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Memory Care Issues
EN124
Posted: Saturday, November 23, 2019 10:36 AM
Joined: 7/19/2019
Posts: 9


Hi all,

My father has Lewy body dementia and he’s been living in a memory care “neighborhood” of a large corporate senior living community in NJ for about 5 months now. We thought everything was going okay - he didn’t participate in activities but he was eating better and was safer than at home. He seemed content to eat meals, read the paper, and watch TV which is basically what he was doing at home. We visit him at least 4 times a week and take him out on scenic drives or to museums etc.

However, he is not exercising so his physical strength has rapidly declined. Long story short: in the past few weeks we’ve experienced a ridiculous level of negligence; from falls that no one seemed to be able to handle, to incontinence that they didn’t handle and I had to, to being given foods that interact with his medications. Finally last week they said he could have a possible UTI and said he was being tested, only to find out that they didn’t actually take a sample for a week. Last night he had to go to the hospital and get a catheter and they couldn’t handle him trying to pull it out all night so sent him back to the ER until 4am.

I definitely want to move him but #1 I’m scared about the competence of any place to give him the care he needs and #2 now no longer trust my own judgment because I saw 16 places and felt good about this one which has turned out to be negligent and incompetent. I’m now looking at smaller dementia-focused communities where folks basically live in a big house with caregivers and nurses. Does anyone have experience with this kind of community? Home care isn’t an option unless I rent him an apartment, somehow secure it, and hire multiple caregivers who can handle him if he falls. Any advice on next steps from folks here who have been in similar situations would be much appreciated!

E
abc123
Posted: Saturday, November 23, 2019 9:18 PM
Joined: 6/12/2016
Posts: 670


This is terrible. I’m so sorry for both of you! There are many caring people here who have plenty of experience with having LO’s in a facility and how to find a good one. They will come along and offer some good advice to help you. Please don’t be so hard on yourself because there is nothing easy about this. I’m sure you did the right thing at the time. You are not alone.
King Boo
Posted: Sunday, November 24, 2019 7:52 AM
Joined: 1/9/2012
Posts: 3091


The description "large, corporate" gives me pause.  Typically, a large place that has a lot of money spent on cabbage rose wallpaper, crystal chandeliers to wow family - and high, high staff turnover, focus on profit, little spent on staff retention, benefits and training.

If you are within reaching distance of the PA border, the Newtown PA are has many, many very good senior care options to examine.

Key things to look for :   are there at least some long term staff?  This work is high burnout, so staff turnover is hard to avoid - but those called to this type of work typically stay for a long time if they are treated well.   Shabby and a little worn but clean, with well treated and trained employees is what you need.

If your Dad has Lewey Body, having a visiting geriatric psychiatrist familiar with dementia would be a plus, along with other medical staff to avoid the constant need to go out.

I liked choosing a place that had good care at all levels - MC, skilled nursing, hospice.  IT made for more fluid care as care needs changed.  It also helped to choose a facility that had a benevolance philosophy - that it, if you met their admission requirements for x number of years of care (3 in our case) they would accept Medicaid if you had spent down in their nursing home, although they did not direct admit Medicaid new residents.

Examine what made you think this was a good choice.  Corporate often has a sales approach-nonprofit tends to have more of a mission statement/good fit approach if it is a successful facility.  Nonprofit is not a guarantee of good care, but of the close to30 places I visited for my LO, I would have placed at 4 - most were non profit.  

The questions I have with a board and care home is whether they have enough resources to deal with the increased challenges of Lewey Body demetia.  There is much less oversight to a board and care, which could simultaneously be good in some circumstances, bad in another.  Generally, visiting medical staff do not exist in such a setting and this will be important as time goes by, you fatigue, and Dad worsens in symptoms.

No facility is perfect, but careful monitering and visiting in the early days, and seeing how they handle problems, will illustrate whether it was a good choice or not.  No one has a crystal ball.

Talk with your Elder Law Attorney, they sometimes have good insight as to the current status of care at various facilities.   Independent Care Coordinators can also help with this.

The multiple problem you report indeed signal the need for a change.  No facility can prevent falls, but how they assess them, send for ER care and do what they can to minimize fall risk is paramount.  My LO fell multiple times a day during his final months, but it was handled properly.

If a MC cannot handle incontinence, a urine sample and lab test, fall assessment properly, time to move.

I will point out that a catheter is generally NOT Memory Care care level, but rather a nursing home thing, because you need nurses to do care for it.  

So, of course, the question arises what stage is your LO in?   Could he be ready for skilled care?

