By Donna Plunkett St. Clair
I’ve done it wrong. Not just once, but twice. This is despite having clarity of mission in my aggressively pursued quest to find a good place for my husband, Bruce.
Like most caregivers, I had always hoped and planned to keep him at home until the end. Also, like most caregivers, I realized that doing so was a very tall order. His needs are limitless and my abilities to meet them are not. Your story likely has much in common. There are valid reasons that the vast majority of dementia patients reside in institutional care—and it’s not because nobody loves them. In so many cases, at least one person has given all but their life to provide care at home until their ability or health breaks under the weight of caring.
My extensive personal experience and that of others has led me to conclude that most institutional care facilities are merely adequate, achieving mediocrity as the norm. A few are horrible. A few others are wonderful, the pinnacle that we caregivers seek. But this is a search fraught with pitfalls and perils. I hope to help you avoid at least a few of the many mistakes I made.
Successfully Choose a Dementia Care Facility.
Here’s What to Do, and What NOT to Do
- DON’T WAIT UNTIL YOU NEED THE SERVICE TO START LOOKING: BEGIN IMMEDIATELY!
I did exactly this, not just once, but twice. Both times the search was prompted by his aggressive behaviors scaring the wits out of me. There’s no excuse. I should have pursued this long before it was an emergency. Looking for a facility during a crisis guarantees you’ll have to settle for anything you can get. They all look fairly okay on the surface. Most administrators have a flashy smile, a fancy brochure and a convincing, reassuring sales pitch. “Oh, it’ll be okay,” I told myself both times. No, it wasn’t. Whatever else you do, start visiting right now—notepad in hand—and find the facilities that you like. That you trust. Can’t find any? Keep looking. Drive out farther. It’s better to have your loved one in a top-notch facility an hour away from home than in a rat-hole up the street. (I did that twice.)
>> LESSON LEARNED: Be sure to bring and use your pen, notebook, and best questions — and start investigating potential facilities NOW.
- DON’T ASSUME THAT ONE SIZE FITS ALL: THERE ARE VARYING LEVELS OF RESIDENTIAL CARE
We tend to call all facilities “nursing homes,” but there are really at least three different categories.
- Assisted living—basically, a place to stay that includes some extra help with housekeeping, medicines, clothing, etc.
- Memory care—significant help with all Activities of Daily Living (ADL’s) for those who are still able to benefit from socialization
- Skilled nursing—extensive care for those who are bed-ridden or wheelchair bound and for whom socialization generally yields minimal results.
I knew enough to realize that I needed “memory care,” but I didn’t think about what happens when Bruce gets even worse. Was the place equipped to handle that? Some say they are, claiming that they can simply provide more intense care on site. I’ve seen that work very poorly, with the same overworked staff now required to provide full-service care to someone who was somewhat independent just a few short weeks ago. Get a facility that has its own onsite skilled nursing facility, where your loved one can be moved elsewhere within the same building for more extensive care services. The last thing you want is to have to relocate your loved one to another company’s skilled nursing unit during a crisis. There will likely be a waiting list at another facility and will have to go through the whole admission process again. Even worse, you’ll have to investigate the new facility in a panic. Again.
>> LESSON LEARNED: Be sure to ask exactly how your loved one’s care will progress as they decline.
- DON’T BELIEVE IN HAPPILY EVER AFTER: WILL THEY DISCHARGE AN UNRULY RESIDENT?
At least some Lewy Body Dementia caregivers turn to facilities after their loved ones have become aggressive or combative. That was my case, both times. Here’s the problem: do you realize that many facilities won’t keep someone if they behave in that fashion? It’s true. In fact, at my first failed placement, I was actually panicked and ignorant enough to sign a statement agreeing that my loved one would be removed if he was considered a danger to himself or others. What? Imagine that picture: you get a call at ten minutes to midnight on a rainy Friday night (when else would it be?) that Joe has thrown his shoe into the fishtank and is threatening to do it again … so you have to come remove him. Can’t imagine such a thing? Think again. It happens all the time. Most of these places have waiting lists, and if they can trade away a “problem” patient for a well-behaved one, that’s a better deal for them, isn’t it?
