Researching MC Facilities

Dio

My DH's condition seems to progress/decline rapidly, and his mood and/or lucidity is fluctuating every few hours instead of every other day (Jekyll and Hyde syndrome). Although he can still manage self hygiene, he is starting to forget the necessary steps. With LBD, it's too unpredictable when his condition will take another dive. Friends and family are advising me to start planning ahead to prepare for his longer term care. However, I cannot engage DH in the search for MC facilities...it'll freak him out.

He is not ready to be placed at the moment, but how far in advance should I start researching MC facilities? What is the average time on a wait list? We live in California, SF Bay Area.

Ed1937

Start looking yesterday. You don't want to wait for a crisis. No need for him to go. That might complicate things.

dayn2nite2

He shouldn’t have a part in this process.  This one is yours alone to decide.  Wait lists depend on area, some can be a year or so, some can be a few months.  Basically you’re waiting for people to die to move up on the list.  Start looking now.

ImMaggieMae

I don’t think you always have to wait for people to die to move up in the MC waiting lists. Some people get kicked out of MC facilities when they become too aggressive or hard to manage, leaving openings.

John1965

I’m placing my wife in MC tomorrow. The time is right, even though it’s earlier in disease progression than many on this site have endured. I am lucky to have extended family who have asked, “What can we do to help?” I gave my brother the task of evaluating MC facilities in our area. He and his wife toured 30 facilities and interviewed directors. They gave me a report of their observations over a year ago. I toured 3 of their top 5 facilities. I settled on: 1) the facility that had a director who was an effective leader; 2) a feeling of a comfortable rather than institutional environment; and 3) retention of staff w/o use of contracted staffing services. The effective leader was one who could manage the facility by training and trusting staff.  The two I rejected had leaders who didn’t seem to trust staff and/or clients. I picked up a sense that all information and decisions had to go through them before a decision could be made. … Not a healthy business environment. Given all of that, I still have doubts. Time will tell. 

The core of your question is when will he be ready for placement?

My thinking shifted when I considered “what’s best for her?” instead of, “how long can I endure caring for her?” I came to realize that facilitates are designed to help. Well trained staff can provide the care and stimulating activities that no one person can provide.  I had to let go of trying to be the super hero husband who endured all to the ugly, inevitable end. Placement is the healthiest and kindest solution for both of us. 

I’m off for a sleepless night in anticipation of the most difficult day of my life. 

Best of luck!

Vitruvius

You say your LO is not yet ready for placement but sadly our LOs are most likely farther along than we realize. 

For both Dio and John1965:

I placed my DW three weeks ago. I did not involve her in any planning or even tell her about it until we were at the MCF on placement day, and even then I said as little as possible. I was certain my DW would revolt and insist on going home and be furious with me for planning to "put her away". 

She did none of that. From the moment she got there the staff was great at distracting her, but they hardly needed to. She has never, not once mentioned home, or questioned where she is or why she is there. I have visited every day, first for about two hours, now about an hour seems good. I go about an hour before lunch or dinner so that starting the meal gives me an excuse to leave.  I always tell her I will be back "soon". She is fine with that and pays little attention to my leaving. 

She still calls me by my name and tells me she loves me. The MCF has a large well maintained garden, about a half acre, and we stroll the paths and sit on one of the garden bench swings. We don't talk much due to her fairly rare Semantic Dementia but she seems at peace. There she is making "friends" of sorts and engages to an extent in activities although at her stage she mostly sits and watches but that seems to entertain her enough from what I see and they tell me. 

I could not have stated my reasons for her placement any better than what John1965 has done. 

My first place choice had a long wait list, probably because it's a nice privately run MC only facility. The staff have been wonderful to my wife and she likes them back. I got on the list at a time when I thought placement would be farther off but my DW has been declining faster than average. I'm glad I got on the list, but I almost had to place her some where else but a room fortunately came up when I needed one. Most places I toured had waitlists of 4 months to over a year, the better places predictably had longer waitlists. You may not need a place in that time frame, I didn't think I would, but as I said in another post: Hope for the best, Plan for the worst. 

Dio

Thank you to everyone who has responded! Your words of wisdom and guidance have given me much to ponder. If anyone in my area can recommend an MCF for me to look into, I'd be most grateful. I will also check with my local online support group for recommendations. So far, I came across a couple very nice MC only facilities, not an extension of AL, but their pricing is way above my range. The Cadillac vs. the Lexus?

John: Brillant!--asking your brother's help to do the initial scouring. There's no way I can do this legwork with DH glued to me. I can't even go to the toilet or shower without him following right behind. Many friends and family have offered to help, so now I actually have something concrete to ask for.

Faith,Hope,Love

I too need to start researching MC facilities.  But, I have the same problem as DIO.  DH is stuck to me like glue and it's impossible to get away to do this.  We live in the country and there's no family or friends to help with this.  Please pray for us!

Beachfan

Dio,

I’m a little late to the party and my story is slightly different.  I started researching MCF’s two full years before DH was actually placed.  I was investigating “just in case”, as DH was reasonably easy to care for and I anticipated having him at home until the end.  He was progressed enough in his Alz journey that I was able to take him along; he was oblivious as to where we were and why we were there.  Early on, I knew I wanted a stand alone MCF with highly trained staff, the ability for him to age in place, and staff availability to manage any situation that an Alz patient could present.  He was placed in November after my kids helped me to understand that I was drowning in my care for him; he no longer knew any of us and he would be content under the care of others.  He is in a small, cozy cottage, about 38 miles from our home, with 15 residents, clearly loved and well cared for.  The cost, just under 6K/month is out of pocket and all inclusive; no “hidden” costs and Medicaid is not accepted.  We are in PA; thankfully we can manage the expense.  At the time he was placed, there was no wait list.  

