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My FIL, dx with dementia 7 years ago, has been living with us for about 9 months now. His last dementia test he scored 5/30 and he has severe macular degeneration.


His care was very manageable until the last few weeks. My husband and I had decided what behaviors would trigger a move to MC and I believe we are there. No UTI or other physical causes.


He has had a skin picking behavior for the entire time he has been here and earlier he was ok with us reminding him to stop, putting lotion and neosporin on the sores, clipping his nails, but he is really fighting it now. Plus, it is non-stop now. I have tried leaving it alone, but he is making so many sores. If we put on a bandage like liquid skin or tegraderm, he rubs his face so hard it is bruising.


Also, he did not know who I was the other day. He acts like he doesn’t know who I am more and more and seems leery of me.


Up until last week he was walking our dog. It was nice, and the dog would always pull him back home. But the dog doesn’t want to walk with him anymore. The last time he walked him, I noticed the poor dog was laying down and being dragged by my FIL. That was how much the dog didn’t want to walk. My FIL hollered at me that it was my fault, (his thinking was bizarre) he was very angry at me and the dog. I’ve been keeping the dogs away from him since.


He still walks but it is more up and down the driveway then comes back and sits on the curb for hours.


He has been okay with taking his phone (it just has 3 buttons to dial his kids, me and 911), it also has GPS. I always makes sure he has it. Today, he got very angry when I handed it to him.


Then later in the afternoon, he tried to go out when I was napping. I had the door deadbolted so he wouldn’t go out without my knowing, and he was screaming at me that it was locked. I opened it for him, and he said he was just going to sit on the porch, but he started up the street, I started to follow but it started raining and he came back.


I believe he is a flight risk at this point, he doesn’t seem to know who I am, doesn’t want me anywhere near, and avoids me, accuses me of taking things, like accusing me of putting the wrong clothes in his drawers, accuses me of getting his meds wrong (all we did was add Claritin to his morning meds). When DH comes home from work he is not doing these things, he is happy and conversational with DH and becomes sullen and pouts when I come in the room. Fortunately for me, my husband and son have both seen him lash out at me so they what is happening.


He treated my MIL’s caregiver the same way when she was dealing with cancer and chemo, he really treated her badly, but my MIL loved her and she took wonderful care of both of them, even though she was mainly there for my MIL.


I believe it is time. He can still handle his toileting, bathing, grooming and such (if we set his clothes out). DH seems to agree but hasn’t made any moves forward in placement. I have heart issues and this is becoming a little more than I can handle.


We have picked out an excellent memory care place, just a few miles away. They have a “socially distant” outside BBQ picnic there this weekend and I was so hoping that we could take my FIL there to at least see the place. They have a lovely, safe courtyard. DH doesn’t want to go.


So, how do I manage this in the meantime? DH does not want me to stop him from walking, I cannot follow him around all day outside, because of my own health issues. He spent a total of 6 hours outside roaming today - got mad when I took him some water. This is not sustainable. His downhill progression over these past few weeks is scary.


I don’t know what to do to keep him safe. I have talked to DH and he says it may be a month or two before he’s ready to place him, he really wants him to go to my BILs house a week at the end of May so they will see his behaviors. I don’t know how we will make it that long. He refuses to consider a daytime caregiver/sitter until he can be placed.

Your DH is dragging his heels b/c he doesn't WANT the situation the way it is, AND he can't change or fix it. Using the excuse of 'a couple of months' is just that..an excuse.

Wow, how many times we went down the road with my DH's dad, knowing he needed 24/7 care and DH and his sister and brother waffling back and forth. Drove me crazy, b/c the 'obvious' CG was ME....and that was completely unfair and not right. It was a bad time in my life, kids still home, my own health a little precarious, but FIL's care took precedent.

NOBODY wanted to be the 'bad guy'....so nobody was. He finally passed in the hospital, much to DH and SIL's shock. (If they had been listening to the doctor, they would have known FIL had very little time left)---

I think you should take a week off--go somewhere-anywhere and leave DH 100% in charge of his father.

I imagine a quicker timeline would then be established. As long as I was running out to dad's 3xs a day and cleaning, doing dr runs and ER runs and feeding him and picking up his meds---everybody was quiet and happy.