>> LESSON LEARNED: Be sure to ask exactly how “problem behaviours” are defined and managed. Get clear answers and examples of what might lead to a resident being forced to leave.
- DON’T EXPECT FICKLE FINANCES TO SUPPORT YOUR CHAMPAGNE DREAMS
You likely want nothing less than the best treatment for your loved one. Unfortunately, that is not what most of us are going to get. Take a realistic look at your finances. A hard look. Here’s the problem: the vast majority of memory care facilities do not accept Medicaid (the federal, state-administered program for low-income individuals) at least, not initially. Unless you bought a long-term care policy while you were young and healthy enough to afford it, your expenses are going to be 100% out of pocket. You will pay every single penny. Here in the center of Virginia, memory care facilities are going for $4,500 – $5,000 monthly. I found an ideal “Green House” village nearby that costs $9,500 monthly. You have to show evidence of your ability to pay all the bills for no less than two years; then, if you qualify, they will help you apply for Medicaid. The Roman Catholic facility that I really like in Charlottesville is about $7,500 monthly. There, you have to document solvency for three years, and then they will discuss alternate financial arrangements with you: I’m not sure exactly what that means yet. Here’s the long and short of it: Unless you have enough monthly income to cover $5,000 – $10,000 in EXTRA expenses, or unless you have about $250,000 somewhere in savings or investments, you are not going to be able to afford memory care for your loved one. That is one of the toughest pills to swallow–that along with the fact that your monthly fee is often just a base payment. Countless other “extras” are billed in addition to the base fees: this can include any one-on-one staff time, haircuts, nail clipping, medicines, diapers, and more. Memory care facilities are simply unaffordable for many people.
>>LESSON LEARNED: Be sure you know exactly what you can afford BEFORE you fall in love with a facility that is out of reach. WIth less money, you’ll need to alter your expectations and likely broaden your search.
- DON’T THINK THAT 1980’s DESIGN IS PERFECTLY OKAY: DO THEY INTEGRATE NEW KNOWLEDGE?
It’s not OK. White toilets against white walls? White plates on white tablecloths? Long hallways with all doorways painted the same color? Dimly lit corridors? Over the past 20 years, great inroads have been made with environmental design innovations to manage the various challenges of dementia. The ideal facility ought to be incorporating as many of those as possible. Not every place can be “open-concept,” but they can, at least, paint residents’ doors different colors for easy identification. There are many other simple changes that improve quality of life. Red plates should be on the table to stimulate appetite. The wall behind the toilet can be painted in a contrasting color; even a bright red toilet seat is helpful for aim. Bright lights are one of the best ways to combat sundowning by limiting shadows. Laminate floors have been shown to be the easiest to visualize and navigate, so why do many facilities insist on shiny linoleum or busy patterned carpets? Many of the troubles of dementia are related to visual disturbances. There is no excuse for any facility to add to our loved ones’ troubles!
>>LESSON LEARNED: Be sure to assess whether the facility is using innovative approaches to design, which can include colour, light, patterns, individualization, etc to improve comfort and behaviour by attention to the environment.
- DON’T FOCUS SOLELY ON THE INSIDE: CAN RESIDENTS EVEN ACCESS ANYTHING OUTDOORS?
Do you realize that some institutional residents almost never see the light of day? (Oh sure—no problem, we just give ‘em a good dose of Vitamin D, right?) The first place I placed Bruce had no plan whatsoever for getting residents out into the sunshine. Fail. Occasionally, those who could walk, went from the front door to the waiting mini-bus for a 30-minute scenic drive somewhere, but that was about it. The second place had a rather sparse, meandering courtyard, but residents had to be accompanied to go out. Access doors were locked. Could you imagine being placed somewhere that you could almost never go outside for a breath of fresh air? There’s a term for that—it’s called “Cabin Fever.” Not good. Many people in prison get more time outside.
>>LESSON LEARNED: Be sure to examine outdoor areas at the facility, and ask about the resident’s opportunities to go outside safely.
