Do people eventually adjust to being locked up in memory care?
How will I know if they are ready to go on an outing?
My parents have been in memory care for one month and two weeks.
The fibs about the doctor having to release them are not working anymore.
They want to go home to the house where they lived for 55 years.
They both say they would rather die than be locked up in memory care for the rest of their lives. I think I would if it were me.
They call at least 30 times a day.
Some nights they think they are at a hotel where they used to vacation.
When they call me in that state of mind, I tell them I will come and get them in the morning. They don't remember this the next day.
Advice appreciated.
The RAZ memory phone worked for us for several months and I didn't have to worry about him calling the bank, or the cops, or all the other things he threatened. Sometimes we even had lovely good-night calls. But eventually, he too started with the 25-30 calls a day, crying, cajoling, pleading, threatening and so on. Even with sending them to voicemail, it was upsetting. When he finally said he hated the phone and didn't want it, I was relieved, because I was going to have to take it away. Now he still asks me to find him a "good" phone and I have to say I'm still looking. Sad, but we can never go back to that again.
Bottom line is there are products like this available that help with certain situations, but even they aren't perfect. There are also no-dial phones (available on Amazon) but in my opinion, I think they would create more anxiety, looking at a boxy landline phone with no "face" on it. Kind of sounds like a nightmare!
You're getting a lot of advice here, and I hope some is helpful. I'd also add that if you can find a support group for yourself, please check it out. You are not alone, but it's a long and uphill road and it often feels lonely. Best of luck.
They have only been there a short time. You have to update the "Therapeutic Lies" to whatever seems plausible to them. If you visit at night, you can tuck them into bed, then leave when they're asleep.
Something that has been really helpful for us is ppt charts. I made 2 simple powerpoint charts. Siblings/spouses all have copies. They're taped on the back of Mom's AL apt door. When she's anxious/teary/unwound and calling repeatedly, we walk her to the door. We have her read the slides to us. We do it over and over until she calms down and her questions are answered. On the slides we have: Her address; how/why she moved there; who lives nearby. On the next slide we address her next set of common anxiety causes: your rent is paid; you eat in the dining room; your sources of income are; and...most importantly, you are safe and surrounded by staff in case you get scared, injured or sick.
When she talks about missing NY/her friends, and wanting to go visit family in Puerto Rico, I say...we'll work on it for the spring (or summer, or fall). That works and it's soon forgotten. We do go for rides in the car, and it's a super treat to go to the mall to wander around (and reminisce about all the fabulous Macy's shopping done over a lifetime), and drive throughs are a treat.
Hope this helps. At night, after I've spoken to Mom once, I "block" her calls til the next am. This has been a tremendous anxiety reducer for me. Also, I've worked with the grandchildren to set up a rotating daily contact schedule to call their Nana. Each has a day (or 2) that they're responsible for an evening call to Nana. If they can't make that call, they get their own sub. That works well!
Please watch out for your own physical, emotional and spiritual wellbeing. It's a rough journey.
Bugs - Mom, the house had bugs and I had to contact the exterminators. They have bombed the house once and will have to do it again. The house cannot be lived in for awhile.
Carpet - After the bug bombs, it was clear the carpet needed replacing. I have contacted the carpet layers and they are booked out for several weeks. They cannot get to us for about two months.
all
Locks - Since the house has been empty and I had to give the key to all the workers, all the locks have to be changed. This will take several weeks.
And so on.....you can add in the yard work people, painters, and whatever other service you can think of. This was a very hard lie to keep up, esp since I was trying to sell her home, so I could pay for the memory care. This is a very hard thing to do. Eventually, she stopped asking.
We returned her to her home with 24/7 care. THIS COST $18,000 PER MONTH. We were using her funds while she was still cognizant enough to have funds transferred from her IRA. It got to the point where she was not able to do this and because there were some banking. POA and Trust complications to resolve I used funds from my savings. I spent over $60,000.00 from my funds. She didn’t qualify for Medicade because she had funds in her IRA but she could not use them due to her incapacity. I am successor trustee and was able to recoup my expenses after the home was sold. But in the back of my mind I was not sure this would happen because I didn’t know if there was another Trust or will I was not aware of.
sorry to be long winded but my point is that returning your parents home could be financially devastating. In addition that does not necessarily free you up. I live about 70 miles from mom but my brother was just 2 miles away. The caregivers were constantly calling him. We need this or that. Mom is not cooperating, etc, etc. He was working at home due to Covid and it was tough to balance all that.