As long as you are willing to shore up this CG dynamic, nothing will change. And dad will never be moved to a better place for his care.
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Lilfarmer67 Apr 9, 2021
Thank you for understanding and it is very possible that is what is going on - no one wants to be the bad guy.

I’m sorry you had to go through that as well. I’ve gotten some good suggestions here about putting my foot down and the best way to handle it.
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I have stopped bouncing off the walls and saying rude things now -

Your husband is more concerned to convince other family members of the wisdom and correctness of his decision than he is to make the dam' decision. Honestly! - I could box his ears.

Is there someone you could go and stay with for a week?
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Lilfarmer67 Apr 9, 2021
Yes, I know what you mean. He wants his brother on board. Both of them have been talking that the time is coming for placement since January. Neither of them are very good at making decisions on the spot.

I think DH’s biggest issue is maybe he thought the progression would be slower, and not as quick as it has been in the past few weeks

I could go stay in our camper if it comes to that. We will see how this weekend goes. I’m putting it all in DH’s lap this weekend, and giving him an ultimatum.

The whole idea of my FIL going to stay with my BIL is a disaster, IMO. They have 4 children, live in the middle of a city, and no safeguards. If he were to try to wander there it would be a disaster. My neighborhood is country and a lot of land between houses and almost no traffic on our road. Everyone on my street knows my FIL and his situation, but I still don’t want to end up with him lost.
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The end of May is a long time from now! You are the one taking care of him all day and this is why he's being difficult to you. Just like when we're the mom - kids are great, but they can give you a lot of guff too!

Having him go to the brother's sounds like it might not be a great idea due to the motivation. Just to let them see how he is behaving? Not a good enough reason. Nope.

As the caregiver, if you are done, then it's time. Have a little talk with hubby. If he wants to take some FMLA time to care for dad until he's ready to have him placed, that'd be a good but unlikely solution.

When can MC take him? Do they have openings?

Re: the picnic, I have mixed feelings about it. Personally, I could see where talking to him about the upcoming change and trying to involve him in it could totally backfire. Of course, he's going to say NO WAY am I moving here. But at this point, it's not his choice.

If the placement is not going to be soon, line up some home health services ASAP. Get yourself some help to help keep your health and sanity intact.
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Lilfarmer67 Apr 8, 2021
Good point about the picnic. They do have openings, they are pretty upscale, FIL pension is more than enough though.

I suggested home health to DH, he said that would make his dad angrier. I told him I don’t think he will be any angrier than he is with me right now.

Anyway, we both realize he needs to go, but DH thinks we have more time. I asked him to give me some concrete solutions to how to handle it now. He said let him do what he wants... l said what if he’s walking around the neighborhood and I try to get him home and he refuses? His answer... call him and he will come home (in 30 minutes?)

My 19 year old son lives here and if things got too out of control, I do have another person to help me if it comes to that. But still, I think we are looking at weeks, not months.
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You're "not in danger" until you're in danger and it's too late. Then it's too late. And the medical professionals will ask you why on earth FIL wasn't placed with a MoCa score of 5, long before things reached THIS point?

Or, worse yet, when FIL wanders off one day or night when nobody realizes it and he falls in the street, hits his head and lies there until he's found and someone calls 911. Which is what happened to a client I cared for suffering from dementia not as advanced as your FILs. His daughter didn't want to place him, either, feeling he was best off in his own home, "aging in place." Except he wasn't safe. He wandered off one night while his wife was sleeping, fell in the street, and died the next day in the hospital of a subdural hematoma. His funeral was a very sad event.

I wish people would understand that dementia is a very serious and dangerous condition where a person's symptoms can change and dramatically worsen on a dime, with no notice. A lamb can turn into a violent tiger with no warning and lash out at loved ones without "meaning it" but still cause great harm. Even thin frail elders can be quite strong when overtaken by rage from a dementia outburst. You just don't know WHAT to expect, is the truth of the matter.

If your husband wants to remain in denial about his father's serious condition and the need to place him, then HE should be in charge of his care and management, not you. Let him see and feel what caregiving a demented elder is all about, up close and personal, while you're staying in a nice hotel. Sometimes it's the only way for the wake up call to get delivered.