- DON’T FORGET ABOUT SAFETY: HOW’S THEIR RECORD?
I neglected to ask these questions at Failed Facility #1, although I did ask at Failed Facility #2. Ask how many residents have escaped the lock system. Ask how many violations they received at their last government inspection. Ask about their policy for reducing falls. (No facility on earth can eliminate the possibility of falls altogether, but they sure can minimize them—challenge them to define their plan.) If they have a plan, they won’t mind sharing it. And while you’re at it: when was their last evacuation drill? They may have convincing, but evasive answers including “we’re not authorized to release that information,” to which you can decide how to respond.
>> LESSON LEARNED: Be sure to ask every question you can think of concerning their plans for safety. Bring a written list of consistent questions to ensure you get comparable answers from every potential facility.
- DON’T NEGLECT THE OBVIOUS: STAFFING LEVELS AT “OFF-PEAK” TIMES
What is your loved one expected to do on the weekend from 5pm Friday until 8am Monday? Most facilities reduce their staff by up to one-third, with no planned activities at all. Confused, disoriented residents are left to wander the halls, trying to figure out what to do. How would you like to be trapped in that? Both of our failed facilities were torture chambers on the weekends. (And they wonder why so many residents simply choose to sleep.) Evenings are another problematic time with reduced staff. Among a population known for evening and night-time behavior problems, it is hard to see how anyone could conclude that fewer people are needed on staff during those times.
>> LESSON LEARNED: Be sure to ask about staffing levels, activities and supervision for holidays, evenings and weekends.
- DON’T MAKE ASSUMPTIONS ABOUT SERVING SIZES, SECOND HELPINGS … AND A DRINK OF WATER
With what you’re paying, facilities ought to be offering up high quality, plentiful meals and adequate hydration. Based on experience, I do not believe that. Seldom are residents of most nursing homes allowed to have second helpings of something they really like. Our companion, Rosa the Wonderful, asked for ice cream for Bruce at Failed Facility #2. The aide brought out a small single-size cup of ice cream, then snatched his dish of pears off the tray. Apparently, he could not have both. Let me also add that my husband is about 30 pounds underweight. When the temperature in his room soared to 80-degrees, he was sweaty and thirsty, without a clue about where to go to get water. Water. It’s free. You’d think it would be plentiful in memory care facilities. You may think wrong.
>> LESSON LEARNED: Be sure to ask about hydration, second helpings and snacks. Answers such as “all he has to do is ask” is insufficient. Residents should be offered food and drink on a regular basis, and particularly encouraged with hydration.
- DON’T NEGLECT TO POP IN AT VARYING TIMES—BEFORE YOU PLACE
When you meet with the administrator, they will show their best side. Before you sign anything, tell that administrator that you would like to observe the facility several times, just as though your loved one were already placed. Go at night. Go on Saturday afternoon. Go on Sunday morning. Leave, and then come back an hour later. Note what you see. Staff playing on their cell phones is not the best sign, but that is exactly what you are going to see at some facilities. Approach and ask other visitors what their experience has been and how their loved one is treated.
>> LESSON LEARNED: Be sure to check service levels and quality when they least expect you. Check at different times and ask other residents and visitors.
Good luck in your search! I hope some of my missteps will prevent you from experiencing them. I think the facility in Charlottesville is going to be a good fit for Bruce. I am lucky in that I can afford it for the required three years and a little more. After that … we’ll see.
About the author: Donna Plunket St. Clair is a veteran, both of the US Military in Vietnam as a journalist, and as a care partner who tirelessly advocates for her husband Bruce, diagnosed with Dementia in 2010 at 59 years of age and with LBD in 2015 at 65 years. She has pioneered novel treatments and successful behavioural modifications to make their lives as good as possible under the circumstances. She has had less success at behavioural modification for those with four legs — including their cats: Lady Diamonda, the retired Siberian show queen, and Blossom, the scrappy street urchin.
42 thoughts on “How to Choose a Dementia Care Facility. Avoid My Mistakes.”