I visit him once a week.  There is no recognition or reaction on his part.  He fades a little each day, but I have grieved the loss of him for years now, so I am at peace.  I miss him and I will always love him with all my heart, but we are both in a better place.  I wish you well in your endeavor; you have received valuable advice from those who have “been there.”  It’s not easy.  

Dio

Beachfan wrote:

 He is in a small, cozy cottage, about 38 miles from our home, with 15 residents, clearly loved and well cared for.  The cost, just under 6K/month is out of pocket and all inclusive; no “hidden” costs and Medicaid is not accepted.  We are in PA; thankfully we can manage the expense.  At the time he was placed, there was no wait list.  

Thanks for sharing your experience! That sounds pretty idyllic. I hope I can find something affordable, with competent staff, and nearby as well ... wish me luck.

toolbeltexpert

Dio start looking now,it is time consuming. When you have narrowed it done by care, cost and whether it is going to be personal pay, or some from of goverment assistance. The later involves a whole other series of hurtles to clear.  Visit the ones you like best and fit your budget, if covid plays a part in being able to tour, reschedule till you can see the whole facility.

I had to place under pressure and it was 275 a day, my first choice had told me that a room would be available in about three weeks which it did and I moved her this week, transition so far has been great and it's 3529 a month which works out to just about 120 a day. Not everything is supplied. Hair cut 22$ incontinence supplies are on me when and if needed. They make sure they toilet them on a schedule which should help greatly. 

As for when to place. I thought it might be to early for my dw but she needed more care that I could do by myself.

Good luck

Stewart

Ed1937

Dio, Stewart made some good points. I'd also say that if you haven't seen a CELA (certified elder law attorney), you should do that as soon as possible. The first visit might be free of charge, and you will see how much help they can be to you.

Ernie123

In would also recommend sooner than later placement. It is easier for your LO to adjust to a new environment when their cognitive function allows them to gain a sense of security in a place that is not “home”. 

Choose a place that is well designed and staffed for memory care. Like Beachfan, my DW is in a smaller secure facility, two “ cottages” with seven residents in each. Each dorm area has a spacious living dining area and kitchen that attaches to the other dorm so the fourteen residents can mingle. One side might have quiet music, the other an activity or a movie. 

The staff should all have dementia training. In my DW’s unit, they work 12 hour shifts 7 to 7 so the residents have the same caregivers for the whole day. There are three to four staff during the day and two at night. The number of staff was recently increased from two to three to three to four because the care needs within the unit have increased with time. There is a low staff turnover because the PSWS enjoy the calm, quiet atmosphere of the unit. I visit daily for an hour or so and after three years the PSWS are like family to me and they know and understand my DW as well as I do. I would inquire about staff turnover in any facility you consider. Less turnover means staff like working there and the consistency is good for the residents,

The cottages are attached to an assisted living facility and the nurses that work there provide nursing care for the MC unit. In three years there have been no staff changes in the nurses which means they all know the residents very well.

The facility offers palliative care in most cases. In fact there have been three residents pass away in the last two months. This makes end of life much easier for family and resident alike.

The staff do electronic charting about each resident twice a day noting details of sleep, mood, eating, physical abilities etc. so any changes in progression are well documented. Off site professionals such as my DW’s geriatric psychiatrist can monitor these records remotely and adjust medications if needed with efficiency.

So I would recommend a smaller facility, designed, programmed and staffed for dementia care, with low staff turnover as an indicator of quality. If possible, try to meet other families  who have a LO there and ask for their opinion.

Hoot619

All I can say is that our loved one can go down so fast that it takes you by surprise. Jan was at a outing with me July 23 of this year.  A good friend of mine is a emt, ambulance crew member and she said she can't believe that she went down that fast. I'm waiting for Jan to pass. It has been 2 weeks plus that she really ate or drank.

We have to be ready way ahead of time, you never know what is going to happen. They can't tell you how much time our loved one has.  It can be months or years before you just can't do it anymore or that they need more than you can give them.

That is why so many say when we first get on here,  1. get their name on a waiting list, the more places the better.   2. Get CELA  and for me 3. Read these articles in these forums, they can help a lot..

I didn't follow there advice til it was too late.  No openings anywhere here in the UP and also down state. Long waiting lists all over.     Hoot

Dio

TBE/Stewart: Thanks for your advice. I know placement care will have to be out-of-pocket for us. We won't qualify for Medicaid/ Medi-Cal and don't have military assistance. One thing I am doing is apply for SSDI given that DH is under 65, and that is already posing so many hurdles. Who knows how long his life expectancy will last--it may bankrupt us if it'll last for a long while?! I suppose should that be the case, I can then apply for Medi-Cal. As for when to place, my marker is when I have no capacity to provide the care that he needs.

Ed: We're in California and have DPOA and Advanced Healthcare Directive in place for DH. Every asset/account is joint ownership, and we have no children. So I didn't feel the need to seek CELA. Hope this is sufficient to see us through? I do know, however, that I will need to update my own DPOA and AHD real soon, including putting something in place in case I become incapacitated or die before he does.

Ernie: Thanks for the insightful tips. I'm thinking along the same lines, but it's truly helpful to hear your confirmation on the most suitable facility.

Hoot: So sorry to hear Jan took a sudden deep dive! I can't begin to imagine what you're going through. Wishing you all the best! I will ask friends/family to help in the search for MCFs. It will be a pretty wide net because the SF Bay Area is quite expansive, extending from North to South and East Bay and the peninsula, within a 30 mile radius including SF itself.

This forum is the best.