My ILs live with us in our home. FIL has Alz which seems to be escalating daily. He has now placed multiple calls telling people things are “very bad”, “no one is taking care of them” DH has “turned against them” (because after years of caring for them we finally were so exhausted we had to have a service come in and help us), etc. I am home with them, my Dh has had to be home more with them AND we have a wonderful nursing service come in. They have more care than they could want or need. The calls don’t make a ton of sense but sound very pathetic and sad. Then, he hangs up the phone and his entire personality changes. He says that he is going to show us by getting us in trouble.

We are currently working to get them into the nursing home they WANTED to go to and are following their wishes. But this means we may have months before they are safely in care. We have a phone line in their rooms, and short of what we just heard, would never have considered taking it away. Right now, though, we are looking for ANY kind of experience/advice from someone who has been there or done that.

Thanks so much. This is my first post, but I have spent many hours on this site educating myself on elder care and dementia over the years. It is truly a unique community:)

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Windy, Hugger and ch... Thanks for sharing your stories.

We have spent the last few days visiting and researching and talking to family. I discovered a really good memory care facility here. I have learned that what “memory care” means varies widely across the industry. We are looking at a move in as soon as possible.

I understand so much that in control personality. That is what we are dealing with. The attaching to my mil suddenly because clear to me last night. He is actually shadowing her. He has done this to me and to DH alternately. It never would have crossed my mind that someone with Alz would shadow someone else with dementia who is more frail than they are. I don’t think I have ever heard of that in all of the reading that I have done over the years. It also explains the aggression when she seeks to set any kind of boundary at all (which she was bad at on a good day:)

I am going to post a different thread on this topic later, I think.

We have made the decision to have no phone in the NH:) Thanks so much to all who answered.
Helpful Answer (2)

I'm sorry the facility won't take your FIL - when that has been the plan that is so hard to switch gears.

A similar thing happened with my Mom. We had the perfect AL place chosen from the year before. At the time there was no waitlist, and she didn't want to put her name down for the future because she didn't like thinking ahead to actually needing it. She deteriorated suddenly so she really needed to move somewhere with more help, and at the same time we found out a long wait list had developed. Our plan was no longer good.

What really helped us was using a social worked recommended by the AL home with the waitlist. She knew all the facilities in the areas, the pros and cons, etc. She was able to narrow down choices and we ended up finding a really good alternative. Her expertise saved us so much time and angst. The social worker was with a local firm, and was paid by the facilities, so it didn't cost us any money. Which makes sense because she saves them a lot of time on their end.

Good luck finding a good solution.
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499HopeFloats -

Yes, we are experiencing this with our 87 yo mother. She is home alone during the day and is constantly dialing the phone. She goes into "poor me/pity party mode" and tells everyone she is so put out with us or she cannot get her children to do ANYTHING.

My dear brother works all day and stays with her at night. He pays her bills, does yard work, pays her taxes, and the rest of us contribute to anything else-grocery, pharmacy, lunches/dinner out, doctor appointments, labwork, etc. She has everything she needs, yet we do NOTHING.

Over the past 5 years, her dementia has progressed to a point where she has become mean and nasty. She lashes out and acts inappropriately in public.

We have dealt with solicitors, scammers, and Home Shopping Network [she bought 12 wallets - 1 in each color one Christmas]. Yet, she refuses to let the phone roll to voice mail. She insists on picking up the phone each and every time.

The doctor told her last year she could no longer drive. She refused to listen and insists she can still drive to her hairdresser.

Our mother is the most hard headed woman. Her way or the highway. She is a great actress and everyone thinks she is such a nice lady. If only they knew what goes on behind closed doors.

I applaud you and your husband for caring for his parents for so long. I hope you are able to take a break and enjoy each other and your family. Good Luck and Bless you!
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Hope, my story is similar. My dad began developing dementia about 8 years ago, getting pretty bad this past fall. Mom has not reasoned well for a while, phone scams, don’t need any help etc, but she handled Dad fairly well for a long time.