My mother was recently diagnosed with moderate cognitive disorder and I’ve been looking at facilities so we wouldn’t be doing it in a crisis. Thank you for posting this, I’m going to go back and ask all the questions you bring up that I hadn’t even thought of!
Thanks for the comment, Anne! Don’t forget to go back at “off hours” and to try to speak to other visitors — hopefully you’ll get more than just the marketing speech. Spending the time beforehand can’t be beat!
Think your for all your input. My mother and I are going to follow your notes on visiting three times a week and asking the questions you suggested.
We have been very pleased with how good they were taking of my dad, but now the last three visits my dad is over-medicated. We can’t wake hime to even look at us.
Sorry your dad’s been over-medicated most recently, Sherry. One of the many challenges is balancing medication for a condition that fluctuates: the dosages that may be the most effective at one time may be too little, or too much, at another, and adapting the dosage for temporary fluctuations can potentially throw things off further. Hope this gets balanced, and that he rallies.
Strength to you. Timothy Hudson
This is one of the most helpful, accurate discussions on choosing a facility that I have read in any of the dementia literature. While this writer’s experience is with a loved one with Lewy Body Dementia, her questions and observations apply equally well for those dealing with any other source of dementia. A terrific piece that warrants sharing!
My husband was robbed and beat almost to death. He acquired a brain injury and two months later acquired dementia from the kicks to the head. I thought I could also care for him but he has progressed rapidly in decline and now is so aggressive and combative. I have a 17 year old son and his in college for the second year. He has been my only support and help but it’s interfering with his studies while I work. I can’t take it anymore. I read your story and I am grateful you shared it. I didn’t know where to turn I’m 56 and his 62. The monster that did this to him got away with it 29 days in a hospital almost died. Pray for us please I feel so betrayed by the justice system. I bought a gun for protection since the law failed to do so!
Oh my goodness I’m so sorry this happened to you, your husband and son. This is tragic. Prayers for your family, wisdom, courage and strength.
Hi. My mom recently diagnosed with LBD. She showed various symptoms a few years ago and the doc drew a clock, asked her a couple questions, and said she was fine. I thought ,”is he kidding”, “does he see what I see every day and night”? My grandmother had dementia and Parkinson’s, but not nowhere nearly aggressive as what’s going on with my mom. The most rapid onset within the past few weeks I’ve ever seen in dementia.
My husband, awaiting to be placed on the heart transplant list once they rule out prostate cancer. With his extensive heart condition and more, and I, too, am disabled, and mom to top it off. But all this is making my poor husband’s health worse with all going on with my mom. Last night was the icing on the cake.
After a ten hour round trip for a cardiac test for my husband, I went down to check on mom, give her meds and make sure all was well. I and my brother, who lives in the next state over, both of us on the phone all day making sure sugar tests and already prepared food was eaten.
To make a very very long story short, we came home last night and after all was done with mom , we went upstairs to get prepared for bed. We fell asleep to be woken by a house full of smoke, burning nose and coughing. Called down to mom, is the house on fire? Opened all windows n doors to breath. My poor cats too had difficulty with smoke.
Mom decided to cook, and toast. Toast got badly burned almost on fire. I ran down and took moms toaster and knobs off stove. This happened once before but not this bad.
Now, I’m searching for a safe place for mom (low income), to stay. The worse decision in my life I had to make. I’m so glad you posted the things to look out for and questions to ask.
My husband sang professionally for seniors, inside and outside of adult establishments. We know what goes on behind those walls. From neglect to more neglect is what we experienced.
I get so angry that the employees can sometimes have more rights than the patients. Bosses cover for their workers, it’s even worse for home health care. There’s nothing protecting the seniors with these home care agencies. They all cover for each other. They’re more faithful to their deadbeat employees than most are to their own spouses.
I’m truly sorry for rambling. I want to thank you for sharing your story and the story of others. I’m very sorry that your loved one suffered at the hands of those supposed to care for him. I know how that feels, exactly, for what multiple home care employees did to my own grandmother.
God bless you. Stay well and safe. God knows all and can see beyond any wall and what’s in their miserable hearts. ❤️❤️ With love.