Good luck
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Lilfarmer67 Apr 9, 2021
My husband is not in denial, he knows he needs to be placed and the only reason he came here instead of a home before is because of Covid. It was a MUTUAL decision and I am an experienced caregiver.

The issue we have is that he believes we have a little longer longer than I do. I say weeks, he says months, that’s it. This does not make my husband a bad person. He does not move fast on any decision, never has.

No, I am not in danger, my father in law weighs 135 soaking wet and he does not have access to anything dangerous. My 19 year old son is here as well. We have window and door alarms and mats to alert us and I lock the outside doors. If my FIL is aggressive I will call 911.

I am in contact with his neurologist and she knows exactly where he is.

Berating my husband and me and repeating that he needs placed is not helpful because we know that. We know he needs placed and we are working on that. We are WELL aware how serious this all is.

My issue is stress and I am asking for ideas to keep my FIL safe UNTIL he moves. If you have any ideas along that line, please share them.
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I went through similar stuff with both parents. My mom, and I to a smaller degree, had been accommodating dads dementia because he would get so mad if you tried to correct him or talk to him about in home help or moving to “Senior Place” as I called it. To him he was just fine, the house was just fine, just got that sofa the other day. (1970)

He was not quite as bad as your FIL but it was too dangerous to leave them alone for a minute. Long story but I was finally able to bamboozzle them into assisted living. It was a big hot mess for awhile but still such a relief to not worry about dad burning the house down and know they were clean, clothed, fed, doing all their meds etc.

No disrespect to you or your situation but I’d like to slap your hubs a good one.
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Good Lord. This is dangerous for you, your pets, and your FIL!

The question is not "how do I cope until memory care", because there is no meantime. DH has no intention at all of placing FIL, and you know it. The real question is "How can I leave until FIL goes to memory care?".

Your husband is in denial, and it sounds like you're the one who does the brunt of the caretaking. Why? You should never have been put in that role to begin with! If he goes to work while you stay home, too bad. He'll need time off work while you are temporarily somewhere else. If DH wants FIL home so much, HE needs to be the one doing caretaking 24/7. Not you!

"Maybe I'll be ready in 2 months" is code for "I'll never be ready."

And DH doesn't want you to stop him from walking away?! He has NO clue about how bad it is, or he doesn't care, since it's your problem. Guess he's okay with waiting for you or your dogs to be hurt first.

If DH won't get off his a$$ and protect you and your dogs, then you will have to leave. With the dogs. Is there a friend or family member you could stay with for a bit? DH will then be on his own to deal with FIL and will see how bad it's gotten. He's blaming YOU for FIL's actions when it's obvious to everyone else that FIL is out of control.

Next time FIL is belligerent, very agitated or violent... call 911 and let them take him to a hospital.

You can't be on guard 24/7... your dogs are not safe in your home. YOU aren't safe in your home. He may truly beat or hurt your dogs in his dementia and rage. I am not joking in the least.

I'm sorry DH is leaving the work to you and blaming you because he can't face the cold hard facts right in front of him.

PLEASE. Get out of there. NOW.
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Lilfarmer67 Apr 8, 2021
It was a mutual decision to bring him here, it was a stopgap measure - we knew he would have to be placed eventually, but his behaviors have changed so rapidly. Before this he has been pleasant and easy to get along with. I think it has blindsided both of us, to be honest.

I have been a caregiver before, my MIL and my mom with ALS so I knew going in that there is a time that it becomes too much. We are at that point

Fortunately, I do not feel I am physically in danger - my FIL is small and frail. But the stress is not good for me.
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These two quotes say it all for me:

"I have heart issues and this is becoming a little more than I can handle."

"I have talked to DH and he says it may be a month or two before he’s ready to place him, he really wants him to go to my BILs house a week at the end of May so they will see his behaviors. I don’t know how we will make it that long. He refuses to consider a daytime caregiver/sitter until he can be placed."

Your health is not important to your H, because HIS need to "be ready" comes first. Why can't he go to BIL's house now? Does BIL's schedule mean more than your health, too?