   Not all MC are created equal.  We used one that handled very high acuity (read nursing home eligible) residents, and had the medical care available to back that up.  I have visited others that cherry pick their residents to be easy to care for, forgetful residents who are 'higher' functioning.   MC vary  A LOT.


jfkoc
Posted: Sunday, November 24, 2019 11:26 AM
Joined: 12/4/2011
Posts: 17547


I am curious, what made  you choose the facility where your father is?  Knowing  that we will probably be able to add some things to look for.
CatBallou729
Posted: Sunday, November 24, 2019 7:29 PM
Joined: 3/10/2019
Posts: 98


EN,

So sorry to hear of this ordeal.  It sounds like your father would benefit from a move, but may be too fragile at the moment to manage it.  One option might be to hire a "sitter" or home health aide to stay with him in his current facility either overnight or for a few hours during the day.  That would give you an extra set of eyes on your dad, as well as more information about what is going on with the facility.

My husband also has Lewy Body, and is currently in a MC facility.  I think it is a more challenging disease for the staff because the changes can be so rapid.  Good luck to you.


EN124
Posted: Wednesday, November 27, 2019 7:54 AM
Joined: 7/19/2019
Posts: 9


Thank you all for your kind responses! I chose this place actually because we thought he’d be able to be in AL for a while before moving to memory care. We made multiple visits it was cheery, respectful, professional and had a lot of activities going on. It had about 60 people total so we thought it was a good size for him to potentially meet folks. They even said they knew someone in AL who might want to walk daily with my dad. We had a meal there with my Dad, and everything seemed fine so we chose it.

After two weeks they told us he needed to be in MC because he was trying to leave and exhibiting some other behaviors that would be best handled in MC. We agreed because we wanted him to be safe, and it was fine except he didn’t participate in any activities and people there seemed a lot older and less physically able than him. Since then his physical strength has declined because he never walks, and he doesn’t participate in any activities other than with us when we take him out. Now there’s been staff transitions and negligence so I’m trying to find a place that’s maybe smaller, focused on individualized care and will give him a safe outdoor area that he can roam freely in. 


King Boo
Posted: Wednesday, November 27, 2019 9:09 AM
Joined: 1/9/2012
Posts: 3091


Please excuse my bluntness, but it is important for you when choosing a new facility.
People do not loose their ability to walk because of being in MC, or their interest in doing activities because of being in MC - they loose it because of a progression in the disease.  It is important to realize this or you will choose a wrong new facility.

Now, of course - there can be a depression overlay (have him see a geriatric psychiatrist) for assessment that can decrease interest.  But not the walking - - -there are ways around that.  He can walk the halls, have outings, etc.

None of us want the decline to happen - beware also the 'my loved one is too high functioning for that MC/nursing home"  trap.  Everyone says it, few of us are accurate, particularly when evidenced by being moved out of AL as recommended by staff.

Place for care needs - sure, it's nice if there are one or two similar function residents. But that is a moving target, because the disease progresses differently for everyone.  The person who is walking and talking now, sadly could not be that functional over the course of a few weeks.


EN124
Posted: Wednesday, November 27, 2019 9:37 AM
Joined: 7/19/2019
Posts: 9


Oh yes I totally agree that his physical issues (aside from the UTI and food/drug interactions) are most likely related to the progression of his disease. I’m just looking for a new community where he might be able to get more attention, where there isn’t a disconnect between medical and caregiver operations, and where he has freer access to outdoor spaces once it is warm again.
zauberflote
Posted: Wednesday, November 27, 2019 11:07 AM
Joined: 10/24/2018
Posts: 499


EN, I sympathize wholeheartedly! My mom, 92, late stages, is in a MC that is also "large corporate" but ZERO cabbage roses etc! There has been no intentional negligence. The actual caregivers are at least half old-timers, career carers. They are fabulous, and limited only by the management's lack of.....organization, shall we say. We are just now on our 5th set of DON and ED since January, only as every time, the DON is a) not yet there and b) acting ED. This is INSANITY to us. The place is on probation since June, and the wonderful foot soldiers mostly keep marching on. We can't really move Mom because she's 92, late stages, and whether she knows it or not, used to the routine after more than a year. Also it is the only MC that I saw with room for the wanderers to roam, so it appears spacious, although there are a max of 50 residents right now. Also, it's the only well-established place I looked at that is less than 35 minutes from me AND I can beat the ambulance to the preferred hospital. That has been VERY important. 

I know nothing about LBD, but I do know about Mom's brand(s) of dementia. I can speak to "loss of interest in activities". 3+ years ago, Mom went to AL. Her friends continued to bring her to church twice a week, take her out (one friend loves Lowe's, and Mom did too!). Bro and I visited long distance a total of 2-4 times a month, and I'd stay for two days. Sometimes we overlapped, and sometimes we got sis(local) to join us for a meal. We went to concerts, to the Met Opera Live broadcasts, to the state park on top of the Heldeberg Escarpment for walks and picnics. Mom had started a Bible study class some years before that, and it grew and came to her place. We engaged a personal trainer for nearly two years, who made amazing strength/balance progress happen in her thrice-weekly sessions. Mom delighted in all of these activities, as it was sort of "life as usual". Contrast this with the activities offered at theAL-- Sittercise, Bingo (mom never ever enjoyed bingo!), crafts suited to MC later stages-- none of this was stuff Mom ever had an interest in. She stayed in her room and read (as all her life!) if she wasn't out on one of her long walks around the compound. She even had a much younger BFF from across the hall, who was a good 18 years younger than Mom. They would sit inMom's room and read, color, "knit"... just like an old married couple! All Mom's friends were considerably younger than she; she fit in with that group at church, and was definitely the matriarch of the church! 