That’s a punishing situation for you and your family, Dee. Very sorry for how things are going. It certainly is a difficult decision to place your mom, but with your combined health issues and those of your husband, it sounds like you’re doing what’s best, and what’s needed. Especially after the near-fire.
As for the agencies and establishments. I’m sorry you experienced such negative elements. I know they certainly exist. But there’s also incredibly good situations too. I have personally experienced this with my aunt’s facility in Maryland. I’m very impressed with all aspects. But it ain’t no “budget” facility, and I know that can make a difference. But I also have extensive, personal experience with in-home, paid carers. And although we had a few bad apples over the years, most were lovely, compassionate people.
I hope you’ll find more of the latter, and be pleasantly surprised, whatever happens.
And no matter what, you’re doing a good thing. Be proud.
Strength to you!
I don’t know what to do. My 93yo husband has LBD and I suspect I will need to place him somewhere in the fall. He is ambulatory and somewhat incontinent altho able to feed himself but I shower and dress him. Should I go with AL/memory care paying out of pocket, altho there is a limit to what I can afford? Or should I go with a NH and use Medicaid (have consulted with an Elder Law lawyer in order to protect some of our savings etc)? I am losing sleep over this and suffering from acute anxiety 🙁
Terribly sorry about your predicament. Lewy is so hard on everyone it touches. I have responded to you directly and privately by email, since this is a public forum and all comments can be seen by anyone. Strength!
I like your comment on considering different levels of care when looking for dementia care. I would imagine that for different severities of the disease it would require different levels of care. My cousin is looking for dementia care for his father so he’ll have to consider the differing levels that are available.
Still a very good article. I would add now based on nearly a year in long term care is ask in detail of the activities and the number of staff assigned to activities. Is there an Activity Aide in charge and does she have staff assigned to assist? See a daily, weekly, monthly and seasonal activity plan . Talk with the Activity Aide and find out who she gets involved and how she handles bringing in people to activities. Are there special interest clubs, men’s clubs and women’s clubs. Is there a painting program. And, who makes sure that those who could enjoy these programs get to go to them. Ask the Activity Aide what she would want most to improve the program. Ask what activities are available in the good weather, and are they outside.
And then tell them that you will volunteer to assist with the activities and when. I just volunteered at our place to help with activities on the weekend.
Those are excellent points, Sylvia! Thank you for your suggestion. It could be an article in itself, around the lesson’s learned and best practices after a period of time in a residential care facility. I’m sure that like everything, routines are established, things and people are taken for granted, and it’e be easy to miss small things that might make a big difference.
> I hope people will keep in mind your suggestions — like what are the activities specifically, frequency, staff for activities, how the residents are involved, special interest clubs, for men and women, ability to get outside, how people can be brought to the activities, whether loved ones are able to participate and help, etc. Your ideas are fantastic, and thank you for suggesting them.
> Strength to you, Sylvia, you continue to do incredible things for your husband! Timothy Hudson.
My 84 year old father has Dementia and is currently living in an assisted living facility. As of today there is a 30 day eviction notice in effect due to his aggressive behavior. He is extremely impatient, and gets agitated easily when things aren’t happening exactly when and how he wants them to. This is a negative trait he’s always had, but now is compounded with dementia which produces that trait on its own. I’m at a loss as to where he can go now because, as I understand it, even dementia facilities will not accept patients with behavioral problems. I have issues of my own that make it impossible for him to live with me (or he would be already).
I’m panicking. A few months ago, as a last resort, the facility he’s in allowed me to send him to a geriatric behavioral unit for two weeks. The medication tweaks worked for a while but the behavior gradually came back. The meds can only be increased just so much because he would be an injury risk if he’s too altered. Can you point me in the right direction to even begin to know how to go about finding out what options I have? Any suggestions would be appreciated very much. Thanks
Hi Carla: Sorry for what’s happening. Sadly, not at all uncommon. There is much to be frustrated by in most care facilities, so it’s no wonder he gets agitated. Especially if your dad was impatient before the ravages of dementia.