While my mom with dementia was mobile she did not wander from home. This would be something else to consider. Caregivers would need to watch both if wandering off is an issue.
You may need to start answering less when your parents call. If there is an emergency the facility will call you. I know it’s hard to answer the same questions over and over. The question with my mom was meds. Every 5 minutes it was “when do I get my pills”. My response always was followed from her with lots of horrible names for me.
once again sorry to be long winded. This dementia thing is so difficult. Good luck and hang in there.
If they think they are in a hotel, fine, tell them to have a great time. If they ask to come home, tell the, I’ll be there in a little while, in the mean time, just relax.
Remember the home they are talking about could be not real. Home means different things at different stages of your life. Maybe they are talking about the home they had when first married; maybe they mean their childhood home, maybe a weird mix of all there homes…bits and pieces of each.
Ignore their calls. Ask the facility if there’s some activities that can help occupy them. Ask the Dr to adjust their meds. Mostly, you will just have to ignore their calls and requests. This disease is so hard to cope with for the entire family. When placating them, be as upbeat and nonchalant as possible, that will help them be calm.
I dont think more (and unsupervised when needed 24/7) )change even to visit is good. Maybe you can get a special phone number or app they think is your phone number with a sweet message on it so you dont have 30 calls a day. I dont think I would do any outings. Now a few old school movies they might like and its safe! Popcorn and all if they wont choke on it.
Remember their brains are dysfunctional. You cant think of them as coherent adults. They might need a while to adjust to their new adventure! Six weeks isnt long. Try joining them for a meal or the movie. Make their present seem more familiar and normal. Visit regularly but do your life. Otherwise, no clue!
Your post could have been written by me last year. Both parents moved into memory care at the same time, had a difficult time adjusting, and begged to go home. It’s tough to be in your position. But my parents had lost the ability to use phones and tv remotes etc by that time, and we did not put a phone in their unit due to the number of frantic calls I had been receiving daily when they lived at home.
It will take time for them to settle in, but they may never accept the arrangement. My advice is make a plan to limit their calls somehow or stop them completely. It is probably stressful for them to be calling that often anyway, and it may be interfering with their adjustment to their new home situation. Hopefully you can visit or stay in touch with them through phones calls or even video calls, if staff is willing to help with that. What I have witnessed is the amount of support and number of people it takes to support the later stages of dementia in two people. My parents turned their residential community upside down with their behavioral needs. It took professionals to manage it, and one person employed at their home would not have been nearly enough.
I was mostly honest with my parents, reminding them that their lives at home had become unmanageable and and that they might be able to relax more now that things like cooking, cleaning, bill paying, doctor appts etc were being handled by staff to reduce their load. And that they needed to be safe and have 24hr care.
My dad declined very rapidly due to multiple health conditions and passed in May. Now it looks like mom will be going into hospice this week due to broken hip surgery and her inability to bounce back. A lot has transpired in one year.
Be sure to take care of yourself and try to manage the stress that goes along with dementia in loved ones. It can take a serious toll on your own health as it did with mine. People told me that as hard as it was, it wouldn’t last forever due to the nature of this disease. However as much as I knew it was coming, saying goodbye to my mom is something I’m really struggling with.
I wish you the best.
There are programs to help with in home care if they can not afford it. Sometimes insurance will cover it, but if not see if they have a program like we do in our state. It is called IRIS. They will help provide for all their medical and personal needs not covered by insurance. They will pay for caregivers (including family).
It is a much better option and your parents will at least have a chance to thrive and be happy again.
it takes time for them to get used to it, the staff figures out how to best help them ( our facility did not want to put her on anything till 8 weeks to see how she adjusted)
now she loves it there! She has new friends, social life, and staff to check on her! Your parents will adjust in time, but talk and work the nursing/care team.