She declined sharply on her 600 mile move to my city 14 months ago. We have (I sure HOPE we still have) a jewel of an activities director, who flirts with her and gets her to activities. She has, since the initial decline to about stage 5, had another couple of sharp declines through 6, and now sometimes shows signs of 7. She has bounced back remarkably from a sheared femur/hip replacement/week in hospital a few months ago, and a fall since then in which she hit her head twice (I think there was another fall post-hip, too). Our policy for her has been, allow freedom and hang the shortened life. However, her MC is so short of staff that no-one took her for twice-daily walks as the PT requested. She walked fine for me and  bro. But at 92 it's very easy to lose strength if you don't practise your skills regularly-- and this is not to do with dementia, but with the age of the body, in our case. I don't ask her to walk anymore. She seems content in her nice high-back wheelchair. By now who knows? She may have actually lost the ability to walk but at 92 that's common enough anyway.  we'll never know, and who cares anyway.

So that's our experience with "sticking with it" through some appalling mis-management. Mom is probably as "content" as she will ever be. No sense in moving her-- we'd be abandoning caregivers S, S, L, G, L, V, and many more. We won't have time to establish new relationships. And Mom is on hospice. We don't want to lose our team, which we would if we moved her around. 

I hope you have some ideas that will please you over the next few weeks! 


EN124
Posted: Sunday, December 1, 2019 9:44 AM
Joined: 7/19/2019
Posts: 9


Zauberflote thank you so much for sharing your experiences. I am so sorry that you’re dealing with all of this. I agree that there’s no way to move her again in her current situation and it sounds like you’re doing everything possible for her as she is on hospice. Sending good thoughts and hope for brighter days your way!
EN124
Posted: Sunday, December 1, 2019 9:47 AM
Joined: 7/19/2019
Posts: 9


We are now considering setting him up in an apartment in the lake community where my mom is with round the clock caregivers. We’ll need to secure the house with alarms and find trustworthy folks to take care of him but as he’s not socializing or participating in activities, and has always been a pretty solitary person, I’m wondering if being in a familiar community if we can make sure he’s safe and cared for would be better for him?
SunnyBeBe
Posted: Sunday, December 1, 2019 11:00 AM
Joined: 10/9/2014
Posts: 784


I can imagine it's frustrating to see decline in your LO's condition.  I would request a team meeting with the facility to address your concerns and get back on track, if you decide to delay a move while he is ill.  I'd really consider if the facility is the cause of the decline or if it's the progression of the condition.  

Falls are worrisome and no matter what a facility may do, it is almost impossible to prevent falls. My LO once let go of her walker while standing right in front of me and started to fall straight back!  She would have hit the floor had I not been there to catch her. If I had been just a few feet away, there is no way she would have not hit the floor. 

When a PWD reaches certain stages, they don't seem to be able to participate in activities like they used to.  I used to believe that my LO would still enjoy her magazines, tv shows, etc. but, she just didn't.  Even coloring would occupy her for a minute or two.  If you still think that your LO would enjoy sitting outside, I might explain that to the staff and see if that could be arranged when weather permits at certain times. Again, keeping in mind that enjoying the outdoor area may not appeal to him any longer.  My LO gets nervous when outside and keeps looking around anxious to return to more familiar surroundings.  

I would ask for an explanation on the UTI. Is there some reason they weren't able to get a sample?  What is their procedure for this?  And, will they call you immediately, if a UTI is suspected.  That might be a way to be alerted on that situation.  

Around the clock care in a private home is an option.  Some of the family members around here do that.  They offer good tips and insight on how that works. I would also consider how that would address the issues that you are concerned about.  


zauberflote
Posted: Sunday, December 1, 2019 3:21 PM
Joined: 10/24/2018
Posts: 499


EN, thank you for your thoughts! We're doing "the best we can", as is everyone here. 

Sounds to me that a place near your mother (am I reading that right?) could work, especially (and probably ONLY) if you find the best of caregivers. These caregivers would, in theory, make alarms redundant. Of course they are going to be "on" for their entire shift, which means always knowing where dad is to within 3 feet. Extra locks (I read here that simple locks at the top of the door can work well) might be all that's needed. 

You'd be able to visit both your parents with only one trip!


jfkoc
Posted: Sunday, December 1, 2019 4:48 PM
Joined: 12/4/2011
Posts: 17547


What would be the most important thing for me is training. No matter who is taking care of him they need to be trained. Always ask specifically what program is used and how often. Experience is not the same as training to care for this disease. They need to know how to handle the bad days.
 
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