Follow
Share

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.

This question has been closed for answers. Ask a New Question.
Sorry for your situation. People can be so ignorant about dementia. Unless they are living it they have NO idea what it is like to care for your husband. Friends and family (at least my mom's!) are in denial that their friend/relative has dementia. From their limited contact, often just a phone call, they can have no way to understand what's really going on and are happy in their make believe world.

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.
Helpful Answer (8)
Report

There is no requirement to answer a phone. So, do not answer it during a time that is inconvenient. Turn the ringer off if you need to.
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.
Helpful Answer (12)
Report
Cheeky79 Jul 2023
Thank you so much for your input. The friend who told him about the death is also the friend who brought him to a baseball game last year and when
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.
(8)
Report
See 1 more reply
If you have asked nicely to behave in a certain way and family and friends do not comply with your request I would tell them in no uncertain terms that they are no longer welcome in your house.
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.
Helpful Answer (5)
Report

Let this be much MUCH easier than it’s been for you both.

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!
Helpful Answer (5)
Report

Tell his brother -
"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.
Helpful Answer (6)
Report

I think what you want to hear is that its OK to cut off these people. It is. And, I think you have done everything you can to explain what your DH needs and what you need to care for him.

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.
Helpful Answer (8)
Report
CaringinVA Aug 2023
Well said, JoAnn. ~CaringinVA, 8/6/23, 1:36pm est
(2)
Report
Grandma1954 July 28, 2023 10:38 am.
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.
Helpful Answer (9)
Report

Would these annoying people be willing to learn more about your husband's condition and how best to communicate with him? That way the instruction wouldn't all be coming from you.

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.
Helpful Answer (7)
Report

I think most of us have at least one family member or friend who is overly “helpful.” Most people would respect your boundaries and stop when confronted, but for those who do not understand the meaning of NO, you need to block them from entering in your life. Let calls go to voicemail, set boundaries at the door if they show up unannounced, or stop the conversation if it enters unauthorized territory. I once stopped my husband’s kids for changing his routine by telling them directly that I am not controlling but I need to be in control of the situation. I am the primary giver, so I call the shots. The power is yours to use.
Helpful Answer (13)
Report

Turn the phone off , let messages be left and return the calls if, when you decide is best. Tell " the family, friends you will be doing this so that you can best care for husband. Set clear visit days,times; no drop ins. You are absolutely correct about the needed schedule especially with dementia pts.
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.
Helpful Answer (2)
Report

Firstly I think it’s great that there are people who are still connecting with him and you. Most run away. My husbands family did nothing but abuse me and blame me. Put the ringtone down to silent and let people leave messages. Same with mobile. Learn techniques for being assertive without being aggressive. Get yourself ready for respite care then placement. 6 yrs is a long time for you to be doing this.
Helpful Answer (1)
Report

I know where you are coming from - explain he has a illness or don’t pick up the phone ☎️
Helpful Answer (1)
Report

Cheeky79: You'll have to set the boundaries again by not answering the phone when the brother and the friends call as these individuals are not listening to your initial request.
Helpful Answer (3)
Report

Stop answering the phone and the doorbell unless you are expecting someone.

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.
Helpful Answer (1)
Report

I know this is not directly addressing your post but I am concerned about your statement that you are your husband's sole caregiver. With a dementia patient, that's not a good long term strategy. You need some time off - even if it's just a couple of hours a week - and he needs to become accustomed to being cared for by others. What's the plan if you need minor surgery? Or are involved in an auto accident? I encourage you to investigate Adult Day Care and respite care (maybe using the Area Agency on Aging as a resource) and to develop a plan for his care if you were unavailable for a couple of days. Pre-planning will take the "emergency" feel out of a surprise event.
Helpful Answer (2)
Report
Cheeky79 Aug 2023
Hi, thank you for your input. I actually asked his
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.
(3)
Report
First if all you need some help taking care of your husband. One person can only do so much. It is imperative for you to rest and take care of yourself.

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.
Helpful Answer (1)
Report

It sounds like you need to control who calls and who your husband speaks to.

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
Helpful Answer (2)
Report
Cheeky79 Aug 2023
I have on numerous occasions told them to please
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.
(2)
Report
Oh. And you can block numbers when they call. That is likely better than changing your phone number ! Good points people mentioned here/below. Gena
Helpful Answer (1)
Report

Get caller ID on your phone so you don't need to answer any phone calls from people you don't want to talk to. Let to call go to voice mail and then delete it. Works for me.
Helpful Answer (1)
Report

Get caller ID on your phone so you don't need to answer any phone calls from people you don't want to talk to. Let to call go to voice mail and then delete it. Works for me.
Helpful Answer (2)
Report

Limit exposure to people who will not abide with your plan to care for your husband. The "brother who doesn't get it" calls should be allowed to go to voicemail. Return the calls at a time that is better for you and your spouse. If "those who don't get it" drop by unannounced, let them know that "this is not a good time" and "please visit us by making an appointment or coming back at _____ time." Consider that your home is your healthcare facility and visiting hours and rules should be abided by.
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter