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My dad 93 was weak when he came here in Sept and we have worked with him while Covid had assisted living closed up but the goal was always to move him. He was doing much better, walking 1/4 mile a day and doing other exercises. He has some dementia but copes pretty well on the day to day stuff, like dressing and eating. Anyway, the assisted living opened up dining and some activities so we moved him to it... it's one of the big names and pricier choices. Close to us which is a plus. He loved it and was so excited to be going. But in less than a week he has declined a lot. He was recently on prednisone and came off about a week ago and was feeling tired when he moved. I presumed it was because of the prednisone withdrawal. Now, however, he's falling in his apartment and seems disoriented etc. I'm SURE it's strange being in a new place and not knowing your way around or how things are done. Maybe it was too much for him. He fell twice today within an hour of each other. He doesn't press his call button but they just found him on the floor; he was rushing to answer the phone. He really wanted this one bedroom place and I see plenty of very old frail people there (as well are more higher functioning people), Maybe this wasn't the right place for him. I know a week is not enough time to evaluate, but two falls in a day? (he fell twice in 9 months at my house). The care staff are in and out all day and he is on level 2 care. How can you tell if it's the right place for your LO? At that age, does anyone adjust to this big of a change?

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My mother, who had NEVER fallen, fell three days after moving to her memory care place and got 28 stitches in her head. Since she arrived at the place in a wheelchair (the walk from the parking lot was too far for her), the folks at the MC didn't realize she could walk, and she tried to get up to go to the bathroom without her walker. It was a miscommunication all around, but of course, I was livid. (Why would I bring a walker if she was wheelchair-bound??) Still, I came to realize that it's an adjustment for the staff as well. They have to get to know him as much as he has to get to know the place.

It is a huge upheaval for them, especially with dementia, and yes, it takes time to acclimate. They also probably won't acclimate to a level of what was "normal" before, because when someone has dementia (at least in the case of my mother), any shock to the system like a move, an illness, or an emotional shock (my dad's death) results in a step down in her ability to bounce back. The bouncing back also takes a LONG time once it does happen.

One thing I did for both the nursing homes my mother has been in was to write a short biography of my mother for the staff. It gives them an opportunity to know a bit about who she was before she came to live there, plus I also put in important information I felt they needed to know. For example, she has macular degeneration and can't see faces, so I asked that they identify themselves when talk to her and don't touch her without speaking to her first, because she may not see them coming. I also gave that biography and the notes to the hospice people when I signed her up with them as well, and they were thrilled to have it. They meet their clients for the first time at the end of their lives, so it's been very good for them to understand what kind of person she once was.

Consider writing a biography for your dad to share with the staff. Be in touch with them, let them get to know him, and obviously stay in close touch with your dad as well. Remember to be part of the team that cares for him, not an adversary.
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NeedHelpWithMom Mar 2021
Excellent posting! Wonderful advice to the OP and all who read this and in a similar situation.
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It is a huge change and very normal to see sudden decline following a move, it is very disorienting for them. You are right that a week is not enough time for fair evaluation. Ask the staff whAt they commonly see for adjustment. Try to be patient as adjustment needs much more time.
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kaychaz Mar 2021
Glad to hear that from someone else. The Assisted Living where I put my parents told me the first 2 weeks would be awful for them and it has been. it's only been 2 weeks and 3 days. My mom has been so disoriented along with my dad. They are so unhappy and want to go home but that is out of the question as my dad can't tend to his bathroom needs and my mom can no longer care for him as she has been doing in the past since she has health issues. I'm praying they will adjust soon. I know where they are is the best place for them, but I get so tired of hearing how they need to get out of there. The place is wonderful and the staff are so caring and patient so it's just them wanting to be home, which I get, and my mom not getting her way for the first time in her life! :)
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Question - why was he on the prednisone?

Concerns:

Lookup says this medication suppresses the immune system and has withdrawal issues:

"Prednisone withdrawal: Why do I need to slowly taper down the dosage?
(from mayoclinic)
If you abruptly stop taking prednisone or taper off too quickly, you might experience prednisone withdrawal symptoms:
*Severe fatigue
*Weakness
*Body aches
*Joint pain
*Nausea
*Loss of appetite
*Lightheadedness
Prednisone is similar to cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their normal function.
The amount of time it takes to taper off prednisone depends on the disease being treated, the dose and duration of use, and other medical considerations. A full recovery can take anywhere from a week to several months. Contact your doctor if you experience prednisone withdrawal symptoms as you are tapering off the drug."

At least 3-4 of the withdrawal issues they list could lead to falls. How long it takes to wean off depends on what it was for and probably how long he was on it and the dosage.

Since you had been "working" with him at home, getting him walking and active, it might be a good idea to have a good checkup and perhaps get OT/PT in to help him build up more stamina and strength.

