My husband was diagnosed with Alzheimer's about 6 years ago. He is physically fine, but his short term memory is gone and he can't make decisions on his own. I've just about read all that I can about this disease and have also watched videos on it. I've learned what the triggers are and what not to say or do to aggravate or get him angry. I am his ole caregiver. Now my question is friends and or family have been told time and time again how to not annoy him or get him all riled up, but they do it anyway. In particular he has one brother that will call every single day and interrupt my schedule with my husband because I like to have a routine. I have told him time and time again but he won't listen. Then there is a friend who told him about a death of someone that wasn't necessary for my husband to know this information and then I had to deal with the aftetmath. I'm at my wits end with these people. I suffer from flare ups of Epstein Barr and all this stress has gotten to me. Any help out there is much appreciated.
I guess you can't keep telling people things that they refuse to listen to. The brother calling - have you told him when he "can" call? When the phone rings, you don't have to answer it. If you're busy with something important that shouldn't be interrupted, let it ring.
Annoying that someone got him upset about a death. Hopefully he has forgotten about it and moved on.
I would try to accept that you aren't going to control these people to help keep your stress level under control.
Good luck.
The idiot who mentioned a death probably has no understanding of how repetitively destructive it can be. Send him a video that explains it, or simply tell him he isn't allowed to bring up any type of drama. If he does, he's out.
The circle of people who have access will narrow a great deal as you protect his and your own mental well being. Because most people have NO idea of the trauma that is caregiving, nor the trauma of having a brain that is dying.
he brought him home, he brought him to a strangers house and my husband was trying to enter that home with his key. Thank God he did not
leave my husband there by himself, he would have gotten lost. I reached my boiling point this time around with the death comment so I blocked him.
And be rude, if necessary. Yhey are blockheads and don't care.
Not really friends,
As for your husband's brother - when he keeps calling at these inconvenient times calls, do not respond.
You don't have to admit anyone into your house who does not respect your wishes, so out they go.
You are protecting your husband.
SAY NO. “No, he can’t have visitors today”. “No, he isn’t able to come to the phone”. “Sorry, not today”. No. NO!
YOU have RIGHTS as a caregiver in a difficult and taxing situation. HE has RIGHTS as the victim of a progressive, difficult illness.
If you see benefits, both for you and for husband, emerging from a peaceful, structured schedule, ENFORCE THAT.
Why on earth would you not feel as you do? Kudos for what you are able to do now!
"We have a set routine and it is the only way to keep him calm. I will ONLY answer the phone between the hours of x and y." And then stick to it.
If you have a land line, turn off the ringer during the downtime and let the answering machine get it. If you have a cell, turn off the ringer.
As far as the IDIOT who took him to the ballgame, keep him blocked.
Since they cannot control their own behaviors, you have to control their access to your husband.
I do better having some structure. I can't do chaos. I can do interruptions when I am trying to get something done. So as suggested, turn down the ringer on the landline. Out cells on "Do Not Disturb". When there are complaints you tell these people "You have no idea what I go thru on a daily bases caring for DH and trying to keep my own health in check. I need structure to do the job.
My daughter had to work from home. She told everyone, do not call between the hrs of 9 to 5. If her front door was shut, she was working.
Don't answer the phone until you are ready to .
You can turn off the ringer or just let the phone go to voicemail.
If anyone starts to upset your husband during a visit you can say, "I'm sorry but this conversation is going to end" If it doesn't they you can tell the visitor that they can leave.
If someone is on the phone with your husband if you see him getting upset or confused the call can end.
I've had this problem too. Rude Aunt would come over and talk talk talk to dad about matters he couldn't remember. She wouldn't admit he had dementia. So she never learned how to communicate with him as he deteriorated. All this did was stir up the household. Also, the people who talk about family members or friends that LO has forgotten, well, they're plain annoying. They think it's a way to keep connected, but all it does is exasperate me and wear out LO.
I hope it gets better for you.
Also it sounds like it is time for you to speak with the PCP and get husband assessed for " level of care needs" and get a senior case mgr , usually a licensed social worker to help you look at options for his care and your well being. Home health services, hospice may be options. Or perhaps look at facility placement options for your husband.
See your PCP and get input on your own health and how to best care for yourself. Enough is enough. Time for help and to call in the calvary.
My mom was being harrassed by phone scammers. She simply would NOT stop picking up the phone when it rang, as if it was some sort of visceral reaction. Funny, after I moved her and no one was answering the phone, the calls slowly stopped.
No one has access to you and your time unless you allow them. You are in the driver's seat on this.
brother a few months back if he would come over
a couple of days a week to stay with my husband.
I offered to pay him and he declined saying look into Medicare or something else. Mind you he hasn't seen this one and only brother left, since
before the pandemic. He calls but does not offer help so I don't expect anything from him or any
other family members. His daughter lives in Israel.
Calls only for fathers day or his birthday, never in between. I don't expect anything from her either.
For his birthday this year my daughter is going to pick us up to treat him to bowling for his birthday. My family always calls to see how I am and how my
husband is . Never his family. I am used to it now
so I don't expect anything from them. From all the
questions and answers on this forum we all seem to be doing it on our own. Thank you for listening.
I have nosy family members who only want to judge & criticize so now I quit oversharing. They cannot comment if they know nothing, right? Of course these same people offer no real help. They think their 15 minute visits tell them all they need to know.
I love routines and I am sure your husband enjoys his routine. Do not answer the phone, let them leave a message. You can return the call at your convenience.
For the visitors that insist on sharing upsetting news .....block them from visiting for a while.
To give them the benefit of the doubt, do ask them if they understand his condition and what dementia is / the type he has and how he is negatively activated with certain types of communications / content. They may not know ... as many people / family+friends) do not, unless they are smack in it and then there is a major learning curve.
If they do not abide by your wishes, perhaps have your phone number changed.
This may sound very extreme, however if family/friends will not / do not listen, you need to make adjustments that work for YOU and your husband.
For some reason these folks are not taking you seriously.
You do what you have to do. This is a difficult situation for both of you and you need to do whatever works for you and keeps your husband as calm as possible.
Do read / research Teepa Snow's website.
Gena / Touch Matters
not trigger him, but they really don't listen, and at
sometimes have laughed about it. So I just reached
my boiling point a couple of weeks ago with the
friend that told him about a death and his brother
I told him that there will be times when I disconnect
the phone in order to get some rest myself or that
I don't get interrupted while I fix my husband a meal or whatever else I need to do. So he can also
have some time to watch his favorite shows or just
do his puzzles in peace. It's amazing to me how
someone could just laugh this off but to me it all
boils down to ignorance, that is why I just don't
deal with them anymore. The friend that I blocked
recently was the one who took him to a ball game
last year and then brought him to the wrong house
coming home. When he brought him upstairs to
use my bathroom, I don't want to mention the
disgusting way he left my bathroom. I'm done
with all of them because I don't need that extra
stress in my life. I suffer from chronic Epstein Barr
and I have severe spondylosis. I have enough on
my plate. Thank you for listening. I do appreciate it.