediate buyers remorse of a sort. I rationally know she needs to be on this wait list but: their home care director contacted me this afternoon and said our rural area is impossible to staff.  No surprise there. But I also talked to a physician colleague whose DH is in the MC facility, and she reported how disappointed she is in the quality of care. Makes me want to pull my hair out. I may opt for the unconventional route and see if I can find a cabin tenant and do this all privately.  At least it's another option.

Meanwhile my partner asked me tonight how I got here today, forgetting that I live here and haven't been anywhere. Slipping, slipping towards stage 6 I think.

Joydean

M1, I’m so sorry!  Just when you think you’ve done all your homework, done everything, then find out your friend is not so happy with the same place. Like one step forward and five back. I do so wish you the best and hope you will get some help soon.

M1

Since I've been on such a roll I also went on care.com last night; there were six potential caregivers listed within 30 miles of us, none of whom were covid vaccinated.  Makes me just shrug my shoulders and grit my teeth to keep doing what we've been doing.  Surely something will shift, but it's not clear to me yet what it will be.  I know there are other agencies out there, but I think the results are going to be similar.  With her lymphoma, the risks of bringing someone unvaccinated into the home may outweigh the benefits.

[Deleted User]

The user and all related content has been deleted.

M1

Thanks Victoria.  My son in law is an attorney, so I'll discuss the cabin tenant thing with him regarding how we'd have to structure it, what kind of lease agreement we'd need.  But right now that feels like the most viable option. Probably a few months off anyway, but something to think about and plan for.

Jeff86

How brave of you, M1, to begin the process we all dread, and then how frustrating to discover it’s not as good an option as you had thought.   

So often, we are faced with having to choose the least bad option, rather than an ideal solution.  I know you will figure out which that is—you are very thoughtful—but we are here as a sounding board whenever you want to lean on us.  

Beachfan

M1 wrote:

But I also talked to a physician colleague whose DH is in the MC facility, and she reported how disappointed she is in the quality of care. Makes me want to pull my hair out. 

M1,

As you do your exhaustive research, take everything with a grain of salt.  DH, under my care, was clean shaven every day, showered and shampooed every other evening, out of bed, fed and immaculately dressed each morning by 10 AM.  As a former Martha Stewart wanna’ be who folds clothes “like a GAP girl”, I kept his dresser drawers and closet impeccable. 

 Enter MCF and I had to reel myself in and overlook a few things.  Residents are showered twice a week, DH is allowed to sleep in (he’s cranky if awakened early), I have shaved him on occasion, he is dressed in a mix and match assortment of comfortable clothing, and every so often, I dump his dresser drawers, refold clothing and turn in a pile of items he’s inherited courtesy of the laundry crew. It’s all good.  He is clean, he is well fed and clearly well cared for and well loved by staff.  In the grand scheme of things, that’s all that matters.  (Even his “shoplifted” Baseball Hall of Fame woven throw from his room was returned; I brought it home and gave it to my grandson.) 

Residential care will never measure up to what we provide for our LO’s and with staff shortages, it’s really a challenge.  Keep researching, file all your options and know we are all with you on this miserable journey.  Stay strong!

Quilting brings calm

M1 -  keep in mind that opinions are subjective.  Your physician colleague may be wanting a level of care that’s unattainable anywhere. My parent’s long time PCP had a chat with me the last time we were there.  He had just listened to my parents complaints about their AL.  He told me they wouldn’t be happy anywhere.  That the primary goal was to keep them safe, fed, etc. He told me his dad was in an AL and it was the same deal with him.   So, yes, things might not be perfect at any MC.   Is the place safe?  Do they have locked doors, notifications if they open, care pendants that go off if they wander away?  Medication management - so there isn’t any taking of old  medications? Appropriate hygiene care?  

Laundry will disappear between rooms - especially if mislabeled. Residents will wander and shop in other residents rooms.  That will happen anywhere.  Every place is short staffed these days.  Hopefully that  will ease soon. 

Ed1937

M1, I'm sorry you're finding out that things might not be what you expected. I'm glad you have the option to have someone move to your property. That could be a very good option.

M1

Thanks Ed, I'm having all these wonderful fantasies of that working out.  We talked about it briefly today (in the context of anticipating the exit of our current renter).  She is against the idea, of course, and has absolutely no insight into needed supervision herself OR needing help on the farm.  It's amazing, she clearly still thinks she can do the chores, when in fact she can't even with my help.  And doesn't realize how much I am subsidizing her being able to live at home at all.

More realistically, I imagine it's going to come to bad confrontations.  My having to tell her she either accepts help here, or we sell the farm, and my threatening that if she doesn't, I move out and she's headed to MC.  She's that stubborn, and unless there's a catastrophic event like a fall or an illness I don't see her backing down or accepting some confabulation on my part.  Almost makes me wish for the fall or the illness to change the trajectory.

David J

M1, I’m glad you are starting the search. I initiated my search almost three years ago, and my wife has been in the MCF 6 months. I am lucky that there are a dozen or more MCFs within 50 miles, and the one she ended up in is only 5 miles away. Every MCF I interviewed had similar issues with residents sharing clothes and other possessions (intentionally or not) and different schedules for showers and other personal care. As suggested, take others’ opinions with a grain of salt. My wife’s care assistant loves her, and cares for her better than I was doing at home. She is eating better, her room is cleaner, and she has plenty of room to walk. She is also in a safer environment. It doesn’t smell like an institution, and is very home-like in decor. For me, having her so close has been important. 

My wife had her assessment shortly before entering the facility. They needed to do this no more than 30 days prior.  My wife was already used to nursing visits, since our insurance company sends nurses yearly to check on us. I just told her we were going to have another preventative medicine visit. She calmly sat on the couch and answered their questions or listened to me describe how we were dealing with her dementia. It went really smoothly. 

Good luck with this phase of caring for your partner. It really is providing and caring for her, just not at home. In my opinion, it’s better than caring for her at home. 

DisSucks

That first step is the right step.  I took care of my Mom for 12 years.  When the time came for her to be in a facility, I worried about the transition, her resistance, how it would affect her ie: her fears.  Those in the profession are very capable.  They've dealt with it all, especially our resistant loved ones.  Finally having my Mom in a safe, caring facility meant less anxiety for me about her health and safety.  I hope your experience will be at least similar.  Let us know here how it goes.

Marie58

M1, I agree to take other's opinions with a grain of salt. Like Beachfan, I had to adjust my expectations a bit once DH was placed. Of course I knew I was a better caregiver, DH was/is the love of my life and I was one-on-one with DH! MCs don't have that luxury. The place I chose was also one of the best in our area, but of course it's not perfect. However, I have become very good at being my DH's advocate. I don't hesitate to bring things up if it's not up to par, and they always listen and always 'fix' whatever my concern is. I think that is an important thing to look at...do they listen to family members, are they willing to change how something is being done or not being done? If the fee is refundable, I suggest you keep you LO on the waiting list and keep researching this MC and others as well as your cabin tenant option. Blessings to you both!

[Deleted User]

The user and all related content has been deleted.