As for the constant phone calls….no. You need to put limits on that. I would block them from your phone except for the times you are okay with them calling you. Then call them once a day. Some days my father would call me over and over again simply because he was pushing buttons on his phone. So I blocked him and then unblock him a couple hours in the evening in case he calls then. Protect your sanity.
( right?) and , the facility where they reside has assessed their cognitive status ( right?) as qualified admits to " memory care" ( right?)...... and, you( POA) and the family have agreed, they are in " memory care" for safety reasons ( right?). Their " short term" memory will indeed prevent them from remembering they have called you, hence the 30 plus phone calls a day and lack of memory the next morning about prior evening conversation. Their " long term " memory allows their fond memories of their home of 55 years etc etc...
This is all to affirm you and your family decisions, based on professional assessments of their
" safety" needs.
The fact that they are both very newly placed in memory care is also a factor; any placement in a facility for any diagnosis takes a period of adjustment; they are grieving their displacement from their 55 year residence and other associated changes. You and family are also most likely grieving their " safety" needs for placement.
Speak with the facility " care planning" team meetings and confer with them re suggestions about" 30 plus " phone calls......
Are they making the calls from cell phones or facility phone?
Speak with facility team to be sure that interdisciplinary care such as Social Worker, Chaplain etc are seeing them on regular basis...
Try sharing with parents the " safety" reasons etc that have led to placing them in memory care. ( Remember they may or may not remember the conversation but it will respect their dignity to honor them with the conversation.
Be sure that whoever is the POA for the parents is included in the conversations if that is not you.
There is no easy answer...
Staying in conversation with the facility staff meetings, your parents and their PCP will ultimately serve you all best towards compassionate, loving decisions and care for both your parents and yourselves....
So it sounds like placement was appropriate, but that their ability to access you is wearing you down. You might need to rotate fiblets to fit the situation or eliminate the calls or notifications-either on their end or on yours. You can discuss with the staff the best way to do that.
Unfortunately you're getting tag-teamed. They're reinforcing each other-that's understandable-nothing looks familiar, it's challenging for them to navigate their day, and will continue to be until they can get used to things. Two people will be able to loop a conversation between themselves, so you're more likely to hear from them than if it was one confused parent, who might not follow through on a thought. Their solution is to call you, and since they can't remember anything, each time they do they think it's the first time they've called.
Six weeks is fairly soon. Adjustment takes a long time because they have no short term memory to help them store information.
My mom didn't get onto a schedule until 3 months, and I think things started to look familiar to her at about 4-6 months.
(she was mid to late stage 4 on the DBAT checklist linked at the bottom of the page here: https://www.tamcummings.com/tools)
At some point the new routine will become something they rely on, and they will prefer the structure at the facility. But I don't know if the yearning for 'home' ever goes away.
When you get to the point that you're ready to take them out, keep it short and sweet. Take them somewhere generic-do not take them anywhere that will trigger memories of their home if you're not up for the conversations that might result from that. I took my mom a nearby grocery store to get cards and snacks, and it was easy to get her back in the door and tell her she needed to drop those things in her room. YMMV. Good luck!
My mom is in a nursing home/SNF, not memory care as she is pretty immobile and therefore no issue of potential wandering in her case. She was placed at her great SNF after a terrible fall and 2 week inpatient stay for various things (collapsed lung, sepsis/blood infection needed IV antibiotics for 8 weeks, post op surgery for bone infection caused by the blood infection, GI bleed, raging uncontrolled diabetes, on and on (along with clinical depression, OCD and a personality disorder). The dementia (as I assumed she had) was diagnosed after the IV antibiotics ended while at the SNF and they were able to get the other medical/mental issues in check/managed to weed out other things that may have been going on. Actually, she went first to the SNF's rebab unit when discharged from the hospital before moving to the SNF floor as a permanent resident in the same facility. We did a Medicaid spend down for her; she is on long term Medicaid coverage now as she had not much in the way of any assets/income. Previously she lived in my house, and I tried to handle her care (that is another story).