I can’t recommend a solution, especially since I don’t know where you live. There are different options depending on where you live (typically, although some have definitely more than others, some of which have very, very few). I am confident that he should be able to get a psych-assessment placement somehow. And now’s the time to actively pursue that.
> The best way to get info for your specific area is by joining one of the two groups I’m an administrator on Facebook of — they are both stunningly helpful, and full of thousands of compassionate people in similar situations. The links are below — I cannot recommend these highly enough, and recommend joining both (you have to have a Facebook account, of course). Hoping for solutions for you.
> Strength to you! Timothy Hudson
Lewy Body Dementia Carers group: https://www.facebook.com/groups/lyndseywilliams/
Lewy Body Dementia Support Group: https://www.facebook.com/groups/313102568744792/
Did you ever find a better facility for your father?
An excellent article. I, too, was one of those who thought that the 5-star facility associated with our Senior’s Village was going to give my husband the care I wanted for him — especially at $12,000 per month: wrong, wrong, wrong. Falls, no water pitcher, no bedsheet on his plastic bed, and the list goes on. I took him home with 24-hour, round-the-clock care: that isn’t easy either, but we have given him good nursing care. Not a bedsore in 3 years. He and I are both much happier. Thanks for your essay. It will be so helpful to many people,
Glad the article was useful to you. If it validates your choices, that’s even better. We can only learn from our own experiences, and those of our peers who went before us in this Lewy journey. You made the right choice keeping him at home — when the costs of “5-star care” are so high, keeping a person at home is comparable, but will likely have significantly better results since the ratio of carer to cared-for is likely 1:1, which is pretty much never the case in even the most expensive facility.
> Strength to you! Timothy Hudson
My family and I have placed my father in multiple skilled nursing facilities that are “memory care units” meaning they have locked doors. None of which have been equipped to deal with his symptoms. We live in the Chicagoland area and cannot find a proper memory care facility that also takes medicaid. I would love to pick you brain for additional ideas. Please e-mail me, Thanks!
Very sorry the facilities are ill-equipped to handle your father’s symptoms. That’s certainly not uncommon, unfortunately.
I cannot personally respond by email in many cases, especially not in a timely manner. And I have no idea about Chicagoland options, unfortunately. The best way to get quick responses from people who may know your specific location is to connect with one of the amazing support groups on Facebook. I personally co-administer two of these large groups and cannot speak highly enough about them. These are Lewy Body Dementa Carers, and Lewy Body Dementia Support Groip. There are lots of other smaller groups, but these two each have thiusands Of members, are international, and very active. They’re private groups, so your questions and comments are only seen by other members.
Hope you get a solution for your dad!
Strength to you. Timothy Hudson
I am learning that many places will not accept Lewy Body patients because of their continual changing behavior. After 24/7 care in the home for a year, he was admitted to the local hospital to help regulate his drugs. After two weeks they sent him to a geriatric psych hospital, where he has been for 3 weeks. His behavioral health has improved (except for a random day where he is combative), but his physical condition has worsened. He used to walk with help, now doesn’t really walk. He wants to though, so he tries to get up. Because of the fall risk, he has to wear a waist restraint. If the word restraint or combative shows up in his records, good luck finding a place that will take him. It is horrible not knowing what his future will look like.
Sorry for the many challenges, Kerri. You’re right that it’s horrible not knowing what his future looks like. I understand the care homes hesitation to take some people with LBD, and if they “require” restraints, that would definitely be a red light to most. At the same time, we need additional alternatives. This is not unlike what many parents experience with kids (and adult kids) on the Autism spectrum: options are very few, and far between. I hope things somehow work out — they just might, especially with improved medications and adjusting to those while in the geri-psych facility. Here’s to a quick recovery to his earlier baseline.
Strength to you! Timothy Hudson
My mother was just moved to a new memory care facility that we love. She keeps saying that she is going to kill herself so they sent her back to the psychiatric hospital (which she has been at a dozen times in the last three years). We are concerned that they are not going to take her back or just keep sending her to the hospital when she says upsetting things. How can we prevent them from kicking her out?