Now, after several bad falls mom’s dementia is on par with Dads. To spend a few minutes with them is just crazy town. They tend to feed off each other’s delusions.

Why is the facility refusing your FIL? I was very lucky in finding the AL my folks are in. They call themselves Assisted Living But in reality are providing my mom with skilled nursing care and Dad with memory care. They have a real memory care unit as well. My dad will end up there pretty soon I think because he’s still so mobile. Staff has to chase him around all day. Always looking for his car.

It seems for now, they are better being together but I’m beginning to wonder if that will last. The tag team crazy town stuff may become too stressful, not worth the effort.

It’s clear to me your in laws need to be in care.  Remember, it’s not just for them.  It’s just as much for you and your family.  I’m on my own with my folks.  They’ve about killed me the last few years. All our lives are so much better since they went into care. Start looking at places now.  You may not be able to keep them together. 

And BTW, last time I visited, Dad gave me a big hug when I left.  Called to check on them the next day and nurse told me they’d both been going off on how I had stolen them blind!  Oh well........
Helpful Answer (3)

Oh and since there are 2 of them, they will reinforce each other’s stories, even if they have no idea what the other is talking about. We have listened to Dad coach Mom to say something about a situation she wasn’t even present for... since she has dementia, she just agrees. That is what she has always done. It would be very funny to listen to if it was just a silly story and not an attack on our family.
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Thanks for the responses.
Just to clarify, they are in our home, not in an NH or ALF. We actually just got a call today that the facility we have been looking at will likely not even take FIL... after the crazy that has been this morning, that felt like someone knocked all of the air out of us. That move has been a lifeline and now we may need to start over.

I probably sound like a loon, and I can’t believe that I am sharing this with strangers over the Internet. But, we have been surprised at how difficult it is for others to understand what caring for dementia 24-7 in your own home is like. I think people have a Hallmark channel image in their heads, especially when the people were wonderful pre-dementia. (And they were, they were our best friends. I don’t really have family and they welcomed me into theirs with open arms. That’s why we did this in the first place and have been doing it for almost 8 years.)

But, the inability to see outside of self, attacks, anger, and manipulations are rocking our home and have been for a very long time. We have tried to roll with it, but we have 2 boys who are amazing young men who we would like to enjoy before they leave the nest. My DH and I actually like each other and would like to enjoy our marriage. We both feel like we have become very crummy friends to the people in our lives. Everything revolves around the illness. And now, we feel vulnerable because the fabrications aren’t just innocent anymore. We are already giving past our limit... we don’t need visits from social services because Dad tells a telemarketer that “things are really bad, we need help.” (While I am standing there getting Mom dressed?!)

This feels awful and we have each other and outside help. I truly do not know what people do when that is not an option.

I have to laugh with whoever talked about the “good deal” of “all her belongings”. We are hearing that too. As backward as it sounds, it is nice to know that others do understand, lol. Although I don’t wish this on anyone.

We did call a few people and others are calling us to let us know. Luckily, we know many of the same people. We are more worried because we feel like our home life is vulnerable to baseless threats, if that makes sense. I will keep checking back for answers.
Helpful Answer (1)

After awhile they won’t be able to dial out.
My aunt still answers but hasn’t dialed out in over a year.

It’s a shame to take away their ability to communicate even though it’s at your husbands expense. If he isnt getting into financial trouble like Windy’s folks I wouldn’t take it away.

I’ve learned to just back up and look at the big picture. Each stage passes. Sometimes it’s very embarrassing as to what will come out of their mouths. And hurtful. We don’t all arrive at a perfect understanding of the ravages of this disease at the same time or sometimes ever.  As long as it’s just my pride I can take it. The others will learn soon enough that they were listening to a person with dementia.

My aunt used to tell everyone she had made me a deal I couldn’t refuse. When I asked her what that was, she said all her belongings. Oh my. But that was early on.

Another time she invited extended family to move in while they had some repairs done AND THEY DID. I almost lost my care takers over that one.

