Any tips or advice for dealing with so many supposedly " urgent" phone calls during our work days where we really can't be on our cell phones all the time?
I posted a week ago about my dad who was trying to negotiate going home from AL. Thanks for all the responses. I have spoken with him and told him that going home is just not possible. He has to either stay at his current AL, or we can look at other ALs. That is the only deal we can make . I spoke to management at the AL and alluded that we are looking at other ALs. There is a larger apartment available at the current AL, which they have offered to my dad, so we are planning to move him to that larger room and stay in current AL. Dad seems on board, so he will stay at current AL I think... BUT
what still continues is the multiple calls during the day. I told him sternly that when I'm at work I just can answer multiple phone calls every day from him or I'll lose my job. He now promises that he wont call so often but wants to know my work cell phone number so if its "truly an emergency" I will answer his call in that situation. I said OK, but will he truly just call in real emergencies or is he going to call that number even with "perceived urgent" issues too? He is probably at mild to moderate dementia status. Any tips or advice for dealing with so many supposedly " urgent" phone calls during our work days?
He is in AL. He has access to emergency care on the premises. He needs to use that emergency system. If it isn't an emergency he doesn't need to call you until you are off from work.
Keep rules simple. Be consistent.
" level of care needs"? I ask these questions as your father, may not remember the phone calls and hence keeps calling ( if he has some dementia or other cognitive decline happening). I would be sure to have this assessed first before doing anything else, including move into larger or different apt or even facility.
That all said, if he is deemed by PCP as cognitive appropriate, then you will need to probably consider a geriatric specialist working with him or other social services counseling to get to the bottom of his behaviors that you describe. Has he always been demanding or attention seeking? Is he grieving the move into AL and hence needs grief support to help adjust? Lots of considerations here; do not fold under his behaviors as the behaviors most likely are not going to change simply by giving him a bigger apt. Is he projecting guilt onto you and family to manipulate you? PCP , and possibly a Geriatric Specialist and or Social Services Counseling can all be helpful.
RAZ allows the caregiver control of who can call and who can be called.
RAZ allows the caregiver hours that calls are active.
RAZ allows an additional expense service to redirect 911 calls to a third party for evaluation for "true" emergencies and notifies the caregiver of emergency calls.
RAZ has GPS in the event of true emergency
plus much more.
The only reason MIL was able to have and use a phone for the entirety of her dementia was having a RAZ phone. Check out https://www.razmobility.com/ to see if this could help meet your needs with your Dad.
Do not take more than one call a day from him or one call every other day.
In fact, you should not take any of his calls for a while. You call him.
You're not alone with having a demented elder calling every five minutes with an "emeregency" or because it's "urgent". You have to ignore it. Don't answer and don't pay any attention to these calls. It's not doing him a favor if you answer all the time and play his games. He will never accept and acclimate to living in AL if he knows that you're on call for his every demand 24/7.
Call him once a day and then that's it. Don't guilt-trip yourself or beat yourself up about not taking his calls.
People have lives. They have families to support and bills to pay and jobs they have to be on.
No one can take a phone call every five minutes from a demented LO because they think every thought they have is "urgent". Or the smallest things like there's not chocolate ice cream and that's an "emergency".
Don't answer these calls from him. You call him once a day and that is enough.
You don’t have to feel guilty for the rest of your life. You aren’t guilty of anything. You may feel regret and grief, and that’s okay. But don’t torture yourself the rest of your life. Losing a parent is hard enough on its own. Would he have wanted you to carry a burden of guilt? My guess is no.
Meanwhile this constant interruption of sleep is making me sicker and weaker than I already am.
I do have a solution...but it's temporary. Our doc, who monitors hubby at the AL, got worried about ME -- physically I'm in much worse shape than hubby. Doc raised hubby's dose of Seroquel and right now I'm getting full nights' sleep. But the Seroquel dose is reaching the top and at some point I may have to hire a helper to stay all night with him -- a situation we can't afford for very long.
Other than meds I don't have experience with solutions. I know that his panics are real to him, a nightmarish state in which he controls nothing and understands nothing. Suggestions or demands won't work. I think you need to think about changing the phone connection as some have suggested so that he truly can't get through and you can call him every evening. But there are also problems the AL facility may have with handling constant calls...ALs all around the country are short-staffed. It is important to understand the dark world he lives in, and know that he suffers, but you can't throw your own health or professional situation into the fire too. That is a problem with dementias of various kinds: the patient is truly frightened or angry or unable to judge situations -- a terrible state to be in; but the loved one in charge is making the situation worse if he/she ruins his/her life or health trying to make the patient's life more pleasant.
My solution for my own future (if I live longer than my husband, which is not a given) is to use a stash of money to go to Zürich if I become aware of first signs of dementia. It's a horrible, terrifying world to live in. I love my husband so much...seeing his fear and the panics breaks my heart every time and I cry and can't help answering the phone. When the meds stop working I can't imagine what his world will be like. A few weeks ago hubby was more lucid than usual and said he wished he'd taken advantage of our state's right-to-die laws. He can't do it now because you have to be "in your right mind" to request this. But he's aware of his own constant pain. It doesn't look like physical agony but it's just as awful.
you raise some important points here. Glad you are now getting better sleep.