Sorry for what’s happening with your mother, Cheryl. That’s so hard. Not a unique situation, unfortunately. I’m not sure how you can prevent them from doing this, although I’d see the ombudsperson in your district — there are often rules and standards that must be upheld (but facilities may flaunt these in favour of having easy-to-manage residents, rather than any with challenging aspects). I hope she improves, and the suicidal ideation goes away. This may happen if they can get her meds finessed in the psych hospital. Depression is a common companion to persons with LBD, sadly, so if this can be treated, her suicidal thoughts might disappear. You’re doing a good thing for her!
> Strength to you! Timothy Hudson
Thank you for this article! We are looking for a facility in the Chicago suburbs for a 55 yr old with advanced LBD who needs feeding and all the care involved. He’s not walking really (gets too weak and falls after a few steps) and doesn’t speak. The temp facility he’s in has been giving him the wrong med to try to calm him — but causes the opposite for him, and other LBD patients. Not sure where to go for help because he’s not even 60 yet and all the assistance in our county (and most) doesn’t start until 60. Any ideas for advice of help?
Hi Sue — very sorry for your difficult situation. It’s hard to find a good location for someone as young as 55, especially when assistance doesn’t begin ’til 60-plus. I don’t really have any suggestions for you, since I’m in Canada, other than continuing to do your best to get the facility to stop with their incorrect medication use. I know it’s hard for the staff at these facilities to deal with behavioural issues, but so many medications just make things worse, and certain traditional anti-psychotics can even lead to Neuroleptic Malignant Syndrome, and death. I wonder if his very poor physical condition has most to do with improper medication, in addition to the punishment the condition is delivering.
I hope you can find a way things can stabilize and improve for him, and for you.
Strength to you, Timothy Hudson.
I appreciate you helping me learn more about how some facilities can have a strick “problem behavior” policy. My father has started to show some signs of dementia and we’re starting to look at care residences. He’s is a big guy, so when his disease starts to progress, it’s important for us to know what will happen if he becomes aggressive.
Glad to be of assistance, Megan. I hope things don’t get challenging with your father. Certainly it is not everyone with LBD who gets behavioural difficulties. In my own case, my loved one never had any aggression whatsoever. Frustration and confusion, certainly, but never “problem behaviour.” I am thankful for that, but also know many people who go the full journey without that element. Here’s hoping for the same for you!
Strength to you. Timothy Hudson
These tips would help people find a dementia care facility and avoid mistakes to evaluate the quality of care being provided. Good work!
My husband has been in the psych ward of the hospital for almost 7 weeks. He wouldn’t quit hitting me so I called 911. He has continued this behavior in the hospital. I don’t know how much longer they will keep him. I’m really worried what is in his future.
Very sorry for what’s happened, Angela! You did the right thing, absolutely. Your own safety is the most important. No carer can continue if their own health and security is forfeit. I hope they’ll keep him, or find placement for your husband, directly from the hospital. And if he comes home, please make sure you’re safe, and have contingency plans in place, including advising neighbours you might need help, having a safe place in your home you can be protected, keep a phone with you always, ensure all weapons are removed, etc.
Your safety is paramount. Please make sure you are protected.
Strength to you!
After he was taken I had no idea where he was. He then got Covid, and I was finally allowed to see him today through thick dirty glass, WE had no privacy.
I spoke of legal matters, he was engaging, but I got a good telling-off by a nurse — in front of Dad — apparently I was to keep to light matters only!
Anyway as I spoke about cooking together, him needing my cooking to pile his weight on, the nurse stopped visit: I told him I love and miss him and would be there all the time if I could, she held his hand and told him to wave bye bye……….This is an ADULT not a nursery kid.
I’ve not seen round this home, Dad’s room, anything.
At Xmas, I dropped off his glasses, and lots of nuts, seeds, dried fruit to try and up his weight.
The nurse said he has no glasses and his eyes are swollen weeping and red raw.
Nurse said moving him would be cruel.
But I think WHY are his eyes like this? Are they shouting at him? Why did he look at nurse to see if ok to answer after her telling me off?