Good checkup should include blood work and a urine culture. Since this is an immune system suppressor, he could have picked up a UTI or other infection. If he isn't eating and drinking enough, it can cause imbalances in the blood. Even drinking too many fluids can lead to issues - my mother managed to do that and end up really looking ill and confused! Once they stabilized her with an IV drip bag, she was back to her grumpy old self!
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marydys Mar 2021
Dad suddenly couldn't hear AT ALL (his hearing was always bad but it got bad overnight) I took him to the ENT and he said that there is a thing called Sudden Hearing Loss that is caused by dormant virus's like Shingles attacking the nerves in this ears. He was tested and had lost 30% comprehension of words since tested in November. The treatment that SOMETIMES works is Prednisone. Yes, it was a risk but his quality of life was worth the risk. He did fantastic on the Prednisone but came down hard. Too hard to be explained by just the prednisone which was slowly reduced .. His BP got very low again even though he was on Fludrocort (another steroid for BP) The cardiologist now has prescribed Hydrocortizone (oral) in a small dose and he is doing better,. I take him to the doctor ALL THE TIME and he gets labwork done frequently, so while I appreciate the advice, about UTIs etc, I don't think that's the problem.
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"Assisted living" assumes a certain level of independence in a tiny apartment. It is NOT a "nursing home" where people will be constantly monitored.

It's possible that he has experienced a small stroke, which is why he is having balance problems and disorientation. I would recommend a medical evaluation.

It's also possible that he may need a higher level of care now - but he should be evaluated medically first.
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I have worked in assisted living for 23 years. Assisted living is for people who are still able to push an emergency button if they have fallen or need help with something. Doors are not knocked on to remind them of activities or to go to meals unless it is a scheduled, paid, service. Was he assessed before going there? What I find a lot is families think their loved one "only has a little dementia" only to find out when they are here, they have a lot more challenges than the family thinks. Then the family gets angry with us as we suggest more services to help the person, or even a move to memory care. We truly don't do this to make more money, we just want our communities to be a comfortable place for their loved one. I also see families not wanting to pay for additional services to the detriment of their loved one. Memory care is a whole different story. Residents are encouraged to participate at activities and meal time. And I do tell families the first two weeks can be tough, and with someone with more challenges it can take up to a month. Plus this last year has been tough on everyone.

I love the biography idea. We do that for every new move in and share it with staff. It gives us a chance to know them more.

Hopefully time will help. And hopefully you can do inside visits. We are able to do that now with essential caregivers.
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marydys Mar 2021
Thank you... I asked for a higher care plan that would bring him to activities and they said they can't do it??!!! This is a high end place so what's up with that? The recommended I pay a full time caretaker to sit in his room with him and get him places. I MAY have to do that but it seems ridiculous that they can't provide this service. What do you think?
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Although we care for our mother, my sisters and I are also very aware that our age is also creeping up on us. We all say, "I will never do to my children what Mom is doing to us." I think that one advantage of taking part in this forum is learning what the progression is going to be like for us. This post and others like it warn me that the best thing to do for my children is to watch for signs that my time is coming for downsizing or moving to a care facility. When the time is coming, I will take my time to make the right choices, but I will also make the move early enough to handle the change better.

I can see in my mother, now 96, that her ability to adapt and learn is becoming extremely tenuous. She really should have moved to residential care at least 5 years ago when the change would have been easier for her. Even then the choice would not have been assisted living, but some range of nursing care. In our state there are specific behavioral guidelines regarding the type of care each level involves. "Assisted living" behavior looks like someone who could manage well enough at home, but benefits from a little help now and then. I think Mom wouldn't have qualified for that much past 85--and at that age she was adamant that she wouldn't go. Of course, that decision would not have lasted long if she didn't have daughters to fill in where she was no longer able. The longer it goes on, the less she is able to see that she really can't manage. That will become part of the problem of adjusting to a new place when the move absolutely must be made.