I like Veronica’s suggestion. It might seem like a bit of trouble but if FIL is on the phone talking at least he is occupied for the moment.

There will be problems regardless of how you handle this one.
One will pass and another appears.

Most likely the folks on the other end could block or ignore the calls if they are too frequent or disturbing.

Look at it as an outlet for him.
If someone calls you about it be prepared to thank them for helping your FIL. Everyone needs an outlet, even FIL. If you have asked for the assessment you will have the greater community notified that your inlaws are ill.

No doubt the two of you really could use a break and if the assessment comes out that they should be placed sooner than the chosen NH has space then so be it.

Welcome to the forum and be sure to let us know how things are going.
Helpful Answer (0)

My mom has dementia and was calling me at all hours of the day and night. At least 50 calls a day! Once I was able to place her in a memory care unit, I did not bring her phone. The staff kept her busy enough so she forgot about the phone.

I wish you the best!
Helpful Answer (2)

When my Dad started using the phone as the tv remote control my Mum put it out of his reach. We had a couple of phone calls prior to this with just heavy breathing and tv sounds. Dashed over there & he was quite happily eating his dinner, not a care in the world!!!
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When my mom was placed in a NH, she had a phone. She was still enough “with it” to use one. But, then “it” started. She had sundowning, which meant in the evening, she’d become very agitated. She’d call me at all hours of the night and then sleep for me was impossible. She also thought, when she got a hang-up call, “some man” was stalking her. I had to pull her phone. I assured her that the nurses said she could use the phone at their station anytime and they’d even dial for her. Did I feel guilty? Sure. It was her last vestige of independence. But it was necessary.
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Yes, my family went through this, my poor Mother sunk to a depressed state, wasn’t eating, wasn’t bathing, and stayed up all night and slept all day. She had barricaded herself into a bedroom that had a telephone extension and a cell phone.

This was a few weeks before we got mom in the hospital to have her mental capacity assessed and a geriatric psychiatrist to diagnosis her.

I noticed mom would go Wild after she talked to my uncle, her little brother. My dad listened in on the extension (I don’t approve of that) but we learned a lot. My uncle was after some land that has been in the family a LONG time.

At the time everyone was baffled about the land, we hadn’t seen the deed to the land. My mom holds that deed. My uncle hung around and hovered like a vulture. I wasn’t too upset about it, we had had mom assessed and her meds were adjusted and she was liking her new ALF and not depression and her dementia evened out. Then near Christmas I hear uncle is still hanging around and coming by to visit mom @ALF. Uncle never lingers past Thanksgiving, he’s married to a Spainiard and has lived since the 1960 in Spain.

I don’t know who will come out with the land. And mom is pretty out of it and then almost herself at other times. But what I decided was seeing uncle made her happy so I really cannot interfere with them talking on the phone.

I try to do what’s right!
Helpful Answer (0)

If you know the names and numbers of the people he is calling could you call them and explain the situation just as you have to us.
ask them to continue to accept his calls and just sympathize with him rather than taking the attitude of that can't be true. i don't think I would go as far as taking the phone away unless he starts calling 911 and making accusations. it might be worth talking to elder care services and see if they will visit and make an evaluation.
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I finally got my folks in care about 3 months ago. Amoung many other issues in trying to keep them home the phone was a big problem. In our case it was the endless charities and scams. Not to mention my mom struggling to get to the phone 20 times a day, trying to answer all these calls and falling. I caught a couple of major scams just in time on 3 ocassions.

They are in an assisted living facility, together in a small room. Most residents have some level of dementia. My folks both have moderate dementia. I did not have a phone hooked up in their room. It would just be a repeat of the problems we had at home. Mom squawks a little about WHY DONT I HAVE A PHONE! But I just tell her the phone guy hasn’t got to it yet.

I talk to staff about every day and they can take a cordless phone to my folks. BTW, I’m 3 states away.

This is a common issue. You’ll get lots of responses. Good luck.
Helpful Answer (3)

Maybe the wisest thing would be to either take away the phone entirely or have the people in AL or NH limit the phone calls.
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