He’s half the man he was before they took him.
Plus, I have no PoA.
What a punishing road you and your dad are on, Sally. Very sorry for how it’s going. With things as they are currently with lockdowns everywhere, I don’t really have suggestions, other than making sure you visit as frequently as possible, even if it is behind glass — that will convey to the staff that you’re keeping an eye on both them, and on your dad, and I expect that’ll help ensure he gets the best treatment.
Without having Power of Attorney (PoA), it is very difficult to make changes, and why I try to get others to do that very early on — you never know what’ll happen. But it’s not always easy to get this done, especially if there’s a crisis, as often happens with LBD.
Hope you’re able to keep everything going the very best possible.
Strength to you!
Hi, my mom is 85 was diagnosed with LBD at 83. We have decided to put her in a small group home that has a full time onsite caregiver and hospice. This is following a 2 week hospital stay for an infection. Mom can no longer stand up on her own. Really has no strength at all. She is having trouble swallowing. My sister and I are torn up that we had to do this hope we did the right thing for mom. It is really difficult when she tells you she wants to go home and feels that they are just waiting for her to die. Do you think we did the right thing?
I think you did what you felt was best, with your mom’s best interest at heart, Carol — which includes what she’d want for you. This is easy to forget, in a situation where we are often so singly focused on the crises that are afflicting our loved one, and we neglect to consider what they’d also want for us. Certainly a small group home is preferable to many large institutions, assuming, of course, that their staffing levels are sufficient.
Strength to you, your sister, and your mom.
Thank you for this information. I’m going through it now and this is very accurate and very good advice. Thank you!
Glad you found the content useful! Any mistakes that can be avoided will help you find the best possible solution.
Strength to you!
I’ve just read your helpful article. We admitted my mother, hospice with late stage Alz, to a nursing home hospice bed three days ago. She is not bed-ridden, but can’t walk. She sits in a wheelchair and scoots a little (not intentionally). Very fidgety. She cannot feed herself or go to the bathroom, but at home she had not been using diapers; my dad, sister and aids helped her onto the toilet. Very difficult. It takes two people to get her to use the bathroom. The NH told us they would put her on the toilet every two hours but they’ve just put a diaper on. They said they would help her eat, but we don’t think they are. We don’t know the right kind of place for her. MC units seem to be more assisted living. Nursing homes seem to be more for short term rehab or bed-ridden patients. She is not bed ridden but needs a lot of care.
That’s a tough situation in so many ways, Terri. Sorry for how things have been going. Seems to be so many variables, especially when they change with time as well. I hope you’ll be able to find a suitable location, and that your mother is cared for well, and that you and your family can be as much at peace with the outcomes as possible. It’s a hard road, indeed.
Strength and courage to you. Timothy Hudson
It is my luck to see this article. I have recently got my dad into a nursing home who said accept dementia. But we are experiencing your points numbers 2 and 3. I think because of the change of surroundings and routine, he is not very adapted to the new environment yet. We are being asked to leave if he still continue to behave like that. So they are looking for ‘good’ patients with minimal attention to care. I understandg that. If anyone can help us for Toronto area skilled care nursing home, we desparately need the info.
Glad you found the article, Meg, but very sorry you’re having this experience. What you describe is, sadly, quite common. And you’re right — facilities look, ideally, for people who won’t be difficult, unpredictable, anxious, vocal, aggressive, etc. Understandably, but these individuals still need the help so very badly. I just returned from the US, from visiting my dearest Aunt, who’s in a very good facility, and although she’s a “good resident” with none of those challenges, really, several others in her unit are extremely difficult, and that makes everything problematic, where the latter need all the attention, and the rest of the residents get virtually none, despite paying for it (and paying a significant fortune, I should add). I don’t know what the solution is, at all, but I feel for you very much. By paying a fortune of our own, we hired people to help us, and were able to keep my mom at home to the very end. But this is impossible for many, and implausible for most, I expect.
Hoping you can find something that’ll work out — and I’m sorry I don’t have a personal recommendation, despite living in Toronto myself.
Strength and courage to you. Timothy Hudson