We all wonder if we have made the right choice in enabling Mom to stay in her own home for so long. The worse she gets, the harder the move will be. It is so very difficult trying to make the right decisions in caring for the elderly. Each is so different and the "right" decision is never very clear. The fact is that the end of life is a really difficult time and we will probably always doubt the choices we make, however good our intentions.
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marydys Mar 2021
Oh yes! I tell my sibs all the time that this would have been easier for him a few years ago but then (and now) they said it was his choice and that we couldn't have forced him. I will definitely check myself in somewhere as I don't have a loving daughter (like me) to take care of me!
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I don’t agree with others saying that he needs to move immediately to LTC or NH. To go from being ambulatory without falls and then such a sudden change in falls indicates something has contributed to it. If he has vascular dementia, he could have had a step down occur due to more brain bleeds or TIAs. Medication can also contribute to loss of balance. Does he use a walker? That would be helpful. If not have his doctor order a PT visit and they will assess him him and teach him how. I will tell you, most elderly will just sit all day watching TV or reading, and that will decondition them very quickly. My dad felt he deserved to sit after over 90 years of working around his home and that was the beginning of the end to his independence. Nothing I said could get him to walk or participate in activities. An occupational therapist can assess his apartment for fall risks. One thing came to mind was to have his phone where he can easily get to it, even if that means multiple cordless phones,
I would approach this from a methodical manner and don’t rush into moving him again. Moves are hard on them and usually take 3 months to adjust to them.
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marydys Mar 2021
Yes he has a walker but while in the apartment he sometimes doesn't use it. He fell again last night and when I called him today he said he was going to use it all the time (yeah, right!) I have 3 cordless phones installed in his apartment but it doesn't really help as he likes "the main one" and still goes for it!. Thank you for the 3 month advice
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I will scream this to the rooftops. Everyone who has a loved one with any minor to advanced dementia needs to have a camera in the room. Please do not have blind faith in the promises and feedback from staff and management in any of these facilities. I have had my mom in 3 high end facilities and here are the cold hard facts: they do not have the staff to care for the amount of residents. They may meet the "required" staff but it isn't enough to properly devote any reasonable time to individual residents. Your father probably spends his entire day alone with very limited social interaction. If the dining room is open that is great but even with a camera my mom would sit in her room and never be taken to a meal (yes, it is in her care plan). The "activities director" does not go around and grab all the residents for activities or do one on one activities if they are not interested in group activities. They will say they do but put in a camera and get the real story. This is not isolated...this goes on in most facilities. What I see with my mom having a camera is pretty crazy so I can't even imagine the isolation that other residents have felt during the pandemic. He is declining because he is not receiving what he needs from staff. Whether it is medical or mental, they are not present enough to even interpret a change in behavior. Wondering what leads you to believe that care staff is in and out all day. And if in fact they are in and out all day, what type of interaction and how long are they with him? Everyone...get a camera whether you pay $4000 a month or $10000 a month, it is all the same care.
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marydys Mar 2021
I have 3 cameras in his apartment? I'm not sure it's a good thing for me mentally because no matter what I won't be satisfied with the care! The care staff IS in and out all day and night.. basically just saying "John, do you need anything?" and cleaning up after his meal. I asked for a higher level care plan to bring him to activities and they said they can't do that? WHAT??!! The recommend I hire a full time caregiver from an agency to be with him!
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We moved mom from a 3 bedroom 2 bath house into an efficiency apartment in Assisted Living.  I chose the efficiency for several reasons.  The apartments with bedrooms were small and everything was boxed in.  I thought it would be confusing for her.  The Efficiency is roomy and she can see everything from any spot in the room.  Once you move them from their familiar routine, it becomes very noticeable how much they have declined mentally.  My mom can't remember that she has a call button on or what it is for.  My advice is to make sure there is MINIMAL furniture in his apartment....nothing he has to maneuver around. A chair, a bed a TV...if he has a side table, make sure it's against a wall and not in the middle of a room where he has to walk around it, etc...  Make sure his shoes are not catching on the carpet and tripping him.  Give him some time to get used to everything.  My mom has been in assisted living for almost 8 years and still has days where she gets lost going to the dining room.  Hopefully your dad will make a friend or two and he can have some companionship.  It gives them hope and they fair better when they have a friend.  Stay on top of the activities schedule and try to get your dad to attend things...our place has a church service, sometimes they have entertainment, they have bingo, stretching classes, etc... try to get him to participate or just watch.  I would just give it some more time and visit as often as you can.
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marydys Mar 2021
James my biggest problem is that they aren't taking dad to activities which would help him if he would just get ONE friend. I even asked if we upped the care plan would they do it... they said no! I will stay on it though because that seems weird to me and they are probably just very frustrated because I've been a squeaky wheel.

Dad is reluctant to go to activities because everyone is masked and he's basically deaf and lip reads so he's frustrated that he can't sit near someone and talk to them face to face.

I have a tablet set up with a daily agenda calendar that he refers to of all the events as well as his doc appointments or reminders from me. However he can't seem to remember when the time comes to get to the event. If I call him to remind him, he has done it... but I can't keep that up!
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When a loved one has AZ or dementia. A move, even one they want to make, is a big deal. It throws off the routine they previously followed and can cause anxiety and confusion. If sleep is disrupted your Dad may have been more tired and off balance. My dad suffered 5 falls in an 18 day period when we placed him into a high end MC. Two falls he actually slid out of his wheelchair, but still- where was his staff? I came unglued and told the facility there was neglect for the fact they always responded After a fall; they weren’t proactive. In my dad’s case, it turned out he’d blown out his ACL and torn his MCL. Knee replacement wasn’t an option given his age and medical condition. More falls were a certainty, so Dad’s Dr. wrote an order saying he could only do transfers with a 2-person assist. I let the facility know I’d better not hear about how they can’t spare two folks, esp. overnight. Things improved, but the damage to his knees was already done. Be sure your Dad’s ok.
a camera can’t hurt! Best of luck!
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marydys Mar 2021
that's horrible I'm so sorry!
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