And why does H refuse to consider a daytime caregiver/sitter?
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Lilfarmer67 Apr 9, 2021
Yeah, I don’t know what DH’s hesitation is about a caregiver other than it would make FIL more angry - but we are already there, so. Anyway, I need to push that suggestion more as a stopgap measure.
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I wrote below, before I read your replies to prior posters.

You have taken offense to suggestions that your situation is dire and your husband must step up now. You have made excuses for his delaying placing Dad. There comes a time in all our lives when decisions must be made quickly.

None of us live in your home or in your marriage. We can only comment on what we read and look at each post from our own personal bias and experience. We are not attacking you, we want to protect you.

It does not matter that it was a mutual decision to have FIL move into your home, it does not matter that you have former care giving experience. What matters is that providing care to your father in law is taking a toll on your health, physically and mentally. 2 months ago it was easier, but now it is not. In another 2 months, he may need 24/7 personal care.

No one is saying you do not have experience with care giving. But each care giving experience is unique. Many of those who have taken time to reply to you have parents and other loved ones who suffered from dementia. They are replying based on their own experiences.

Many welcome their loved one into their home, and it often is easy in the beginning,

It is the person who is providing primary care that should be listened to and that is what we do here. You have stated that you are worried about your own health. You suspect FIL did something to the dog on a walk that now has the dog fearing him. You are the subject to abusive behaviours. You fear your FIL may get lost. Your husband appears to not realize the toll this is taking on you. No one is saying your husband is does not care about you or love you, but we see a man who needs to step up sooner than later.

I had a family member die as a direct result of providing more care to others than herself. She was 42 years old and in good health. But she was worrying about others and a simple mistake, lead to her death. It was 100% preventable if she had had help.

Below is my original post.

Tell your husband on no uncertain terms that you have reached the end of your rope.

You can no longer provide care to your FIL. Full stop. Period.

Now it is time for your husband to step up to the plate. His choices are, stay home and provide care, hire care givers for every hour he is at work, or place Dad.

Next, go to your own doctor and talk about your situation, your stress level and your concerns over your own health. Ask your doctor to put in writing that you can no longer provide care without putting your health at risk. If you drop from a heart attack or stroke, your husband is going to have a lot more to worry about.

Then send a letter to your FIL's doctor reiterating everything you have said here. If you can do it in a chronological format, it will be easier to track the changes.

You can also ask to get a needs assessment done for FIL.

If none of this gets your DH's butt in gear, pack a bag and go away for a week or 2. I know money and covid make travel challenging, but a trip out of town and turn your phone off, may be the wake up call DH needs.
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Lilfarmer67 Apr 9, 2021
Thanks for this practical advice. I left a message with his neurologist yesterday, I should hear back today. I think it is a good idea to talk to my doc as well, I will see if she can do a telehealth appt today.

You are right that DH has to face that he only those 3 options and he has to make a choice now. There is no other way around it. I will insist on a decision this weekend.
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The most important reason for your husband to go to that barbecue is for him to realize that these places are not what they once were. Too many people have it programmed into them that nursing homes of any kind are where you sent your loved ones to die when you've given up, and that's just not the case any longer. A memory care facility would be so much better for your FIL, because he'd get much more mental stimulation, he'd be able to walk around in the sunshine (in a safe location), and he'd have others his age around him.

I think you should at least ask your husband to compromise and go to the BBQ just to check out the place once again. There's no commitment required at that point, but he really should be fair to you and do that much.

The idea of sending his dad to his brother's house is absurd. Yes, he'll be messed up because he'll be even more confused in a strange location than he already is, but it isn't a good thing to do to him. It isn't safe.
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In your shoes, if DH wants you to back off from following his dad around (and angering him) I would stop following him around.

Natural consequences.

Have you watched any Teepa Snow videos?

She has a lot of good videos on the management of dementia patients.

Clearly, FIL needs a care situation in which the "restraints" are built into the situation and don't come in the form of a "nursemaid".

My uncle with dementia became a wanderer. He and my aunt lived close to a major highway and she had deadbolts put on the interior doors and kept the key around her neck.

One of my cousins showed up for a surprise visit and found that his mom was being beaten black and blue daily for the key. He was placed and my aunt died of a massive heart attack shortly thereafter.

Stress like what you are under is deadly.
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