Two years post SNF placement, she has still not adjusted in the sense of accepting this is where she needs to be, where she can safely get the care she now needs for her medical and other issues. The facility has a myriad of activities each day and lots of aides to help if one cannot walk (her situation). From exercise class (in your wheelchair if needed); games (even hall way bingo, just need to get to the door of your room); outings in their beautiful gardens; meals in the lovely dinning room where you can be with others; they even have a daily "big screen" movie in a hall set up like a theater, but where wheelchairs can safely get around. She will have none of it and stays in her private room, 24/7 with the TV blaring, the blinds closed and the lights out -- a bit like a cave. Sometimes she refuses to shower but is generally not that oppositional with the staff. W/me when I tried to care for her, is was oppositional behavior all the time; maddening.
I had to block her cell phone to stop the 2 am calls or the repeated calls often 10 in a row. I explained this to her and the staff that she could leave me a voice message and then I can choose when I want to listed (so it is not at 2 am). If there is any real emergency, the nursing home will call me.
Sad, but you may want to try blocking calls even if it is just for certain hours per day. Inform them you are doing this, that they can still leave a message but then you can control when live calls go through or when you choose to listen. The beauty of call blocking is there is no "pop up" on your cell phone that a call was missed, and there is no call that goes through at all. The voice message is there a you have to actively look for it. Think of this as setting a boundary for you mental health, so you can manage/control the phone intrusions. And hopefully they can learn over time to "self sooth" at bit by NOT always being able to get to you on the phone at any time day or night.
I had to limit my calls to once ever other week and to limit the time to about 20-25 minutes; so they calls could be focused and not wind up back in the "I want to come home" pleas. At that time I had a scheduled, such as Thursday at 11 (after morning clean up and before lunch). I found afternoons to be not good, she has sundowning. Back then I would visit every other Thursday and stuck to a 40 min visit. The limited routine helped her calm down and give me space to start my own recovery. On that front, getting w/a great therapist for yourself can do wonders. There are so many emotions here, working with someone can help greatly.
PS Eventually had to go no contact w/her (folks can read my bio if you want to learn more). She has yet to acclimate; me still recovering.
It all has to be the same if they have the same people everytime then they would get into a routine but it doesn't happen that way. My BIL is taken downstairs to their dining room M thru F then on the weekend he eats upstairs it throws him off everytime.
The other thing is the place where we have him is just a couple of blocks away from where he used to live and that gets him too. He likes the outside but where he is doesn't get the outside unless on of the family members gets him. That also throws him off because he thinks he is going home to his apartment.
Dementia mind is complicated you never know what will be coming out of it. My BIL would be on his cellphone for hours but no one on the other end.
Just keep telling them what you have been telling them that is all you can do. And redirect them if they have their furniture in their room just refer to that. That is what we do too.
My BIL has been in memory care place now for 6 months and we still hear the same stories.
Prayers.
The phone calls are another issue. We just went through this too. If they won't or can't abide by set limits based on telling them they can only call during set hours, then you'll have to set the limits yourself. We did that by getting Dad a phone that we can control remotely. He is cut off from calling certain people at certain times. The phone (Razor) was expensive but worth it, as dad was incapable of limiting his calls. Taking the phone away completely would have been one more blow to him.
I hope something in here helps.
Now she is at work, answering the phones.. states the phones have been very quiet..
and then wants to go home… sometimes it the childhood home.
They have upped her meds which has helped. Plus, got music on board with the TV spectrum plan..
my husband was quite distraught, but now realizes how dementia impacts her brain. My husband has learned there isn’t a lot he can do.
What kind of phone are they using? Cell or landline? Doesn't really matter I guess but I would ask the staff it they can take it out of her room for awhile. Get them used to NOT calling you. I would not answer ANY calls at this time. You can call them if/when you want to. Talk to the staff to find out what's going on. I agree with you asking the staff for advice. They've been through this with untold residents.
Best of luck.
As for the 30 calls a day, I hope that you do not answer them, that just adds to the confusion as they think that they will convince you. Do them and you a favor, do not answer all these calls, it is ridiculous.
Let them be for a few weeks so that they can acclimate themselves to their new home.