Some of these aspects do apply to my dad. To him, I think he does feel that the issues he is calling for are "urgent" if not "emergency". They provoke anxiety and to him that makes it "urgent". I have repeatedly said to call the call button. However at this AL, it could be up to 20 mins before someone comes by. When he is perceiving something as urgent and anxiety provoking, he seems to not be able to wait even 20 mins. And I have tracked this - what is a real 20 mins he describes as "it takes them 1 hour to come". I have looked into other, seemingly nicer ALs, but I'm not sure if "nicer" translates to faster response time. When on a tour, they never seem to answer about data like exact response time or actual staff to resident ratios , or they just give out some marketing type spiel about how they " exceed" standards.... its difficult...
There is supposed to be staff at the AL to handle the "emergencies". Most places couldn't care less though.
razmobility.com
Realize that with dementia, he likely cannot make 'promises,' that he can keep. He will say this to appease you.
1ST TO DO - BEFORE CALLING YOU:
- As an/other/s said here, if any emergency he can alert staff. There should be or may be an alert button in his room at facility that he can use anytime.
- He needs to 'get used' to staff being his support, be as comfortable with them as he is with you - to degrees. Of course, you are his family. The relationships are different. It is a matter of him feeling trusting and emotional connection to staff.
GET HIM A JOURNAL ____________________
* Ask him to keep a journal of his thoughts as you REALLY WANT TO KNOW. It will be his 'special' book to share with you.
- If he is able, ask him to write down his thoughts, questions, needs to discuss with you at a later time. His writing do not need to make sense. He could even draw pictures (color pencils?). What this will potentially do:
- give him boundaries and guidelines (and a way to 'shift' from his automatic desire / behavior to call you to picking up his journal and writing/drawing).
- a 'time out,' - an opportunity for him to get his feelings out writing and calm down while re-focusing / easing his obsessive behavior.
- Tell him that you REALLY WANT TO KNOW how he feels by using a personal journey 'just for the two of you.' It will be his 'special' book to share with you.
VOLUNTEERS________________
Lastly, are you able to arrange for volunteers to visit him?
- There are organzations that offer these services.
- Call local high school or college (contact dept heads: nursing, geriatrics, counseling, social worker) and ask if they have a volunteer - or perhaps someone you could pay for an hour visit.
- The more people available to 'befriend' him, the most calmer and safe he will feel (that is the goal).
Realize he is scared and needs reassurance that you love him and are there for him. He will not 'want to' abide by boundaries or be able to - (i.e., wants your work cell / phone number) as his fear/dementia override this logic.
Perhaps if too severe, you get another cell phone number just for him.
This isn't a great solution although it may relieve you of ongoing unnecessary calls.
* Do keep your word - when you set a boundary, keep it. Giving in to him, changing your 'rules/boundaries' will confuse him and he will continue to do what he wants (and thinks what will work).
Gena / Touch Matters
All of this sounds very nice but in reality none of it is going to achieve anything. If the guy has dementia he's not going to write his feelings down in a journal.
An old person isn't going to do this when they don't have dementia either.
Sure, he needs reasssurance and everything, but people have lives. They cannot take a call from an elderly LO every five minutes because they need reassurance. The facility staff is supposed to handle the nonsense "emergencies".
It doesn't do a person a favor when someone takes their calls every five minutes to reassure them because when you do this it prevents the person from settling in. They will never acclimate and will never accept that the AL is their permanent home if someone on the outside answers every call.
You're spot on about getting him a volunteer to spend time with him or even take him out.
If there's no one to do it for free, a paid companion a few hours a week could work wonders. I did a bit of companion work back in the day for a few people who were in AL. They loved getting out and just having someone visiting.
Easier said than done. It’s a difficult transition for both of you.
Another thing—my mom moved to a lovely national chain ALF with her own apartment a couple years ago. Brother and I got calls all the time. The place “kicked her out” after a year-ish bc they could not “meet her needs.” They suggested a smaller facility where she could get more attention.
The larger place—200-ish apartments was beautiful. Like living in a resort! But she was not capable of making it there bc of her cognitive decline. The new place, where she has been for one year this Christmas, has 26 beds. She has only a small room and her own bathroom (that was a no negotiable item.) There is no dining room with a menu and chandelier. No pool and hot tub or van for trips—which she could not use anyway. But she gets the attention she needs. I do not get any calls. (Largely bc mum cannot remember how to use Alexa for that.) But, it is working out pretty well.
My point is that I did not understand the limits of ALF care. What I saw from experience is they are great for folks without cognitive decline who just need companionship, meals and cleaning. For folks who need help functioning, they don’t offer that. As soon as the resident needs more, the ALF is declining to take them back from a hospital visit.
If your dad has dementia, things will decline. While you are considering moving him, evaluate whether this place will work for him longterm. Ask them if they keep folks thru the end of life who experience significant cognitive decline.
The admissions person at my mom’s fancy ALF explained to me that the pool, dining room and nice apartment with a screened balcony made me feel better but it was of no value to my mom. Which was true. What matters to my mom is feeling she has someone at her beck and call. The current situation with a single room, door usually open, near care staff station, better meets her needs.
None of it is easy. What we all wish for is to turn the clock back. But that is not possible. It’s a learning curve to see what our current reality is and how to best work within it.
Wishing you peace on this journey.
What might work now is unlikely to work later, and it's better for him to have your private number and leave you some degree of control over the calls.
If there is a true emergency, the AL staff should call you.
let calls go to voicemail.
If it is a TRUE emergency the facility will call you and it will come up on your phone as "Merry Meadow".
Your dad has dementia. For this reason he can not comprehend the instructions to not call you at work or during work hours, or even call only in an emergency....cuz everything is an emergency.
She has to answer the first call of the day and stop answering calls after that .
With dementia, we CAN'T do what they want.
THEY are the children now.
We must make decisions FOR them.
Just as you wouldn't let your toddler run the show, you NO LONGER can let your father run his.
Or YOURS..
Put your Dad's calls on "Hide Notifications".
Call him no more than once a day.
Save YOUR sanity.
Best wishes to you.
Your work number is for work, not his calls. Do not give him that number. If he has it, contact your company for a new phone number.
You are applying YOUR rules to HIS dementia....ie: he promised me. A demented person is incapable of making or keeping promises, period.
His idea of an emergency is the kitchen ran out of cinnamon bread, while you're thinking his arm is hanging off by a thread.
The AL staff WILL call you in the event of a true emergency. Trust me on that.
You say, "Dad seems on board, so he will stay at current AL I think... BUT"
You are allowing a demented man to run the show here. Soon he may think he's living in a hotel and his caregivers take him and his belongings to a new hotel every night, like my mother did. Yet you're ready to spring into action at the first sign he wants to move. Or get a nicer room. Or go to a "better" AL that may not have his favorite lunch the lousy AL had, or a bingo caller who he dislikes. Then what?
YOU are in charge now because dad is no longer in possession of his full mind. YOU call the shots about where he lives and how many calls a day you take from him because otherwise, YOU will need to take Valium along with an antidepressant to manage your own life.
Dementia is a black hole. You can choose to jump down into it with your father or take control of the situation for BOTH of you. There was a time when you took all of dad's wishes into consideration before making any decisions because that's what good sons do. Now things have changed, however, and dad needs something different from you. He needs you to be the adult who makes the wise decisions for him because he's lost that capacity now, sadly, and doesn't know WHAT he wants or what's best for him. In a way, he's the son now and you're the dad; the roles have been reversed. Elders with cognitive impairment have lots of trouble making decisions. The fewer the better. That's where you can be most useful.....to narrow down his choices dramatically FOR him.
When we'd go to a restaurant with mom, we had the choice of sitting there for an hour while she'd sweat bullets over what to order from the menu. So I'd look it over and say mom, what would you like, the combo plate or the fettuccine with meatballs? Then she'd calm down and pick one. Their brains just CANNOT process a bunch of info anymore.
Get the book, Understanding the Dementia Experience by by Jennifer Ghent-Fuller, on Amazon. Learn all you can about dad's condition so you can be most useful to him, and to yourself throughout this journey that progressively worsens.
Good luck.
Simple example: After I brought to the attention of the staff that my friend was wetting her pants, and I went out and bought Depends for her -- it still took weeks (weeks!) before they used them and reached out to her son to supply them regularly. Not only did the staff not care about my friend, they didn't give proper attention to the furniture when it became soiled. In addition, my friend's room has a slider to the outdoors, but there is no screen and to even open the door takes the strength of Sampson. Though I have reported this multiple times, they do nothing. I could give more examples. :-|
Another example: A 103 year old completely lucid resident of a "high end" ALF told me all she wanted was a pork chop once in a while. When I suggested she bring this to the attention of the Administrator, she said she was afraid to do so, as her experience with making such requests (viewed as "complaints" by TPTB) ended up with some kind of retaliation.
He just cannot help it, he has dementia. But you need to keep your job. I don’t think he gets that part.
Good luck to you.
He wants you to be his trained monkey. He pushes the button, you pick up the phone. He pushes the button, he pushes the button, he pushes the button and you, by now, realize that you're being played.
If he has an emergency, someone else will call you. Not him.
Time to ignore dad. You're not his monkey and you need to keep your job. Don't give him any more contact info than he already has. Don't trust what he says he'll do or not do. Don't give in to this over-entitled spoiled brat of a parent - and don't ever forget he has dementia. He's not the same now. He will never be the same now. And that's that.
I wish you luck.