They are where they need to be, it is just a matter of adjusting.
One day she is pleased with her “retirement home”. The staff is lovely and they take of everything for her.
One day she yells for them to help her get ready or she’ll be late for school. (university)
One day she is tired of all these bed and breakfast homes, all this travelling, and wants to go home. Now.
One day she is happy with the bed and breakfast she is in because she’s been able to relax and do absolutely nothing. She has just returned by train from NYC, where she was busy sightseeing for the past several days. And she’s exhausted from all the hustle and bustle.
One day she is content in her own childhood bedroom. She tells me that she doesn’t recognize the male voice in the hall so one of her brothers must have a friend over. The clattering of dishes in the kitchen means her mother must be cooking.
I wait until she tells me where she thinks she is, then I play on it. (she does not know I am her daughter anymore) Then I build on that, to try to lead her down a different path. “You want to go home? Oh no, not now. There’s a big storm coming. Wait until tomorrow.” Or “You’re safe here. Please stay. A fallen tree is blocking the road to your house.” Or maybe “You won’t be late for school. I just heard on the radio that a water main burst on campus so classes are suspended until it’s fixed.”
I have to think fast. I realize my mother is further along than your parents but her demands to go home peaked about 2 years ago. While she was living in the same house she’d been in for 17 years. “Home” goes from being a physical location to more of a place in time. I’d try to build on the hotel notion. After all, haven’t they earned some time off from cooking, laundry and running errands?
The 30 phone calls sounds like a lot of anxiety, an issue to discuss with medical staff. Good luck to you!
Dad had free range to the Assisted Living building, which had a floor for Memory Care, but he could not go outside without one of the Staff or family with him. The building was no different than living at home. How many of us keep our front door unlocked? How about the back door? At night time, the elevator would not allow residents to go to the other floors, but the Staff had a code to use said elevator.
It is my understand when someone with dementia asks to "go home" it means their childhood home back when they had fun as a child. I recall my Mom was asking to visit her parents and siblings. Mom was 98 when she asked that. The therapeutic fibs worked.
The only time my Dad would call me was when he climbed into his time machine and went back to the 1940's. He would call to say he wasn't coming home for dinner as the meeting ran late, thus he missed the last bus. He would stay at the hotel [which was his room at memory care]. I just played along as it was easier and it didn't frighten Dad like it would if I had tried to correct him.
This is all quite a journey for us.
I can’t imagine getting 30 phone calls in a day! Geeeeeeez. Please don’t continue to answer your phone. Let the calls go to voicemail.
Check in with the staff once or twice daily if you wish while they are adjusting but don’t feel badly about taking a day off here and there. You don’t necessarily have to speak with them daily.
They haven’t been there for a very long time so give them a chance to get use to their new surroundings. Uneasiness can be expected during a transition.
Would they participate in any of the activities that are offered? Have you met the activities director to discuss encouraging them to attend any social gatherings?
Have you considered meds for them to keep calm while they are going through this transitioning period?
As for the 30 phone calls a day. That is outrageous. The staff of their memory care need to prevent them from calling you so much. Or block the number if you have to.
Do as Alva suggests. One call in the morning and one in the evening. No more than that. She's also right about you not causing the situation so you should not take the guilt for it as if you were.
Also, enlist the help of the MC staff. Talk to the administrator and see what they suggest to help your folks settle in better. Limit their access to the phone would be a start, because they're living with one foot firmly on the outside, so to speak, and making no real effort to embrace their new home. The caregivers there may be able to give them more attention to distract them from their obsession about going home.
I also suggest writing a short one-page biography of each of your parents for the staff to read so they can really get to know your parents and what they did before they lived there. I did this with my mother when she moved into both nursing homes she lived in, and I also sent it along when she'd go to the hospital or rehab. I talked a bit about where she grew up (one of her favorite subjects), how she was a first-grade teacher, an artist, and a librarian. I mentioned how many children and grandchildren she had and all our names, so they could ask about each of us.
Nothing's worse than having people who know nothing about you try to make small talk especially when you have dementia and can't make conversation well in the first place, so give the caregivers something to work with that makes your folks feel like they belong there.